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Tom1956

Atypical Diagnoses

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My diagnosis from a neurologist was chronic paroxysmal hemicrania, atypical. I don't have the red eye or tearing. Indomethacin is somewhat successful in treatment, but headaches still sneak in most days. So I don't have clusters, I have chronic, cluster-type headaches, perhaps 9 days out of 10. Most headaches are fairly short in duration, around 10 minutes. But after them, my brain doesn't work well. Verapamil was tried, unsuccessfully. Mushrooms have no effect, medicinal or psychoactive. probably because I take Effexxor. I also need to take a benzo and trazodone, an SSRI, for sleep. I've tried to taper down on these meds, but it's impossible for me to do so without horrendous side effects. I'm going to try out some 100% oxygen in a can to see if that might help during the attack. Otherwise, 10 years in, I just live with them, on disability pension.

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@Tom1956

welcome to the forum. Sorry to hear that. Was it difficult getting disability pension? 

Kat

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Yes. It took about 2 years and I had to do all the work. The lawyer didn't expect me to win and just took the fee, and the administrative court judge acted like he was doing me a favor. ... Oh I should note that this is in the U.S.

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Hi Tom,

I have chronic paroxysmal hemicrania. I do not have attacks all the time but in recurrent blocks of 2-3 days. When it's active, I can easily do +20 attacks a day. Average attack duration is 10 minutes. I have also migraine and such an attack series always start with a light migraine that then escalates. 100 mg indomethacin stops it completely, I mean the hemicrania attacks... the migraine is not affected by that and just continue. For migraine, I use oxygen which -very atypical- abort nearly all my attacks.  Oxygen and indomethacin make me now nearly 100 % painfree.

what doses of indocin do you take ? I had no effect on 75 mg, 150 was much better but I did 3 x 50. I changed that to start with 100 and then 50 8 hours later and that worked much better ! So I would advise you to experiment a bit with how you divide the doses. I have no side-effects from indocin and it cancels the attacks completely; which should normally be the expected result if you have CPH.

You can try oxygen but I can tell you for CPH, it will make the headache a bit more bearable but don't expect a miracle. And anyway, attacks only take 10 min so until you opened your bottle and start breathing; the attack is already over. When I have CPH attacks I never use oxygen.

Something that often can work for CPH is topiramate. Maybe you can ask to give that a try. But really, this ugly indocin should be your friend. Previous month, I had one occasion where I felt a new series was coming but I did not take my 100 mg indocin on time... well, a few hours later I ended up in the ICU begging they would do whatever to stop the pain ! 

siegfried

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