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Everything posted by Siegfried

  1. Siegfried

    Question about prednisone

    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 well. Then they gave me a shot of Prednisone in my vain in my arm and I must say... after an hour, the pain started to go away. I was astonished by the effect ! Now I am taking 32 mg every day now for a week and had not an attack anymore since then... only 1 hour some mild-sharp pain in my eye on Wednesday but nothing serious. Tomorrow I start to taper down... will see how that works out. And yes, steroids feel like.... steroids. I have lots more energy, don't need much sleep, very clear thinking and also very positive thinking. Hope I don't get a backslash when start tapering down. They also asked to try the Verapamil again. So now I am my first week on 120 mg and end next week, I need to go for an EG to go to 240 mg. Hope this time it helps as last time Verapamil did not do much. I can not tell you if it brakes cycles or not as I don't have that much cycles. I have more like a chronic pattern with attacks in the weekend and reasonable days during the workweek all year around. However last week of August it got exceptionally bad so maybe yes I am in some kind of cycle. All the best ! siegfried
  2. Siegfried

    Do you know they're coming?

    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.
  3. Siegfried


    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 I also talk about the medications we are using: oxygen, verapamil, medrol, triptans etc... all heavy stuff; so next time they won't recommend you an aspirin I usually say also that I am still lucky I can have a more or less normal life with this. Many CH sufferers are completely disabled. It's a heavy condition to deal with. No need to downplay but just stay objective and don't fall into self-pity or compare yourself openly with others with other conditions. Just tell the facts, not your interpretation of the facts. This way I have actually never encountered anybody who told me to take an aspirin, or lay a bit on my bed or something because they have some background of what it is. They know it's not a usual headache. If they do not have this information, you can not expect people to be aware and react in a right way. There are so many diseases out there and unfortunately cluster headache contains the word 'headache' so that's what they think it is... Paroxismale hemicrania patients are better off... although the condition is nearly identical, the name sounds very scary and people won't think of a headache Best Regards ! siegfried
  4. Siegfried

    Just a question

    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
  5. Siegfried

    Simple Technique to Abort Headaches Right at Onset!

    "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
  6. Siegfried

    Newb here

    Ketogenic diet is something else you can look at. It seems to have a positive effect for people with CH who have tried it.
  7. 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.
  8. 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 getting worse over the entire half of my head. Before going to sleep, I had to take one Zomig pill which took away most of the pain but damn... my right eye kept hurting like hell. That nerve kept firing non-stop and it felt like a wasp or a hornet had sting me straight into my eye. Could not sleep the entire night and went on like this for an entire Saturday. Oxygen brought it down for a few hours but then it came back. Saturday night 2 am still no improvement - the nerve kept firing like it was pouring acid straight behind my eye. I wanted to go to the emergency for a nerve block but I thought trying another Zomig pill first to see if that helps. Luckily this one helped and could finally get some sleep. Sunday was quiet but in the early evening, it was then the turn of migraine to show what she was capable of. Now for a change on the other side of the head. As usual head pain not so intense but damn... the pressure on my chest, the nausea and the pain in my stomach and bowels seem like I have a highest degree flue... I can barley breath. Now Monday afternoon, this one is finally going away but it goes very slow - one two steps forward and one step back - and look forward to finally a few good days. I am looking forward for my next remission in September (if CH plays it along the rules) that should give me 1 to 1,5 month of relief. In the meantime I will have to try to sail trough this shit for the next few months. But I also received some good news. Just heard that here since January of this year, CH patients can get a BPR demand valve for free. So I am going to pick up mine and look forward to use it ! Thanks for reading and all the best ! siegfried
  9. Siegfried

    Hemicrania that mimics CH

    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.
  10. Siegfried

    Just diagnosed with clusters

    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 normal rebreather mask, that will give you lower oxygen concentration works better. The Optimask does not give good results for me. Breath through the nose only, slowly and try to get the oxygen go up to the sinus as high as possible. Don't breath through the mouth... that will do nothing. Do at least 30 min. Very important for migraine is that you need to be on time. Once the attack really sets in, then oxygen will not work anymore. While with CH, oxygen can still bring down the pain with 70, 80%, it will not happen with migraine. The pain will at maximum decrease slightly during the therapy but when you stop oxygen, a few minutes later it comes back and even harder than before. So it is very important to start a the slightest sign of migraine. With lots of experience and timing, you can use oxygen as preventive.
  11. 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. Well, go to the migraine.com fora and you will see that migraine can hit as hard as CH. I assume you are a CH patient and so you will know how CH feels. The migraine pain is different. It's more diffuse all over one side of the head and indeed you are right; it feels a bit like a heatstroke. It's not a brutal pain but it immobilize you completely. The biggest challenge is however not the pain. It's moderate and never goes over KIP 4. But the nausea, photophobia and phonophobia.. that is the problem. When I have migraine, I am terrible ill, can not eat, can not drink, can not stand any light, can barely breath and it just all hurts. I always say... take the worst flue you ever had and double that feeling. The other problem is that a migraine attack does not go away in 15 min or 3 hours. Untreated it can stay up to 72 hours and during that period it never diminish in intensity. That is damn a long time and I can assure you when the attack is finally over... I feel more dead than alive from exhaustion.
  12. Siegfried

    With my two feet back in clusterland

    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 concentrate on anything, then I know its the migraine. But if the nausea not come and I start to have short spikes of very strong pain around my eye and forehead and start to rock back and forward or walk around.. then its CH. A CH cycle usually takes around 3-4 days with nearly constant low-level pain but Zomig can stop them completely. Migraine usually takes 36 hours. Are you a migraine sufferer as well ? siegfried
  13. Siegfried

    I need help from the veteran survivors of CH

    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 but the number of attacks in chronic patients can vary strongly from multiple attacks every day to just a few attacks per month. I have both migraine and CH but I am labeled chronic as the CH follows the migraine pattern (2-3 subsequent days per week during the weekend). On the other hand my migraine is now following the 1,5 months CH remissions I have in both March and September... it is all very weird to see how these conditions can take over characteristics from each other.
  14. Siegfried

    How does the Beast return?

    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 anymore. So I knew they were back... Such an attack usually stays 36 hours and I needed two Zomig to abort it. No clusters however. Started aggressively with the D3 regimen again but as I experienced already multiple times, it has zero effect. Previous weekend it was again the same. We planned that weekend to go hiking and booked a nice hotel for that but all had to be canceled because I felt miserable. This weekend it all started over again but suddenly got hit by a 15 min very painful cluster headache. An hour later another one. Migraine was then triggered again after the cluster. So that was already the third week in a row. I am on a record Zomig intake this month. And even worse, I caught a bit of a flue lately but these headaches make my immunity drop very low so now I am sitting here at home sick with a flue. So my take away of this: I always have to be prepared for what can come. These things (both migraine and cluster) tend often to disappear but can flare up unexpectedly in an aggressive way. All the best ! siegfried
  15. Siegfried

    Describing CH to non-believers

    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 most serious migraine attacks I experienced that last 72 hours. I am quite open to talk about the condition I have and that is also how I explain it: "I have CH. It's a rare neurological condition existing of relatively short headaches that can be very painful. Pain is mainly in the eye and it goes away while breathing oxygen. but I have to deal with this nearly every day". That's it, nothing more or less. What I then see is that most of these people are looking it up on Internet for themselves to get some more information or stumble on a video that shows what such an attack really is. Of course if you try to convince them at all cost how painful CH is and comparing it to the most grueling tortures, they will look at you like you are an idiot. Best Regards ! siegfried
  16. 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
  17. Siegfried

    Out lying pain

    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
  18. Siegfried

    Dreams and clusters

    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
  19. Siegfried

    does your pain start from the back of your eye?

    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
  20. 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
  21. Siegfried

    any success stories of being CH free for good?

    I remember someone here on the forum who got a remission of 30 years I believe and then it came back when in his seventies. So, when it goes away, best to consider it as a remission and not think you are 'cured'... to avoid surprises later on
  22. Siegfried

    New Med

    Hello Ann, This can be interesting for you: https://migraine.com/topic/emgality-share-experience/ Best Regards ! siegfried
  23. Siegfried

    If Oxygen and triptans work is it 100% CH?

    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. Now for what the videos concern, I would take these with a big grain of salt. Of course nobody will make a CH attack video just showing up and saying, "Hey guys, I am having a CH attack and it hurts a lot !!" while just sitting there and doing nothing. The goal is to show they are suffering and that CH is a terrible condition so they will only post their worst and most spectacular attacks. But don't get me wrong... I am definitely not saying these attacks are not real. If you want to have a good view of CH intensity, you can have a look at OUCH Australia. They have lots of public headache diaries from their members there and it's very interesting to consult them. What you will remark is that the rather lighter or moderate attacks are more or less the norm and the really heavy attacks (KIP 8-10) appearing less frequent as one should think. Of course there are many people for which it's really bad, I know that as well.. but that does not mean that if you not always screaming and running around like a wild man during an attack it is not CH. Myself, I have only 35 % of the attacks over KIP 5, all the rest is under. And the heavy ones I can handle it quite well because I know how to deal with the pain. I am fearing the migraine attacks much more. Luckily I do not have them anymore but they made me ill like a horse. Take the worst flue you can imagine and double that... The feeling of nausea with the photophobia, I absolutely couldn't stand it... and that was going on for 48 hours. On the other hand, the problem with CH is that it is there nearly every single day. Today, on CH awareness day, I finally have once a super good day, the first one of the month - so for me it can be CH awareness day every day Best Regards ! siegfried
  24. 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
  25. Siegfried

    Computer help....

    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 a very big trigger for migraine attacks, I have not the impression it has any influence for my cluster headaches or shadows. Best Regards ! siegfried