Time to ignore the beast and get on with fishing…..

Another day to notch up pain free. I managed to get through yesterday with out any problems and no sign of attacks appearing. I even went out in the cold and normally i would get signs of pressure building or aches and pains as the cold air hits the face but i didn’t this time. Before i get to excited i do have some shadow this morning. A slight feeling of pressure on the left hand side of the head and the neck feels a little sore, The back has been good for the last couple of days so i am hoping that will also start to improve as the weather does. I am sure it is the cold that is getting to my back and causes me to get the shooting pains all the time. Maybe they are right about the arthritis of the back and that's why the cold weather causes me so many problems.

I am just hoping these pain free days start to last as this is now the 4th day i have gone with out a major attack happening. I have had a couple build up on me and times where i thought i was about to get a nasty one but they have just eased away or disappeared just as fast as they came. These are the times that convinces me that the medication is working to stop the attacks from happening. the temperature dropped again last weekend and the start of this week so i thought i was going to have a load more attacks again but i was wrong. I managed to get through with no problems and only a couple of attacks but this last week has been good and the attacks have stayed away. Now the temperature is set to slowly increase as we get into the start of spring.

Its almost time to renew my fishing licence and get ready for my fishing adventures. I have been so looking forwards to going fishing and visiting the different venues around Wales. I am also booked to go on holiday with my mother and step farther to Cornwall for a weeks fishing at one of Cornwall's premier fishing spots, White Acres, a complex of 10 course lakes and 2 specimen lakes. So you can imagine i am going to have the time of my life, a weeks fishing at the start of Spring! I am then going to go on holiday with my brother later in the year at another fishing destination somewhere in the UK. i am leaving the details up to him and where he decides he wants to go as long a there’s good fishing i don’t care.

I have been spending a lot of my spare time re decorating and designing my web sites that will document my journeys and adventures as i fish these different venues. I will also be launching “fishingadventureswales.com” next month as this is the main site that leads to the blog and forum.At the moment it is hosted on a free server “fishingadventureswales.weebly.com” I could leave it on this server and it wouldn’t cost me a penny to host the site but i think having my own domain would be better especially now i have companies involved in the site. I am also now an official product tester for “Total Outdoors”, an online fishing store. I will get the chance to test new products before they get released on the market. I also get huge discounts on any goods i need for my fishing adventures so it saves me a fortune and already has saved a massive amount as they sent me samples of bait and tackle to start me off.

Its all starting to fall into place and my quality of life is beginning to improve slightly. I still have a long way to go before i become well again and i also know i will have this condition for the rest of my life and have to learn to control it with the medication. I also know if i stop taking all these strong medications i will end up back in pain and the attacks will return. I have to find the happy medium in which i can control the beast and still live a relatively normal life all be it as a disabled person. I think its about time i accepted that there is nothing i can do accept follow the specialists instructions to control the beast and get on with my fishing.

Still pain free during the day but for how long?

Its actually nice to be able to lay in bed till 8am in the morning and not be rudely awoken by the beast in the early hours. Its not until you have an illness like mine that you actually appreciate the time spent when you are not in pain. It’s like it takes over your life. All you can think about and talk about is your condition and the attacks you get. Constantly battling with pains in the neck and back and hoping that the big attacks don’t develop. Always scared to go out into the cold weather due to fear of the beast returning and you ending up with non stop attacks all day long. I am sure the new medication has had something to do with the sudden decrease in the amount of attacks i am getting. Even with the Pregabilin and Oxygen i was still getting between 2 and 4 nasty attacks in a day. Now all of a sudden i am looking at between 4 and 6 a week. Its a huge difference in my condition and the attacks seem only to appear when the weather is at its coldest or i do something stupid like carry too much weight in the one hand and strain my shoulder. I don’t seem to be getting the smaller attacks any more and only the big ones start when in extreme conditions.

If this continues it is starting to look like i will finally get my life back and get this beast under control. It will make a change for me being in the driving seat rather than the attacks dictating what i do all the time. I have had a bit of an attack this morning due to the fact that i let the gas run out with out turning the emergency on so when i woke up the flat was freezing cold. Normally if the flat drops in temperature i would be up at 2 or 3 am in absolute agony and would get attack after attack. I was lucky as i managed to stay in bed and didn't get any sign of an attack until i woke up and came into the living room. Then the beast was beaten back by the injections and the oxygen. I could be completely wrong and it could just be down to the time of year again and due to the fact that the weather is now slowly improving as we go into Spring and Summer. It seams i go through the same cycle every year. It starts of extremely painful with attacks constantly bombarding me through the cold days and the winter weather and then as it warms up the attacks become less and less only to start all over again when autumn comes. I am rally hoping that this time i am wrong and it is the medication that is helping.

Its so hard to tell as these attacks are so unpredictable and they always seem to have a mind of their own. Well fingers crossed that this is the start of good year for me and i will now become in control of my condition. I have to arrange an appointment with the ECG department to get some ECG readings done on a weekly basis so they can increase my medication as they won’t until i have had the ECG reading done. They are doing this as the Verapamil is normally used for heart attack patients but also seems to work with CH sufferers as well. the only trouble is i have to travel miles in order to get the ECG scans done. I don’t understand why they can’t use a scanner that is closer to me but even when my mother rang the specialist and informed him what was happening he seemed to become very angry as to why the doctor couldn’t arrange one closer to home. he has stated that if i need an ambulance to get there then i just have to tell them as a bus journey, on two busses for over an hour and half might end up in a painful attack as it normally does.

Pain Free…… well sort off!

Well at least i am not being woken up by the beast and big attacks first thing in the morning any more. The temperature seems to have warmed up and it isn’t as cold as it used to be. This morning i manage to have a nice lay in till around 7.30 am but had to get up as the abscess in my mouth was killing me. I managed to burst the abscess yesterday releasing the pressure so it didn’t cause me any more agonising pain and started a course of antibiotics. I think i did well to go into the dentist yesterday and actually book an appointment to have the teeth taken out. unfortunately the dentist is so busy they couldn’t give me an emergency appointment and said the only was to get emergency treatment because i had the nasty abscess was to ring the hospital dentist and explain that i don’t have a dentist yet even though i have registered with this other dentist, the registration will not start until i get seen on the first appointment.

The problem with going to the hospital is it was them that butchered my mouth in the first place, It was the hospital dentist that ripped out all my teeth, apart from 3, because they though that was the cause of my condition and it wasn’t until after they had done the operation and i went through hell that they found out it wasn’t the teeth that was the cause of my attacks. By that time it was too late. So there was no way on earth i was going to go to the hospital to get the abscess seen to. The pain i am getting from the abscess and tooth is only 1% of the pain that i get when i have one of my attacks so i can put up with it no problem. even to the point that i burst the abscess myself and cleaned out as much of the poison as i could. The pain i was getting was nothing compared to what i normally get so found it easy to do what was needed to ease the pain.

It is actually nice to be talking about something other than the attacks i keep on getting and nice to see that they are easing off as the warmer weather approaches. I am hoping it is also the medication that has put them to sleep and hope that this pain free period (ignoring the tooth pain) will continue. If it s the new medication that has helped to stop them from building then i might not have to increase to such a high dosage of the medication like the specialist thought. but i will have to wait and see as it is possible that the attacks could come back at any time. I still get the shadow if i go outside into the cold air and the wind starts to blow against the face. It starts to build as if an attack is about to start and then suddenly stop and disappear again. I am praying it is the medication doing this and is now causing a block to stop the attacks from becoming such a nightmare again.

With the nicer weather approaching its time to start my tour of the lakes and rivers of Wales. I have been spending my spare time redesigning the web site and blog so it looks a lot more professional and easier to follow our journeys. Its only about 8 weeks until we go on our fishing holiday at White Acres in Cornwall and i can’t wait. I am going to try and get in as much fishing and practice as i can before the event so this weekend coming i am off out fishing again as long as the weather allows me to.

The beast brought a friend!

Sunday morning i was woken by the beast around 4am but this time the beast was not alone. I also woke with one cheek looking like i had golf ball stuck in it. I had woken with an abscess, one of my teeth had decided to give me an infection and what a painful wake up call it was too. The head was going, the cheek was hurting and the tooth was aching and feeling like it was going to explode from pressure. I basically punched myself in the cheek where there was so much pain and was lucky i suppose as the abscess burst through at the base of the tooth and released the pressure. The pain started to ease in the cheek and only the tooth was aching so i had to use some Anbesol antiseptic to ease the tooth. The injection took care of the head.

I was lucky for the rest of the day Sunday and didn’t really get any more attacks from the beast and my back was also behaving itself. I had decided to go to my mums for dinner so was getting out of the flat for a bit. It was on the way home when the back started to hurt again. I am not sure what is setting the back off. Is it a nerve that is trapped or the same problem as my head  i just don’t know. I will have to wait until i see the back pain specialist before i get answers to that. I was again woken this morning but it wasn’t the beast this time it was the tooth and abscess again. The pressure has built up again and the tooth throbbing like crazy. Thank god i can go to the dentist late this morning as will have to get antibiotics for the infection.

It’s been years since i was last in a dentist and due to the hospital putting me through hell and ripping out all but three teeth as they thought the attacks i was getting was caused by the nerves in the teeth but as they found out later it had nothing to do with it. They also suspected it was actually in my jaw and cut some bone away from my jaw to test that theory but they was wrong again. I remember waking up and almost choking on my own blood where they had ripped all my teeth out and my mouth was still streaming blood from it as i woke from the sleeping aesthetic from the operation. The nurse shouting at me to bite down on this pile of wrapped up bandage so i could stop the bleeding and the pain shooting from my mouth was horrifying.

This is the reason i have not been able to go anywhere near a dentist to get the last three removed. I would rather put up with the pain than go through that again. I know the dentist isn't anything like the hospital its just i can’t stop thinking about it and then it puts me of going. Now the pain is slowly matching the same level as my head gets so it is getting bad and if i leave it something could happen so its time to go and seek help. I will just have to go to the dentist and try and put everything out of my mind. If i get the antibiotics to get rid of this infection i can then book in to get the teeth finally removed and get some new ones. Its about time i got it sorted so fingers crossed and wish me luck. i am not looking forward to the next couple of days.

If it’s not one *B* it’s the other *B*… my “B”ack this time!

Again i was wide awake at 4am this morning. Not from the beast but from my back this time. Aches and pains worst than having a tooth ache. No matter what i did i could not get rid of this awful ache in the back right in the middle. I tried to massage it but it was deep and it felt like i couldn’t reach it no matter how hard i pushed my knuckles into the back. I tried stretching, i tried bending, nothing was working. I tried laying on the floor for a while so i knew my back was straight but still all it did was ache. It wasn’t until i took some anti inflammatory tablets, that took around half hour to take effect, the ache in the back eased off. By the time it did ease i was already wide awake and there was no way i could get back to sleep. I tried laying on the bed in the dark but i could hear every noise inside the block of flats and outside the block. As i was trying so hard to get back to sleep the noises seemed to be amplified and sounded louder than they normally are. It was a wasted effort so after about 30-45 minuets i gave up and walked into the living room to watch some TV and see if i can bore myself to sleep.

Yesterday i managed to go the whole day with out having an bad attack so the one that was in the early hours was the only sign of the beast. i haven’t yet had any sign of an attack build and my neck is behaving itself at the moment also. I do have a tooth ache at the moment so am waiting till Monday and i will finally have to give in and go to the dentist no matter how much i don’t want to. At least if i go i will finally get the last of my teeth sorted and then they can start to build me a new set.

I started my new medication yesterday, Verapamil 80 mgs, so i am hoping this will soon start to help keep the attacks away and i will start to get longer pain free periods. You never know it could be why i haven’t yet had a sign of an attack this morning. I thought, with the nasty attack i had yesterday in the early hours, that my pain free period was over and i would be getting a run of bad attacks again. So far i have had nothing. A few small pains up the back whilst i am sat at the computer typing but other than that and a little bit of tooth ache i have been feeling well this morning.

Well only time will tell if it is working. I know for sure if i go out in the cold and i stay out for a while i will get an attack as i went out yesterday to call over my mothers and a nasty attack started to build. By the time i got to my mothers i thought i was about to have a massive attack the way my head and neck was feeling but suddenly it just stopped. So i remained pain free for the rest of the day. This has happened a couple of times to me lately, where the attack starts to build up and you feel the pressure and an ache in the areas that the attack normally effects and then suddenly it stops.

I am wondering if it is the medication that is doing that and stepping in to stop the attack from developing. Ever since i started taking the Pregabilin tablets i have noticed a big reduction in the amount of attacks i get and especially in the amount of big attacks. Now that i am at the max dose of 300 mgs in morning and 300 mgs in the evening i have noticed strange things happening when i get attacks like them suddenly disappearing before the main pain begins. I am sure as time goes on the tablets are building up in my system and that could be what is helping to stop the attacks. Now with the new meds maybe it will put an end to them full stop.

The trouble with my condition (CH) is that it could all be just down to the weather changes and now that we are heading into Spring and the temperature is increasing we are getting more high pressure fronts over us and less low pressure meaning better weather. My attacks start to get less and less the more closer we get to summer and warm weather. We already know that cold is a trigger for my condition and heat helps to ease the pain so it only makes sensei get less attacks depending on the time of year. I am just hoping it is the medication helping to improve my condition and not just the normal cycle of my condition and i end up back where i started from next winter. I don’t know if i have the strength to cope with it all again. things are improving at the moment and i just want them to start to let me live as normal life as i can. i don’t mind having to manage the condition with the drugs and treatment. having to take an injection when an attack come doesn’t bother me and as long as i have my oxygen to help also i can cope with a couple of attacks per week. Just wish they wasn’t every day.

The beast woke me again, but at least there is now light at the end of the tunnel….

Again woken by the beast at 2 am this morning with an attack but thankfully i managed to get back to sleep and then woke up again at 5 am. Its strange as i continued to be pain free for the rest of the day yesterday. It seems like the attacks have now moved to the early hours only, as that is the coldest part of the day. I am now positive the medication is keeping the attacks from appearing during the day so hope that now i will introduce the new drug Verapamil the attacks in the morning will soon be a thing of the past. I popped over my mothers yesterday to take some tobacco when i started to get pains in the neck and thought that an attack was about to start but thankfully by the time i got indoors and had a cup of strong coffee the attack just disappeared and no big attack developed but i did have neck and back pains. As i walked over to her house i could feel the cold on the neck and the head trying to aggravate my condition. It didn’t matter that i had wrapped up and was wearing my woolly hat to keep warm.

I am grateful that no other attacks developed during the day yesterday and hope that i can go the rest of today with out any attack also. With the weather a little unpredictable at the moment means the cold weather is still causing me problems so i still have to be a bit more careful what i do. I wanted to fish the competition on Sunday being held at Cefn Mably lakes but with the temperature forecast to drop again over the weekend it doesn’t look like i will be able to. I will just have to wait and see what the weather is like on Saturday and then make up my mind. It is forecast to be warming up again by the end of the week and then looks to be gradually getting better as time goes on so looks like it is the start of Spring. I can’t wait for the better weather and longer days as i will get so much more fishing in this year. This will signal the start of my tour of the lakes and fisheries of Wales. I also have to remember to renew my fishing licence next month otherwise i could risk a fine and my fishing tackle being confiscated if i am caught fishing with out one. So it is better not to risk it and make sure i have them, more expense.

Ever since i have returned to the UK from Cyprus in 2002 i have been shocked at the price of things especially the price of fishing tackle. I remember when i was younger and it wasn’t so expensive to go fishing. A little set up wouldn’t cost more than £20 and then your membership to the fishing club of the area. This would entitle you to fish certain rivers and gravel pits free of charge for a year. Here in Cardiff they don’t do that sort of thing either that or they have changed it and now even with the membership you still have to purchase your day tickets. I don’t see the point in joining the clubs any more as it is just as easy to pay the full price of the day ticket and fish for the day that you want and not have to pay for yearly memberships. If you do have a membership you only save £2 per day so its not a huge saving, considering the cost of membership per year is anything from £50 to £200 depending on the club and even if you fished “every” weekend through the year it still wouldn’t save you enough money to warrant getting a full membership.

I am starting to rattle on and go off the subject of my illness now, makes a change from all the moaning and groining from pain all the time. Its nice to sit at the computer and be pain free for a change as even my back is behaving itself this morning but for how long, i don't know. I am hoping that it isn’t too cold outside today as i have a bit of running around to do. Every Friday is my payday so i have to go shopping and pay all the bills including electric and gas. My gas bill is enormous lately as i have had to keep the flat in the 15 and above degree mark. If the temperature of the flat drops below 10 then i start to get attacks and the head becomes very bad. I know it sounds crazy but that's just the way it is. I have tripled my gas usage in the last year due to my head attacks and have never spent so much money on utilities before now.

At least with the winter coming to an end and the temperatures rising i will now use less and less gas each month so my bill will be going down and my money in pocket going up. I am just hoping by next winter i will have these attacks under control once and for all with the use of medication and oxygen on a daily basis. I don’t mind having to do this as it keeps the attacks away and i have finally come to terms with the fact that i will now have this condition for the rest of my life. It has taken me a while to accept the fact of my condition as i was hoping for a quick fix. Something inside me told me it was something on the head that was causing the swelling and that was what was causing the attacks to be so bad and so regular. Now i have had a scan and they have shown me that my head is clear of any problems it is now easier to come to terms with the condition.

As the specialist said i have to start concentrating on not getting the attacks in the first place and not worry about the actual attack itself as there is nothing i can do about them apart from let them take their coarse. There is no pain killer that will stop them. The injections are the only thing that will help to abort them and with the use of the oxygen it helps to reduce the size of the attack and the amount of time you have to suffer when one appears. There are a few other things i can try, such as nasal drops or going into hospital and being put on a drip, in order to reduce the amount of attacks i get. He has offered me to go into hospital just for some rest if i get a long period of attacks with no sign of break, so its another option i have available in order to deal with this condition. With all the help and support i have from my family and friends and also the doctors who are now on my side and doing everything they can in order to get the attacks under control, the future is starting to look bright and finally, after many years, there is a small light appearing at the end of a long twisted tunnel.

Beast woke me at 2am just to remind me how painful CH is….

Unfortunately i only managed a pain free break of 5 days as i was again woken by the beast this morning with an attack from hell. Just to remind me of how painful this condition is. The pain this morning just kept on increasing no matter what i tried. The injection failed to work and no amount of massaging or rubbing was going to stop this attack. Normally when i massage my head it helps to ease the pain but this time it wasn’t. All it did do was aggravate it to the maximum and make the attack feel even worst than it already was.

The beast actually woke me at 2am this morning but the attacks lasted just over an hour and by the time i got back into bed i was exhausted and couldn’t hardly move my back. The pain i was getting in the middle of my shoulders, because of the head, was making my eyes water constantly. No matter what position i laid in or sat in i couldn’t get comfortable or stop the pain in the back. It was about 7 am this morning when the back pain finally eased off enough for me to get comfortable, but by that time i was already wide awake. So any chance of getting back to sleep was gone, and yet again i have been up all morning trying to deal with pain.

I have to take comfort in the fact that i know the doctors and specialists are trying every thing they can and investigating all areas including my back to see if they can find out what is causing it to be so bad all the time. I remember when i only used to have the attacks every month or every couple of months. When i used to think it was just migraines and i would eat as many pain killers as i could get my hands on, to get rid of the pain, but nothing seemed to work. Back in them days at least the attacks were only once in a while and not every day like they are now.

I am hoping with the change in the weather and more warmer fronts coming I will get a lot more pain free periods and they should last longer than just a few days. I used to get weeks in between attacks instead of days so i am hoping to go back to a time like that. If i can get them only to appear once in a while then i can live with the condition if it is manageable with the medication i am now on. I don’t mind having to live with these attacks as long as i am the one in control and not the attacks. It makes me mad sometimes when i only get a couple of days break and then i am back to attack after attack. It makes me feel like i am being punished for something i have done in my younger years or a past life, but surely no one should be punished and left in this much pain all the time, its crewel to let anything suffer in such a way.

If a dog had this condition or another animal i am sure we wouldn’t leave it in pain all the time and would eventually put it to sleep rather than let it suffer. And NO i don’t want to be put to sleep, i just want a way of controlling and stopping the attacks. Something that works better than these injections as i can only have two in a 24 hour period and sometimes i can get 8 or 10 attacks in a day. Ok only 3 or 4 will be massive attacks that i would normally use the injection for as the others would be smaller and more manageable and i am able now to ride out the pain of the smaller attacks.

The only way i can describe the difference between a small attack and a big one is that a large attack is like having your legs and arms cut off slowly with a blunt saw and no pain relief or anaesthesia would be used and no pain killer will stop the pain. The smaller attacks are like having tooth ache and can be ignored with the help of an anti inflammatory pain killer. Both of the attacks seem to leave my back in agony and both end up making me walk funny and constantly get shooting pains up and down the spine.

I can only assume it is because of the damaged nerve and as the nerve swells up in the head it must be swelling in the base of my neck and at the top of my spine. This will in turn make the other nerves in the spine tender and that is why i get the pain down the back. The pain at the top of the spine between the shoulders and in the neck is from the head attacks but the pain at the bottom of the spine and when i walk is from something else. Until i go and see the back pain specialist i won’t know what is causing it and just hope as the warmer temperatures come with nicer weather this will improve and i won’t be in so much pain all the time. I am hoping it is nothing serious and can be dealt with by means of medication and physiotherapy.

Well for now all i can do is try not to move around too much and hope the pain stays away for the rest of the day. The sun is shining outside even though the weather is feeling cold and the forecast doesn’t look like it is going to warm up till the weekend. There is a fishing match on Sunday at one of the local lakes being held by my local club Llanrumney Angling Club, which i am a member off, so i should try and show face and go and fish the match. I can only do this if my head starts to behave and the weather isn’t too cold. Fingers crossed as it means i will get to go fishing again. I don’t know why i have fallen in love with fishing so badly this time around. I know i loved it when i was younger and would make any excuse to go when in the summer holidays, but never imagined i would be doing it again i my late 30’s and early 40’s.

Fishing seems to calm me down and take my mind off all my worries. It really does have a strange effect on me, as when i get my the lake side and start to think about water craft and how i am going to catch the fish, all the pain in my back and neck seems to ease away and i don’t even get a twinge in my head. If i move to suddenly or try and lift a heavy weight then yes, i do get shooting pains up the back and pain in the base of the back. But if i sit still and relax in my chair, whilst fishing, all the pains go away. It helps me relax and is enjoyable at the same time.

By the end of a days fishing i feel shattered and when i get home i am guaranteed a good nights sleep. The only trouble is as son as i finish fishing and head home the aches and pains start to slowly appear again and remind me that i am suffering from CH and how painful the condition really is.

Not just pain in the head, its also in my back!

To be honest i am not surprised to be awake at 4am this morning and yet again no attack that has woken me up just a slight feeling of pressure on the side of the head today. This is the shadow feeling that i talk about all the time and its a horrible feeling. Like someone is constantly pushing down on the side of your head and you can feel the swollen nerve along the top of the head. This is something that would normally set of an attack but since i have started taking the Pregabilin i have been getting less and less attacks each day and the shadow doesn’t always set off an attack.

I saw my doctor at 4pm yesterday to discuss my future treatment and what is going to happen. They are starting me on the Verapamil at 80 mgs twice a day as well as keeping me on the Pregabilin and this will then increase either weekly or fortnightly depending if i can arrange an ECG local or not. As there is a risk to my heart with all the different medication i am on they have to do an ECG each time they increase the dosage just to make sure nothing will happen to me. That way if they see a problem arising they can discontinue the medication. At the moment the ECG are done in Barry for some unknown reason and that is a long journey for me to go. It would take me 2 busses to get there, if i am able to go on the bus. Half the time i am just too bad to be able to ride on a bus so may have to arrange an ambulance to come and get me.

If we can contact the specialist and ask for the ECG’s to be done locally or at the Heath Hospital then i will be able to do the weekly increases as the specialist requested but if not then the doctor will have to wait for the results and can take up to a week for them to come back from Barry so i may have to increase every two or three weeks instead. Its good news that the medication is working as the specialist hoped it would and that hopefully with the combination of drugs i should be able to manage my condition. We are hoping that the attacks will go into remission and that will stop all these pains i get all the time.

With regards to my back it is agreed there is something else going on and the worry of arthritis in the spine is a reality. The doctor is now referring me to the Back Pain Specialists to see exactly what is going on. The trouble is it also looks like i will have to go to Barry for that appointment as well. This could be a couple of months of painful travelling ahead of me if i can’t get them changed to my local hospital.

The doctor was also talking about sending me to Physiotherapy to see if they can help with the pains i get when walking and sitting. I don’t like the sound of being put on a tread mill and told to walk as far as i can whilst they gradually increase the angle to see where and how the pains appear. It all sounds like torture for no reason. They know i am getting pain in the back i can’t see why they have to test the theory and see me suffer but if needs must then so be it!

Well lets hope its another pain free day today. I did well yesterday and didn’t get an attack until i went over the doctors. I think the attack only came on as due to the sun was shining i didn’t wrap up like i normally do if the weather is cold and just went over in a sports coat. I could feel the cold on the top of my head as i was walking so i am assuming that is what triggered the attack as there was no sign of one building before or after my doctors appointment. Normally i feel an attack building and can prepare for it but the one i had yesterday was only a small one and there was no sign it was about to start it just decided to begin when i sat down in the doctors waiting room to wait for my appointment. Thankfully i took my injections with me so took it at the first sign of pain and within ten or fifteen minuets the pain stopped and the attack aborted.

Lets hope the “Pain Free” period lasts this time.

It looks like my head has now messed up my body clock as I am naturally waking up at 3-4am and not feeling tired at all. Due to me getting up early hours so many times during a week I am now waking up at that time whether I have an attack or not. I don’t mind so much as long as the pain stays away i can handle waking up early each morning. It makes a change not to be in pain when typing up my blog. I continued to stay pain free all day yesterday and even though my back did play up a couple of times it didn’t set of a full attack in the head like it normally does. I am hoping this is the start of a long pain free period as the weather is also on the change. As the seasons start to warm up I get less and less attacks. Its crazy how the weather has such an effect on my head and the attacks I get. Especially if there is a low pressure front passing over us then my head gets really bad and I can get anything up to 8 attacks during a 24 hour period and at least 75% of the attacks will be massive ones.

When I first started this blog I wasn’t sure what I was going to write or how I would write the information about what is happening to me and that was why I decided to make sure I wrote them first thing in the morning so I didn’t forget any details of what was happening and how the attacks were progressing and how the medication was effecting me. As time has gone on and I read back through the posts, I have made, I can clearly see certain patterns that have emerged and shows me how and when I get the worst attacks and what seems to trigger them. As for the cause of the attacks I am still in the dark and we are still investigating it with the specialist.

I have my appointment with the doctor today at 4pm and have to ask now for a referral to investigate what is going on in the back and why i am getting so much pain in that area. it could be due to arthritis as the specialist suggested or it could just be my muscles playing up. Its so hard constantly wondering what is going on and why i am getting so much pain lately. even last year when my attacks were at their worst i didn’t get any problems with the back as it was just the head that used to set off. Mind you i was getting so many attacks back then i couldn’t move if i tried. they used to be so bad and so painful that i would pass out a couple of times before the attacks would stop and would end up in agony for hours after. if i moved any part of my body i would get shooting pains up the spine into the back of the neck and between the shoulders. But the base of my back always used to be ok.

Its only lately, starting in October 2012 i started to get sharp pains in the base of the back right in the middle. If i moved it was agony and if i walked it was like lifting lead weights on my shoes or feet. if i try and carry heavy shopping in my right hand i would get sharp pain in my back on the left side and it would spread into my bitt cheek. I have been told that is a classic sign of arthritis so now i have to go and get checked just in case. It could be the arthritis that has made my attacks so bad and in turn made my bi-Polar disorder play up something terrible as when i am well it doesn’t really bother me. There could be a couple of different things going on contributing to my condition and making it worst. Hopefully now with the medication and the reduction in the amount of attacks i get we should hopefully start yo get to the bottom of this and find out why i have suddenly gone so bad in the last 2 years. I can’t believe it has been nearly 12 years since i first had an attack and it took them 10 years (until i became chronic with attacks everyday) to finally diagnose my condition and explain what and why it was happening to me.

I am still pain free today and the back is being good to me this morning and i haven’t had any pains yet and no signs of attacks building. i don’t want to speak too soon and end up getting a big attack later but i think they have gone to sleep for a couple of days. If that’s the case i should crack on and do all the things i have been putting off because they could case me to have an attack such as painting the walls in my hallway. Using the roller seems to put strain on my arm and shoulders and it ends up causing me pain and setting of an attack if i do it for a long period. its the same when painting with an brush or trying to reach high areas where i have to stretch my arm above head height. I can only keep my arms up for a little while before they start to ache and then the pain comes and the attack follows. knowing my luck if i try to do anything to soon i will end up getting an attack and ruing my pain free period.

Pain Free and a promising start to the year….

I managed a nice lay in this morning with no sign of the beast or an attack building. I continued to get pains in the back yesterday but it didn’t set off the head like it normally does and i managed to go pain free most of the day. Again this morning i am pain free so looks like i have a break period and may get a couple of days with no attack. I am hoping that is the case. its been a while since i had a period that lasted longer than 2 days break from the agonising pain but any type of break is welcome.

I am hoping it is due to the weather improving and starting to warm up as now i know i will get less attacks in the warmer weather and won’t get any where near the amount of attacks in a day like i did through the winter. With the new medication about to start, as i have my appointment with the doctor tomorrow at 4pm, i am sure i will eventually get these attacks under control and hopefully put this beast asleep once and for all. I am not sure what they will do when the beast is asleep and the attacks have stopped. If they will take me off all the medication or reduce it to a smaller more manageable amount as the amount of tablets i am taking at the moment is playing havoc with my stomach and making me feel sick all the time.

With all this nice weather and the sun out shining we should be able to get some fishing trips in before our holiday in April. We managed to go on Saturday despite the fact that the fog didn’t lift all day and tested our fishing skills to the max. Even though it was damp and wet we still managed to catch fish even though the water was so cold it felt like you was holding ice when you was unhooking a fish. We made sure we wrapped up properly and managed to enjoy a good days fishing despite the cold conditions.

With the turn of the weather and spring just over the hill i am looking forwards to a good year this year. Hopefully i will finally get to manage my condition now i know and understand what it is and why it is happening. I also feel it will be a good year for “Fishing Adventures Wales”, which is a web site i have created all about our fishing adventures and have a lot of people who follow our outings and read all about our adventures online. With this blog and my other sites i have plenty to keep me busy and keep my mind off my illness. 2013 is starting to look like i could be my lucky year, well i certainly hope so anyway!

The Beast wanted to say good morning, again!

Yes you have guessed it ! ANOTHER early morning wake up call from the beast. ARRRGGGHH! I could scream sometimes. I am so fed up with being woken up early hours of the morning and not being able to go back to sleep. It wouldn’t be so bad if i could get some more sleep and rest but as soon as you have had an attack you are wide awake and constantly getting shooting pains so even if you are feeling tired and drained you still can’t fall back to sleep. No matter what position you sit or lay in you keep getting aches and pains so constantly feel uncomfortable.

I had a great days fishing yesterday and not a sign of pain in the head. The back played up a bit but that was only due to it being cold and damp. the weather had forecast Fog in the morning and then sun in the afternoon. It took so long to burn the fog off it was almost over when the skies turned blue and the sun decided to show its face. By the time it became clear the say was almost over.

Despite the weather conditions i still enjoyed myself and relaxed. It strange how i suddenly relax and think of nothing except the nature around me and the fishing. Trying to work out where and how the fish are feeding and how they are reacting to the weather and conditions of the lake. I suddenly become a different person calm in everything i do. I don't know why all i know is i just enjoy fishing and doing something i love so much helps to calm me and stop all the worries about my condition and tis seems to keep the attacks away.

I felt completely exhausted when i got home yesterday and ended up having a nice hot bowl of soup and went straight to bed early. So in reality i have had plenty of sleep so it doesn’t matter i have an early morning start to the weekend. I will be going over my mums later for Sunday dinner and Brian, my step father,will be cooking and i have say he is a brilliant cook and i can’t wait as i know its going to be delicious. Then its back here and time to clean the fishing tackle. I hate this time of year as its so wet all the time and you get coated in mud when you go fishing no matter how hard you try to avoid it you always get mud on all the equipment. So its clean , clean and more cleaning.

For now all i can do is sit and relax and watch some TV and hope the shooting pains in the back and neck will ease of by lunchtime, when its time to go out, as i don’t want the weather setting off an attack when on the way over to my mums house. The amount of times i get attacks when walking to and from a place is a joke. They always seem to be the worst attacks ands the most painful so you have to retreat back to the flat, where i feel most protected and safe, as i have oxygen and my medication around me.

Even though i have my injections with me when i go out anywhere i still always feel anxious in case anything happens. It’s embarrassing when you are screaming in pain and your face is swelling. There is nothing you can do about it except wait for the injection to work or the attack takes it course. People always think you are having a stroke or heart attack and try and help. Its nice to see people care but when your are in full attack all you want to do is be left alone.

Looking forward to a day fishing.

Another early morning start caused by the neck and not the head this time though i ended up getting a full attack with the wake up call. The pain in my neck kept on sending sharp shooting pains over the top of my head. This caused me to have another horribly painful attack. My head feels like it has been split open with a blunt instrument, my eye feels like it has been gouged out with a spoon and my neck feels like it has been broken in two. Each time i move i get the pain in the back and then the neck starts again so i can’t win when its like this. I am just hoping to god a few pain killers will help ease the back for the day as we are planned to go fishing in a few hours.

I can’t wait to go fishing, i have been looking forwards to it all week and don’t even feel tired this morning even though i was up so early. I managed to get to sleep early last night around 6-6.30 so i made sure i had plenty of rest. i don’t know why but something told me i was going to be woken up again this morning so i planned in advance. I am just hoping that the pain stays away for the rest of the day and its going to be warm enough for an enjoyable days fishing. The weather forecast is very good and advertise clear skies all day with a temperature up in the 9 to 11 degrees range which is pretty warm for this time of year so hopefully will encourage the fish to feed.

Well its only a short post this morning as i am going to try and lay on the couch and pinch another hours rest if i can manage to drop of to sleep that is. I know today will be quite warm so i haven’t got to worry about wrapping up only keeping warm for the first part as it will be cold first thing in the morning but will soon warm up by lunch time. Lets hope my head and neck behaves itself and stays asleep.

What a pain in the neck!

I wasn’t woken by the beast but instead by my neck causing me pain. Each time i get an attack my neck feels like there is a ball stuck inside it and i get really bad pains where the nerve is obviously swelling up. The trouble with this is the pain i get in my neck almost every time ends up setting of a full on head attack that can last for anything up to 2 hours in total. These attacks are some of the worst i have ever experienced and they are the ones that scare me the most as i am sure i am going to have a heart attack or stroke when these attacks happen. It doesn’t matter if i take my injection or stay on the oxygen nothing seems to stop the attack. My chest tightens and it gets hard to breath even with the oxygen on full and the mask stuck around your face.

The pain is so strong i have passed out on several occasions only to waken to loud ringing in the ears and immediately more pain. The face droops and the eye swells up and won’t stop running with water.You can’t stay still as the pain is so strong all you can do is thrash about hitting your head in hope that the pain will stop. Once the pain eases away as fast as it has appeared you are left feeling like you have just run the marathon about 10 times over. You can hardly walk as the aches and pains in your back for 1 to 2 days after a big attack remains sore and you get shooting pains up into the back of your neck and between the shoulders.

Every time i walk some where i get bad pains in the base of my spine spreading into the butt cheek. The pains are quite strong and if i carry a heavy shopping bag in my right hand then i will get very bad pain in the back and in the left butt cheek but if i swap hands the pain disappears. I have spoken with the specialist about this and he believes it is something else going on in my spine at the same time as i am suffering with CH. Now having to ask for a referral to scan my spine looking for arthritis of the spine is not something i thought i would ever be doing. I know it is in my family and my mother and brother both suffer badly with arthritis and both have problems with their spines but i thought it may have passed me by. Looks like i was wrong!

Although things seem bad at the moment there is some light at the end of the tunnel. They are starting me on my new medication soon so hopefully this will end the rest of the attacks i am getting. I believe the Pregabilin has worked but needs help to stop the attacks completely as it has definitely halved the amount i get. Now with the other drug i should be able to keep this beast under control and hopefully get a  lot more pain free days than i am currently having. The weather is looking to improve this week and warm up again so it looks like i will be going fishing again on Saturday. Hopefully, if it is warm enough, all of us are going including my mum and step father so it should be a good day out. Its these fishing breaks that are keeping me going and keeping my mind on something other than my health. I don’t know why i relax so much when fishing but its something i love to do and now i will have plenty of time on my hands to do it.

Woken by the Beast and feeling drained….

You would think i would be used to waking up in the early hours due to my head but no matter how many times i get woken it always feels like the attack drains all my energy. I can’t go back to sleep no matter how hard i try and the head always feels like it’s about to explode under pressure. That's how i was when i woke up at 3am this morning! Yet another early morning wake up call from the beast again due to cold weather as i could feel the cold ring around the top of my head once again. As soon as i got up i had to turn up the central heating and place my head near the electric fire to warm it up quickly. As soon as i got heat to my head and neck the attack began to ease away. It just goes to show how the cold does contribute towards my condition and how it is one of the main triggers for setting off attacks all the time.

Yesterday was quite a bad day as i continued to get attacks through the day. I haven’t had a day like the for a while. To be honest i had thought the medication is working as i have been only getting 1 or 2 big attacks during the day and most of my nasty attacks late night or in the early hours. Yesterday was different as the attacks didn’t ease off like normal and just continued to build up during the day and cause me agonising pain. i had attack after attack and ended up spending the day laying on the top of my bed constantly massaging my head because of the pain all the time. I took my injections which did abort 2 of the big attacks but after that i was on my own. I would have used the oxygen but i was in so much pain i just couldn’t walk into the living room to sit in the chair to use it. My back was getting shooting pains constantly up and down the spine and making it uncomfortable no matter what position you was in.

Thankfully i don’t think i will be getting a repeated performance of yesterday as after my attack this morning the head has eased off and i am not getting any sign of the shadow. I am still getting smaller pains in the back but nothing i can say that is causing me big problems. As long as i am careful today and make sure i wrap up if i go out then i should be ok. Hopefully we will be going fishing again on Saturday so i am really looking forwards to getting out of the flat and doing something i enjoy so much. It depends on the weather if it is warm enough. I have been watching the weather closely as i don’t want to be sat out in the middle of a windy wet day with icy winds blowing straight into my face for the sake of fishing. This will surely set of an attack and would make the whole trip un-pleasurable. So fingers crossed for some good weather this weekend,

Stuck with the beast and nothing i can do about it!

You know i get so fed up with this stupid head waking me up early hours all the time. Again this morning at 3am wit yet another attack and a head from hell. The pain was so bad this time it has left loud ringing in my ears and a ball in my neck. Each time i move my head i can feel a pulling sensation over the top of my head and a sharp pain just above the eye as well as behind the eye. This must be there nerve that is damaged swelling up and i can feel it when it does. It has lasted just over an hour this time and even though i was using the oxygen it didn’t seem to help to reduce the attack as it normally does.

I had my meeting with the specialist but didn’t manage to ask the questions i wanted to. He was so busy because of all the other consultants being off sick and he was having to do the work of 3 doctors he seemed as if he rushed through everything but he did explain everything to me clearly so i could understand. Basically they found nothing in the head scan that was causing my CH to be worst than it is. The attacks i am getting are the normal ones that come with this condition and the pain over the head and into my neck are from the attacks. The pain in the back is something different that i have to get my doctor to refer me for an x-ray to look into the possibility of arthritis of the spine.

I have been worrying so much about the attacks themselves and trying to deal with the pain instead of concentrating on the actual cause of the attacks and trying to avoid the cause. He said using drugs we will build up a level of resistance which will put the attacks to sleep so to speak so i wont get them in the first place and won’t have to worry about dealing with the pain. It may take a combination of drugs to get this result. He has told me to stay on my medication of Pregabilin at 300mgs in morning and again in the evening and now adding a drug used for blood pressure and heart attacks.

This drug in high doses also help with my condition. Having to have such high dose means there is a small risk and very rare chance that it can cause a heart attack so each time i increase the dose i have to have an ECG, this means going to hospital every week. the drug Verapamil will be increased each week until i hit the right dose that stops the attacks, we are starting on a dose of 80mgs which is being increased by 80 each time.

So it looks like i am stuck with this condition and there is nothing anyone can do about it apart from trying to get the beast to sleep using strong drugs that also has a risk to my health. I am already feeling ill due to the amount of tablets i take and constantly struggling with stomach issues when i never used to have. The pain that travels in the nerve is not just causing my neck to hurt but also my back with another issue being aggravated and now looks like i will end up having problems with walking and moving about in the future as arthritis sets in.

Although the future looks grim it does mean i will have plenty of time on my hands to do something i love so much, fishing. Even if i loose some mobility with the help of wheel chairs i will still be able to go fishing and enjoy the sport. I know my mobility will not become a major problem for a few years yet so i have lots of time to catch me a record size fish. You never know i could get one while i am on holiday in April. I am so looking forwards to it as it has been a long time since i had a holiday and chilled out. I could have 7 days of non stop fishing if i wanted but i wont as i want to take a couple of days out to take a look around the area and see the sites. Come on April hurry up!

A couple of pain free days at last….

So much for a nice lay in this morning as i was woken by 2am not by an attack but by my body deciding to play silly beggars with me and cause me agonising pain in the back. I couldn’t work out why it was doing it. At first i thought it was a bad dream and i couldn’t get comfortable no matter what position i lay in but then i realised i wasn’t dreaming at all and that the pain i was getting was real. It took me a while for it to sink in but i suddenly realised i had forgotten to take my Pregabilin since Saturday. I had gone the whole of Sunday with out taking any medication and now the body was telling me i had forgotten and decided to go into withdrawals. I only realised what it was due to me having to go through withdrawals from other drugs and medication before and i recognized the symptoms otherwise i wouldn’t have had a clue what to do.

After taking my medication it took a couple of hours for the medication to start working and the back began to ease away and the muscles in the back of the legs started to relax again. Thankfully the pain was gone. It is strange how the body behaves especially when you have been taking medication for a long period of time and the body gets so used to it. As soon as you take that medication away the body soon lets you know what you are missing. It’s only due to the fact that i believe the medication is working that i am still taking it otherwise after this mornings little exercise i would stop it straight away. When your body starts to behave like that due to an addiction of some sorts you know it is time to ease of and stop taking so much, but in my case i have to continue taking it otherwise the attacks may come back just as bad as they were when they first started.

I have managed a couple of days pain free so far and to be honest i was expecting Sunday to be very painful after a cold day sat by the waters edge on Saturday fishing. I normally expect to pay for my day out with a full day of not being able to move as it keeps setting off my head and causing me massive attacks but this time it didn’t work out that way. I am so grateful as this could be a good sign that the attacks may be slowly coming under control. I hope so as i could do with a few more pain free periods like this, just to get me out and about again and stop locking myself away all the time in the flat. I did enjoy myself Saturday even though i didn’t catch myself a massive Carp.

Its strange as the swelling on my scar on the left side of the head is back up again but there is no soreness like normal. It could be the change in weather again is about to cause me some attacks so i have to make sure i keep warm and avoid anything that may set them off again. I am at the hospital this morning, why i don’t know, as they have had the results of my head scan and found it to be clear. Its like there is now way of fixing this problem and i will have to put up with the attacks for the rest of my life. I wouldn't mind so much if i had pain relief to go with the injections but nothing seems to work. Each time i get an attack it feels worst then the last (if at all possible). My back has been getting a lot worst over time and i am now finding it difficult in just walking let alone sitting. No matter what i try i can’t seem to get comfortable so i am going to have to ask the specialist what is causing it to be so bad.

There are so many questions i want to ask but don’t know where to begin. It seems as if my condition is getting worst over time but when i tell the doctors it’s as if they just stop listening and don’t seem to do anything about it. The specialist is the first person to actually do something about my attacks and not just fob me off saying it must be migraines or headaches that is causing it. How can a human body be in so much pain all the time, surely they wouldn’t let an animal suffer the way i suffer, they would put it to sleep.

Looking forwards to my fishing trip!

Oh well another wake up call at 3am this morning. thank god it wasn’t a full blown attack and only the shadow that has woken me. I decided to have an early night last night due to me going fishing today and now i am glad i made that decision. Maybe its the fact that i am excited to be going fishing again i don’t know but for some reason this morning the shadow is strong. I have tried to go back to sleep but i just can’t.

Well at least i go plenty of rest thanks to the early night. I am so looking forwards to going fishing today it’s silly. Its like being a school boy  all excided he’s going on a school trip al lover again. Mind you i have been missing being at the water edge waiting for that fish to bite. for some unknown reason fishing seems to really calm me and i don’t get anywhere near as many head attacks as i would normally. Maybe concentrating on the fishing gives me some thing to focus on and that stops a few of the attacks developing. As when you worry  you can make things worst and get twice as many tacks in a day than any normal time. Stress plays a big factor in the attacks.

I haven't got any swelling over the top of the eye this morning so i don't think i will be in for a painful day and my back isn't as painful as it has been for the last couple of days so that is some good news anyway. My neck doesn’t seem so stiff either so i am hoping for a pain free day if i can get away with it. I will just have to make sure i take things easy and not over do it when i am out fishing as sometimes i can get carried away and when i get home end up having a couple of big attacks.

We'll  there is not a lot i can do about the shadow being so strong apart from drink some coffee and hope that eases it as caffeine seems to calm it normally. I will then see if i can’t fall asleep for another hour or at least try and cat nap so i am ready and fresh in the morning as we will be starting early at around 8am. Fingers crossed i get myself a personal best fish today! (This means the biggest fish i have caught so far)

The most painful day ever!

I haven’t a clue why it started but yesterday became a day from hell with the amount of attacks i was getting and the level of pain was like i have never experienced before. I know it sounds crazy to say something is more painful than the most painful condition known to mankind but yesterday they were! I have had many attacks over the years and can honestly say i have experienced the worst, well up until yesterday i could. The pain was reaching such levels i couldn’t even touch my head. Normally i can help the pain by massaging my head and pain points but if i touched my head it would just increase the pain to a level where i was actually passing out. This continued right through the day, attack after attack, my body felt drained of all its energy and i was passing out where i lay or sat depending on my position.  I tried everything to try and get the pain to go but it just wouldn’t play ball. I took my injection but that didn’t even touch it and when i tried the oxygen i just kept on feeling sick and had to stop after 10-15 minuets.

I don’t know why my head suddenly turned that bad, and its even more annoying now i know there is nothing at the site if my scar and swelling that is causing me to get them according to the hospital. I am NOT convinced, If you get swelling in an area of your body it means your body is trying to fight something there that is injured or a problem. After getting my results yesterday and then going through what i would class as my worst day ever, they can not tell me there is nothing wrong when i know there is! I just walked over to Tesco to get some money out of the cash point and my back is literally killing me. The pain i am getting when i am walking is no joke and it feels like it is spreading or getting worst as time goes by.

Ok i agree to the diagnosis of CH and will accept my condition but there is no way i am accepting the fact that there is nothing they can do about it. In this day and age with technology and the research into worst conditions than mine such as cancer you are telling me that someone has to go through this amount of pain all the time and there is no way you can help them? No i wont believe it! I know my own doctor is reluctant to prescribe any form of pain relief as i became addicted to them last time and went through hell because of it but surely a human being should not be in this much pain all the time. There MUST be something they can do!

All i can do for now is wait for my appointment on Monday to see the specialist and see what he has to say about it. Its getting to the point that i can’t go on like this. Either this condition will kill me or i will kill it one way or another i can’t keep on going through that amount of pain all the time. Was hoping to be going fishing tomorrow but looks like that may have to be cancelled as the weather is taking a turn for the worst again which also means so will I. I am hoping this is not the case and we do get to go fishing as i have been missing it so much but its pointless putting myself through agony just to catch a fish. We will have to wait to see if the forecast changes by lunch time as it usually does. Fingers crossed and here's hoping!

Updates–Bad News from Scan!

Wow! What a lot of pain that just was! Yes, i am actually writing this straight after a massive attack. My head is still throbbing, i have loud ringing in my ears and my eyes are watering like hell. My nose wont stop running yet its blocked at the same time, that i just don't understand? Why does the nose always block up when having an attack/ It makes breathing difficult, especially when in agonising pain. My back is in agony and i still have shooting pains travelling up and down. Making it constantly uncomfortable no matter what position i sit in. I feel like i have had my eye scraped out with a hot spoon.

This was the third attack of 3 i have had this morning since 2.30 am It is now 6.33 am. The last four hours have been horrendous. I have never been in so much pain…. I just realised how stupid a sentence i was about to write. Of course i have been in that much pain before, every time i have attacks like this. I have lost count of how many times i have had to go through this pain over the last 10 – 11 years. Attack after attack, an a lot of the time with no help or way of stopping them. Now i have these injections i am grateful but unfortunately they don't stop the worst ones. i still have to go through most of the attack. I admit it shortens them but i am sure it only delays them so they return later.

Thankfully i will be at the hospital Monday morning and will finally get some answers. I am so looking forward to it you couldn’t imagine. The trouble is because i am so anxious, my minds is going over all the possibilities it could be and trying to rule out what it can’t be, talk about playing up so much. The last couple of days i have had to get out of the flat because it was driving me slowly insane just sitting here thinking about it all the time. I retreated up my mothers just for someone to talk to and think of other things for a change. All i can do is sit and wait and cross my fingers hoping for the best.

Finally i am off fishing on Saturday no matter how much wind is blowing. I know i have to be careful in the wind as it could set of an attack but i have my umbrella with sides so it acts like a closed gazebo and will keep the wind off me just fine. I can’t wait to be fishing and trying out some new tackle i have brought. Brian, my step father, will be picking me up Saturday morning as early as possible and we are off to Cefn Mably, our local fishery. I like it at Cefn Mably Lakes as it has a well designed layout making it easy to get to your fishing peg and there is plenty of room for lots of anglers. Its a pretty venue too and has everything you need on site so no need to panic if you forgot to pack something. Bring on Saturday – Lets catch me some fish!

Update: 07/02/2013 09.30 a.m. Just got a letter in the post from my specialist, it is a copy of the letter sent to my GP. Its not good news at all. They have not found anything in my head at the place of the swelling. this means the diagnosis of CH is so far confirmed and it wasn’t something causing it. This means i may now have to be like this for the rest of my life. I will have to lean to control it using a combination of drugs, injections and oxygen. There is a slim chance that it could be the spine causing it which is also something i have been dreading. i have this horrible feeling it is CH for sure as all the symptoms, side effects and treatments all point in that direction so i think its time to suck it up and accept the fact that this is my future and its time to start learning how to tame if not control the beast!

The pain is back… could be the cold causing it?

Oh well so much for continuing to have pain free days. For no reason at all and with no tell tale signs it was coming i ended up having a large attack yesterday afternoon. It didn't last as long as they normally do and i was lucky i was sat in my mothers house nice and warm when it decided to pay me a visit. Then again at 3.30am this morning i was woken by the beast and  this time it was a full on attack that lasted just under an hour in total. The face decided to swell up and so did my head. The scar seemed to suddenly become swollen as the attack appeared and as it started to ease i could actually feel the swelling going down. What a strange feeling it was too.

It has now left me with a bad back and neck and with shooting pains going up and down my spine with every movement i make. Even as i am sat here typing the blog i am getting pains in my back and neck and the pain seems to be spreading into my left shoulder and making feel like i have been punched. It is like i have a dead arm. I can feel cold around the top of my head so i am again assuming it is due to the cold weather that has set off the attack and made my head bad again. It is strange as i don't seem to be able to get past 3 days being pain free where as before i used to get up to 2 or 3 weeks at a time. I think it is due to the time of year and the temperatures as i know as the weather warms up and we get later into the year my attacks will start to decrease again and i will get a lot more pain free periods but that isn’t for another month yet.

I was feeling really rough and ill when i came home from my mums yesterday and it felt like i had a nasty cold coming or even the flu. When i woke up this morning due to the attack i have noticed that this feeling has gone so i must have managed to sleep it off. I am so glad i didn’t catch a cold as i wouldn’t be able to go fishing this weekend like we have planned. Myself and my step father will be going fishing on Saturday at or local fishery, Cefn Mably, to see if we can master one of their lakes and get ourselves some nice fish in the net. The only thing that will stop me from going now will be the weather so fingers crossed we get some good weather over the weekend. The forecast is for clear skies and no cloud with a temperature around 6 to 7 degrees so i am actually hoping it will be a little warmer. It was around that temperature yesterday but when you went out into the weather the cold wind was icy and actually made it feel like around 1 degrees and very cold.

Pain free at last!

At last i managed a full day with with out any big attacks. I still had a couple of the smaller ones and the shadow was playing up most of the evening. I think it was due to the weather again as i felt a cold draft on my neck last night and that seemed to make the shadow become a lot stronger but it didn't develop into an attack. I am sure it is the medication i am taking that is stopping the attacks from developing. Unfortunately it doesn’t work every time as i am still getting a couple of attacks in a day. Hopefully over time these attacks will be a thing of the past or at least just a couple a week will do me fine i can live with that. Its when they are constant all day long is when i get really down and just can’t cope with the pain all the time.

Today i managed a little lay in till around 6am but had to get up as the shadow had started playing up and i thought i was getting an attack but thankfully it didn't come. I have managed to stay pain free all morning, so far, but the pressure feeling on the side of my head is bad at the moment so i think i am due an attack at any time. I am praying i am wrong and i get another pain free day. Fingers crossed and lets hope that's the case.

Was shocked at my door going at 7.30am this morning from the post man. I have never seen a postman delivering that early in the morning but as it was a parcel delivery i suppose they try and get it all done as soon as possible before the end of the working day at around 5pm. I am made up as all the stuff i ordered for fishing has arrived so i will be spending the day playing around and re-sorting all my tackle to go into their new homes. I have a few presents for my mum and step-father too so they will be pleased as they like fishing just as much as me and are counting down the days till we go on holiday and out fishing again.

Well the sun is out and the air is calm so hopefully it will be a bit warmer today and i will get out of the flat for a while as i am so fed up with being locked in doors. I would go fishing but its just that little bit too cold for the fish to be feeding properly. Don’t get me wrong you can catch fish in the coldest of temperatures if you use the right feed and bait but i would rather catch a few instead of just one or two. Maybe i am just greedy when it comes to fishing as i like to be active all day long and not just sit there like a lemon waiting for a bite. I would rather go and find the fish instead of just waiting for the fish to come to me like a few i have seen doing. I think that is the laziest type of fishing and its just not for me. It won’t be too long and i will be back out again and i intend on fishing almost  every weekend through the season  and visit as many places as i can  this year.

Early morning wake up from the beast but pain free during the day!

I managed to stay asleep until 6am, now considering i am normally woken by the beast by 3am it’s not bad at all. The attack this morning was a strange one, although it built up like the normal attacks i get and was starting to be a very nasty attack then all of a sudden it just disappeared. Normally i have to take my injection to get it to disappear like it did. Don’t get me wrong i am happy it did stop suddenly but i just found it very strange that it didn’t continue when i woke up. By the time i ran into the living room and picked up my injection to get ready to take it, the attack was gone. Now why can’t all the attacks be like that.

Yesterday i stayed relatively pain free all day apart from 3 smaller attack that i had on the way home from my mothers house. i am sure it was down to the cold wind and low temperature that set tem off, but thankfully they were only small ones and where gone by the time i got indoors. I continued the rest of the evening with no attacks and very little sign of any. My neck has been behaving itself and my head seems to be ok for the time being. The swelling i normally get over the scar on the left side of the head has gone right down. There is still a little swelling but no where near as much as there used to be.

Not long now, only next Monday and i will see the specialist and finally get some answers to questions i have been dying to ask. To finally know what has been causing all this trouble for so long will be amazing, i can’t wait! The weather is still forecasting cold spells at the moment so i am still locked away indoors keeping out of the cold. They even recon we might get some more snow this week, i can’t see it myself as i think its a little to warm for the snow. It is possible they get some more snow on the mountains but not in Cardiff as it is a coastal town and we tend to be the last out of everyone to get snow falling on the ground.

I have been trying to concentrate on doing some work on the computer for the last couple of days as i have been accepted as a product tester for Total Outdoors, a company that sells fishing products via e-bay and online marketing. I have been creating my site to accommodate the product reviews making it look nice and easy to find. I am so surprised how popular my fishing blog or web site has become as i am getting a few hundred visitors every week. This site is all about our fishing trips as we go around Wales visiting the different lakes, rivers, ponds and fisheries. I also have a web site that is dedicated to computers and how to repair them and the software we use on them. The computer site is the most popular of all my sites as it even has free software downloads for people so i think that is a huge attraction to the site and is why it has built up in visitors over such a small amount of time. I also have Facebook pages for all these sites including this one, my private blog, so it keeps me busy during the day when i can’t go out due to the weather.

With the weather warming up and spring on its way i am getting ready to go fishing again and will be spending most of my time by the waters edge this year brushing up on my water craft and fishing skills. I have decided i won’t be fishing any competitions until i am ready and have spent a lot more time polishing my skills at some of the big fisheries we have here in south Wales.One thing i have noticed is the price on the equipment. My god has it become expensive. I remember when i was younger and fishing the river Ouse and the big gravel pits next to where i was living as well. The cost of the fishing then was a lot cheaper and it wouldn’t cost a whole weeks wages just to get the latest fishing rod or tackle bag. You were able to by a pack of hooks for under 30p and the bait, well maggots were only about £1.50 and that was expensive back in the late 80’s, early 90’s. I think i am starting to show my age.

Sunday is rest day!

With spring not far around the corner and the hope of some better weather i decided to have a hair cut yesterday. Not just any old cut, i decided on having my summer scrape (so to speak) and shaved all my hair off. I now know what a dog feels like when you shave all its fur of in the middle of winter. I think it was a silly mistake to make cutting it off this early in the year. Alright i may have a tidy head now and won’t have to worry about brushing my hair when i get up in the mornings but it’s not brushing the hair that's the problem, it’s the cold. I constantly feel like there is a draft on the top of my head and around my ears. I know this will go after i get used to it but its the cold that worries me the most as it has already set of an early morning attack.

I jumped out of bead this morning as soon as i felt the sharp pain shoot from behind my eye. I tried to ignore the pain at first but it was a vain as the pain became so strong my eye began to close and swell as it has done in the past. The pain over the top of my head was so bad it was making me feel sick and the sweat wouldn’t stop pouring off me. I ran into the living room and took my injection to hopefully abort the attack but it took what seemed like ages to start to take effect and kick in. I am starting to wonder if i would have ad the attack if i still had a full head of hair.

Cutting my hair off has also left me with a bit of a predicament! I normally use a T-Shirt of soft cloth to massage my head and neck when i get my attacks as this helps to ease the pain and is one of my ways of controlling an ever increasing pain. Now the hair is gone the cloth or t-shirt, doesn’t matter which i use, seems to stick to me head as the stubble is acting like Velcro. It has now become hard to massage using this method so i am going to have to re-think this approach. normally when i do have hair it builds up static and friction and it is the heat from this friction that seems to ease the pain.

Yesterday i was feeling extremely tired during the daytime and couldn’t stop myself from constantly yawning all day long. I then decided i would have a nap in the afternoon and see if i can catch up on my sleep. Well i must have been a lot more tired than i though as i laid down to rest at around 3.30 in the afternoon only to wake again at around 2am (an hour before my first attack of the day). I must have been very tired in order to sleep all that time. Well at least i have re-charged my batteries. I will be going up my mothers today for Sunday dinner and can’t wait. Ever since Brian (my step-father) decided to take over the cooking permanently we have been spoilt with the different dishes he’s been trying and believe me when i tell you they have been delicious and i can’t wait for dinner today!

Waiting for scan results, and half asleep!

I managed to stay pain free  most of the day yesterday. i did have a couple of times where i thought i was about to have an attack but again they just disappeared before it could build into a painful attack. Then late in the evening i started to have, what i would describe as a  mild head ache, when i turned my neck suddenly and all of a sudden i got what felt like a pulling sensation over the top of the head followed by sharp pain shooting into the neck. Also the sweat started to drip off me and within a few moments my t-shirt was soaked and i had to take it off. I couldn’t believe the amount of sweat that was coming off me, like someone had turned on a tap, i became cold as a draft caught me and made me shiver.  I rushed to take my injection as the pain was unbearable but it took quite a while to kick in so i was half was through a full attack before the medication did anything. I was so grateful for the relief when it came.

I am  still convinced that if i hadn’t of turned my head so  fast causing me to hurt my neck i wouldn’t have had any attacks yesterday and would have made it through the day completely  pain free. I still believe that the medication must be working as i am having far less attacks now and as the weather starts to improve and we move into spring i will see a lot more pain free periods and less attacks. I was again woken up early hours, about 4am,  when the shadow started to play up and i could feel a strong pressure feeling on the side of my head again. This didn’t start off any attacks but was bad enough to keep me from going back to sleep.

I know we have had a low pressure front moving over us as i have been watching the weather like a hawk. This has been causing me to get some strong feelings of pressure again on the side of my head but thankfully they have not developed into anything more serious. As i am sat typing this blog i am still getting small shooting pains up the back. These are strange and i don’t know where they come from. I can only assume it has something to do with the attacks i get and hope that it will disappear as time goes on and not become any worst than it is.

Only a short blog this morning as i am feeling very tired and will try and actually get some more sleep. I will just lay on the sofa hoping that i will drift off back to sleep and hopefully get some much needed rest. I still have 10 Days to go before i get my results of the scan so i am trying to be patient but its so hard at times as i am dying to know the answers and what on earth is going on.What is causing me the attacks and why do i get so many of them. Only the scan results will be able to give me these answers so for now lets try and get some rest.

Praying for the start of a pain free period.

Yesterday was funny day as i kept on getting ghost attacks! What i mean by this is i keep getting the feeling of pressure and a few sharp pains like the attack is about to start and then suddenly it disappears. Its a strange feeling and to get them so many times in a day is really strange. I know we had a low pressure front above us as i was watching the weather closely as when i get these low fronts i always end up getting attacks. I am starting to wonder if the medication is trying to work at last. Maybe when the attack starts to build the medication takes over and stops it. its the only thing i can think of that would explain what has been going on. i am praying i am right!

Again woken this morning in the early hours but again not by an attack but just the shadow feeling. It was very strong again this morning and again i felt an attack building only to disappear just as fast as it started. Don’t get me wrong i am so grateful it is doing this as i don’t have to go through the agonising pain. I think it may only be temporary and my attacks will return as it could just be the end of one cycle and the start of another. its crazy how this condition behaves. Sometimes you think the attacks will never stop as they just keep on coming one more painful than the last, if that is at all possible. then you get times where you think they have gone for good but only to return a couple of days later and remind you exactly how painful they are. i hope this is a start of a pain free period, we will have to wait and see how the day progresses.

Well it’s the start of the second month, February, i can’t believe how fast time has flown by already. Only 10 days till my appointment with the specialist and to get some answers i have been looking for, for many years, and finally be able to understand what has been happening to me over these years. I have been through some hard times and wonder how i managed to survive, to be honest. It feels like i am about to close a book and start a new one, if you get me. To be able to finally understand what has been going on and then to be able to plan for the future. For so many years i didn’t know whether i would be alive from one week to the next. Thinking the worst all the time and actually believing that my condition will eventually kill me.

On a different note, my mother has now got an appointment with the neurology department to have an MRI scan as well. They have finally decided to do something about the trapped nerve she has and the numbness in her left hand. I am sure what ever causes my condition runs in the family. It is strange how my mother has now got to have treatment for a trapped or damaged nerve, my brother has been treated and diagnosed with a problem with the nerve and it keeps trapping in his neck and causing him to pass out. He now has to take medication permanently just like myself. There's me being treated for CH and also the possibility of a damaged nerve on the left side of my head. It just seems very strange that we are all getting treatments for problems with the nerves in the spine, neck and head. This is also something i should pull up when i speak with my specialist. Maybe there is a connection.