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Siegfried

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Siegfried last won the day on January 28

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About Siegfried

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  1. 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
  2. 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
  3. 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
  4. 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. -----------------------
  5. Siegfried

    POSSIBLE FIX

    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
  6. 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
  7. Siegfried

    strange changes to my clusters

    sure ! https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-018-0909-4
  8. 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
  9. Siegfried

    Skin pain

    Thanks a lot Batch for this extensive explanation !!
  10. Siegfried

    Skin pain

    Hello Batch, First time I heard this was from a neurologist interview somewhere on YouTube who told that. I did some search myself and these articles indeed seems to confirm that: https://www.medscape.org/viewarticle/464138 https://onlinelibrary.wiley.com/doi/abs/10.1002/ana.10786 But these are migraine references. I do not know if it is the same for CH Best Regards ! siegfried
  11. Siegfried

    Skin pain

    Cutaneous allodynia is known to hinder/stop the effectiveness of triptans. At least for migraine, I am not so sure if it is similar for CH. Best Regards ! siegfried
  12. Siegfried

    yoga

    Hi Anthony, I have done traditional hatha yoga for 12 years on an intensive level and I finally stopped it as it always had a devastating effect on my headaches. Both on migraine and cluster headache. I always thought it was not possible yoga could make my condition worse but finally have to acknowledge it actually does. Yoga addicts can pretend whatever they want but in my case, yoga has done absolutely nothing for my headaches, on the contrary, these exercises are pushing a lot of energy to the head and just intensify the headaches and make it worse overall. I have stopped practicing for 6 months now and I have seen a slight improvement over time and no more so often these violent breakout of attacks (both migraine and cluster). My suggestion: stay away from any indoors activity and do something outside in the open air. However if you believe in the yoga hype, don't hesitate to try it and if it worsen your condition, you can be sure yoga is the culprit. I think for our condition, tai-chi and chi-gong are better choices if one is looking into Eastern mind-body oriented practices. All the best ! siegfried
  13. Siegfried

    Congress is Useless - Paid Political Hacks

    Thanks Batch for posting this This is really an eye-opener ! siegfried
  14. Siegfried

    Fog = Shadows?

    Hi, You are not alone ! My wife was in Thailand for the last two weeks to visit her family so I had to run the home alone... working, doing the household and the slightly elevated stress level as hoping that she all right there and nothing happens with her. These last two weeks I did not feel anything apart from one day of light shadows and one single isolated kip 5 attack for 30 min. But I knew once she would be back and my stress falls away, the headaches would explode. And that was what it did. She returned yesterday and today ... baammm it woke me already up around 3 am. Its now 8 pm and still no sign of improvement. It's like a damn stone that sits behind my eye... that constant pushing pain that radiates to my neck, my sinus and upper teeth on the right side. Happily no attack yet but we will see what the night brings. Today I went out to the city seeing some shops just to get my attention off the pain. Now I am sitting here a bit worn out and have finally taken refuge to the oxygen bottle to keep that thing under control. After a two week break, I did not want to go back to the bottle but no choice left ... that's how nice life can be sometimes All the best ! siegfried
  15. Siegfried

    Busting the Clusters

    Hi Daniel, Really appreciated you tell us what is working for you ! It's great people do that ! Some methods proposed here are as eccentric as it can be but who cares. Even if a million try it and there is only one patient for who the method works, that is already a huge victory Best Regards ! siegfried
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