The pain then suddenly stops as fast as it started....

Once again i find myself waking up at 2 am wondering why i don't feel tired and finding that i am about to have a cluster attack. No matter how hard i try to avoid these early morning wake up calls i always seem to get them. I thought it could be the weather and the sudden drop in temperature we get in the early hours so i keep the heating on trying to avoid it. I have even tried to tire myself out so much that i could actually lay in and sleep through it but no matter how tired i am, i still get woken. Its strange how it always starts the same way and is always on the left side of my face and head. Again it starts behind the eye and the top of my jaw on the left. The eye swells up and the face begins to droop. Water streams from your eye and sweat pours from your forehead. The pain always travels over the top of the head and ends in the back of your neck. The level of pain is so severe there is nothing on earth you can compare it to. It always leaves you feeling drained and praying to god for it to stop. If you were never religious its amazing how you suddenly hope that there is a god and that something can be done or that he will take mercy on you and stop the attack, but this never happens.

The pain then suddenly stops as fast as it started and you are left rubbing your sore head and eye wondering if and when it will return. You would think after suffering for so many years and having so many attacks that someone would get used to them but the pain always seems stronger each time it happens. The attacks can last from 30 mins and anything up to 3 hours and by the end of it you actually wish you were dead. When i first had these terrible attacks i thought something serious was wrong or i was about to have a stroke or even worst, i was about to die. I was never prepared for the shock when the specialists told me there was no cure and very little treatment for the condition and i would continue to have these attacks till i die or until they can control them with medication. If i had known what i know now i would never have agreed to the different drugs they kept on trying. The amount of side effects from the medication is crazy. One drug starts causing problems so you end up having to take another one to stop this problem and so begins the viscous circle you end up in.

Well i have to admit if it wasn't for one of the drugs i don't know what i would have done. The Sumatripitan injections are a god send as they are the only thing that will abort a full blown attack but you can only take 2 in 24 hrs and sometimes the attacks are so powerful they just don't seem to have any effect when you take the injection. I am just grateful for the times i am able to abort an attack and thanks to this the number of attacks have reduced. Although i still get attacks i am now finding i have more pain free days and have started to re-build my life. I will be getting out a lot more and especially getting out to do some fishing, the sport i love and use to keep my depression and stress under control. I have been making plans and getting things ready for the season but as usual, as soon as things start to go my way something comes along and kicks me square in the plums. 

I have started to get sharp pain in my chest again and can only think its from wind or the hiatus hernia caused through medication side effects. The pain was so bad this morning i woke up and thought i was having a heart attack and scared the living daylights out of myself. I have had no end of tests done at the hospital as i was getting oral thrush on my tongue and a sore throat and eyes for some reason but when they looked into it they couldn't find anything wrong.  Thankfully the tests have helped to put my mind at rest as i know i don't have any serious conditions other that the Clusters and the hernia but these are bad enough on their own. When the pain comes in the chest i can only assume its the hernia causing swelling and wind pushes up to cause the pain. If its not the hernia then it could be the same nerve in the neck that also causes me pain down the left side of my back. I think this nerve is tender as its the same nerve that the clusters travel along that goes over the head and into the neck.

It is possible that the cluster attacks are aggravating the nerve or even the other way around. I am still waiting for my referral to physiotherapy and i have now been waiting 2 years for it. Its crazy to think they would leave someone in this much pain all the time but as my specialist keeps saying to me there isn't much else they can actually do for me as painkillers doesn't help and only makes my health worst. What ever is causing it all is making my life a living hell. Just to be able to live a normal life again and go a while with out any pain or problems is a dream that is fading away fast. I sometimes have to remind myself that although i am in pain and have these conditions i still have to be thankful for the life i do have as there are thousands of people a lot worst off than i am and they are struggling to stay alive let alone live life.

Once again the beast has returned, so much for staying pain free!

Once again, just as I start to feel well, the beast decides to return and remind me just how painful my condition is. 3 am this morning i woke wondering why I didn't feel tired and within a few seconds of me realising what was about to happen it began. The pain began behind the left eye, a feeling like someone has shoved a hot poker straight into your eye socket. It shot up over the top of the left side of my head and into the neck. The swelling started over the top of the head along the scar I have from where my head was split open all those years ago. The left eye started to stream with water and slowly close and I could feel the left side of my face begin to droop as the pain level rose. You would think after having so many cluster attacks I would be used to the pain levels but no matter how regular they become you always feel like the pain keeps getting worst each time it happens.

I don't know what set it off this time as I couldn't feel the cold on the head like I do in winter. The cold is one of my main triggers and can sometimes cause me to have constant attacks through out the day but this time it is something else that has started the attacks. It could be stress from where I have been feeling ill the last couple of months or it could be down to the severe side effects I have been getting from medication. The doctors have been trying to find out what on earth is going on with me as there is no sign of infections or problems. The have checked kidneys, scanned for gall stones and even done heart traces to check its not a heart problem and still nothing appears. The specialist at the hospital said he had a feeling it could be one of the medications I was on but didn't know which one it could be. I have slowly been cutting out medication that I can live with out but when you have so many problems happening at the same time it is difficult to know what you can and can't take.

Where I have been run down for so long the thrush on the back of the tongue had reared its ugly head once again so I decided to go to the chemist and purchase the Daktarin gel that I was prescribed before by the doctors. When I tried to purchase it the chemist looked at me funnily and said are you sure about this? I asked what on earth she meant with that comment and it was at that point she told me the news. They had a note from the hospitals saying that Daktarin should be taken off general sales in the chemist and it is only to be given to people who are not on any other medication. I asked why and she explained. The Daktarin gel seems to react with other medication and the side effects can be extreme especially if you are on Simvastatin. What a coincidence I told her as that is one of the medications I have to take for high cholesterol. I think the look she gave me said it all. She continued to explain that another gentleman had been prescribed it who was also on Simvastatin and due to severe reactions he was rushed into hospital feeling very ill yet the hospital couldn't find out what was wrong (sounds familiar) but unfortunately he died from the reactions. Well you can just imagine my reaction to this news.

As soon as I returned home I grabbed every tube and box of the stuff and threw them out and now have to make another emergency appointment to see my doctor to try and get a handle on what on earth is going on. Its just crazy the amount of side effects from different medications I have had over the last few years. The neurologist experimenting with the different drugs to try and get the clusters under control almost killed me once and there was no way I would let that happen again. Having an allergic reaction to a medication is one thing but when it is just side effects due to 2 different drugs clashing you would think they would be a lot more careful. If it wasn't for the chemist remembering the problems with the medication being reported to them I wouldn't have known that it was causing a problem and would have probably continued the treatment and possibly continued to become even worst than I already am. Thankfully this medication is no longer available over the counter so no one else has to suffer the way I have been and I am starting to wonder what other medications I am on could be causing me problems.

Thankfully it is now entering spring so my attacks have reduced in number as the weather begins to warm up but I know I will still have attacks during the early hours when the temperature drops to its lowest. I can handle these attacks thanks to the injections I have been prescribed by the neurologist but I will never get used to the amount of pain that comes with the condition. Now the better weather is here it is time to start getting out and doing a bit of fishing to try and relax. The last couple of years I found it difficult to get out but I feel now I have the condition under some kind of control I should be able to get out a lot more so I have so much to make up for this year. I am just praying the beast will behave itself and I start to get a lot more pain free days.

A visit from the beast and health has gone down hill fast!

Once again as things start to improve for me the beats returns and shows its ugly head! At 3 am this morning i was woken up with a massive attack over the left side of the head. Starting again from behind the eye and shooting over the head into the neck. The pain level was so bad i thought i had past out at one point. I have had hundreds of attacks and you would think i would be used to them by now but the level of pain just seems to get worst and worst each time an attack appears. I was doing well for a while as i hadn't had an attack for a couple of days but i have been feeling very ill just lately.

All of a sudden i cam down with a viral infection just over a month ago and because i was violently sick during that time it feels and looks like i have made my hiatus hernia even worst as now i cant eat or drink with out it trapping, causing pain and i have to massage the chest just to get food and drink inside me. How long i can go on like this i don't know. The doctor has referred me for another endoscopy to see if i have made it worst and i suppose at this time they will decide what to do. I have managed to get over the viral infection with the help of antibiotics but seem to have gotten worst over the last month yet again.

I keep breaking out into cold sweats for no reason and my eyes keep burning. I am getting pain in both side of my neck up the back of the head and every now and again a small headache appears on the right side of my head, only for a few seconds, and then disappears. My stomach has swollen up to twice its normal size and my bowels don't seem to want to work properly. I am getting sharp stabbing pains under my left shoulder every now and again and i keep feeling very sick. As well as all the pain and the cluster attacks i am feeling very weak and even doing small jobs around the flat seems to be more than i can manage. I suddenly feel weak and faint and have to stop every 10 minuets as i feel as though i am going to pass out. What on earth is going on.

I am booked to see the doctor again this evening and then i have an appointment at the hospital tomorrow for an assessment about my head, once again. The neurologist feels i am also getting bad migraines as well as the cluster attacks as i get different types of attacks depending on where they start. Sometimes its from behind the eye and the top of the jaw which are the cluster attacks on the left side and then i get the ones that start at the top of the head and make the whole of the head throb and hurt and suddenly become very heavy. These are the migraines i think. Why cant i suffer with just one problem. Its bad enough they cant cure the cluster condition but to have other things wrong at the same time and not know what on earth is causing it is really starting to get to me.

I am sure that food is trapping in my upper chest and i think i am having reactions to this. I know its trapping as i was prescribed Appercap for the wind i have and when i take it, sometimes it releases in the upper chest and suddenly the whole of my chest feels freezing cold and icy from the mint and i get a very minty breath all of a sudden. It is so strong it actually takes my breath away and i have to rub my chest and drink coffee just to make it pass through. Why its doing this i can only assume its the hernia that is stopping the food passing through and i sdont know what else i can do to stop it. I am praying the doctor and hospital do something soon to help me as i really dont know how much more i can take. The last couple of weeks i have become so ill i am really worried and i have never felt so weak. I know i have been through a lot when it comes to my health and ever since i started the medication to try and get the clusters under control my health has been going down hill fast. I think its mainly to do with the side effects of the medication and the allergic reactions i had but surely they can do something about it. Fingers crossed they do it soon.