Siegfried

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.

Hope the busting works and you can get rid of these attacks ! siegfried

hi, I suspect your system is infected with some virus better check :)

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

I am unfortunately back in a new attack cycle. 4th day now although I did not have much problems with it and could function normal as indomethacin did a good job of stopping it. Yesterday however, I took the last 50 mg in the afternoon so its working must have been finished overnight as around 6 am, I woke up from quite heavy subsequent attacks, hellish pain in my right eye and my nose stuffed I could barely breath. Tried to sleep a bit but could not and 8 am finally got up to have my breakfast with another 100 mg indocin. We are now 9:30 and the stuff starts to work. Pain in the stomach and dizziness is increasing but the headache is proportionally diminishing. No more attacks and the sharp continue pain in my eye is fading away. So all by all it is going to be an OK day but I don't know how many days more. It's getting time this cycle is over. Good we have a holiday tomorrow and Tuesday (Belgian national day)! I am still trying to find a good trade-off between indomethacin intake and overall health. I take as less as possible but over the last year, my kidney function has diminished a little bit from 90 % to 81%. Doctor say its perfectly OK and no worries to take the indocin but my gut feeling tells me I better be careful. I try to take as less as possible and follow the guidelines from the hospital: Not more than 3 subsequent days and maximum 150 mg. Oxygen does a terrific job on the migraine (very unusual) and zomig does an OK job but no way as effective as the indomethacin. I tried Imitrex injections lately and was very disappointed. It did not do anything and if I would have injected myself with 6 mg hot water, effect would have been similar. My vit D levels are around 85 ng/ml so a good range but it does not make any difference on my headache situation. All the best and courage to all those who struggling with a primary headache condition ! siegfried

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

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

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

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

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.

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

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

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

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

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

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

@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

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

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.

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

Hello Friends, How would you feel spending several years on a CH forum, convinced you have CH but then it turns out you have something else ? Well that is what happened with me today. Some of you maybe remember my earlier posts where I was always talking about my kind of a-typical CH that maybe looked a bit like CH but was a different beast all together. Today I came back from my new headache specialist (the best I ever encountered) and after going over my headache diary and especially my indomethacin test responses it turns out I have Chronical Paroxymal Hemicrania or CPH. And all the "shadows" I had is all migraine, as the indomethacin do not respond on that (otherwise it could have been hemicrania continua). Disadvantage of this is that, if they change my diagnosis, I will loose my compensation for oxygen (something that served me so well the past years) so I will maybe have to pay it myself. Apart from the indocin there is not much that can be done. I consider to try the Vit D regimen again but let it fine-tune by Batch so it has maybe a chance of working and I am glad to be a test case for CPH Is there anyone else here on the forum with CPH ? If yes, it would be nice to know these people as CPH is much more rarer than CH. Anyway it feels kind of weird... having always felt very good with this community but what I thought what bound us (CH) is now not there anymore. But as CPH is often called, CH's "ugly little sister" I am sure I am still a very welcome part of the family here. All the best ! siegfried

Keep well Brian !

Hello Shubham, There are some guidelines I learnt from the doctors I have been with: If your headache is strictly unilateral (never appear on both sides on the same time) and also side locked (always appear on the same side) and your pain goes together with a feeling of agitation or restlessness, that is the red flag for a category of headaches called Trigeminal Autonomic Cephalgia or TAC. CH is a member of that family but also both hemicrania headaches and I think SUNCT and SUNA as well. So if you fulfill the above there is a possibility that you are categorized as "probable TAC" along ICHD-3. But again... you MUST see a neurologist as soon as possible. They will make a scan of your head to ensure there is no underlying cause and thus confirm your headache is primary. Don't rely on self-diagnoses for this kind of things - its too dangerous. siegfried

Hi Shubham, A good starting point for self-diagnosis is the ICHD-3 classification. That is what every doctor is using as they are a kind of international guidelines. It somehow sums up the symptoms you should have, and that in comparison to many other symptoms you can have. That is a big difference. For cluster headaches, it reads as follow: Description: Attacks of severe, strictly unilateral pain which is orbital, supraorbital, temporal or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to eight times a day. The pain is associated with ipsilateral conjunctival injection, lacrimation, nasal congestion, rhinorrhoea, forehead and facial sweating, miosis, ptosis and/or eyelid oedema, and/or with restlessness or agitation. Diagnostic criteria: At least five attacks fulfilling criteria B-D Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes (when untreated)1 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 Occurring with a frequency between one every other day and 8 per day2 Not better accounted for by another ICHD-3 diagnosis. Notes: During part, but less than half, of the active time-course of 3.1 Cluster headache, attacks may be less severe and/or of shorter or longer duration. During part, but less than half, of the active time-course of 3.1 Cluster headache, attacks may be less frequent. Very popular and also very helpful for many here the vitamin D regimen for cluster headaches. It is a balanced regimen of vitamins and minerals centered around Vit D3. You can look it up and can give it a try. There is a PDF available that describe everything in the details. Hope that helps and if you have any further questions pls ask. We are here to help you the best we can siegfried

Hi Jon, I did a serious try... 4 days on 25 mg/day... at least ! But it did not end well... I lost my short term memory. I am on sick leave this week as I could not remember anything about my job yesterday. Today it is getting a bit better and seems my memory is gradually becoming back accessible. It was a frightening experience. I had a chat with the neurologist who put me on it and he told me that sometimes they see people who are very sensitive to Topamax, on the other hand they also have people that can withstand up to 400 mg/day. So I am definitely in the first category and not advisable to continue with it... so no more Topamax for me. All the best ! siegfried