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Everything posted by Siegfried

  1. 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 u
  2. sure ! https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-018-0909-4
  3. 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 trig
  4. Thanks a lot Batch for this extensive explanation !!
  5. 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
  6. 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
  7. Siegfried


    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 practici
  8. Thanks Batch for posting this This is really an eye-opener ! siegfried
  9. 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
  10. 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
  11. Hello Nikki, I am not sure if triptans can use rebounds but they definitely can cause Medication Overuse Headache (MOH). This is a different headache and IHC has a proper classification for it: ------------------- 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.
  12. Hi Brian, Vegetarian here, so a tofu steak for me siegfried
  13. Hello Funtimes, Hope you will have better painfree times ahead but anyway you are not alone ! Last month has been more or less a disaster for me. Since 1 December I had only 15 reasonable days but luckily not so many attacks (only 16 divided over 7 days) and not so intense (except 3 I got at night). However that is what I think about them as I never seem to remember anything of them. Strangely they are getting erased from my memory and when my wife sometimes tell me how intense it looked, I usually respond with "it wasn't too bad". But most of the misery were these strong migraine li
  14. Hello Moxie, That is awful to hear and very sorry for what you have been through. Migraine and CH are both such a terrifying diseases and for us who are blessed with the migraine/CH combo, that is horror beyond all proportions. Whatever happen, try to make the best out of it and 2019 will be a lot better... why not ?
  15. Hello Brian, I know what you are going through as I have been in the same boat as you for a long time. Me as well have been a life long migraine patient (they started around my 12th) and it was actually a very 'classical' form of non-aura migraine completely fits the diagnostic criteria. In 2012 however I started to experience extremely painful exacerbations up to 3 hours during the migraine attacks, which took usually between 48 and 60 hours. I also experienced a running nose during these painful periods and extreme restlessness which was odd, as migraine makes me do exactly the opposite
  16. Hello Rory, Welcome to this forum ! I share the opinion that the athlete bottles do not contain enough oxygen. For one abort, you would need, let us say, at least 15 min x 15 l/min = 225 liters. That is the strict minimum for just one abort trial without aftercare. Realistically we do need much, much more. A few weeks ago I had an attack session of 24 hours and I got through ~3000 liters. I hope you can get your hands on oxygen soon ! From what I can read from the US colleagues here, it can be challenging to get oxygen but it seems there is always a way out. Luckily here in
  17. Hello TheChinBurglar, A few things to consider here: First and foremost, try to consult a headache expert in order to get a diagnosis. They are the best placed to do that as they see over thousand of headache patients every year and they know when to consider you symptoms as CH or something else. But in order to get a good diagnosis, you need to collect accurate data. So, keep a headache diary where you write as much as information down about your headaches. In addition, film yourself during an attack... your behavior will tell a lot about the type of headaches you have. Second,
  18. Hello Dandownunder, It is correct that several persons here have reported more rebounds because of oxygen use. I do not know if this is an actual fact or rather a subjective impression. But I would definitely not consider this as a show stopper for using oxygen. Rebounds can also be attributed to the nature of your cluster headaches. Currently I am just coming out of a 24 hours barrage of attacks. Went through 3000 liters of oxygen but that is just the nature of how my CH are. Once they start, there is no stopping on them and they follow each other in rapid succession with only 30 mi
  19. Hello Maria, Ketogenic diet is something else you can try and it seems to be very helpful for chronic cluster headache patients. I do not know much about it but what I know is that with this diet, the body is forced into a ketosis state where it does not use glucose as energy source (sugar and carbs) but uses fat instead. Regarding hemicrania, there are two types: Hemicrania Continua is a 24/7 background pain on one side of the head with exacerbations that have the characteristics of moderate CH attacks. Important for HC is that the background pain is always there and never goes
  20. Hello Collin, Currently I am struggling with something very similar. I had lots of CH attacks (which also triggered migraine attacks) from April and it stopped 7 September. Normally October and November are the most quiet months for me. But not this year. A few weeks after the cluster stopped, I have this constant headache exactly as you describe and exactly on the same places as you show in your picture. But it is not 24/7. I would say its around 3-4 days a week. At night it is much stronger than during the day. Begin November, we had the change to wintertime together with a very b
  21. Hello kbee ! Interesting story It always surprises me how different these headaches can manifest in each of us, with all kind of different symptoms. Now, when you say 'tests' I assume they also did a brain scan (MRI) and it came back normal, so they ruled out more serious conditions. If you did not have such a scan yet, you must ask for it. Now for what cluster headaches concern, here are some criteria that are usually seen with cluster headaches and if you fulfill some of those, you maybe suffering from them but in addition you must consult a headache specialist to get a prope
  22. Hi A-Z, If you consider triptans for your shadows (especially if they are long-lasting) you can have a look at the ones with a long half-life which are a better fit for this type of pain. The two in that category I am thinking of are Frovatriptan and Naratriptan. They also tend to have less side effects than the fast-acting ones. Just pay attention not to mix different triptans together. All the best ! siegfried
  23. Hi Nicole, I would advise you to search for a specialist in headaches, or a headache clinic (where not only 1 doctor but a team is making the diagnosis). Why is that ? Diagnosing headaches is very complicated. Of course there are these ICHD criteria but they are giving the most standard textbook symptoms which do not apply to everybody as every body is different. The task of the headache expert is to determine how far your symptoms can be off from the standard criteria but still fall under that diagnosis or which diagnosis applies the best if you have overlapping symptoms. They
  24. Hello Jimmy, These small headaches, or shadows or onsets as some call them are the prerequisite for me for a cluster attack to appear. They always wake me up 2 am sharp and they feel like a migraine onset. They are not so strong and sometimes I barely notice it. BUT... if I wake up in the morning and they are still there, they will ramp up slowly in the afternoon and trigger cluster headache attacks (there preferred time seems to be 3 pm in the afternoon). Not one or two but at least 10 (15 to 120 min each with intervals of 30 min to maximum 2 hours). It can go on for 1 max 2 days until t
  25. Hello Yann, I use Zomig already since it came out (somewhere in the 90's) and I have never used anything else since. I find it really good but I try to avoid overuse. I am however less to speak about the generic Zolmitriptan. They say however it's exactly the same but the generic version caused me strong rebounds. I have used always the 2,5 mg for migraine but when I got cluster headaches, I need the 5 mg and now use the nasal spray as well. It works all the time ! I can still work with the pills as for me when a cluster come, I get around 10 - 12 attacks after each other, 40 min each wit
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