Zoejarvis

Hi Siegfried, I read your post about Indomethacin, it's great to read some good news on these kinds of forums. I too suffer from Hemicrania Continua, this was undiagnosed for a year until i saw a Neurologist and my doctor prescribed me Indo, he said, take this for 2 weeks and if it significantly reduces your attacks/stops them, then you will have a condition under the TACs Umbrella - HC,CH, PH etc... I took my first course of 1 25mg 3 times per day for 1 week and then increased my dosage to 2 25mg 3 times per day for a second week, this concluded my 'Indo time'. During this time i suffered only 1 attack and it was by far the most severe attack of HC I have ever experienced (ironic, right?). After I came off it, sure enough, my attacks were kept at bay for a month or 2 after i stopped taking the Indo - it was a huge relief and I was then diagnosed with Hemicrania Continua. That was back in summer, I have since had to go back on it as my attacks got more severe and more frequent. I stopped my most recent course around 4 weeks ago and my attacks have started again this week. I am waiting to see another Neuro to see what else can be done (likely nothing). I would continue on these stints of Indo to help my attacks, however, I suffer badly from the mouth ulcer side effect whereby after I have finished taking the Indomethacin, I get multiple (4, 5, 6!) mouth ulcers and they are incredibly painful and depending on location I cannot eat or even talk. I find my attacks always come on immediately after I stop doing something, i.e. housework, using a machine at the gym, walking up the stairs, taking a brisk walk from my car to my work in the rain... its like there is a build up of pressure in my head! I don't know... I suppose my particular interest in this post is that here we have people (Siegfried/Kat) who have tried Indomethacin and it has been successful, I was hoping to ask you guys if you have suffered these side effects and with your Paroxysmal Hemicrania - what are your triggers? I dont know how similar Paroxysmal Hemicrania and Hemicrania Continua are? Thank you all so much in advance! Zoe

The side effects seem to have subsided but it’s not helping my clusters at all. They’ve become more frequent which unfortunately as you all know isn’t good. I’ll stick it out until I see my neurologist, I’m not brave enough for the whole busting thing! Appreciate your input guys, thank you!

Thanks Mox, I’m sorry to hear that happened to you! I don’t know what they will try me on next because this can’t continue, I’ve had 3 attacks today so far. Shame my neurologist appt isn’t for another 6 weeks! It’s nice to know by reading this forum I’m not alone! Have you found anything that works well to keep them at bay?

After 6 months of suffering from CH once, maybe twice every 2 weeks I was diagnosed with Cluster Headaches. The pain was so severe it was like nothing I had ever experienced before. I was to and from the doctors so many times and left with strange suggestions as to what it could be. After one night when I had 9 attacks on the bounce I went to visit the doctor again, it was then he advised it was CH and I was prescribed 25mg of Topiramate on the proviso that it would help improve the severity and frequency of the attacks (this was about 6 weeks ago). I had an MRI scan and I am awaiting results. My headaches have become more frequent now - I get at least one every day. I am waiting to see a Neurologist next month who will decide upon the best course of action (medication wise as I’ve heard mixed things about Topiramate or Topamax). There seems to be no trigger other than as soon as I get home from work?! I have noticed a change this week in that I have been getting attacks when in meetings or simply sitting on my sofa at home doing nothing! I am hoping some of you can share your experiences with me - have you seen a change in your attacks since being put on meds? Does anyone have triggers? Thank you in advance!

After 6 months of having (what I now know to be) cluster headaches (after MANY mis-diagnosis’s) I have been prescribed Topiramate after being unable to take the pain anymore. Currently awaiting the results of an MRI scan to see if there’s anything going on up there and then pending visit to a neurologist! I have been on the good ol’ Topiramate for just over a week now and the feelings of confusion, constant tiredness, exhaustion and vacancy seem to have subsided - it was intense for the first few days and I questioned whether I could remain on the tablets however I feel my body could be getting used to them now. Until my doctor ultimately ups the dosage from 25mg... all to be desired for! I was also given a nasal spray (Imigran) to be taken when an attack comes on. I tried it for the first time at the weekend and to say it makes you feel ‘sleepy’ has got to be THE biggest understatement of the century, after 20 minutes of using it followed by gagging and trying not to throw up as this horrible taste lingered I passed out into some deep, long, Imigran induced coma for about 3 and a half hours. DEFINITELY won’t be using this at work! Maybe using this causes a disagreement with the aforementioned Topiramate? Has anyone else had an MRI scan for CH? And if so, what were the findings and subsequent advice given? Its good to see I’m not alone with a condition which is so wildly ‘not fully understood’! Thanks folks!