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Everything posted by Siegfried

  1. Hi Dsstaker, I remember I read once that this is not uncommon for CH. siegfried
  2. Thanks a lot for your message Jon ! Yes that is my biggest fear as well... My employer is tolerating me being absent because of headaches but loosing the most fundamental skills for doing my job properly... that is unacceptable. I think I will give it a try and then I have at least a confirmation for myself if this medication is a solution or not. I have taken the full regimen in the past for around one year. It was very expensive to buy all these products and I did not really experience any change in my headaches. Now I take only Vit D3 (usually around 5000-7000 UI/day) and 400 m
  3. Hi friends, I thought that headache attacks would self-quarantine during this COVID outbreak. Well for me, it worked for a month up to today After a difficult 2 months, I got the deserved break in March and here we go again... Woke up with a dull headache this morning and by 9 am I experienced the first attack. By noon, I was already experiencing my fifth attack fast ramping up in severity. 100 mg indomethacin stopped the attacks within 2 hours and later I had to take a zomig pill to remove the residual migraine. Currently its rather clear now in my head. I hope this is not the sta
  4. Hi Kat, It can be you have CH, migraine or both... See my earlier posts for my experience with co-existing headaches. It is extremely difficult to distinguish when you have both as migraine tend to mimic the co-existing headache. Many people pretend to have "shadows" but I am sure in most cases it is actually migraine. They do not have it explicitly but they carry the gene and it comes out during cluster periods. Then the migraine tend to imitate the CH but in a lighter version. Very interesting remark about the pupil of the eye. I remember around 5 years ago, I went around to all th
  5. Hi Dlions20, Occasionally we are seeing people here in their 70s asking on how to treat their first CH cycle after a remission of sometimes 20-30 years So I would say, never consider this thing as "done" or you can be in for a nasty surprise later on. And when you are pain-free, always consider it as a remission and enjoy that time :) siegfried
  6. Hi Arrow, What is 10 ? I used to never consider an attack as 10 as I always think even more pain can be inflicted. So I consider 9 as a maximum possible. My attacks (Paroxysmal Hemicrania) come in batches non-stop over a period of around 1-2 days. Attacks take on average 6 minutes each. First ones go well but after 5-6 attacks it start to ramp up. They approaching 9. Mostly a migraine attack has then also already started and is also fast ramping up to 7. Those 2 together become unbearable. Maximum what I can stand is 6 to 8 hours of this which is around 8 to 10 attacks. That is the m
  7. Shevel is very controversial. Great if it worked for you but I would not push his "cure" to anybody siegfried
  8. Hi Moxie, Did indomethacin did something for you ? I found that 150 mg did not confirm completely but 225 mg absolutely stopped all attacks. But it does not play good with my migraine and therefore it is not a real solution.
  9. Hi Ihdc, There is definitely an effect that both have on each other. Migraine is well known to imitate a co-existing TAC and can do that damn well. For 8 years I have been diagnosed with CH but the specialists recently have revised it to Chronic Paroxysmal Hemicrania (CPH) and I also have migraine since I am 12 years old. So even I am a man, I am keeping very much on the female side of the headache spectrum Since a few months, I am now under treatment with one of the most renowned CH experts in Europe and he told me this is a typical pattern when migraine and CH are co-existing
  10. Hi Kat, This is also my second attempt. I tried it a week before this trial and it also completely failed and had to discontinue after 2 days. After the second day, I woke up ill like a dog and started vomiting until in the afternoon. Then it got better. Now for this second trial, I did not have this side-effect. Only terrible pain in my stomach the first 3 days but that went away. I take Pantoprazole to protect the stomach. Now I am completely fine. Dizziness I have occasionally and it last around 30 min but I am fully functional so no big deal. I also took a more stringent approach
  11. Hello friends, The first 10 days of my indomethacin trial are behind me. I started to take it 10 days ago when a new barrage of attacks started. I was advised to take 150 mg/day when they started and continue for 14 days. When they started I took 100 mg and normally when they start, the intensity is ramping up one after the next and the background pain as well until it becomes unbearable and need Zomig to temporarily abort it or oxygen to make it livable. I can stand the entire thing without abortion for a maximum of 4 or 5 hours. I am usually on one 10 min attack every 30-60 min non-stop
  12. Siegfried


    Thank you very much CHfather !! I was looking for this kind of information for a long time but I could not find anything about this. So I just finished phase 2 of my experiment. Stopped the indomethacin yesterday and now, 24 hours later the pain is back. Not strong but it is clearly there. I will repeat this procedure a few more times to have a clear confirmation.
  13. Siegfried


    I am also back on indomethacin. I have tried a low dose for a few days in the past but it did not help. In November I went to the hospital for my yearly checkup and I told them my attacks are rather short (avg 10 min) and can go on the one after the other for days, the doctors were thinking on CPH but on the other hand I have an excellent response on triptans. So they did not know what to think about it. But to rule out confusion I asked to do the INDO test again. The doctor said that for CPH, 150 mg/day is a sufficient dose and should do it. For HC, higher doses is required up to 225 mg/
  14. Migraine can easily be bilateral while CH is rather strictly unilateral I have never got any success with O2 for migraine. For CH and CH shadows it works very well but for migraine there is no effect. The intense breathing that is required even make it worse. For me O2 is a very good way to distinguish between a CH shadow and a light migraine headache. Without the "O2 test" it is very difficult to tell the difference. siegfried
  15. very good remarks from Pebblesthecorgi; you better read his response twice
  16. I would say; definitely not. Ibuprofen is not a diagnostic tool for CH, such as indomethacin is for hemicrania. So if it works or not, with regard to diagnosis it doesn't matter. I have never tried this but I use Excedrin Migraine sometimes. Results are very poor and often a hit or a miss. If it does something, it gives me a little bit of relief for an hour but mostly it does nothing. Oxygen + a cup of very strong coffee gives much better results. If you look for a diagnostic tool for CH, I think oxygen comes closest. All the best !
  17. Hello Clusterfaked, I have both, migraine and CH. Migraine started when I was around 10 years old (so going on for 40 years now) and CH started in 2012. You can just look up my first posts in this forum as I have given a lot of detail about it when I started to have CH. "Cluster migraines" do not exist. But there are some people that have both conditions. Mostly the CH attacks will come first and that will trigger a migraine attack. That is very common. Having those together is far from fun and to be honest, it's a complete nightmare. The average time for a migraine attack is a
  18. Be careful with prednisone. It is great to take it for a few weeks but in the long term, it can have all kinds of nasty side effects. Diabetes is a major one and it can also have a huge psychological impact. But yes it works very well. I was at the emergency a month or two ago and they gave me an injection with prednisone because nothing seems to help and the headache woudn't die. One or two hours later, I started to feel already an improvement and finally went home more or less pain free.
  19. Hi Dlions, Based on your symptoms, typical cluster headache I would say... Background headaches between the attacks are very common and can be very severe. Some have them and others don't. Some posters mention hemicrania continua. I would say if you have a good response on triptans or oxygen, then HC can easily be ruled out because hemicrania does not go away with triptans. If not, then I would consider an indomethacin test. Optimal doses varies from person to person. If you take that for a few days and your headache completely goes away, then the chance is very big you suffer from
  20. Hi Dlions, Welcome to this excellent forum ! I am having clusters not exactly in your way but something more or less similar. First one starts, then have nothing or some kind of migraine-like background pain from 5 min up to 1 hour and then the second attack starts. This process repeats itself non-stop for 2 up to 6 days. Then it stops and for me that is then that my cluster is over. I can then have one, two or 3 weeks break up to the next cluster. That is going on for the entire year except for an October-November break of 1,5 months. Very often these clusters will also trigger mi
  21. In the new ICHD-3 classification, the remission period must now be >3 month to be episodic, if not its classified as chronic while under ICHD-2 you was already episodic with >1 month remission. So a lot of episodic patients became suddenly chronic... quite weird if you ask me.
  22. Thanks for the responses ! Batch, thanks for the info ! I used to drink twice a week a cup of hot milk with a spoon of tumeric and black pepper. I stopped that but I started this today again + other supplements. All these things are anti-inflammatory and should hopefully have some effect on the frequency and severity of the CH attacks. Will let you know how it goes. siegfried
  23. Hi Wesconsin, Welcome to this forum ! Although this forum is mainly dedicated to cluster headaches, migraine is also discussed often here. If you want to get into a specialized migraine forum, I recommend the folks on migraine.com. There are always huge discussions going on there about treatments and especially the latest ones like Aimovig. Please have a look there. But indeed, 90 % of the posters are women; nothing wrong with that but it is just a fact that migraine tends to appear more in women than in men. For CH it's rather the opposite but these male-female differences are diminishin
  24. Hi all, I am quite on a bumpy ride lately. After having been hospitalized a few weeks ago, I am back at home for a week unable to work. A new cycle started on Monday afternoon with non-stop attacks every two hours. Serious migraine-like background pain in between so not much relief between the attacks. I passed out 2 times from the pain. 3 Zomig nasal sprays + 2000 liters of oxygen later, its now Thursday afternoon and it has finally stopped. I still have now a light migraine headache on the left side (while clusters are on the right) but that means it has ended. A left side migraine
  25. I am currently on Prednisone. Arrived in the ER previous week. Attacks started on Friday and continued into Saturday but the background pain between attacks did not go down anymore. Normally it falls back to KIP 1 or 2 but now it went just to a 6 or 7 and with the next attack back to a 8-9. Could not stand the pain anymore and triptans gave only relief for a few hours. I saw no end in sight so I tried my luck in the ER on Saturday evening. Drove to there between two attacks and at my arrival, got already another one. They put me straight onto the oxygen to make it a bit milder which worked wel
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