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Everything posted by Siegfried

  1. From my experience in this forum, most people get some warning sensation that something is coming. I am not episodic but when a batch of these things is coming my way, the first what I feel is pressure in the right ear, then the eye start to feel like numb and swollen just like the eye area got stinged by a few wasps.
  2. Hi Barnabus, From my experience, just telling like it is, is the best way forward. I am very open with my condition towards my coworkers, manager, family, friends etc... Things I mostly tell are like It's a very rare condition, a neurological disorder that only a few people have. I was unlucky to drew the bad fate and now have to deal with it and it will not go away anytime soon I tell how an attack feels, how 'clusters' work and that there are fixed periods that I am good and others that I am much worse. Sometimes I let them see a youtube video on how an attack looks like
  3. Migraine yes. That is why I haven't sit in a sofa for the last 40 years or lay down on my back... it comes very fast, as you say in around 20 to 30 min. I had to get used to sit always on a straight chair.I don't know how that is caused but I assume it has to do something with the pressure in the neck siegfried
  4. "Discovered the cure" is a very bold statement ! But nevertheless, if it works for you... great and if it can help someone else... even better . It does not cost us anything to try it out ... Thanks for sharing your method ! siegfried
  5. Ketogenic diet is something else you can look at. It seems to have a positive effect for people with CH who have tried it.
  6. My wife has a friend with TN and its far from a simple disease... also very difficult to treat it seems. Medications that work initially running out of steam after a while or have horrible side effects.
  7. That is a very good recommendation ! I would say.. if your pain does not respond on triptans, then it's time to look at hemicrania. I have an excellent response to triptans but my CH is so hemicrania alike that I still tried Indocin. Of course it was negative... it did not work. My doctor told me not to think too fast it's hemicrania. Because hemicrania is very rare. The rate for paroxysmale is 1/50000 while for CH is 1/1000. 2/3 of the hemicrania patients are women so if you are a man, the chances are much bigger that your CH diagnosis is the correct one.
  8. Hello, If your migraine attacks shows cranial autonomic symptoms, there is a good chance that the O2 will also work for migraine but the approach is different. I will tell you what works for me: CH: Need the Optimask, 15 liters/ min for 15 min but in my experience the oxygen start to work already after the first minute. Breath deep in and out through the mouth and with every outbreath, make sure your lungs are as empty as possible by doing an extra crunch. I can seldom abort an attack but it bring the pain down with around 70-80 % after a few minutes of oxygen. Migraine: A norma
  9. yeah that is a good one ! I have both and even don't know where to start First thing what I want to say that they are both a complete nightmare but they are completely different. Don't believe people who say that the one is much worse than the other. Usually they will tell you that CH is much worse and migraine is a piece of cake. Well these people can have my migraines for a few days and they will sing very fast a few tones lower ! Both conditions are very serious. Here on this forum, there is a certain percentage of people who want to make an end to their lives because of this condition
  10. Hi dmlonghorn, That is interesting it gives exactly the same symptoms. I was only a short time on verapamil around a year ago. My symptoms is pure migraine and I can't stand it.... especially this takes +48 hours when untreated. You have high fluctuations in your hart rate which is indeed verapamil related My CH is kind of weird. It starts always with a glowing and full ear and some pain in the eye but the first hours I can not yet determine what it is going to be. If the pain increases but stays diffuse and I start to feel nausea and feel I do not want to stay up anymore and can not
  11. Hi Ken, Do you respond on Sumatriptan or Zomig nasal spray ? If yes, then you can safely rule out hemicrania as that usually don't respond to triptans. Also keep in mind that hemicrania is rare. The continua version is a bit more common but then you should have pain 24/7. If you have the paroxysmale variant, that is like the lottery you won as only 1/40000 has this and 2/3 are women. Paroxysmale hemicrania is always chronic. If it is CH, you can question the Indocin as it is not relevant here. Do not get too much fear of being chronic. Chronic has no remission of 3 months or more bu
  12. Hello Friends, I enjoyed my 1,5 month remission from beginning of April until half May. But its now the 4th week(end) in a row I am dealing with this fantastic condition (CH) and his/her ugly sister (migraine). This weekend was especially brutal. As usual, the pain started at the end of the week when I got any sense of the weekend and worked itself up gradually during the next hours. On Friday afternoon I got the first attack followed by 3 others. They were damn painful but luckily took only 10-15 minutes. Once in the evening, the attacks stopped but the background pain was still get
  13. Hi Moxie, After nearly 2 months of complete remission of all kinds of headache, I am also back. I got my last very heavy migraine attack previous year in September and as they suddenly stopped, and as I am 50 years old, I thought these migraines were a thing of the past and they would not come back anymore. I told this often on this forum. But I was wrong . Three weeks ago, I felt the usual heath in my right ear and thought a new cluster attack was in the make but suddenly started to feel nausea and the typical diffuse migraine pain. I had to go into my bed and could not stay up any
  14. I tend to agree with Johncluster here. But anyway, my take on this is that it's normal that someone who don't have CH do not understand what it is and how painful it can be. I am also not expecting that from them as they don't have the condition. There are also many clusterheads saying: "Oh migraine is nothing, or CH is migraine x 1000" or similar nonsense, while most of these people even never got migraine so how do they know the difference so well ? In my experience I prefer the severe pain of a 1 hour CH attack EVERY TIME above the miserably sick and almost near-death feeling of the m
  15. Siegfried


    Hi jh, All the time. I get up with shadows, go to sleep with shadows... they are always there. The real attacks, I am having only between 5 and 20 of them per month. But no episodic break, my pattern is chronic. So yes, as Into Light says: We all having a great time Shadows are so bad and permanent I thought I was having Hemicrania Continua but the indomethacin test was negative and the specialist I am seeing says the kind of pain I feel is typical for CH and does not fit with HC Best Regards ! siegfried
  16. Yes ! Right side cluster and strong pain in the right knee for a few days immediately after a cycle. I am chronic with short cycles of 1 to 3 days (6 - 8 attacks per day) with 1-2 weeks rest in between the cycles. I already wondered several time what that was and if it is related to each other. siegfried
  17. Lucid dreaming is amazing if one can do it. It however requires considerable dedication and skill. But if one can manage it to have the experience its often life-changing
  18. Hi John, Always behind right eye for me but more on the upper side between the eyebrow and the eye. Some kind of crunching tension However if it stays there it will most likely only be a shadow that can stay there for hours and hours. The real attack comes with fullness in the ear. Once I start to feel pressure in my right ear and become glowingly hot, I know its time ... Why do you think you do not have CH ? Is there anything in your symptoms that go against it ? Best Regards ! siegfried
  19. Siegfried

    CH triggers

    Migraine triggers Chocolate (a big one) Citrus fruits (orange, lemon, grape fruit, etc...) irregular sleep drop in stress dehydration Cluster headache triggers drop in stress (the biggest one) alcohol barometric pressure changes Drop in stress is quite spectacular. On Monday I had an attack starting 3 PM and drove home which took around 45 min. The attack stayed at KIP 3-4 during my way home. Once I came home, it suddenly exploded to KIP 8 in a matter of seconds ! Most likely because of the sudden state of relaxation. Siegfried
  20. Hello Ann, This can be interesting for you: https://migraine.com/topic/emgality-share-experience/ Best Regards ! siegfried
  21. Hi John, As told by Pebbles, you should for sure get a brain scan if you did not had it already. If the scan is negative, then you can indeed be fairly sure that is cluster headache. If you also restless during the attacks, that is an additional factor that points strongly to CH. As far as I know, triptans only work for migraine and CH. Not for other types of headaches. And for oxygen, I had both conditions and I can assure you that O2 works wonders for CH but does absolutely nothing for migraine. Another candidate is hemicrania but your response to triptans make that exclude as well.
  22. Hello all, Please have a look at the migraine forum on how they are doing with GCRP's. They have a dedicated forum to it (Aimovig, Emgality and Ajovy). https://migraine.com/forum/cgrps-calcitonin-gene-related-peptide/ Tons of testimonies to read... Best Regards ! siegfried
  23. Hi hugeser, I work in IT as well, spending most of the time behind a computer screen. The most important is filter out the blue light and make your screen less bright. There are several applications that can do that. I use "CareUEyes" which is very good. It's shareware and cost something like 3 € for a lifetime license. There are several modes available but you can set it as your liking. 5000 K for blue light and 80 % brightness is a good average that works very well for me. Just a question... are you suffering from cluster headaches or migraine ? I have both and while this was
  24. Hi Henri, ICHD-3 has defined headache type 8.2.2 which is Triptan-overuse headache. So if you want to be on the safe side, that is definitely something to look out for. Also important is your personal situation - if you are around 60 yrs of age or have a tendency for high blood pressure that is not under control, that is also an indicator to be extra careful. See Freud his reply as well. That is spot-on. Best Regards ! siegfried ------------------- 8.2.2 Triptan-overuse headache Description: Headache occurring on 15 or more
  25. Hello e3rr, Verapamil is THE first line preventive treatment for CH. Similar to what propanolol is for migraine. Verapamil is a calcium channel blocker and propanolol is a beta blocker. You probably did not find any info on this forum about it as it is so normal here that people not talk about it anymore. Almost everybody takes it or have at least tried it. Anyway, what is really positive is that a low doses of 240 mg worked for you and that is important information. Many have to go much higher (up to 960 mg) and getting all kind of weird side-effects such as swollen ankles, anomalie
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