The “Beast” came a calling

So much for getting past 3 or 4 days pain free. Yesterday i was bent down cleaning one of my fishing rods just checking everything was ok when someone walked into the flat blocks and called my name as i stood up “crack” i hit my head on the corner of the railings. Now considering they are made of iron and quite pointed on the end i wasn't surprised to find a small cut on the right side of my head where i hit it. (not the side of my attacks) The blood was amazing! the amount that came from a small pin prick size hole was unbelievable. Also when i hit my head there was a huge gong like sound that came from the railings so it was quite funny as it “rang my bell” so to speak.

The only trouble was that later in the evening i ended up having a massive attack. I am not sure if hitting my head is what started them off but it couldn’t have done it any good that's for sure. The attacks didn’t stop there. Again at 1am and then again at 6.30 this morning. The beast wouldn’t stop coming back. It’s crazy as i have been pain free with no signs of it returning for the last 3 days and then its started again with out any warning signs. I would have at least expected the shadow to build before hand but this time it didn’t. I know the attacks early this morning were definitely set off by the cold as i had to run in the front room and sit with my head in front of the electric fire to warm it up and stop the attacks.

Now that i have warmed up a bit this morning i don’t seem to have any sign of the attacks returning. I know that that doesn’t mean i won’t have any attacks so i still have to be careful. Now the attacks are appearing with out warning which isn’t a good sign. At least before i was getting a warning sign it was coming so i could rush home or rush to get my medication before it started. We’ll as long as i keep wearing my woolly hat out in the cold it should keep it from causing any further attacks, i hope!

The only thing that really worries me at the moment is pain that i have been getting from the attacks that is in the back. It seems to shoot from the neck to the bottom of my spine. This pain causes me to walk like a “really old” person who’s limbs are about to give up. The pain i get in the front of my legs when i walk, after receiving the shooting pain in the back, is very sore and strange as you would expect any pain to be in the muscle, in the calf of the leg, but this is on the shin and upwards. Its like a pulling pain, very sharp like treading on needles. i only seem to get this after big attacks during the night before or the morning. Then when i walk up the chemist the pain kicks in and its almost impossible to walk, if you saw me you would probably laugh or think i was putting it on the way it makes me look is ridiculous.

Well the weather is forecast to be dry but cloudy today and the temperature is supposed to warm up slightly so i am hoping last nigh and this morning will be isolated attacks and i continue shadow and pain free. i still think the medication IS working as even though i have had a couple of bad attacks the smaller ones seem to have vanished and i am now getting a lot less during an attack period so fingers crossed it continues to improve.

Rain! Rain! Go away! Come back on a painful day!

BRRRRR its a cold start to the morning today! Wow, i woke up at 7am this morning and it felt like my head had been placed into an ice box i could feel the cold that strong on my face and head it actually started me shivering in bed. I managed to pull the covers over my head and go back to sleep for an hour. This is great as normally i am woken straight up and the pain starts but not today for some reason, lets hope its the medication.

I managed to stay in bed till 8.30am so i did manage a little lay in.  I have to get up at this time to get ready to go up the chemist at 9.30. I can’t wait till i change this to weekly so i don't have to walk up every morning as i risk the cold setting off an attack all the time. I don’t have any sign of a shadow and no sign of an attack building this morning so hopefully it will be another pain free day. This is the 3rd day in a row i haven’t had massive attacks or major pain so i am hoping it will last a bit longer than it normally does.

I decided to have an early night last night as i was feeling a little low and couldn’t concentrate on watching TV or even being on the computer. I kept feeling restless and was constantly looking for different things to do so i thought i would just crawl into bed and get some sleep. With it being bonfire night last night i thought at one point there was no way i would get any sleep with all the fireworks going off but i did. I think i stayed awake for about an hour after climbing into bed and that was it, lights out!

It’s not until you get these pain free days that you start to appreciate how much more you can do and how much better you feel when you haven’t got a bad head or pain all the time. i think its a day catching up on my house work as i have just let things go over the last week due to me feeling down and in pain so its about time i nipped it in the butt and just got on with it. The weather isn’t looking to promising as they forecast rain and cold winds for most of the day even though the sun is shining at the moment you can see the rain clouds in the distance so its definitely a day indoors.

Here’s hoping for a pain free day!

The pain stayed away after all yesterday and i managed to get another day where i was able to lay in in the morning. I didn’t wake up till 8.30 today and i feel really good for it! My batteries feel recharged and i feel a little more positive today. It does help that i wrapped up during the night as i can still feel the cold around my head all the time lately and normally it would set me off with large attacks but it hasn’t for some strange reason.(let’s hope its the medication).

It drives me insane sometimes, i wake up some days and i am in absolute agony when the cold starts to bite at my head and neck, but the last couple of days it hasn’t been doing it so i am praying this is a good sign and the winter won’t turn out as bad as i was expecting it to be. There is definitely a huge drop in the temperature compared to a couple of weeks ago so i can honestly say Winter is with us and has begun!

If i go out at all i will have to wrap up and make sure i am wearing my woolly hat to keep my head warm as this tends to stop the cold from setting off any big attacks. My normal routine includes me calling at the chemist each morning to collect certain medication that has to be monitored on a daily and weekly basis but with the winter now here it is becoming more and more difficult to walk up there and get my meds. So i have to arrange with the doctors to switch it to weekly so i don’t risk bringing on any attacks unnecessarily.

Its a strange day today, the sun is shining and the skies are clear but the weather is still bitter if you go outside. This is the worst weather as it fools you into thinking its warmer than it looks and you will be fine until you get out doors and then the cold starts to get to the head so you hurry back in out of the cold to warm up as quickly as is possible. This is the weather when you start to catch colds and flu.

If this cold weather continues then i will end up having an attack for sure today, i will try everything i can to avoid it happening but it usually starts towards the evening or late afternoon. The cold normally causes the shadow to build during the day and when it comes to the night time, the attacks begin. fingers crossed this is not the case an i get another pain free day!

Moods were all over the place, Now starting to settle!

After having the shadow for most of yesterday i was very surprised not to have a full blown attack. Normally when i get the shadow, as strong as it was yesterday, i end up having several big attacks but this time i was lucky and didn’t even get one. Either the medication is working or the fact that i have been drinking loads of coffee the last few days has helped in avoiding the massive attacks. I can’t say for sure what has stopped them from developing, all i know is they didn’t start and i am thankful for that.

I managed a nice lay in this morning till around 8.30am but was then woken with a small attack. Not as painful as the main attacks but enough to make my neck sore and my walking painful as i get shooting pains down the back into the bottom of my spine. Each time i take a step is like walking on thousands of needles. My normal pain killers added with around 20minuets of oxygen soon took care of that and am now feeling pain free. I can still feel the cold feeling around my head but not enough to irritate it so fingers crossed it stays like this for the remainder of the day. the shadow feeling has become so dull its hardly noticeable so i am hoping this is a sign of a pain free period as i could do with a couple of days just to recharge my batteries.

My depression has been all over the place recently and i have been yoyo-ing when it comes to my feelings. One minuet i can take on the world and fight anything and the next moment its the end of the world. As you can imagine this has completely messed up my feelings and i have been finding it hard to cope with everyday tasks that i would normally laugh at!  It is only the last couple of days this has started to improve so i am hoping i am coming to the end of a “down” period and things will start to look a little more positive.

Again i have been shutting myself away from the world, not going out due to fear of having attacks all the time. I even went shopping to Tesco’s which is only 10 minuets walk away from me but for some reason i started to panic and ran home just to be in the safety of my flat. Why i suddenly panicked i am not sure and can only assume its the depression causing it.

I need to find things to take my mind off my illness. The computer gives me some relief as i find things to do and type up information for my computer help web page, but not always am i in the mood or even capable of using the computer as i can’t concentrate or sit for a period of time when i am in a bad period with the depression i find it very hard.

Now that the cold weather is hear i have even stopped going fishing in fear of having too many attacks being brought on by the cold. I am thinking about doing some winter fishing as the only thing stopping me is “the cold & rain” so i am sure if my head is improving and i am not getting as many attacks as i normally do and my depression is settling , if i wrap up warm and stay out of the rain then i should be ok. I will just have to choose the days carefully and watch the weather.

Well i will have to wait to do some more fishing when i am a bit better off. I cant believe the prices of day tickets today! Between £6 and £10 depending on where you fish, God i remember when i was younger and it was only £2.50 for children and £3 for adults, wow what a change! Anyway i am starting to ramble on so lets hope my head continues to improve and the shadows stay away today and the attacks don’t appear. At least its a step in the right direction.

It’s not just Painful Torture it’s also Mental Torture

So much for having a lay in on a weekend! I didn’t have any big attacks yesterday even though the weather was dreadful, but early hours this morning saw a wake up call at 4am. A strange wake up call as well, i didn’t have an attack and couldn’t understand why i had suddenly woken up. I could then feel the pressure build on the side of my head and a feeling of a golf ball being stuck in my neck. These are both usually the sign of a massive attack about to happen so i rushed into the living room and sat with my oxygen mask at the ready and just as i was turning the oxygen on it started to ease away.

This was a weird feeling as normally i would be in screaming agony. The neck has remained a little sore and still feels like there is a lump. The head is still swollen around the scar and my eye is drooping but no big attack. Now this is the feeling that i call the shadow. I sat like this from around 4.30 this morning until 6.30 and then took my medication for the day. After around 30-45 minuets the pressure feeling has now decreased and is a dull felling in the background so i am now convinced that the medication is starting to work.

My neck is continuing to play up and every now and again i get a shooting pain over the head and also down the back, these are both signs that i will definitely have a big attack today if i don't take things easy. Again i think it is the weather that has brought this on as it looks like it rained heavy last night and early hours so there must have been a low pressure area, that mixed with the cold is a sure guarantee to set of my attacks.

At the moment the feeling is dull and in the background and the neck is bearable so i am praying it stays like this. Sometimes i wish it would just get the big attack over and done with instead of making me suffer for hours before. It’s not just painful torture it;s mental torture as well. When you are like this you can’t go out, you can’t rest or sleep, you can’t settle to watch t.v., you are constantly on edge waiting for the attack to be over and done with and praying the shadow feeling would just go away and then no attack will come. You shut yourself away because you don’t want anyone to see you with a droopy face and an eye streaming with water and your nose is blocked on the one side. You feel embarrassed!

Well let’s hope the weather is a little more kinder to us today and this horrible feeling will eventually go away. All i can do for the time being is make sure i stay warm, keep my head out of the cold and drink plenty of coffee as i have now found out that caffeine is great for getting rid of the shadow feeling. Let’s pray for a pain free day!

Let’s hope for a pain free day!

Hooray! I managed to sleep right through the night and even managed to lay in till  8am this morning! I did have a couple of small attacks last night but nothing i couldn’t handle (oh my god that sounds bad! Like i am getting so used to them they are becoming part of may daily routine) . We’ll at least today i don’t have any sign of an attack yet! I still have a bit of a sore neck from last night but i am hoping the pain killers will take care of than and my head should then settle.

The rain is pouring down outside and the sky’s are dark grey. Normally in this kind of weather i would be in agony, hiding away from people in my flat to frightened to go out in case of the massive attacks. I don’t feel like that today for some reason, maybe it’s because i have rested well and haven’t started having the pain. If that’s the case fingers crossed it stays like this for the rest of today.

I have to go and try and arrange an appointment to get my teeth sorted. It’s been nearly 4 years since the operation where they pulled out every tooth in my mouth apart from three and the bottom row at the front. Strange why they left the three but never mind. It was the most horrible experience of my life. I suppose that’s why i have been frightened to go back to any dentist. All i seem to keep remembering is waking up and not being able to breathe because my mouth was full of blood and then spitting chunks of clotted blood out of my mouth. I know it’s a bit graphic but the dreams i now have about it is traumatizing. After the operation to be told there was nothing wrong and there was no infection in the jaw after all. This was before my diagnosis of CH.

Now that i have traumatized myself again thinking about the operation i think i’ll wait till the rain stops and go and speak with the dentist and discuss if my medication will cause any complications. Oh God ! i couldn’t imagine having an attacks whilst he’s extracting a tooth!. I Don’t want to think about that so it’s time for a cuppa and a hasty exit. let’s just hope the remainder of the day is pain free!

Watching out for the triggers!

Firstly comes the neck, a sore feeling like you have pulled a muscle or twisted something but not constant pain like you would think. The uncomfortable feeling leaves you massaging your neck hoping it will go away but then follows the pulling pain, a sharp pain that starts behind your eye and feels like something is pulling from the front of your eye to the back of the head and in turn connects to the neck. this pain gradually increases over time and eventually ends up feeling like someone is trying to take your eye out with a spoon. Then there is the sharp pain that goes over the top of the head again joining the front of your head and face to the back of your head with pain. A level of pain that you can only describe as someone operating on you with no anaesthesia .

That's how i would describe the early morning wake up calls. It doesn’t always come on in stages but the pain is always the same. You can sometimes wake up and feel fine for around 5 to 10 minuets before anything starts to happen but as with all wake up calls you don't feel tired for some strange reason. Normally if i wake up in the morning naturally i feel shattered and it takers me a good 15-20 minuets to wake up properly, but the ones where i wake up due to the pain attacks coming just don’t seem to be the same, i always wake up immediately and there is never a sign of tiredness.I am wondering whether there is a chemical being released by the brain that causes these attacks that also wakes you up straight away, it is possible i suppose?

I am now 100% sure that the cold weather is one of MY main triggers for attacks to happen. Again this morning when i was rudely woken from my sleep once again at 4am this morning to deal with a stupid head attack that lasted only around 20 minuets and then again i couldn't go back to sleep afterwards so i have had to stay up all morning. Its really annoying when it keeps doing this to me but i know what it is, or i think i do! I can feel a cold band around my head when i wake, the cold band is only in the place where i get my attacks, just above the left eye. It is this coldness that sets of an attack every time i feel it. It may not be the main thing that is causing the attacks but it is definitely one of the contributors to my condition.

another thing i have noticed over time is that there are several types of attacks that you get when you suffer this condition and each attack can vary in size and length.

Stress attacks: These attacks are usually caused due to high levels of stress and can make your neck and shoulders feel gritty like you have grit stuck in you joints. These are the worst triggers along with cold attacks and can only be stopped with medication.

Heat Attack: This sometimes occurs when you wrap up to warm, over do exercise or generally get too hot during the day you can find that it irritates your head and then causes an attack. Not so common but still annoying.The attacks are less severe and can usually be dealt with using oxygen and pain killers.

Cold Attacks: Just like stress this is another of the main culprits that sets of your attacks. They are the most painful of all the attacks and can last hours in length. Just like stress attacks these have to be controlled by medication and injections. These are the most painful of all the attacks.

Strain Attacks: These attacks occur when you are trying to over do things. For example if you are trying to tidy you house and you are doing it too quickly with out taking a break. You end up straining yourself and this in turn will aggravate the head and bring on an attack. Again these attacks are less often and can usually be controlled using oxygen and tablets.

Light Attacks: Can also be caused by bright lights constantly being shined in your eyes. Light attacks are very similar to migraine attacks. Just like a migraine you may experience flashing before the onset of an attack or even tunnel vision or a small headache that proceeds the big attack, this is why CH has been confused with migraines for so many years. Again these type of attacks can be disabling you need medication and injections to control. The longest lasting of all the attacks and again extremely painful.

Noise Attacks: Just like normal “headaches”, if there is such a thing, these attacks can be set off by excessive noise and thumping sound that is experienced for a period of time. This in turn again causes your headaches to build and just as in stress headaches they will reach to extremely painful levels and can only be aborted by injections and/or oxygen and you have to find peace and quiet.

There are so many different reasons an attack is set off or why they are irritated to the extent that you are in constant suffering but above is a small list of the main reasons why MY attacks seem to happen. It wasn’t until i started doing this blog that i realised how many different triggers there could be for this condition, but what i do know is that education and knowledge is also a good weapon in defeating or controlling this condition. by understanding what can cause the condition to build we are able to avoid some of the main triggers thus making life a little easier to bear.