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Topic: First Timer - Clarity At Last (Read 297 times) |
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doublek
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First Timer - Clarity At Last
« on: Jun 19th, 2005, 12:42pm » |
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For many years I've been complaining about the sever pain I get on the right side of my face. Every doctor I've ever spoken to about this pain convinced me I was suffering within migraines and that I had to lay off cheese, chocolates, diary products generally because their the cause of all my porblems etc. This is a condition I've lived with for 20 years plus, believing it to be migraines etc.
My brother was also told that he suffered from migraines and that it is hereditary in families etc, my mum and sister and older brother also suffer with migraines. Anyway a couple of years ago, my brother started having his attacks again, and after weeks of appointments with his doctor, he decided to go on the web and discovered a migrain clinic in London, who specialise in clusterheadaches.
After trying a number of drugs to no avail, he was given 100% pure oxygen and his clusterhedache cleared in approximately 10 minutes, and he has not had an attack for the past 2 and a half years (lucky sod).
Anyway, my headaches started again 4 weeks ago, 5 weeks this wednesday (22.6.05). All I clearly remember is waking up at 2am with this pain behind my eye, my temple was sore, my right nasal passage was completely blocked, my teeth ached, the whole right hand side of my face was sensitive to the touch, I became hot in minutes, restless and the back of my neck ached. All I could think was I've had one of these before (migraine), the only problem was it wasn't going away.
I took some pain relief but this no effect whatsoever. After an hour I got up sat at the end of my bed and rocked backward and forward. I wanted to rub my temple but couldn't because it felt so sensitive. I started crying because the pain became unbearable and I knew there was nothing I could do about it. All I wanted to do was get cold, I made my way to my bedroom window and opened wide, stuck my head out and took deep breathes. After about half and hour, I sat back on the end of my bed and continued rocking again. After about 2 and half hours, my right nasal passage began to clear, once this started happening the pain/pressure began to subside.
I remember looking at the clock thinking to myself I have to go to work in a couple of hours. I felt completely exhausted the following day got sent home from work that day.
5 weeks on I'm still suffering with these headaches. My attacked happen 2am every morning. So I decided that I'd go to bed later to ensure the attack would not happen. So I went to bed at 2.30am, at 3.35am I woke up with an excruciating pain behind my right eye, and as usual within 10-15 mins I was in agony.
2 weeks after my first attack I did not want to go to bed, because I was afraid and this in itself caused problems socially and at work, due to lack of sleep, temperment etc. My attacks are some sever at night, within an hour of me falling asleep, and they stay with me all day. I can feel it even now, however, the pain meds are keeping them at bay for now.
I asked my rother to send me all the literature he had on clusterheadaches and the name of the clinci he was referred to. I took the information to my doctor, who clearly admits that he only knew about clusterheadaches through his medical dictionary, apart from me he has never come across it before, and openly admitted that he may have (like most GPs) misdiagnose it as a migraine. After speaking to some colleagues, it was clear that they had little or no knowledge of clusterheadaches.
He is going to try and refer me the migraine clinic in London, but did say it could be a long drawn out process because of all the red tape issue, budgetary constraints etc. However, all the literatire I've given him recently point to 100% per oxygen being an effective cure for clusterheadaches, something my brother attest to.
When at work my bosses like to refer to them as headaches and/or migraines. I intend to sit down with them and give them a workshop on symptoms, effects, and the difference between a migraine, headache and clusterheadache. I suffer with all three at some time or other and I can tell you, a headache, I don't even worry about them (honestly), migraines, if I get one its because I haven't eaten enough, or missed a meal, once I eaten within 30 minutes my head is clear. Clusterheadaches, there is absolutely nothing I can do, the only thing I want to do is run into a brick wall and knock myself out. The pain is unbearable.
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E-Double
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Re: First Timer - Clarity At Last
« Reply #1 on: Jun 19th, 2005, 12:58pm » |
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Welcome, Good luck & research!!!!!
Since you plan on having a sitdown with your employer and colleagues.....
check out the first thread on the top of this board......
Print it out and give it to them!
Regards,
E-double 
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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LeLimey
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Re: First Timer - Clarity At Last
« Reply #2 on: Jun 19th, 2005, 1:05pm » |
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Hello I'm so sorry you had to find us but I'm very glad you have as we CAN help.
I would like you first of all to ring OUCH UK or visit their website. I do believe there is a specialist headache clinic in your region that I have read about on the OUCH Uk board. They can give you all the details if I'm right but also in any case the helpline is manned by other sufferers and they know how you feel and can give you some wonderful advice.
Next armed with a bit of knowledge get yourself back to your doctor TOMORROW and ask him to refer you to a local neuro as a matter of urgency. While you are there get him to give you a prescription for O2. You will need a Non Rebreather Mask too and you can buy these from Boots or you can also get them (cheaper!!) from OUCH UK!! Bear in mind most pharmacies have a once a week delivery for O2 so before you take your prescription in anywhere check when their deliveries are 'cos you want it ASAP! I always get mine from Boots and they couldn't be better. The O2 regulations in the UK ARE changing from later this year and it will be delivered to your house at 24 hours notice which is going to be much better!
Initially you will need to trial it on smaller cylinders, the reason for this being that you WILL need a regulator for the bigger cylinders. For some beknighted reason these are not available on the NHS and cost about £150 to buy. OUCH UK can help with this too as they have a loan system and also cheaper options for buying them (Are you beginning to think I'm selling something here?!! It feels like it!  )
Go and look at the OUCH UK board and under treatments look at CD Oxygen, this will give you EXACTLY what your doctor needs to put on your prescription (as he probably will not have a clue!) so print it or write it out ready for him.
Also discuss Imigran injections with him, NOT tablets and NOT nasal sprays. (also called sumatriptan) These are actually the only licensed treatment for CH in the UK and if he consults his BNF he will see this. (British National Formulary - aka the doctors bible!) He might baulk on grounds of cost but that is tough. They are the ONLY licensed treatment and that is that! You CAN only use a maximum of two in one day though. Prof Goadsby, the UK's leading neurologist on CH and one of the foremost authorities in the world has stated it is immoral to withold these injections on grounds of cost given the extreme pain ch'ers go through.
Right, the OUCH UK website is
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
The link to the CD Oxygen (CD is the cylinder size BTW)
http://www.clusterheadaches.org.uk/home/index.cfm?address=../treatments/ txt_drug_oxygen_regs_cd.cfm&added=11/08/03&code=CD
And the OUCH helpline number is 0161 2721702
Now.. make sure you let us know how you get on okay?!
I hope you get some Pain Free time soon
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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