After 7 years and thanks to Red who suggested on this site that I was having symptoms of SUNCT headaches it seems I have found out what is wrong with me. I investigated this further and within this group of SUNCT type headaches came across Hemicrania Continua and the symptoms were everything I have. I found out the medication needed is Indomethacin and so off I went to my GP to tell him what I suspected and she agreed to prescribe me the medication. She has started me on 75mg once a day and I could tell it was working the day I woke up after the first dose. Today is the second day and I'm feeling better still. I take Lyrica as this relieved the pain so I will have to come off this slowly but the fact this is working so well has given my a proper diagnosis at last. I just wondered if anyone else has this condition or if any one can give me advice on this. My GP is clueless about this and doesnt really know how to treat it and its a bit unnerving to say the least that I have to tell the doctor what to do. Any advice would be most welcome and Red I cant thank you enough and if I'm ever your way I'm going to give you an enormous hug
Been here 2 years and never heard of this ---- put in search box above --- maybe that will help !
If I had a dollar for everytime I had to tell a doctor what to do, for me or my son -- I could have a carribean cruise paid for!
Hemicrania Continua is the first diagnosis they were working on me for before they did the pressure point test to show TN2. I keep that persistent headache too, and have just started on Indo again as it is the only thing prescription that has helped me without the side effects being worse than the TN and constant headache. It helps, that said, it only dulls things. Better than many other things I have tried. It is also very inexpensive as a generic, at least here in WV, USA. And you're right, it is an anti-inflammatory (NSAID)...they are not sure why it helps with neuropathic pain.
Stephy, we have a small group of Persistent Headache sufferers over on Facebook if you would like to join there as well. The support here, as you know, is wonderful, but I figure there is always room for more support. Several of the members ther have HC. Some of us have TN with persistent headache. Here's the link:https://www.facebook.com/groups/264680010218893/
I was diagnosed with HC in 2010 and wrote about my experience at http://www.hemicraniacontinua.com.
Mark
Hi Mark I looked at your website and it looks like you have been to hell and back too. I'm so sorry that you have this awful condition and I hope that you continue to manage the pain. I was just wondering what preventative medication you take. The Indomethicin is working but only lasts about 6 hours so still taking Lyrica and Tramadol at the moment also. I have written directly to the consultant in London to try and get to see him quickly. I'm hoping he will be interested as I know this condition is rare or probably rather rarely diagnosed!
Hi Stephy,
I guess you didn't read the whole website;-) I celebrated my 2nd year pain and meds free in February. My website details my whole experience from onset to cure/remission in the hope it may help others who suffer from HC.
Mark
Hi everyone
Just to let you all know that the Indometacin is working brilliantly. For the first time in 7 years I am not in pain. All the other symptoms have cleared up too. Mark, I have tried the procedure (not sure if I did it right!) that you have had success with and it actually made my headache worse. I was reading up about this on other websites and it certainly works for some people. Thats not to say it wont work for me in the future. I do think though that the problem stems from my neck. When I started to take the Indometacin the pain sort of reversed from the top of my head down and is completely gone in my head and face but as the Indometacin wears off I still have terrible pain in my neck. The doctor has said that if I can get on top of the pain completely it breaks the cycle and should go into remission. Finally I know what is wrong and I'm not actually a nut job! I have to say, I have been treated as such by many doctors over the years. I was actually sent an appointment for psychiatric evaluation, unbelievable. Needless to say, I told them in no uncertain terms what they could do with it. It seems that the only way is to investigate ourselves and places like this website are essential in getting the help we need, Thank you everyone for your kind words and support over the years. You cannot imagine how much this has helped me and gave me the strength to carry on through so many years of constant pain.
Saw Dr Matharu at London Neurological Hospital on Saturday and diagnosis of HC confirmed. Started oin Botox which is helping already although not completely but apparently will get better as time goes on and I have more doses. Not available on NHS here although cheaper than some of the other treatments that are available on NHS - Go figure! So costly for me as I have to get it done every 3 months. Also withdrawing from unessecary meds so off work feeling rough. Feel like finally I'm getting somewhere. I have a long way to go I know that but at least I'm not being treated like a headcase now