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Siegfried last won the day on January 28

Siegfried had the most liked content!

About Siegfried

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  1. 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
  2. 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
  3. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. Siegfried

    New Med

    Hello Ann, This can be interesting for you: https://migraine.com/topic/emgality-share-experience/ Best Regards ! siegfried
  11. 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
  12. 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
  13. 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
  14. 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. -----------------------
  15. 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