As the weather changes the attacks begin….

We have been lucky as far as the weather is concerned so far this spring as we have been rewarded with an early summer and some brilliant sunshine. Unfortunately this doesn’t  improves my situation as far as cluster attacks go. As soon as we have a slight change in the weather the attacks begin and once again i am being woken up in the early hours of the morning. Every morning at 3 or 4am my eyes open wide and i know instantly why i am awake and for some reason i never seem to feel tired when it happens. Normally when you wake up you still feel tired until you are fully awake but when you are woken by the beast with its gift if pain you are always wide awake and feel as though you haven't slept at all.

Since i was diagnosed with a hiatus hernia i have  had to have my bed at a strange angle so i don't build up stomach acid in the chest area during the night when sleeping. This used to cause my head to be at an awkward angle and cause my neck to be in pain all the time. In the end i had to get a new bed and have the base of the bed risen at 35 degrees so that the mattress lays flat even though its up at an angle and this will help to reduce the strain on my neck at night. The pain in my neck started over 2 months ago and has been gradually getting worst as time goes on but when i got a new bed it started to improve. Now all of a sudden its started to get bad again and seems to coincide with the strange allergic reaction i keep getting.

I have been back and fore the doctors every week for the last 2 months complaining about nettle rash and sore mouth and painful neck that ahs appeared for no reason. I have tried everything i can think of to identify what is causing this reaction but nothing seems to stand out. I stopped anything with wheat in and also dairy products in case i suddenly become intolerant to these foods. I stopped different medications and different drinks in case this was setting of an allergic reaction but still nothing seems to change it. I ended up with thrush inside my mouth and on my tongue and believe me when i say that is a horrible thing to suffer from. I ended up having 3 different treatments over 5 weeks to try and get it under control and only now in the sixth week we have finally started to get rid of it.

I am still getting mild allergic reaction symptoms form god knows what but it has started to get a little better and it is possible that it could be the thrush causing all these strange symptoms. I am hoping now the thrush is starting to go and i am slowly feeling better that the rashes and sore mouth and pain will start to ease and i will get back to my old self again. I am grateful that my cluster attacks seem to be behaving themselves and haven’t increased in quite some time. I am only getting 1 or 2 attacks a day and now have more pain free days than ever before so i am trying to make sure this doesn't change and i don't do anything to aggravate it. The neck pains i keep getting does sometimes set of attacks when they become severe but i know when that's about to happen and i am able to prepare myself with my injections in order to abort the on coming attack.

Now, thankfully, as the warmer weather is here i should get less and less attacks each week and should start to feel better now that i am getting things under control. I don't want to speak too soon as i know from experience this can suddenly change over night and i could end up really ill once again. I am hoping that as i am feeling better i will be able to start getting out and about a bit more now and should be able to enjoy the sunshine and even get some fishing in this year. I missed out on a lot of fishing last year and it really drove me insane watching others getting out catching fish and i just couldn’t do it myself due to the levels of pain i was always in. So fingers crossed this will be a good year for me and you will find me on the river or lake bank real soon.

Everything is becoming too much to handle ….

Again i have been suffering from early morning wake up calls from the beast at 3 am or 4am. You would think as the cold is the main trigger for my attacks that when the weather starts to warm up the attacks will reduce and stop. This isn't the case unfortunately as even the smallest drop in temperature in the early hours seems to aggravate my head and cause attacks to appear. It doesn’t help that i am still suffering some strange symptoms that are very similar to an allergic reaction and also a bad case of Thrush in the mouth and on the tongue. The doctor had given me medication that i had to swill around the mouth and then swallow to help get rid of it but the first dose didn't work and i was still just as bad a week later. Then i had a second dose of the medication that almost got rid of it completely but when i stopped taking the medication because i ran out within 2 days it was back again.

This time the doctor has prescribed me some strong tablets that is supposed to get rid of any type of fungal infection and said that this should stop the problem. Through research about my hiatus hernia i found out that i can now get fungal infections with great ease due to an imbalance that the hernia causes. It also says i can suddenly get allergies also which would explain all the strange symptoms i have been having. We still can’t work out what is causing these symptoms and why i feel like it is getting worst each week that passes. I also have severe pain in the neck on either side and this has now spread down my back on the right side and into the shoulder on the right both in the back and front and is so uncomfortable and painful its crazy.

It has now been 5 weeks since all this has started and i am no closer to a solution. I have tried everything i can think of. I have stopped dairy products and wheat products and even changes washing powders just in case something was causing the symptoms of an allergy. Also as my neighbour has cats and i had a couple of flea bites on my ankles i decided to fumigate the entire flat with a flea bomb to ensure that there could be nothing that was biting me causing the allergy.  After i bombed the flat i did start to feel a bit better but at the same time i stopped taking paracetamol tablets so it could be just a coincidence or maybe the paracetamol was also causing problems, i just don’t know. After a few more days i started to get ill again and for sure it can’t be the bites or fleas as the fumigation will kill anything that comes into contact with my carpet or furniture for the next 7 months to ensure i don't get any more bites.

As well as getting the symptoms come back my bowels have also decided to stop working so yet again i have to take more laxatives to get things moving again but i am sure its what ever is causing these symptoms that is also causing my bowls to suddenly stop working. Every time i see a doctor and tell them of the problems they just chuck more laxatives and medication at me and its really driving me insane. Why can’t they investigate it properly and stop all this messing about. Why someone should be in such a state and in so much pain in this day and age is beyond me. You would think with all the modern technology and medication they could do a lot better instead of leaving me to suffer all the time. Its bad enough suffering from the cluster attacks each day let alone all these other things going on. My back is in constant pain, my neck is in constant pain, my shoulder is in constant pain and my attacks are still everyday, although a massive improvement to what they were as i don't have as many attacks as i used to.

Due to the hernia i now have to sleep with my bed up at a strange angle and at first i thought the neck could be linked to that but now i have a new bed that has the base up at an angle so the mattress is still flat and doesn’t give me a crick in the neck so it can’t be that causing the neck pains. When i try and sleep on my back i get severe pain all night in both kidneys and also upper back and have to lay on my right side in order to sleep. If i try and sleep on my left side it ends up setting of cluster attacks so i am only able to sleep in one position all night. This is all starting to get too much for me to handle and i am struggling with the depression on a daily basis now. Its bad enough that i don’t get out of my flat as much as i used to due to the cluster attacks but at the moment i haven’t even managed to get out and go fishing yet. My local lake is closed at the moment so i can’t go there and the others are all too far for me to take my gear as i can’t lift as much as i used to not only because of the hernia but also due to the pain in the neck , kidneys and neck. I just wish god would cut me a break……..

Who needs an alarm clock when you suffer CH

Once again i am being woken up during the early hours by a visit from the beast. At around 3am or sometimes at 4 my eyes open and i am wide awake. Its feels strange as normally when you wake up you still feel tired and it takes a while for you to come around and wake up properly. When the attacks come its a different story. You are totally awake wondering if you been asleep at all and its not until you notice the time you realise what is about to happen. Your body breaks out in sweats and the pressure on the side of the head builds and the pain begins. Starting from the top of the jaw behind the eye and shooting over the top of the head on the left side and then into the neck at the back of your head. The pain shoots over so fast you don’t even get a chance to prepare your self and within seconds you are in total agony.

The left eye starts to close and water pours down your cheek and all you can do is hold your head in your hands praying for the pain to go away. The entire left side of the face starts to feel like its being melted away and stings with seriously high amount of pain. You rub the side of your face but every movement and every touch causes even more pain so you don’t know what to do. If you manage to get your injection in time then the pain will only last for around 10 minuets but those minuets seem like a life time. If you don’t take the injection in time then you have to ride the attack for well over an hour and by the end of it you are praying to god wishing for death to come and finally put you out of your misery. No matter how many attacks you have and how well you seem to deal with them you never get used to the level of pain i brings.Each attack seems to be stronger and more painful than before.

It doesn’t help the fact that i am still getting strange symptoms like i am allergic to something and that my bowels have decided to give up on me and i now have to take a crazy amount of laxatives just to be able to go to the toilet. I am getting really bad pain in both sides of my neck and this can also set off attacks during the day. At first i thought the pain was from me having to sleep at a strange angle due to having a hiatus hernia but now i have reset the bed and shouldn’t be getting any problems yet it seems to be getting worst each day. My stomach is swelling up every day and people say i am starting to look fat even though i am only eating 2 small meals a day. I am producing wind at a crazy rate and it seems to travel around my insides causing me sharp pain and discomfort. My throat is getting sore every day and as i am a smoker i find i can’t even smoke due to the soreness. In one way that's good for me as i am having to cut down but there must be a reason for all this going on.

Its driving me insane as when i see the doctors they end up giving me more laxatives. more antihistamines and more pain killers instead of trying to find out what is going on. I asked for a colonoscopy referral and was told that i had to be like this for at least six months on maximum laxatives before they will even think about referring me. Surely someone shouldn’t have to suffer or go through so much in this day and age. I thought medicine and medical practice had taken steps forwards not backwards. I feel as though i am being brushed under the carpet and left to rot. Every day i now have to fight back the depression and i am finding it harder and harder each time. I really don’t know how much more of this i can take, i just wish someone would help me.

How much more can the body and the mind take..

The last couple of weeks has been hell on earth. I thought suffering from the cluster attacks was bad enough but for some reason i am also getting what i can only describe as a severe allergic reaction to something that i can’t work out. Sore eyes, nettle rash on the skin, hot sweats and really bad pain in the neck on either side are the symptoms of something that is really screwing up my body. My bowels don’t work anymore with out the use of a lot of laxatives and even when i try and urinate it takes a lot of strain to empty my bladder. This just isn’t right. I have stopped dairy products and even wheat just in case it was something i was eating. I have also stopped coffee and tea and only drink water in case it was something i was drinking. Some days i feel as though i am starting to get better then all of a sudden i start to feel worst for no reason.

The pain in the neck is also setting off my cluster attacks so i am not only dealing with the effects of the allergy but also having to deal with the attacks themselves. I have never been in so much pain and discomfort all at the same time. I have tried everything i can think of that could be causing all this but nothing seems to stand out. I have even changed my washing powder in case it was that and am boil washing my bedding in case it is bed mites or something like that that could be causing the problems. I just don't know what else i can do. I am taking antihistamines to combat the symptoms but it only takes the edge off and i still end up suffering the entire day. I am also taking a lot of laxatives at the moment to keep my bowels moving so i don’t clog up again and end up in even more pain and agony. I even thought it was the laxatives themselves that i am having an allergic reaction to but even though i stopped for a couple of days it didn't make any difference.

All i can do is keep on persisting and hope that i find out the cause of it all soon. Every day i wake up it feels like its getting worst and my neck is becoming more and more painful to the point where i can’t even look over my shoulders now. Each time i go and see a doctor they just say they don't know what is causing it and give me more tablets but it doesn’t help. I feel as if i am being pushed aside and they don’t care what happens to me as i am ill anyway. I will see if things improve today but if they don't i will have to make another appointment and see the doctor again tomorrow and try and demand they do something about this but i know they will do exactly the same thing as before and tell me to wait for tests and give me more tablets to make me feel even worst. All it would take is an allergy test to see what is causing it and i don't understand why they don't do that as they used to do it when i was a child.  Maybe they don’t do those tests anymore, i just don't know.

I really don’t know how much more of this i can take/ Not only do i feel really ill but it is causing my depression to drop really low and i find myself in tears most of the day for no reason feeling sorry for myself all the time. I seem to be getting more aches and pains all over my back and sides worst than i have ever had but no one seems to want to help me and now i feel lost with no where to turn. Its really hard to try and keep a positive mind at the moment and i am trying to keep busy and keep my mind on thins that i enjoy but i can’t even get out and go fishing at the moment as i am just to ill and in too much pain. Please God Help Me!