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Everything posted by Siegfried

  1. 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
  2. Hope the busting works and you can get rid of these attacks ! siegfried
  3. hi, I suspect your system is infected with some virus better check :)
  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
  5. 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
  6. 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
  7. 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
  8. 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 dose
  9. 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
  10. 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. I
  11. 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 dis
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. @kat_92 Yes I know, indomethacin can be though and it is actually poison. Once I cut open a capsule to see what was inside and it was a kind of white powder but when I put a bit on my tongue, my tongue was burned and saw red ! So not very healthy stuff ... I did the first indocin test 150 mg just before Christmas and I remember on Christmas eve, I was ill the entire day, pain everywhere, dizzy and vomiting the entire day. It was horrible but I did not want to give up as it is the only way to know what I have. So one week later, I tried it again and ... surprise.. no side effect
  18. Hi Tony, That can indeed be a possibility. All these different headache types react on each other and I agree it is very difficult to differentiate. I heard of women who have CH and migraine, they sometimes can not tell the difference which one is active at which moment. And that is also my problem. Oxygen in my case works very well for migraine if I am early enough. And as a migraine attack is always a trigger for a round of PH attacks, so it also indirectly works as a preventive for PH. I can abort 80 % of my migraine attacks with oxygen. That is why my triptan usage is very low c
  19. I got some weird side-effects with my nerve system when I took it. 120 mg was fine but when doubling to 240, the problems began. And I just did not feel fine with this. I tried it then again a year later with the same result. A medrol injection I also got previous year and then taper down with tablets and that went very well. No more headaches during that time and no side-effects that I was aware of. I found that a very effective way to bridge a really bad period.
  20. Hi Rod, Good question ! I have actually never tried one of the busting methods mentioned here so I do not know if it is going to work. But does busing also work for chronic headaches ? Mine is chronic, which is most common with PH. In CH most are episodic with a minority chronic but in PH it is the other way around. Doesn't mean I have headache 24/7... just that I never have +3 month remission. siegfried
  21. 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
  22. Siegfried


    Keep well Brian !
  23. Hello Shubham, There are some guidelines I learnt from the doctors I have been with: If your headache is strictly unilateral (never appear on both sides on the same time) and also side locked (always appear on the same side) and your pain goes together with a feeling of agitation or restlessness, that is the red flag for a category of headaches called Trigeminal Autonomic Cephalgia or TAC. CH is a member of that family but also both hemicrania headaches and I think SUNCT and SUNA as well. So if you fulfill the above there is a possibility that you are categorized as "probable TAC" al
  24. Hi Shubham, A good starting point for self-diagnosis is the ICHD-3 classification. That is what every doctor is using as they are a kind of international guidelines. It somehow sums up the symptoms you should have, and that in comparison to many other symptoms you can have. That is a big difference. For cluster headaches, it reads as follow: Description: Attacks of severe, strictly unilateral pain which is orbital, supraorbital, temporal or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to eight times a day. The pain is associate
  25. Hi Jon, I did a serious try... 4 days on 25 mg/day... at least ! But it did not end well... I lost my short term memory. I am on sick leave this week as I could not remember anything about my job yesterday. Today it is getting a bit better and seems my memory is gradually becoming back accessible. It was a frightening experience. I had a chat with the neurologist who put me on it and he told me that sometimes they see people who are very sensitive to Topamax, on the other hand they also have people that can withstand up to 400 mg/day. So I am definitely in the first category and not adv
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