New CH.com Forum | |
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl
Cluster Headache Help and Support >> Getting to Know Ya >> Another new one !! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1298483779 Message started by alilou on Feb 23rd, 2011 at 12:56pm |
Title: Another new one !! Post by alilou on Feb 23rd, 2011 at 12:56pm
Hello All
Since October last year I have been having acute headaches, with droopy right eye tearing and slow reacting pupil. pain in right facial area and very tender skin right top of my head and right forehead. At first I was treated for facial neuralgia pos trigalmic neuralgia then in January when I had come to the end of my tether and no analgesia would help and I sat holding a box of pills thinking that if i took them all then I may be able to just a have a few moments pain free I went to my local a&e to be given oramorph which I promptly threw up and told there was no quick fix for Neuralgia and to return to my GP if it didnt improve. I was on my GPs doorstep the next morning. I saw a different GP who knew me a bit better and he called me that evening to say he thought I may have Temporal Arteritis so started me on 60mgs prednisolone per day. The pain stopped within 1 hour and I could have danced on the ceiling !!!. An Artery biopsy was inconclusive for TA so the rheumatologist and Neurologists that I have been refered to feel that because of some of my symptoms not being those of TA that I may have cluster headaches. I must say that after reading through this site I am inclined to agree with them. I am now just decreasing the steroid use this week as per my doctors advice and we will see what is underneath all these meds. The neurologist has started me on Gabapentin as a preventative drug so I will wait and see what happens in the next few weeks. I will post again when i know more. PS has anyone else suffered with the tender skin symptom on the side of my head where the pain is. I haven't seen it mentioned on here and I must admit it was very sore too sore to put moisturiser on. Chat soon Alilou |
Title: Re: Another new one !! Post by Mike NZ on Feb 23rd, 2011 at 1:08pm
Hi Alilou - it sounds from your symptoms that you might have CH but there are several other conditions that give very similar symptoms so it's essential to get a diagnosis from a neurologist with a strong preference from one who is a specialist in headaches.
Where are you in the world? There are people on the forums from all over the world so people in your area will be able to give advice relating to your location. |
Title: Re: Another new one !! Post by Jeannie on Feb 23rd, 2011 at 2:02pm
Hi and welcome!
I get the tender skin on my CH side. It's almost as if I've had my hair in a too tight pony tail. Jeannie |
Title: Re: Another new one !! Post by bejeeber on Feb 23rd, 2011 at 10:27pm
Just an FYI - I have been prescribed gabapentin (neurontin) as a prevent and it has worked in the sense that it has reduced the frequency of attacks by 50% or so, which was a lifesaver really, because it made aborting the remaining hits do-able/manageable. I've seen others on here report some success with gabapentin, and probably at least as many others report it didn't help them.
I've been prescribed Verapamil and it on the other hand did nothing for me, but it very well may have been too low a dose. This was many moons ago and I don't have a record of it. So I just actually kinda disagreed with Guiseppi there on that one point which is VERY RARE :o, but I agree with him about the other stuff, especially O2 aborts and clusterbuster prevents. 8-) |
Title: Re: Another new one !! Post by Guiseppi on Feb 24th, 2011 at 12:33am
Never apologize for disagreeing...especially if it's for something that works! ;)
I stand corrected! Joe |
Title: Re: Another new one !! Post by alilou on Feb 24th, 2011 at 12:56am
Thanks everyone for the speedy replies. Especially the one about coming off the steroids. I have noticed a familiar feeling in my head even after the first day of reducing the staroids. This is a wee bit scary. I have taken note of all that has been said and Im begining to realise that its down to me to investigate and suggest to the doctors re my treatment. Im petrified of the pain returning and will do all I can to prevent its return although I accept that I will have to deal with it too. I do feel for you all in dealing with this pain as at the height of the pain I seriously concidered taking a box of tablets to just get some relief.
BUT believe me as a sufferer of three types of cancer I know too well how precious life is and wont be going down that road of thought again if I can help it. Right so now im going to go back to all your messages and inwardly digest !!!! By the way I am from the UK Take Care All Ali xxx |
Title: Re: Another new one !! Post by alilou on Feb 24th, 2011 at 1:25am
Sorry one more thing. Thanks for the reply re the tender scalp and forehead. Yes it does feel like my hair is too tight. even just touching the hair makes the root hurt. thanks again. all knowledge helps x
|
Title: Re: Another new one !! Post by wimsey1 on Feb 24th, 2011 at 8:15am
I also get that tender scalp thing. Just touching the affected side of my hide during a hit/just before/just after can send sharp pains into my eye. At one point I was up to 3600mg/day of Gaba. Didn't help the cycle, but it did make the world warm and fuzzy between hits. Everything above is much better advice for prevent and abort. Let us know what you decide and how it works out for you. Blessings. lance
|
Title: Re: Another new one !! Post by alilou on Apr 1st, 2011 at 1:12am
Hello all
Its been a while since I posted on here. Im still suffering but things have changed diagnosis wise. It seems the doctors have now agreed that I have Temporal Arteritis, and not cluster headaches as first thought by some. I am pretty young to be suffering from this but they agree now that it probably is T/A. After the first attempt at reducing the steroids the pain returned and I have some damage to the pupil in my right eye that could be permanent. Originally they advised me to reduce the steroids far to quickly and I had to go back to the 60mgs a day. I had been on that for more than 10 weeks now I am starting to reduce them again at a much slower rate and although the pain has returned it is bearable and manageable with some pretty strong analgesia. I am now down to 47.5 and reducing by 2.5 every 4 days. I hope they have got it right. The neurologist and rheumatologist have taken their time on agreeing that this might be T/A and not cluster headaches but they too seem to be swaying towards the T/A diagnosis. I don't know if this TA is the worse of the 2 evils. There is no cure and managing the pain with the lowest dose steroid is the only answer for now. I do understand it can go away of its own accord so Ill keep positive and hope to be my pain free self again one day. Iv now had the pain for more than 6 months and only the steroids have given me any kind of relief. I am trying to get back to work and life looking after my Mum with her alzheimer's is easier now I'm not in so much pain. I will pop in now and again and let you know how it is going. Lots of love and pain free times for as many of you as pos. Thinking of you all Ali xxxxxx |
New CH.com Forum » Powered by YaBB 2.4! YaBB © 2000-2009. All Rights Reserved. |