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Siegfried

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About Siegfried

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  1. Siegfried

    Diagnosis

    Hi Eggman, A TAC can come with many different autonomic symptoms. It is not always a red eye or tearing eye. It can also be a stuffed or running nose among many others. And the most important, following the ICHD-3 classification, it says: C. Either or both of the following: at least one of the following symptoms or signs, ipsilateral to the headache: – conjunctival injection and/or lacrimation – nasal congestion and/or rhinorrhoea – eyelid oedema – forehead and facial sweating – miosis and/or ptosis a sense of restlessness or agitation So technically, the most important symptom is a sense of restlessness. And that is also how a probable TAC is defined these days... strictily unilateral sidelocked headache with a sense of restlessness. That is a red flag for a TAC. If you are restless, other autonomic symptoms are technically not required for the diagnoses. Apart from the above autonomic symptoms there are also alternative ones: – conjunctival injection and/or lacrimation – nasal congestion and/or rhinorrhoea – eyelid oedema – forehead and facial sweating – forehead and facial flushing – sensation of fullness in the ear – miosis and/or ptosis I have myself very little eye tearing, quite some nasal congestion but the fullness in the ear is a big one for me ! I don't have CH but CPH but that doesn't matter... the autonomic symptoms are the same All the best ! siegfried
  2. Siegfried

    Best breathing techniques with O2

    Hi Kat, This will interests you... http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1313766756 Look for the entry from Batch (in its typical large bold font ) and he explains that breathing method in detail. For me that last crunch as deep as possible to get the last part of CO2 out of your lungs before inhaling again is the most important part of the technique All the best ! siegfried
  3. Siegfried

    Atypical Diagnoses

    Hi Tom, I have chronic paroxysmal hemicrania. I do not have attacks all the time but in recurrent blocks of 2-3 days. When it's active, I can easily do +20 attacks a day. Average attack duration is 10 minutes. I have also migraine and such an attack series always start with a light migraine that then escalates. 100 mg indomethacin stops it completely, I mean the hemicrania attacks... the migraine is not affected by that and just continue. For migraine, I use oxygen which -very atypical- abort nearly all my attacks. Oxygen and indomethacin make me now nearly 100 % painfree. what doses of indocin do you take ? I had no effect on 75 mg, 150 was much better but I did 3 x 50. I changed that to start with 100 and then 50 8 hours later and that worked much better ! So I would advise you to experiment a bit with how you divide the doses. I have no side-effects from indocin and it cancels the attacks completely; which should normally be the expected result if you have CPH. You can try oxygen but I can tell you for CPH, it will make the headache a bit more bearable but don't expect a miracle. And anyway, attacks only take 10 min so until you opened your bottle and start breathing; the attack is already over. When I have CPH attacks I never use oxygen. Something that often can work for CPH is topiramate. Maybe you can ask to give that a try. But really, this ugly indocin should be your friend. Previous month, I had one occasion where I felt a new series was coming but I did not take my 100 mg indocin on time... well, a few hours later I ended up in the ICU begging they would do whatever to stop the pain ! siegfried
  4. Siegfried

    Zolmitriptan AM/PM

    Hi Tomas, If you want to take triptans this way, you should switch to a triptan with a long half-life. I currently thinking of Naratriptan or Frovatriptan. These two are also more gentle and cause less side effects. But I agree with other posters... trying to get through your cycle with triptans is not a good idea. You must try other means. All the best ! siegfried
  5. Siegfried

    When you know better but do it anyway!

    Yes, migraine is hard to beat and is very much underestimated. I once have been to a meeting for migraine patients and most of them, sometimes very young, their lives were completely destroyed. Not only from the migraine itself but from all the medications they took and the side effects of these medications. They were not able to have a normal life. Big problem with migraine is the high chance on rebound or medication dependent headaches. It's a spiral that once you are in, it goes only downhill. I have been very lucky that somehow oxygen worked for my migraine, which is highly unusual. It can abort around 70 % of the attacks, now for around 8 years now I am using that. I am on my 5th day of Inderal now. So far, so good... no headaches for now. Not taking the indomethacin anymore. Only problem is that my heartbeat is only around 45b/min and that on 80 mg. I normally should build up to 160 mg but with such a low heartbeat, I don't think that is going to work.
  6. Siegfried

    Prednisone

    I did it once. I got nearly instant relief (was an injection first) and it last until I took the last pills of tapering down. So about two weeks. Then pain started again. But even medrol works very well, this is not the kind of medicine you should rely on. It's simply too dangerous. O2 is indeed the better route but you guys seem always having difficulties to get it. Here in Belgium, once a diagnosis of CH or even a diagnosis of a probable TAC is made, the patient is automatically entitled for medical oxygen lifelong, completely free of charge and as much as he wants/needs. Only disadvantage is that all the bottles have standard regulators build in that can do maximum 15 liters/min. So it is not possible to get 25 liters or use a demand valve. If one wants that, he has to look for his own private supplier and it comes also at his own cost. siegfried
  7. Siegfried

    When you know better but do it anyway!

    Hi Mitt, I am in a similar situation. I have chronic migraine and chronic paroxysmale hemicrania. CPH is only triggered during migraine attacks, never on it's own... that is very weird. Usually between 10 and 20 attacks/day during a 3 days migraine period. Started with indomethacin a few months ago... have not gotten any sign of CPH since. But as indomethacin is not the kind of medicine to take long term, we decided now on another strategy. Propanolol (Inderal) to suppress the migraine, in the hope the CPH will not get activated anymore and will stay away as well. I hope that works out... Never got luck with D3. I take all these vitamins for over 3 years now but because of other benefits they have. It has not made any difference in my headaches...unfortunately I also got the sumatriptan injections now. It doesn't work for migraine. I barely feel any difference. Zomig is 100x better for migraine. For CH it works because a very fast effect is needed. siegfried
  8. Hello Tony, I know this is though... She said she tried indometachin, but did she go far enough to see if it actually works ? For hemicrania continua and paroxysmal hemicrania, indocin response is an absolute must otherwise the conditions are ruled out. So I would say, as long as there is no confirmed indo test, the hemicrania continua diagnoses is still unsure. When I did mine, I was also very bad the first day I took it. I was very ill, and vomit the entire day and my stomach hurt terribly. But because it was so important to has this test done, I did a second attempt one week later, and what ? ... no side effects ! Just a bit dizzy and quite some stomach pain the first days. So there is a possibility if she try it a second time, the side effects will be less... it's worth a try. Another option is have indocin as an injection (if that is available in Finland, I don't know) but this way you bypass all the stomach and digestion problems it brings and with an injection, the patient is already painfree within 1 or 2 hours, while with pills, it takes a few days up to two weeks if you do it the first time. If I would be her, I would really try to get that indocin in my system somehow to see what it does. Otherwise, for hemicrania continua and paroxysmal hemicrania there are unfortunately not so many options I am afraid. Topamax can work... but I don't know about anything else. I have been so bad myself for 8 long years and it is only since I got indomethacin that my situation has improved a lot ! But it is still a trade-off between the disease and this medication and try to find the best balance. I think she must also to find a good headache expert. Some are really good (try to look up some names from published papers) and if she documents her case really well, she can be surprised how fast she will be able to get a consultation. Best Regards ! siegfried
  9. Siegfried

    Topamax thoughts?

    Hi Dehabel, I tried it a month or two ago. Started with 25 mg and after just 4 days I lost my memory. Could not remember anything anymore. I was unable to work as I was sitting before my computer screen try to read my emails and no matter how hard I tried, I could not remember the context or what it was about. I then wrote a mail full of spelling mistakes to my neurologist that it did not work out. Stayed a week home from work as I was not able to do anything anyway. Also was not able anymore to brush my teeth... my toothbrush flipped out of my hand all the time. When I stopped with it, my faculties came gradually back after 3-4 days. Just like with any medication, some are over-sensitive to it, and for others it's a wonder drug without any side effects. Best Regards ! siegfried
  10. Siegfried

    Anyone else having this oxygen issue?

    Hello, Get the cluster O2 kit as advised above. If you are a CH sufferer and respond to oxygen that is one of the best purchases you can make. Breathing through the O2 kit is much more laborious than a normal mask so you have to breath with your mouth for a good effect. If breathing through the nose, the oxygen in the tank is too dry. You must add a humidifier (its a small tank of distillate water where the O2 is bubbling up) to eliminate that problem. But no need for that with the O2 mask as breathing through the mouth is the better option. siegfried
  11. Siegfried

    Indomethacin and dizziness?

    Hi EyecePick, Hemicrania sufferer here... so I know a bit about indomethacin It is heavy. First when I took it in November 2019 to test on 150 mg I was absolutely miserable. Vomiting, dizzy, terrible stomach pain and just feeling ill like a horse. I took it only 2 days and stopped but did not want to give up so I tried it again a week later and the first days I got terrible stomach pain again but no other side effects. That pain went away in 2 days and since then I have never felt any side effect anymore from the indocin. I have been diagnosed with atypical CH in 2012 but kept suffering. While I saw so many people here found relief on a variety of medication and/or other regimens I kept struggling to bring these headaches under control... until we found out that my headache is indomethacin responsive. I am not permanently on indocin but when I feel it is getting too bad, I take 100 mg and within an hour... pain is gone. Never feel any side effects and it's a big change to finally have something that really works for me. But have to agree it is not the most healthy medication. I would say... if you trial it for diagnostic purposes, don't give up easily with it. In the beginning it can take some time to kick in and doses can go really high up to 225 mg/day but if it turns out you having hemicrania, you will be happy you did it as it is the only medication that really works. Good luck ! siegfried
  12. Siegfried

    Officially re-diagnosed: CH -> Paroxysmal hemicrania

    @kat_92 Yes I know, indomethacin can be though and it is actually poison. Once I cut open a capsule to see what was inside and it was a kind of white powder but when I put a bit on my tongue, my tongue was burned and saw red ! So not very healthy stuff ... I did the first indocin test 150 mg just before Christmas and I remember on Christmas eve, I was ill the entire day, pain everywhere, dizzy and vomiting the entire day. It was horrible but I did not want to give up as it is the only way to know what I have. So one week later, I tried it again and ... surprise.. no side effect what so ever. Only quite some pain in my stomach that last for 2 days but that went away. Now I can easily take 225 mg without any side effect ! So maybe you can insist to try it again. As happened with me, can be you react totally different on it when taking it a second time. The biggest problem is hemicrania continua, because it can look like everything else. There is an extensive study on the internet about it and they say the exacerbations can look like CH, PH, migraine, tension headache and SUNCT. So for people who have a continuous background pain with attacks that change character all the time, it is good to try the indomethacin to see what it does. I have also lots of background pain 24/7 with the short attacks superposed, so hemicrania continua was what we had in mind first but the indocin worked only on the short attacks but did nothing on the background pain. So that is why HC was ruled out and a PH diagnoses was made. The background pain is now believed to be part of the migraine spectrum or some kind of tension type related headache. Yes, an indocin cure can reveal/rule out quite some things. I have been very good for the last 2 month with very few headaches. I am sure it is because of the COVID lockdown that I am able to work permanently at home and life is more quiet and regular in general. Apart from getting some food and basic necessities, I haven't left my home since 10 March. 18 May some limited mobility will be allowed again. siegfried
  13. Siegfried

    Officially re-diagnosed: CH -> Paroxysmal hemicrania

    Hi Tony, That can indeed be a possibility. All these different headache types react on each other and I agree it is very difficult to differentiate. I heard of women who have CH and migraine, they sometimes can not tell the difference which one is active at which moment. And that is also my problem. Oxygen in my case works very well for migraine if I am early enough. And as a migraine attack is always a trigger for a round of PH attacks, so it also indirectly works as a preventive for PH. I can abort 80 % of my migraine attacks with oxygen. That is why my triptan usage is very low compared to the number of attacks I have per month. But once the PH started, you are right the oxygen is not working anymore. Simply because the attacks are too short. Most attacks are average 7-12 minutes. In a very rare case, it can last 20 min. That is why oxygen is more or less useless as by the time you are on the oxygen and start breathing, 10 min have already passed and the attack stops by itself. But oxygen takes the sharp edges off the attacks and bring it down from 9 to 5-6. So it is a bit useful somehow. But during the attacks I am so busy trying to stand the pain that I am not able to focus on the oxygen. Indomethacin was not fully conclusive at 150 mg (some attacks still came through) but then they increased it to 225 mg. Then the response was absolute. There was not any symptom left of these attacks and all what was left was classic migraine that went easy away with a zomig pill. Now, 225 mg is a too high doses to take permanently (indocin is not the kind of med to take permanently anyway) and what I do now is if I feel it coming I start with 100 mg indocin and then 50 mg every 8 hours for around 3 days. Mostly these PH rounds take around 3 days with on average 20-30 attacks per day. So what I try is to cover this with indomethacin which is working well now. Indocin starts to work already in 1-2 hours and stop the attacks completely. I asked about CH, if I can still have it but my neurologist told me that attacks that last on average 10 min with +20 per day in the active period and fully indocin responsive can not be labeled as CH. I agree with this. But we will try to do some administrative trick to keep the compensation for my oxygen, which is exactly what you mention. Having 3 conditions so the CH diagnoses is still valid, and thus my right for oxygen compensation. Indocin by the way is also not that cheap. I pay every time 16 € for 60 pills. That is good for around 1,5 months. Thanks and Best Regards ! siegfried
  14. Siegfried

    Verapamil helping, hurting, or doing nothing?

    I got some weird side-effects with my nerve system when I took it. 120 mg was fine but when doubling to 240, the problems began. And I just did not feel fine with this. I tried it then again a year later with the same result. A medrol injection I also got previous year and then taper down with tablets and that went very well. No more headaches during that time and no side-effects that I was aware of. I found that a very effective way to bridge a really bad period.
  15. Siegfried

    Officially re-diagnosed: CH -> Paroxysmal hemicrania

    Hi Rod, Good question ! I have actually never tried one of the busting methods mentioned here so I do not know if it is going to work. But does busing also work for chronic headaches ? Mine is chronic, which is most common with PH. In CH most are episodic with a minority chronic but in PH it is the other way around. Doesn't mean I have headache 24/7... just that I never have +3 month remission. siegfried
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