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Siegfried last won the day on March 26

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About Siegfried

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  1. 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 the eye doctors in my neighborhood as my right pupil did not contract anymore. I was scared to have Horner syndrome. Doctors did the cocaine test and concluded it was not Horner and could not find any cause. So it looks there is quite some truth in this remark. Anyway with headache diagnosis you need a lots of patience. Difficult cases take years to diagnose properly. Co-existing migraine or latent migraine is it what makes it even harder. Best regards ! siegfried
  2. Siegfried

    Do cluster headaches always come back?

    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
  3. Siegfried

    Longest possible period of maximum suffering?

    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 moment where I think "something has to happen right now" ! Every attack period is like this and I have never experienced a "light" one... most ending up into an ultimate torture... unfortunately Best Regards ! siegfried
  4. Siegfried

    Permanent cure

    Shevel is very controversial. Great if it worked for you but I would not push his "cure" to anybody siegfried
  5. Siegfried

    Indomethacin is doing something

    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.
  6. Siegfried

    CH and Migraines

    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. It can even go that far the patient can not know the difference anymore between a CH attack and the migraine imitation. That is more or less my case as well. Even a high doses of indomethacin stops my attacks completely, I am absolutely not better off as the migraine keeps coming and is then just an imitation of the CPH. Exact the same pain, it goes not so high in pain level (max 7 while CPH can easily go to 9/10) but the big difference is that the CPH are only 5-10 min attacks while the migraine can last for hours and hours. I can imagine that your symptoms are very much standard which is that the migraine follows the pattern, cycle of the CH. I know it's a damn mess. People who have only one (migraine or TAC) can not imagine what it is to have both... its really unlucky and we have to deal with it the best we can Good luck ! siegfried
  7. Siegfried

    Indomethacin is doing something

    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. I have 3 doses per day so I keep as close as possible to one doses every 8 hours. Taking the pills with a glass of milk + some food is also better than take them with just a glass of water I feel. I read it can take up to 7 days to work so you have to give it some time to become fully effective. With me it took around 5 days to really kick in. Also the recommended doses are different. For CPH 150 mg/ day should be sufficient but for HC, they often need to go up to 225 mg/day.
  8. Siegfried

    Indomethacin is doing something

    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 for around 3 days. Now with the indomethacin it was different. Started to feel an improvement already after an hour - attacks became bearable. Around the 6th attack it got worse again and I had to clench my teeth and bite myself through the pain but also this faded away. Next day I had a rather mild background pain the entire day and no attacks which never happened before. The next day in the morning, the attacks came back through but after the 3rd one it all suddenly stopped and the cycle was over. This was probably due to the long time between the last indocin pill in the evening and the first in the morning the next day. I feel that the indomethacin works for around 7 hours and then the pain creeps back through. All the days that followed were completely painfree except when there was more than 7 hours between two doses. Then the background pain came through again but was very fast erased with the next doses. This is also unusual as I have never had a single day completely painfree. So for me this is a very good result and that is definitely the best preventive I have used until now - comparable with prednisone. Abortive qualities are nearly similar to Zomig. However I do not consider the result definitive yet. I can still not believe indomethacin should work for me. I want to do another trial later in the year. I just came out of my 1,5 month remission and the headaches have not yet reach their maximum. If I have the same effects during August/September, then I will be convinced indomethacin is the solution. From a diagnostics perspective, I let it to the doctors to draw their conclusions. Can be they reclassify me as having paroxysmal hemicrania (CPH) instead of CH, which should be more in line with the symptoms I am showing. Have a nice day !
  9. 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.
  10. 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/day. I have been in remission since a month but two days ago headaches started again. I must say that the indomethacin start to do something when I take at least 100 mg. Pain completely vanished within a few hours ! Does that mean something ? I really don't know anymore... I will have to do more tests with the indocin to get a real confirmation as it can also vanished out of itself and maybe it wasn' the indocin. But headache that respond to triptans and also indomethacin is unheard of. So very weird... I'll keep your guys posted
  11. Siegfried

    This Throbbing Headache in the back of the head!

    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
  12. Siegfried

    More than 12 mg Imitrex in 24 hours

    very good remarks from Pebblesthecorgi; you better read his response twice
  13. Siegfried

    Does Advil working mean it’s not CH?

    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 !
  14. Siegfried

    CH without pain?

    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 around 20 hours. Migraine starts very gradually and also fades away very gradually. There is no abrupt start or end. CH is different. This stops within 10 seconds or something. Also the pain is very different. Migraine is diffuse (you can not really pinpoint a location in your head) and sick making. CH is sharp, focused and brutal. Each have their own problems to deal with. I am always very surprised how those two conditions can influence each other and take over characteristics from each other. The difference between a cluster shadow and light migraine is often impossible to make. But I can know the difference by using oxygen. CH respond on oxygen very well and if not abort, it should diminish the pain very rapidly. However for migraine, oxygen does not have any effect. On the contrary, the breathing through a mask will make your migraine attack immediately worse. There are some other key differences as well that have been pointed out by CHfather. But anyway if you have more questions pls ask ! All the best ! siegfried
  15. Siegfried

    After 3 1/2 years the Deamon is back...arrrgh

    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.