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Siegfried

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Posts posted by Siegfried


  1. 4 minutes ago, maskedmarvel said:

    So based on what I am reading on pubmed etc, going from episodic to chronic is pretty rare.

    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.

    • Like 2

  2. 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 :D

    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.


  3. 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

    • Like 1

  4. 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

    • Thanks 1

  5. 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


  6. 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


  7. 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


  8. 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

    • Like 2

  9. 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

    • Like 1

  10. Hello friends,

    I usually take 2-3 days/week indomethacin to combat my CPH. Somewhere between 50 and 150 mg per day. 

    With this regimen, I haven't had an attack since July (I then ended up in the ER because I skipped it) and it feels weird. Previous week, I started to believe it was really gone and was in for an experiment - no indocin this weekend...

    Well it didn't end well. Friday was OK but in the evening I felt something I recognized from in the past. Saturday morning 8 am attacks came in full force, 7-10 min per unit and after an hour I had already 3. Incredible pain like someone smashed a hammer in my eye. I then decided it was time to end my 'experiment' and took 100 mg indocin and bridged the time to get it working with an imitrex injection.

    Indocin stops my headaches but unfortunately it is not good for the gut. Pain in stomach and bowels is unbelievable and with a stomach protector, it does not make much of a difference. It's a matter of balance and always take the lowest possible doses.

    siegfried


  11. Good to hear this works ! As said above, these are anti-inflammatory and can provide a good help in combating headaches

    Sometimes I cook fresh ginger in a cup of water (like a tea) and drink it. It is very spicy !

    For tumeric, best is to have a high quality tumeric powder and add a spoon to a cup of hot milk + a bit black pepper.


  12. These clustermasks are one of the best things that exists for headaches. Something like a "hidden secret".

    I use it for migraine, which is highly unusual, and have an abortion rate of 70 - 80 %. I do 15 l/min for 20 min. I do this every morning and can not skip otherwise my day will not be a good day. The factory is now in the process of putting new regulators on the bottles and they have also 25 l/min now but that is too much for me. Aborting headaches with this mask is a laborious process and demands a fair amount of energy to keep going for 20 min.

    The regular non-rebreather mask does not work to abort a headache. It can at maximum diminish the pain for an hour.

     


  13. Hi Nick,

    Unfortunately you will have to take into account that this can indeed be a lifelong adventure. I once read a study about this and that is what I remember:

    • An early onset has a higher chance on an early termination. If you get it later in your life, then it will probably also take longer
    • Many doctors will say it goes away once in later 40's or early 50's. There is indeed a tendency to longer remissions (several years) once over that age but from what we see here in this forum, many come back in their 70's having attacks again after having 10, sometimes 20 years of remission.
    • After many years, most patients come to a point they learnt to deal with it very efficiently and so they do not need help anymore from doctors or specialists at later age

    If I look at myself, I got my first migraine attack when 12 years old, now I am 51 and still no signs of stopping. So that is 39 years and that as a man ! Migraine is called a women's disease !  Then at 43 yrs old, I got suddenly plagued with Chronic Paroxysmal Hemicrania , the female version of CH.

    So I would say, never take these pain free periods for granted and do not count on a "magical recovery" but think seriously about a strategy on how to deal with this the best you can.

    All the best !

    siegfried

     

    • Like 3

  14. On 7/19/2020 at 4:53 PM, CHfather said:

    Melatonin is a natural hormone with a chemical structure similar to indomethacin. A few people have had a complete response for their HC with melatonin alone, but more often they have been able to get relief with a lower dose of indomethacin while taking the melatonin.

    I am taking melatonin now for a month. I don't know if accidental or not but it looks like headaches are gradually getting better. We have now again a period of unstable weather (it normally get bad then) but headaches stay very moderate - easier to handle. Yesterday it was a bit bad again but just 50 mg indomethacin was sufficient to get painfree for the rest of the day. Side effect of melatonin are very vivid dreams. 

    So, Thanks for this recommendation !

    siegfried

    • Like 2

  15. On 1/15/2020 at 9:57 AM, Zoejarvis said:

    I dont know how similar Paroxysmal Hemicrania and Hemicrania Continua are?

    Hi Zoe,

    Thanks for your reply ! I am very glad to see other people here with the hemicrania syndrome as there aren't that many around.

    Many people in this forum think they have hemicrania or show the symptoms but most of them fail the indomethacin test. 

    From what I understand, paroxysmal hemicrania are short cluster-like attacks but no background pain in between. PH is almost always chronic but there is also a rare episodic variant.

    Hemicrania continua consist of 2 parts. A continuous background pain that is there nearly 24/7 and exacerbation on top of that background pain. These 'attacks' can look like whatever what. Sometimes they can mimic a migraine attack, a CH attack, a PH attack.

    I have the short PH attacks but I also have a lot of continuous background pain. At first the indomethacin only worked against the short attacks so it was labeled PH and the continuous pain was labeled as chronic migraine. But what do I see now ?? The longer I take the indomethacin, the better it works and it now also works against the continuous headache ! So maybe I have HC and not PH. I read a study lately (but can not find it back) that concluded that PH and HC are the same entity and often a patient can transform from HC to PH or backwards.

    I have a very good response with oxygen, which is quite weird. So currently oxygen and indomethacin is what I use. I used a lot of triptans in the past but these are barely working so I do not take them anymore.

    I seem to be pain free during long dry spells, like heatwaves. But once the weather become a bit unstable it starts again. We had a heatwave here for 10 days and I had only 2 days pain. but as soon as the low pressure kicked in, headache came back. Always wake up at night in the early hours with pain in my eye, like someone punched me. When I get up I do 20 min of oxygen which can bring relief for some time. If it is too strong, I take 100 mg indomethacin. It starts to work after 1,5 hours and keeps me pain free for 7 hours. If it comes back after 7 hours, I take another 50 mg. But I try to keep my indocin intake to a minimum so if it is not too bad, I try to keep it at bay with oxygen.

    I have always headaches, 24/7, 365 days a year. But it is mostly not so bad... more like a pressure on my eye or some kind of migraineous feeling. If I let it, it will get stronger and escalate into PH attacks or sometimes like strong jabs and jolts. Before I got indomethacin, I suffered much more. With the indomethacin, it is very good under control and fortunately I have very few side effects.

    I added a study here about HC and another one about PH ... one of the most detailed I ever found about the subject.

    Best Regards !

    siegfried

     

    Hemicrania continua.pdf

    Paroxysmal hemicrania - a clinical study.pdf

    • Like 1

  16. Hi Mox,

    Some things here after an exacerbation series:

    • restlessness : like an extreme adrenaline rush, can go on for an entire night - like I do not know what to do with myself
    • If it was bad and go to sleep, when I close my eyes, everything looks like lighten up (its not dark) and all kind of shapes start to appear, like crystals in blue, green colors. That can go on for a few hours after it wears off 
    • Feel cold and unable to heat up

    When I have the continuous background pain, suddenly out of nowhere, nose start to run and unable to breath through my nose like I am suddenly in the middle of a big cold. Can go on for an hour and that suddenly vanishes as unexpected as it came.

    All the best !

    siegfried

    • Like 1

  17. Hello Batch,

    That is weird. After my results came in, I got a call from the doctor my Vit D levels were too high and asked me to stop immediately with supplementing Vit D.

    I took my results then with me on my consultation with the headache specialist and there they said the same. Value is OK they say but should not go higher than that. So I did what they asked me and I stopped. I will restart supplementing again after the summer. 

    I take indomethacin with pantoprazole most of the time.  

    siegfried

     


  18. I also have permanent miosis (pupil that does not come bigger when in the dark) on my right eye.

    I went to see an eye doctor several years ago because I was afraid I maybe have some tumor or something. What he did was drops of cocaine in the right eye. If everything is normal, the pupil should suddenly become very big.. what it did. So this took away my worries for something more serious. 

    These autonomic symptoms are often weird.. like two days ago, I suddenly felt really unrest and my nose was running as I suddenly go a big cold... the typical symptoms when I am having attacks but absolutely no sign of a headache at all. After an hour or two everything came back to normal.


  19.  

    17 hours ago, CHfather said:

    would it be worth it to try any of these supplemental or alternative treatments?

    Hi CH Father !

    Thanks a lot for your responses and references !

    Yes I read about melatonin before as treatment for HC and PH but haven't paid attention to it. So I think it is really worth trying and I will get melatonin and see what it does. 

    I am on day 5 now and I feel it is running to it's end but the migraine is making it's entrance now. I know how to handle that one. So for indomethacin, I got the following:

    Day 1 -> 100 mg, Day 2 -> 150 mg, Day 3 -> 150 mg, Day 4 -> 175 mg, Day 5 -> 25 mg. And that should be it for this time. In my experience, coverage from indometacin takes around 6-7 hours and so during the gaps between two doses, the PH tends to reappear.

    I also know about GOM nerve block with medrol and lidocaine however it's a bit strange here. From the two major hospitals where I am for follow-up, one is doing it as a standard procedure and the other one not. I asked why and it seems to be a decision to go with a certain procedure or not. They will have their reasons why they don't do it.

    What I also experience is that the indometacin becomes more effective the longer I take it. This seems to be in line with most hemicrania patients that can diminish their doses over time. 

    Thanks again and all the best !

    siegfried

     

     

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