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Everything posted by Siegfried

  1. 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.
  2. 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.
  3. 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
  4. 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.
  5. 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.
  6. 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.
  7. 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
  8. 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.
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. Siegfried

    New Med

    Hello Ann, This can be interesting for you: https://migraine.com/topic/emgality-share-experience/ Best Regards ! siegfried
  17. 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
  18. 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
  19. 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
  20. Siegfried

    Sumatripton help

    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 days/month in a patient with a pre-existing primary headache and developing as a consequence of regular use of one or more triptans on 10 or more days/month for more than 3 months. It usually, but not invariably, resolves after the overuse is stopped. Diagnostic criteria: Headache fulfilling criteria for 8.2 Medication-overuse headache Regular intake of one or more triptans1, in any formulation, on ≥10 days/month for >3 months. -----------------------
  21. Siegfried

    Joined the CCH club !

    Hello Friends, Yesterday I got my third consultation at the headache center in 3 years to evaluate my CH adventure up to now. I must say this time I got a really good doctor who was very knowledgeable and got a considerable experience with CH patients. I brought my CH calendar with me from the last year up to now and after looking at it, he immediately labeled me as chronic. So need some time to let sink that in although that wont change anything to what it already was. But at least I know now what I can expect and not expect. The very good thing is that my migraine attacks (which used to be extremely heavy) have almost disappeared. What left of them is only a shadow of what they were in the past. Now most of us think that CCH is hellish with constant attacks all the time but I can say in my case that it isn't all too bad. I am living my life like I want to live it with only moderate to sometimes heavier impact. Or maybe I am not asking too much from life , that can also be. Or also possible is that after 40 years with migraines, I am getting used to headaches because I can not imagine how life is without headaches. Anyway, the biggest reason that makes it reasonable for me is my phenomenal response to oxygen and Zomig. I currently go through life with on average 16 days of moderate CH symptoms a month and only ~15 5+ KIP attacks per month. I have a pattern of subsequent but very short cycles of maximum 3-4 days and Zomig can actually break them after the first day in 70 % of the cases. Oxygen wont but it brings the pain level down from unbearable to a slight discomfort. For the rest I do not take any other medication - no verapamil, no lithium etc... Only huge amounts of oxygen, around 4 Zomig pills a month and a nasal spray from time to time in case of emergency. Unfortunately, after many trials and trying out different combinations in the past for my migraines, I do not respond to the Vit D regimen. Batch kindly offered me to see what can be done but for the moment, I want some rest and just manage it like I am now used to manage it. if it would get worse I would be happily to give it another trial. What also greatly improves on dealing with this condition is this forum. Reading though the message board every day make me feel not being alone dealing with this and it always gives a lot of satisfaction if I can give something back to others. This is a community of very kind, knowledgeable and generous people and that is rare to find these days ! The expertise this group has for CH is phenomenal and it would be difficult to live my condition without the support of this group. At last, I am sure that every one of us will soon or late be able to deal with this condition even we very often chasing a moving target. Thank you all and all the best ! siegfried
  22. Siegfried


    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, anomalies in their heart rhythm etc. Previous year I have been on 240 mg for a month but it did nothing. So the doses was probably too low for me. All the best ! siegfried
  23. Siegfried

    strange changes to my clusters

    sure ! https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-018-0909-4
  24. Siegfried

    strange changes to my clusters

    Hi Mark, To come back to your initial question from 2018, what you experience is perfectly normal I think. As MoxieGirl already stated, symptoms are different for every sufferer and they constantly change over time. And the migraine-CH combo can make them behave really bizarre. I was a heavy migraine sufferer since I am 10 years old (now I am 49) and got my first CH at 43. Since a year (probably due to age) my migraine attacks have strongly diminished but when they were strong I always had the one triggering the other. When the migraine reached a certain threshold, it would trigger CH attacks. CH is on the right side and migraine was also on the right side. Now for a year, the migraine suddenly switched to the left where it is still but far less strong. It does not give the nausea and photophobia anymore and very often, it is so light that just one or two Excedrin are sufficient. CH is now alone on the right side but still behaves in a very migraine-like fashion. They not cycling like CH but like migraine which are 2 to 3 days with subsequent attacks every hour and then one or two week rest. So yes, my CH really come in clusters but very short ones of only a few days that are very intense with attacks that follow each other in rapid succession. I also have a lot of background pain (shadows) around 16 days a month but no nausea. Fullness in the ear is my main autonomic symptom (apart from restlessness). I don't have the tearing or nose congestion very often. I remember that my migraine attacks also started with fullness in the ear and the ear started to get very hot and became red, like glowing up. This is still the case with my CH. Shadows are OK as long as they are in the eye, but I know when the ear start to get full, painful and get hot, it is going to get serious and a new batch of attacks is ready to make their entry. In ICHD-3, fullness in the ear is now listed as alternative criterium: Now they keep migraine and CH as two separate entities and many people will say that doctors who talk about cluster-migraine are incompetent. however I am still convinced it does exist in some people as I am experiencing it myself. Previous week I received a link from Batch to a very interesting and recent study where they at least now recognized the existence of these blend migraine-CH types: "...and it has been suggested that this treatment could have greater responses in migraine patients with cranial autonomic symptoms [157] or migraine-cluster and cluster-migraine variants (these rare phenotypes are not included in the ICHD-3)." So in short, if you have the cluster-migraine combo, be prepared to expect any kind of weird behavior in your condition and a strong tendency for the one to mimic the other or even to blend. Hope that helps ! siegfried
  25. Siegfried

    Skin pain

    Thanks a lot Batch for this extensive explanation !!