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Siegfried

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Siegfried last won the day on October 28 2020

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  1. Hello Squizzlet, I am having attacks of paroxysmal hemicrania during my migraine attacks. Once the migraine reached a certain intensity, the hemicrania attacks start. They go around 7-10 min per attack with breaks ranging from 15 min up to 1 hour and can go on forever. If a PH attack is coming, the migraine disappears almost completely and once the attack is over, a few minutes later, the migraine starts to come back. Indomethacin only works for the PH but not for the migraine. Now I take candesartan for migraine and that works really well. I am on 16 mg. I had migraine attacks nearly every day and that now has diminished to once per two weeks. When the migraine is not there, the PH also stays away. So I would say yes it is possible. Problem is, currently migraine and CH are seen as two completely separate entities. That was not in the past. They called it sometimes cluster-migraine. I think cluster-migraine does exist and it was a more correct approach than what we have now. Why ? There are too many cases of hybrid migraine-CH but they keep on saying it does not exists. I have seen quite some neurologists and they all say the same. Very often, if a CH patient has also migraine, it blends together in a hybrid kind of headache with characteristics of both. I also can see that in the more recent studies, where the researchers have to admit there is neurological overlap between the two entities. Just ensure you have been through the entire protocol of CT scan etc... to be sure its a primary headache and there is nothing else going on. Anyway wish you all the best and hope you find something to keep it under control. That can take a long time but soon or late you will find something siegfried
  2. Hi Patheticfern, May I ask you what doses you take ? I both a 10 ml bottle a while ago that has 15% CBD oil. The seller told me this is the lightest form of CBD for medical application. Can go up to 30 %. For me to have a little bit of an effect, I need around 20 drops while the guy in the store advised 3 drops per 3 hours... so much it makes me unwell. Maybe I need a higher concentration ? And how do you dose that ? Once a day or several times a day ? I have chronic paroxysmal hemicrania and chronic migraine. For the CPH, I need to take indomethacin to get it under control. Unfortunately, indomethacin makes my migraine attacks worse and resistant against triptans. I am currently experimenting again with topiramate. It has a clear effect on both headaches but I am too sensitive to it and too many side effects. siegfried
  3. Very nice video Tony ! I want to extend it to the lesser known and even much rarer "ugly sister" of the suicide headaches I am dealing myself with: paroxysmal hemicrania
  4. Hi VaderXanth, That sounds terrible ! And it is a terrible story ! I always think this must be one of the worst. People that never got a headache before in their life and then at later age, suddenly get episodic or chronic CH and have do deal with this entire mess from the one day to an other... "from zero to hero..." I am sure you will find your way with the support and the help you will get here. CH father gave you a good starting point. All the best ! siegfried
  5. Come on !! Get all your courage together and fight that thing ... don't loose courage
  6. Yes that is correct and chronic does not always mean you have constant attacks 24/7. Many CH'ers are labeled chronic with 1-2 attacks per month. Chronic just means there is no remission.
  7. I got my first migraine attack when I was around 10 years old. That is now 42 years ago. Being one day (always in the weekend) per two weeks in my bed with serious headache, and strong nausea had been a part of my life as far as I can remember. I never made a problem of it. That was just how it was and I did not know anything else. 8 years ago, when I started to experience TAC symptoms, that was much more difficult to deal with. I was not used to that kind of extreme pain. First they diagnosed it as CH which I believed for a long time it was. But it did not fit the CH pattern so that was very difficult to deal with not knowing exactly what I had. Indomethacin confirmed what I suspected already for a long time and now it is diagnosed as chronic paroxysmal hemicrania. My migraine became chronic as well, completely against the expectation it should disappear at later age. My wife is very afraid the indomethacin will destroy me... so I try to stay away from it as much as possible. At least, when I take indomethacin, the PH disappears as snow in the sunshine but unfortunately very often it is getting substituted by nasty migraine attacks. So I can choose between the pest and the cholera I still can work 4 days a week but I have my limitations. These CH/migraine or PH/migraine combos are very difficult to manage and every morning when I wake up and feel the pain, my first thought is..."how will my day be ? Will I be able to suppress it ? ... hope I do not have to take sickleave again." But when I have a good day, I enjoy more of it because I know it is short lived.
  8. Hi maskedmarvel, What is exactly your fear ? Do you think it will get gradually worse and you will turn chronic ?
  9. You can ask MoxieGirl. I remember she has this ping pong thing sometimes. Maybe she can tell you more about it. Hope you get better soon as with the colder weather, COVID and the headaches, its not easy siegfried
  10. This looks like a migraine attack, which is very common with CH patients. TAC's tend to activate migraine during cluster periods in people with 'migraine genetics'. These people normally don't have migraine but it sits there hidden and it gets activated during CH cycles and give them these shadows. "...or patients with now accepted chronic migraine (Olesen et al., 2006), is the background genetic rate of migraine much higher than previously considered? It may simply be that in patients with two genetic hits—PH and migraine, the migraine biology is more likely to be activated than without the extra PH-problem." "...We evaluated the relationship between migraine and PH and found that 16 (51%) patients had a personal history positive for migraine and 18 (58%) patients had a family history positive for migraine, or headache not otherwise specified or both. Medication overuse is associated with chronic daily headache in migraine (Bigal et al., 2004), and in cluster headache (Paemeleire et al., 2006) and SUNCT patients (Cohen et al., 2006a), with the common theme being background migrainousness (Goadsby, 2006)." You can try to get a long-acting triptan (Naratriptan or Frovatriptan) and see what that does. All the best siegfried
  11. Hello Marlon, Welcome to the forum. I am 51 m with chronic migraine and chronic paroxysmal hemicrania (CPH). This forum is very good with very helpful people. Once you joint it, you won't leave anymore ! Good luck with the headaches... but that will work out as I see Batch gave you already some instructions siegfried
  12. I am chronic (CPH and HC are almost always chronic) but every year I experience a short remission of around 3 to maximum 4 weeks. When I get into such a remission, headaches stop abruptly and I then have zero symptoms with no medication. 3 weeks later headaches suddenly start again where they left off. siegfried
  13. I will have my first flue shot in November (I am on the list now) as I want to diminish the risk having flue and COVID at the same time. I never got a flue shot before. So I will see how it interacts with my headache but I am not so worried about that as I have headache every day anyway if I don't take that horrible drug with the lovely name 'Indomethacin'. siegfried
  14. I also thought for a long time it was dependent and I tracked it for a while. Conclusion was for myself there is no real correlation to see between weather and headache frequency. But still... every time weather gets bad... I feel I get hit harder than usual. siegfried
  15. Hi Nicole, I have chronic migraine and chronic paroxysmal hemicrania and first they thought I had CH (because it is very similar) and they gave me oxygen. To my big surprise, oxygen worked for migraine because it is normally supposed to work for CH only ! But I had to do 20 min 15 l/min immediately at the onset of the attack. Once the migraine really comes trough, it does not work anymore. So the trick is to act fast. I have a success rate of 70-80 % with oxygen. It brought down my use of triptans from 8 - 10 a month to nearly zero. What you can try is go to your closest ER when feeling a migraine is going to come and ask for 15 min oxygen and see what it does. If it does not work, nothing is lost. There is also a dedicated forum for migraines (www.migraine.com). This forum is more specialized in trigeminal autonomic cephalalgia or TAC's. It looks like you are a candidate for aimovig or one of those newer medications. In that migraine forum, they have tons of experience with these new medications. All the best ! siegfried
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