Jump to content


Advanced Members
  • Content Count

  • Joined

  • Last visited

  • Days Won


Everything posted by Siegfried

  1. Hello Squizzlet, I am having attacks of paroxysmal hemicrania during my migraine attacks. Once the migraine reached a certain intensity, the hemicrania attacks start. They go around 7-10 min per attack with breaks ranging from 15 min up to 1 hour and can go on forever. If a PH attack is coming, the migraine disappears almost completely and once the attack is over, a few minutes later, the migraine starts to come back. Indomethacin only works for the PH but not for the migraine. Now I take candesartan for migraine and that works really well. I am on 16 mg. I had migraine attacks nearly ev
  2. Hi Patheticfern, May I ask you what doses you take ? I both a 10 ml bottle a while ago that has 15% CBD oil. The seller told me this is the lightest form of CBD for medical application. Can go up to 30 %. For me to have a little bit of an effect, I need around 20 drops while the guy in the store advised 3 drops per 3 hours... so much it makes me unwell. Maybe I need a higher concentration ? And how do you dose that ? Once a day or several times a day ? I have chronic paroxysmal hemicrania and chronic migraine. For the CPH, I need to take indomethacin to get it under control. Unfortun
  3. Very nice video Tony ! I want to extend it to the lesser known and even much rarer "ugly sister" of the suicide headaches I am dealing myself with: paroxysmal hemicrania
  4. Hi VaderXanth, That sounds terrible ! And it is a terrible story ! I always think this must be one of the worst. People that never got a headache before in their life and then at later age, suddenly get episodic or chronic CH and have do deal with this entire mess from the one day to an other... "from zero to hero..." I am sure you will find your way with the support and the help you will get here. CH father gave you a good starting point. All the best ! siegfried
  5. Come on !! Get all your courage together and fight that thing ... don't loose courage
  6. Yes that is correct and chronic does not always mean you have constant attacks 24/7. Many CH'ers are labeled chronic with 1-2 attacks per month. Chronic just means there is no remission.
  7. I got my first migraine attack when I was around 10 years old. That is now 42 years ago. Being one day (always in the weekend) per two weeks in my bed with serious headache, and strong nausea had been a part of my life as far as I can remember. I never made a problem of it. That was just how it was and I did not know anything else. 8 years ago, when I started to experience TAC symptoms, that was much more difficult to deal with. I was not used to that kind of extreme pain. First they diagnosed it as CH which I believed for a long time it was. But it did not fit the CH pattern so that was
  8. Hi maskedmarvel, What is exactly your fear ? Do you think it will get gradually worse and you will turn chronic ?
  9. You can ask MoxieGirl. I remember she has this ping pong thing sometimes. Maybe she can tell you more about it. Hope you get better soon as with the colder weather, COVID and the headaches, its not easy siegfried
  10. This looks like a migraine attack, which is very common with CH patients. TAC's tend to activate migraine during cluster periods in people with 'migraine genetics'. These people normally don't have migraine but it sits there hidden and it gets activated during CH cycles and give them these shadows. "...or patients with now accepted chronic migraine (Olesen et al., 2006), is the background genetic rate of migraine much higher than previously considered? It may simply be that in patients with two genetic hits—PH and migraine, the migraine biology is more likely to be activated than wit
  11. Hello Marlon, Welcome to the forum. I am 51 m with chronic migraine and chronic paroxysmal hemicrania (CPH). This forum is very good with very helpful people. Once you joint it, you won't leave anymore ! Good luck with the headaches... but that will work out as I see Batch gave you already some instructions siegfried
  12. I am chronic (CPH and HC are almost always chronic) but every year I experience a short remission of around 3 to maximum 4 weeks. When I get into such a remission, headaches stop abruptly and I then have zero symptoms with no medication. 3 weeks later headaches suddenly start again where they left off. siegfried
  13. I will have my first flue shot in November (I am on the list now) as I want to diminish the risk having flue and COVID at the same time. I never got a flue shot before. So I will see how it interacts with my headache but I am not so worried about that as I have headache every day anyway if I don't take that horrible drug with the lovely name 'Indomethacin'. siegfried
  14. I also thought for a long time it was dependent and I tracked it for a while. Conclusion was for myself there is no real correlation to see between weather and headache frequency. But still... every time weather gets bad... I feel I get hit harder than usual. siegfried
  15. Hi Nicole, I have chronic migraine and chronic paroxysmal hemicrania and first they thought I had CH (because it is very similar) and they gave me oxygen. To my big surprise, oxygen worked for migraine because it is normally supposed to work for CH only ! But I had to do 20 min 15 l/min immediately at the onset of the attack. Once the migraine really comes trough, it does not work anymore. So the trick is to act fast. I have a success rate of 70-80 % with oxygen. It brought down my use of triptans from 8 - 10 a month to nearly zero. What you can try is go to your closest ER whe
  16. Hello friends, I usually take 2-3 days/week indomethacin to combat my CPH. Somewhere between 50 and 150 mg per day. With this regimen, I haven't had an attack since July (I then ended up in the ER because I skipped it) and it feels weird. Previous week, I started to believe it was really gone and was in for an experiment - no indocin this weekend... Well it didn't end well. Friday was OK but in the evening I felt something I recognized from in the past. Saturday morning 8 am attacks came in full force, 7-10 min per unit and after an hour I had already 3. Incredible pain like so
  17. Good to hear this works ! As said above, these are anti-inflammatory and can provide a good help in combating headaches Sometimes I cook fresh ginger in a cup of water (like a tea) and drink it. It is very spicy ! For tumeric, best is to have a high quality tumeric powder and add a spoon to a cup of hot milk + a bit black pepper.
  18. These clustermasks are one of the best things that exists for headaches. Something like a "hidden secret". I use it for migraine, which is highly unusual, and have an abortion rate of 70 - 80 %. I do 15 l/min for 20 min. I do this every morning and can not skip otherwise my day will not be a good day. The factory is now in the process of putting new regulators on the bottles and they have also 25 l/min now but that is too much for me. Aborting headaches with this mask is a laborious process and demands a fair amount of energy to keep going for 20 min. The regular non-rebreather mask
  19. Hi Nick, Unfortunately you will have to take into account that this can indeed be a lifelong adventure. I once read a study about this and that is what I remember: An early onset has a higher chance on an early termination. If you get it later in your life, then it will probably also take longer Many doctors will say it goes away once in later 40's or early 50's. There is indeed a tendency to longer remissions (several years) once over that age but from what we see here in this forum, many come back in their 70's having attacks again after having 10, sometimes 20 years of remi
  20. This is very powerful ! well done Moxie
  21. I am taking melatonin now for a month. I don't know if accidental or not but it looks like headaches are gradually getting better. We have now again a period of unstable weather (it normally get bad then) but headaches stay very moderate - easier to handle. Yesterday it was a bit bad again but just 50 mg indomethacin was sufficient to get painfree for the rest of the day. Side effect of melatonin are very vivid dreams. So, Thanks for this recommendation ! siegfried
  22. Hi Zoe, Thanks for your reply ! I am very glad to see other people here with the hemicrania syndrome as there aren't that many around. Many people in this forum think they have hemicrania or show the symptoms but most of them fail the indomethacin test. From what I understand, paroxysmal hemicrania are short cluster-like attacks but no background pain in between. PH is almost always chronic but there is also a rare episodic variant. Hemicrania continua consist of 2 parts. A continuous background pain that is there nearly 24/7 and exacerbation on top of that background pain
  23. Hi Mox, Some things here after an exacerbation series: restlessness : like an extreme adrenaline rush, can go on for an entire night - like I do not know what to do with myself If it was bad and go to sleep, when I close my eyes, everything looks like lighten up (its not dark) and all kind of shapes start to appear, like crystals in blue, green colors. That can go on for a few hours after it wears off Feel cold and unable to heat up When I have the continuous background pain, suddenly out of nowhere, nose start to run and unable to breath through my nose like I am s
  24. Hello Batch, That is weird. After my results came in, I got a call from the doctor my Vit D levels were too high and asked me to stop immediately with supplementing Vit D. I took my results then with me on my consultation with the headache specialist and there they said the same. Value is OK they say but should not go higher than that. So I did what they asked me and I stopped. I will restart supplementing again after the summer. I take indomethacin with pantoprazole most of the time. siegfried
  25. That looks really promising Bryan ! Keep up the good work ! siegfried
  • Create New...