NL
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Blog Comments posted by NL
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Its been awhile since Ive updated my condition as Ive just been able to cope well with the medication and had recently been employed as a chef but now they're starting to fail and manage my 'clusters' and I'm now back on the 'sick'. My GP prescribed Topiramate but this only made me feel agitated and aggressive so I stopped taking them after just over a week. I'm now taking an intense course of steriods and an increase in veraparmil dosage (480mg). My life at the moment has surely took a nose-dive with the only relief (albeit temporary) is my sumatriptan injections and oxygen which I'm going through two large bottles every 3-4days..!! I had an excruciating attack today one of the worst for years full on 'suicide',.. Bad times....
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[quote name='lloydyd' date='07 October 2010 - 09:41 '] Hi, I have also had this horrid condition. Well It is either cluster headache as one doc told me or Trigeminal neuralgia as another has said.
Sorry to hear your a sufferer of severe headaches whether it be 'clusters' or TN and the mis-understanding of those around you but I dont think anyone who has'nt felt the wrath of clusters could possibly understand the levels of pain that what we have to reluctantly endure but I have witnessed sincere empathy especially if an attack happens in the company of others. Clusterheadaches are distinguishable from trigeminal neuralgia by symptoms (back in the early days clusterheadaches were not widely heard of, so was often mis-diagnosed as 'Trigeminal Neuralgia') but now becoming better diagnosed, even people I've come across recently know or have heard of clusterheadaches. I'd urge anyone who is suffering or knows anyone that suffers to go and see their GP and mention the exact symptoms. There are many good sites on the internet covering the condition which can aid self-diagnoses but still seek medical advice. I'm still taking verapamil and its working very well and I've not had to inject myself for a few weeks now or have had to breathe pure O2 (oxygen) so ive been leading quite a 'normal' life... -
Update on my condition is looking very rosie, ive now been on verapamil (Heart condition tablets) for almost a month now and my cluster attacks have now been vanquished, I have to continue to take this medication as its a prevention measure and not a cure but absolutely ecstatic at the results. I now can lead a normal life as long as I dont forget those tiny yellow pills..!!
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Thank you all for your sympathies and understanding, These attacks this time around have been the worst since i first got them, so now I'm on a course of steroids and angina tablets (11 in all) as well as my sumatriptan injections, seems to be doing the trick in easing the pain but not preventing my attacks but all in all feeling a bit relieved.
Nobody really knows why these CH's are triggered but there seems to be possible biological oscillators and synchronizers believed to lie within the hypothalamus mediate seasonal changes seen in animals which are linked to photoperiodic changes, this theory is only speculative at the moment as we need more funding to find the cause and cure of this debilitating condition. But as you say Huntso when people say "I know I get bad headache" it gets on your goat as they have no idea, sometimes I wish I could give them a sample of what I'm going through even just for a minute (even though I know they'd be screaming in less than 10 seconds for me to take it away). Really sorry to hear you have them chronically Huntso, i really don't know how you manage at least I know i will (hopefully) be pain free in around 4-5 weeks time. -
Hi BL thanks for your reply, sorry to hear both you and your father suffer the 'devil' too, as much as i empathize enormously it is somewhat comforting to know i'm not alone . I have heard from various 'cluster' sites that O2 has been quite successful for many sufferers especially episodic but carrying a bottle around for several weeks could prove a little problematic and rather dangerous especially for me as i'm in my final year at college training to be a chef..!! Ive been reading a lot recently about this crippling affliction and around 15% of sufferers have it chronically..!! How on earth do they manage, my 2 months of the year when i suffer seem like nothing when i read their horrific account of daily life. There seems to be more research into CH and astounding as it sounds they are looking at LSD and psilocybin (magic mushrooms) although thankfully the non-hallucinogen 2-bromo-lysergic acid diethylamide to prevent attacks occuring, but as you know we'll do anything to rid ourselves of these demonic headaches.
Does Beverley still have that nightclub/bar out in the sticks a one story ugly flat roofed building? as i stayed in Beverley for a couple of months back in 91 when i worked for EVE power transmission, lovely little town/village i stayed in a pub cant remember what it was called but it was old with white washed outside walls and served a wonderful breakfast i remember your curry shop wasn't so good though mince in curried gravy does not warrent a beef madras..!!
Kind regards.
Paul.(NL)
One Of The Most Painful Conditions Known To Man/or Woman..!
in Diary of a 'Madman'
A blog by NL in Archive
Posted
The "BEAST' is again back with me. This bout started a couple of weeks earlier (11th of August) and now its becoming intolerable, I've now had over 100 attacks and gone through 16 injections and countless bottles of oxygen...when will it end........I've been offered the occipital nerve block procedure but the thought of having over 30 injections to the neck and scalp is somewhat off putting to say the least and many reports saying you get 2 weeks reprieve ( if it works) at most is not the result I would have hoped for... Anyway going by my past experiences with this condition I will be coming out of this cycle in the next few weeks and then my life can start again and get on with building my catering business adventure..