no choice but to give up my job due to illness

[kallis3]

I think Lisa is probably the closest to you.

Will they actually be able to cure your illness Phil?

[phil732]

Hi Kallis
There is no cure for cluster headaches, they dont even know what causes it,Ive never known pain like it, dont suffer migranes myself they say its 10 times worse than a migrane! it only affects the right side of my head/face/neck, my eye droops and waters, my nose runs as well, but above all its the pain, I cant keep still either and have upto 4 attacks every night 7 days a week, each 1 waking me from my sleep but can only inject 2 times so I have to rely on the oxygen, ive had it now for years but its become alot worse over the past year, so come morning I'm absolutely shattered im now officially classed as chronic where as before I was episodic I would do anything to stop the pain. My consultant is a specialist in this condition they have been fantastic and really care for cch sufferers

[kallis3]

That is totally awful Phil, and I can't begin to imagine what you are going through.

I hope your consultant can help you get some relief.

[phil732]

Lisa

I forgot to mention last night thanks for your support and advice it was very much appreciated and you prompted me in getting in contact with my IP. Thanks once again

[Tully1]

Hi Phil

I really hope that your creditors meeting works out for you.
I had meningitis a the begining of 2009 and am still suffering with post meningitis complications which consit fo a combination of migraines, cluster headaches and tension headaches so I understand how difficult day to day life can get when you are living in a state of chronic pain, it really does impact on every aspect of life.

I am just in the early stages of the IVA process and am hoping that my IP will be in touch within the next week with notification of my creditors meeting date.

Good luck & hope your consultant can start to manage your painn soon

[Skippy]

That's awful Phil, I suffer from migraines which are bad enough so I can't even begin to imagine what you are going through. I hope that the doctors will be able to get it under control.

Good luck with your creditors, I'm sure they'll be sympathetic xxx

[phil732]

Hi Tully

do you also suffer from cluster headaches? If so im so sorry, you must understand the chronic pain we go through every day?? Did you know there is only one dedicated organisation in the UK that helps with this awful condition, if you need to contact them for advice I will give you the website address, they have been a massive help for me and very supportive just like here, I have been asked to visit a day unit in London to meet fellow sufferers as I feel so isolated as this condition is so rare, perhaps they can help you too?

[phil732]

hi

just an update I was back in London Monday to see my neurologist and had another GRN injection at the back of my head also I am back there again in April and have to stay over for 5 days which isnt good. I also contacted my ip yesterday as I havnt heard anything from them about my paid to date settlement due to illness, they said it takes time to draw up the paper work approx 2 months, im just a bit worried as my payments have been suspended, I'm not used to not paying my IVA . They did say I have a good chance it will be accepted as my debts are with Max, I wish I had the money to pay my IVA still. I am such a worrier.

[Lisa2009]

Try not to worry. Your health is far more important than your IVA.

I dont know what its like having cluster headaches. I suffer with Multiple Sclerosis and Trigeminal Neuralgia. The neuralgia is the most intense pain i have ever felt in my life and can totally understand why uts nicknamed "the suicide pain". Even one single hair falling on my face during a flare up causes the worst pain ever.
I bang my head on walls crying for it to stop.

Im sure your IP will do the very best to push this through for you then you can concentrate on getting the head aches under controll.

Good luck x

[Tully1]

Hi Phil

Sorry for delay in my reply, i have not had access to the internet for a while. The Consultant has not yet formally given a diagnosis of Cluster headaches however he has said that he thinks that it is likely i am suffering them as a combination with various other types of headaches - its all rather confusing to me, all i know is that the pain is unbearable and currently unmanageable. they are changing my medicaion around again as it is totally ineffective at the moment however i always find this upsets me more but anything is worth a try.
I would be grateful for the website address you mentioned but as i understand you can't post links on here so I'm not sure how I can get it from you.

With regards to my IVA i have my creditor meeting on Monday - so really really nervous about that.

[Skippy]

If it's a link to a website that'll help you I don't see that it's a problem to post the link x

[phil732]

Hi Tully1

I am so sorry you are suffering cluster headaches its truely dreadful women sufferers say its worse than child labour! Though Its more common in men but only 0.2% of the population suffer this diasabling condition I'm currently chronic and I have upto 5 attacks every night. Please ask your gp for oxygen at a high flow rate, also Imigram injections really help with the pain as its excruating. As I'm not allowed to give the link please look up OUCH UK in google that way you will find it. They have helped me so much and I am sure they will help you, please give them a call we are all sufferers on the site and we all understand the pain we just want it to stop. I was referred to a specialist neurologist in London by my local hospital as they couldnt treat the condition its so rare, let me know how you get on..who knows I may see you on the message boards on OUCH. All the best.

[kallis3]

Those sort of links will be allowed.

I don't suffer from headaches often, fortunately, but I can imagine they must be hell if you do.

[Skippy]

Phil, don't worry about posting the link, it's ok if you want to do so x

[phil732]

ok thanks I will enclose the link, I really do not like to see people suffering the pain and agony we go through with cluster headaches, its called the suicide headache I'm afraid.

http://www.ouchuk.org/html/