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Siegfried

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Everything posted by Siegfried

  1. Siegfried

    Waiting on my 2nd cycle

    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 remission. After many years, most patients come to a point they learnt to deal with it very efficiently and so they do not need help anymore from doctors or specialists at later age If I look at myself, I got my first migraine attack when 12 years old, now I am 51 and still no signs of stopping. So that is 39 years and that as a man ! Migraine is called a women's disease ! Then at 43 yrs old, I got suddenly plagued with Chronic Paroxysmal Hemicrania , the female version of CH. So I would say, never take these pain free periods for granted and do not count on a "magical recovery" but think seriously about a strategy on how to deal with this the best you can. All the best ! siegfried
  2. Siegfried

    Cluster Headache Poem

    This is very powerful ! well done Moxie
  3. Siegfried

    Paroxysmal Hemicrania -> Day 4

    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
  4. Siegfried

    Paroxysmal Hemicrania -> Day 4

    I am unfortunately back in a new attack cycle. 4th day now although I did not have much problems with it and could function normal as indomethacin did a good job of stopping it. Yesterday however, I took the last 50 mg in the afternoon so its working must have been finished overnight as around 6 am, I woke up from quite heavy subsequent attacks, hellish pain in my right eye and my nose stuffed I could barely breath. Tried to sleep a bit but could not and 8 am finally got up to have my breakfast with another 100 mg indocin. We are now 9:30 and the stuff starts to work. Pain in the stomach and dizziness is increasing but the headache is proportionally diminishing. No more attacks and the sharp continue pain in my eye is fading away. So all by all it is going to be an OK day but I don't know how many days more. It's getting time this cycle is over. Good we have a holiday tomorrow and Tuesday (Belgian national day)! I am still trying to find a good trade-off between indomethacin intake and overall health. I take as less as possible but over the last year, my kidney function has diminished a little bit from 90 % to 81%. Doctor say its perfectly OK and no worries to take the indocin but my gut feeling tells me I better be careful. I try to take as less as possible and follow the guidelines from the hospital: Not more than 3 subsequent days and maximum 150 mg. Oxygen does a terrific job on the migraine (very unusual) and zomig does an OK job but no way as effective as the indomethacin. I tried Imitrex injections lately and was very disappointed. It did not do anything and if I would have injected myself with 6 mg hot water, effect would have been similar. My vit D levels are around 85 ng/ml so a good range but it does not make any difference on my headache situation. All the best and courage to all those who struggling with a primary headache condition ! siegfried
  5. 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 !
  6. Siegfried

    Indomethacin is doing something

    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. These 'attacks' can look like whatever what. Sometimes they can mimic a migraine attack, a CH attack, a PH attack. I have the short PH attacks but I also have a lot of continuous background pain. At first the indomethacin only worked against the short attacks so it was labeled PH and the continuous pain was labeled as chronic migraine. But what do I see now ?? The longer I take the indomethacin, the better it works and it now also works against the continuous headache ! So maybe I have HC and not PH. I read a study lately (but can not find it back) that concluded that PH and HC are the same entity and often a patient can transform from HC to PH or backwards. I have a very good response with oxygen, which is quite weird. So currently oxygen and indomethacin is what I use. I used a lot of triptans in the past but these are barely working so I do not take them anymore. I seem to be pain free during long dry spells, like heatwaves. But once the weather become a bit unstable it starts again. We had a heatwave here for 10 days and I had only 2 days pain. but as soon as the low pressure kicked in, headache came back. Always wake up at night in the early hours with pain in my eye, like someone punched me. When I get up I do 20 min of oxygen which can bring relief for some time. If it is too strong, I take 100 mg indomethacin. It starts to work after 1,5 hours and keeps me pain free for 7 hours. If it comes back after 7 hours, I take another 50 mg. But I try to keep my indocin intake to a minimum so if it is not too bad, I try to keep it at bay with oxygen. I have always headaches, 24/7, 365 days a year. But it is mostly not so bad... more like a pressure on my eye or some kind of migraineous feeling. If I let it, it will get stronger and escalate into PH attacks or sometimes like strong jabs and jolts. Before I got indomethacin, I suffered much more. With the indomethacin, it is very good under control and fortunately I have very few side effects. I added a study here about HC and another one about PH ... one of the most detailed I ever found about the subject. Best Regards ! siegfried Hemicrania continua.pdf Paroxysmal hemicrania - a clinical study.pdf
  7. Siegfried

    Post Attack Symptoms

    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 suddenly in the middle of a big cold. Can go on for an hour and that suddenly vanishes as unexpected as it came. All the best ! siegfried
  8. Siegfried

    Paroxysmal Hemicrania -> Day 4

    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
  9. Siegfried

    D3 Experience

    That looks really promising Bryan ! Keep up the good work ! siegfried
  10. Siegfried

    Constantly drooping eye

    I also have permanent miosis (pupil that does not come bigger when in the dark) on my right eye. I went to see an eye doctor several years ago because I was afraid I maybe have some tumor or something. What he did was drops of cocaine in the right eye. If everything is normal, the pupil should suddenly become very big.. what it did. So this took away my worries for something more serious. These autonomic symptoms are often weird.. like two days ago, I suddenly felt really unrest and my nose was running as I suddenly go a big cold... the typical symptoms when I am having attacks but absolutely no sign of a headache at all. After an hour or two everything came back to normal.
  11. Siegfried

    I think it's official

    Hope the busting works and you can get rid of these attacks ! siegfried
  12. Siegfried

    Paroxysmal Hemicrania -> Day 4

    hi, I suspect your system is infected with some virus better check :)
  13. Siegfried

    Paroxysmal Hemicrania -> Day 4

    Hi CH Father ! Thanks a lot for your responses and references ! Yes I read about melatonin before as treatment for HC and PH but haven't paid attention to it. So I think it is really worth trying and I will get melatonin and see what it does. I am on day 5 now and I feel it is running to it's end but the migraine is making it's entrance now. I know how to handle that one. So for indomethacin, I got the following: Day 1 -> 100 mg, Day 2 -> 150 mg, Day 3 -> 150 mg, Day 4 -> 175 mg, Day 5 -> 25 mg. And that should be it for this time. In my experience, coverage from indometacin takes around 6-7 hours and so during the gaps between two doses, the PH tends to reappear. I also know about GOM nerve block with medrol and lidocaine however it's a bit strange here. From the two major hospitals where I am for follow-up, one is doing it as a standard procedure and the other one not. I asked why and it seems to be a decision to go with a certain procedure or not. They will have their reasons why they don't do it. What I also experience is that the indometacin becomes more effective the longer I take it. This seems to be in line with most hemicrania patients that can diminish their doses over time. Thanks again and all the best ! siegfried
  14. Siegfried

    Diagnosis

    Hi Eggman, A TAC can come with many different autonomic symptoms. It is not always a red eye or tearing eye. It can also be a stuffed or running nose among many others. And the most important, following the ICHD-3 classification, it says: C. Either or both of the following: at least one of the following symptoms or signs, ipsilateral to the headache: – conjunctival injection and/or lacrimation – nasal congestion and/or rhinorrhoea – eyelid oedema – forehead and facial sweating – miosis and/or ptosis a sense of restlessness or agitation So technically, the most important symptom is a sense of restlessness. And that is also how a probable TAC is defined these days... strictily unilateral sidelocked headache with a sense of restlessness. That is a red flag for a TAC. If you are restless, other autonomic symptoms are technically not required for the diagnoses. Apart from the above autonomic symptoms there are also alternative ones: – conjunctival injection and/or lacrimation – nasal congestion and/or rhinorrhoea – eyelid oedema – forehead and facial sweating – forehead and facial flushing – sensation of fullness in the ear – miosis and/or ptosis I have myself very little eye tearing, quite some nasal congestion but the fullness in the ear is a big one for me ! I don't have CH but CPH but that doesn't matter... the autonomic symptoms are the same All the best ! siegfried
  15. Siegfried

    Best breathing techniques with O2

    Hi Kat, This will interests you... http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1313766756 Look for the entry from Batch (in its typical large bold font ) and he explains that breathing method in detail. For me that last crunch as deep as possible to get the last part of CO2 out of your lungs before inhaling again is the most important part of the technique All the best ! siegfried
  16. Siegfried

    Atypical Diagnoses

    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
  17. Siegfried

    Zolmitriptan AM/PM

    Hi Tomas, If you want to take triptans this way, you should switch to a triptan with a long half-life. I currently thinking of Naratriptan or Frovatriptan. These two are also more gentle and cause less side effects. But I agree with other posters... trying to get through your cycle with triptans is not a good idea. You must try other means. All the best ! siegfried
  18. Siegfried

    When you know better but do it anyway!

    Yes, migraine is hard to beat and is very much underestimated. I once have been to a meeting for migraine patients and most of them, sometimes very young, their lives were completely destroyed. Not only from the migraine itself but from all the medications they took and the side effects of these medications. They were not able to have a normal life. Big problem with migraine is the high chance on rebound or medication dependent headaches. It's a spiral that once you are in, it goes only downhill. I have been very lucky that somehow oxygen worked for my migraine, which is highly unusual. It can abort around 70 % of the attacks, now for around 8 years now I am using that. I am on my 5th day of Inderal now. So far, so good... no headaches for now. Not taking the indomethacin anymore. Only problem is that my heartbeat is only around 45b/min and that on 80 mg. I normally should build up to 160 mg but with such a low heartbeat, I don't think that is going to work.
  19. Siegfried

    Prednisone

    I did it once. I got nearly instant relief (was an injection first) and it last until I took the last pills of tapering down. So about two weeks. Then pain started again. But even medrol works very well, this is not the kind of medicine you should rely on. It's simply too dangerous. O2 is indeed the better route but you guys seem always having difficulties to get it. Here in Belgium, once a diagnosis of CH or even a diagnosis of a probable TAC is made, the patient is automatically entitled for medical oxygen lifelong, completely free of charge and as much as he wants/needs. Only disadvantage is that all the bottles have standard regulators build in that can do maximum 15 liters/min. So it is not possible to get 25 liters or use a demand valve. If one wants that, he has to look for his own private supplier and it comes also at his own cost. siegfried
  20. Siegfried

    When you know better but do it anyway!

    Hi Mitt, I am in a similar situation. I have chronic migraine and chronic paroxysmale hemicrania. CPH is only triggered during migraine attacks, never on it's own... that is very weird. Usually between 10 and 20 attacks/day during a 3 days migraine period. Started with indomethacin a few months ago... have not gotten any sign of CPH since. But as indomethacin is not the kind of medicine to take long term, we decided now on another strategy. Propanolol (Inderal) to suppress the migraine, in the hope the CPH will not get activated anymore and will stay away as well. I hope that works out... Never got luck with D3. I take all these vitamins for over 3 years now but because of other benefits they have. It has not made any difference in my headaches...unfortunately I also got the sumatriptan injections now. It doesn't work for migraine. I barely feel any difference. Zomig is 100x better for migraine. For CH it works because a very fast effect is needed. siegfried
  21. Hello Tony, I know this is though... She said she tried indometachin, but did she go far enough to see if it actually works ? For hemicrania continua and paroxysmal hemicrania, indocin response is an absolute must otherwise the conditions are ruled out. So I would say, as long as there is no confirmed indo test, the hemicrania continua diagnoses is still unsure. When I did mine, I was also very bad the first day I took it. I was very ill, and vomit the entire day and my stomach hurt terribly. But because it was so important to has this test done, I did a second attempt one week later, and what ? ... no side effects ! Just a bit dizzy and quite some stomach pain the first days. So there is a possibility if she try it a second time, the side effects will be less... it's worth a try. Another option is have indocin as an injection (if that is available in Finland, I don't know) but this way you bypass all the stomach and digestion problems it brings and with an injection, the patient is already painfree within 1 or 2 hours, while with pills, it takes a few days up to two weeks if you do it the first time. If I would be her, I would really try to get that indocin in my system somehow to see what it does. Otherwise, for hemicrania continua and paroxysmal hemicrania there are unfortunately not so many options I am afraid. Topamax can work... but I don't know about anything else. I have been so bad myself for 8 long years and it is only since I got indomethacin that my situation has improved a lot ! But it is still a trade-off between the disease and this medication and try to find the best balance. I think she must also to find a good headache expert. Some are really good (try to look up some names from published papers) and if she documents her case really well, she can be surprised how fast she will be able to get a consultation. Best Regards ! siegfried
  22. Siegfried

    Topamax thoughts?

    Hi Dehabel, I tried it a month or two ago. Started with 25 mg and after just 4 days I lost my memory. Could not remember anything anymore. I was unable to work as I was sitting before my computer screen try to read my emails and no matter how hard I tried, I could not remember the context or what it was about. I then wrote a mail full of spelling mistakes to my neurologist that it did not work out. Stayed a week home from work as I was not able to do anything anyway. Also was not able anymore to brush my teeth... my toothbrush flipped out of my hand all the time. When I stopped with it, my faculties came gradually back after 3-4 days. Just like with any medication, some are over-sensitive to it, and for others it's a wonder drug without any side effects. Best Regards ! siegfried
  23. Siegfried

    Anyone else having this oxygen issue?

    Hello, Get the cluster O2 kit as advised above. If you are a CH sufferer and respond to oxygen that is one of the best purchases you can make. Breathing through the O2 kit is much more laborious than a normal mask so you have to breath with your mouth for a good effect. If breathing through the nose, the oxygen in the tank is too dry. You must add a humidifier (its a small tank of distillate water where the O2 is bubbling up) to eliminate that problem. But no need for that with the O2 mask as breathing through the mouth is the better option. siegfried
  24. Siegfried

    Indomethacin and dizziness?

    Hi EyecePick, Hemicrania sufferer here... so I know a bit about indomethacin It is heavy. First when I took it in November 2019 to test on 150 mg I was absolutely miserable. Vomiting, dizzy, terrible stomach pain and just feeling ill like a horse. I took it only 2 days and stopped but did not want to give up so I tried it again a week later and the first days I got terrible stomach pain again but no other side effects. That pain went away in 2 days and since then I have never felt any side effect anymore from the indocin. I have been diagnosed with atypical CH in 2012 but kept suffering. While I saw so many people here found relief on a variety of medication and/or other regimens I kept struggling to bring these headaches under control... until we found out that my headache is indomethacin responsive. I am not permanently on indocin but when I feel it is getting too bad, I take 100 mg and within an hour... pain is gone. Never feel any side effects and it's a big change to finally have something that really works for me. But have to agree it is not the most healthy medication. I would say... if you trial it for diagnostic purposes, don't give up easily with it. In the beginning it can take some time to kick in and doses can go really high up to 225 mg/day but if it turns out you having hemicrania, you will be happy you did it as it is the only medication that really works. Good luck ! siegfried
  25. Hello Friends, How would you feel spending several years on a CH forum, convinced you have CH but then it turns out you have something else ? Well that is what happened with me today. Some of you maybe remember my earlier posts where I was always talking about my kind of a-typical CH that maybe looked a bit like CH but was a different beast all together. Today I came back from my new headache specialist (the best I ever encountered) and after going over my headache diary and especially my indomethacin test responses it turns out I have Chronical Paroxymal Hemicrania or CPH. And all the "shadows" I had is all migraine, as the indomethacin do not respond on that (otherwise it could have been hemicrania continua). Disadvantage of this is that, if they change my diagnosis, I will loose my compensation for oxygen (something that served me so well the past years) so I will maybe have to pay it myself. Apart from the indocin there is not much that can be done. I consider to try the Vit D regimen again but let it fine-tune by Batch so it has maybe a chance of working and I am glad to be a test case for CPH Is there anyone else here on the forum with CPH ? If yes, it would be nice to know these people as CPH is much more rarer than CH. Anyway it feels kind of weird... having always felt very good with this community but what I thought what bound us (CH) is now not there anymore. But as CPH is often called, CH's "ugly little sister" I am sure I am still a very welcome part of the family here. All the best ! siegfried
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