Siegfried

Hi Dsstaker, I remember I read once that this is not uncommon for CH. siegfried

Thanks a lot for your message Jon ! Yes that is my biggest fear as well... My employer is tolerating me being absent because of headaches but loosing the most fundamental skills for doing my job properly... that is unacceptable. I think I will give it a try and then I have at least a confirmation for myself if this medication is a solution or not. I have taken the full regimen in the past for around one year. It was very expensive to buy all these products and I did not really experience any change in my headaches. Now I take only Vit D3 (usually around 5000-7000 UI/day) and 400 mg magnesium, and sometimes a multi-vitamine for a few months. My vit D levels are always around 70. I take it to be able to deal with the physical toll from these headaches and to recover faster (more resistance and immunity). I do not take it for the headaches itself because there is no effect. Yes the multiple headache is difficult. The migraine is a real chameleon under the headaches and after been diagnosed for 8 years with CH, it turns now out I am dealing with its much rarer "ugly sister" instead siegfried

Hi friends, I thought that headache attacks would self-quarantine during this COVID outbreak. Well for me, it worked for a month up to today After a difficult 2 months, I got the deserved break in March and here we go again... Woke up with a dull headache this morning and by 9 am I experienced the first attack. By noon, I was already experiencing my fifth attack fast ramping up in severity. 100 mg indomethacin stopped the attacks within 2 hours and later I had to take a zomig pill to remove the residual migraine. Currently its rather clear now in my head. I hope this is not the start of a long and difficult cycle again. My doctor want me to try Topamax as it should work against both CPH and the chronic migraine. I read it can also work for CH. However, after reading all the experiences with this medication, I am afraid to take it. Anybody has experiences with this one ? I keep vit D levels as recommended and I have things i know they are working: Indomethacin is absolute for the attacks and for the migraine, Zomig, Oxygen, Excedrin all works well but it is a bit tricky when to take what to have a maximum of effect. I also got a good effect with Medrol and i have a nerveblock at home but as the hospitals not doing any consultations I can not go anywhere to get the injection. Advice and experiences are welcome siegfried

Hi Kat, It can be you have CH, migraine or both... See my earlier posts for my experience with co-existing headaches. It is extremely difficult to distinguish when you have both as migraine tend to mimic the co-existing headache. Many people pretend to have "shadows" but I am sure in most cases it is actually migraine. They do not have it explicitly but they carry the gene and it comes out during cluster periods. Then the migraine tend to imitate the CH but in a lighter version. Very interesting remark about the pupil of the eye. I remember around 5 years ago, I went around to all the eye doctors in my neighborhood as my right pupil did not contract anymore. I was scared to have Horner syndrome. Doctors did the cocaine test and concluded it was not Horner and could not find any cause. So it looks there is quite some truth in this remark. Anyway with headache diagnosis you need a lots of patience. Difficult cases take years to diagnose properly. Co-existing migraine or latent migraine is it what makes it even harder. Best regards ! siegfried

Hi Dlions20, Occasionally we are seeing people here in their 70s asking on how to treat their first CH cycle after a remission of sometimes 20-30 years So I would say, never consider this thing as "done" or you can be in for a nasty surprise later on. And when you are pain-free, always consider it as a remission and enjoy that time :) siegfried

Hi Arrow, What is 10 ? I used to never consider an attack as 10 as I always think even more pain can be inflicted. So I consider 9 as a maximum possible. My attacks (Paroxysmal Hemicrania) come in batches non-stop over a period of around 1-2 days. Attacks take on average 6 minutes each. First ones go well but after 5-6 attacks it start to ramp up. They approaching 9. Mostly a migraine attack has then also already started and is also fast ramping up to 7. Those 2 together become unbearable. Maximum what I can stand is 6 to 8 hours of this which is around 8 to 10 attacks. That is the moment where I think "something has to happen right now" ! Every attack period is like this and I have never experienced a "light" one... most ending up into an ultimate torture... unfortunately Best Regards ! siegfried

Hi Moxie, Did indomethacin did something for you ? I found that 150 mg did not confirm completely but 225 mg absolutely stopped all attacks. But it does not play good with my migraine and therefore it is not a real solution.

Hi Ihdc, There is definitely an effect that both have on each other. Migraine is well known to imitate a co-existing TAC and can do that damn well. For 8 years I have been diagnosed with CH but the specialists recently have revised it to Chronic Paroxysmal Hemicrania (CPH) and I also have migraine since I am 12 years old. So even I am a man, I am keeping very much on the female side of the headache spectrum Since a few months, I am now under treatment with one of the most renowned CH experts in Europe and he told me this is a typical pattern when migraine and CH are co-existing. It can even go that far the patient can not know the difference anymore between a CH attack and the migraine imitation. That is more or less my case as well. Even a high doses of indomethacin stops my attacks completely, I am absolutely not better off as the migraine keeps coming and is then just an imitation of the CPH. Exact the same pain, it goes not so high in pain level (max 7 while CPH can easily go to 9/10) but the big difference is that the CPH are only 5-10 min attacks while the migraine can last for hours and hours. I can imagine that your symptoms are very much standard which is that the migraine follows the pattern, cycle of the CH. I know it's a damn mess. People who have only one (migraine or TAC) can not imagine what it is to have both... its really unlucky and we have to deal with it the best we can Good luck ! siegfried

Hi Kat, This is also my second attempt. I tried it a week before this trial and it also completely failed and had to discontinue after 2 days. After the second day, I woke up ill like a dog and started vomiting until in the afternoon. Then it got better. Now for this second trial, I did not have this side-effect. Only terrible pain in my stomach the first 3 days but that went away. I take Pantoprazole to protect the stomach. Now I am completely fine. Dizziness I have occasionally and it last around 30 min but I am fully functional so no big deal. I also took a more stringent approach. I have 3 doses per day so I keep as close as possible to one doses every 8 hours. Taking the pills with a glass of milk + some food is also better than take them with just a glass of water I feel. I read it can take up to 7 days to work so you have to give it some time to become fully effective. With me it took around 5 days to really kick in. Also the recommended doses are different. For CPH 150 mg/ day should be sufficient but for HC, they often need to go up to 225 mg/day.

Hello friends, The first 10 days of my indomethacin trial are behind me. I started to take it 10 days ago when a new barrage of attacks started. I was advised to take 150 mg/day when they started and continue for 14 days. When they started I took 100 mg and normally when they start, the intensity is ramping up one after the next and the background pain as well until it becomes unbearable and need Zomig to temporarily abort it or oxygen to make it livable. I can stand the entire thing without abortion for a maximum of 4 or 5 hours. I am usually on one 10 min attack every 30-60 min non-stop for around 3 days. Now with the indomethacin it was different. Started to feel an improvement already after an hour - attacks became bearable. Around the 6th attack it got worse again and I had to clench my teeth and bite myself through the pain but also this faded away. Next day I had a rather mild background pain the entire day and no attacks which never happened before. The next day in the morning, the attacks came back through but after the 3rd one it all suddenly stopped and the cycle was over. This was probably due to the long time between the last indocin pill in the evening and the first in the morning the next day. I feel that the indomethacin works for around 7 hours and then the pain creeps back through. All the days that followed were completely painfree except when there was more than 7 hours between two doses. Then the background pain came through again but was very fast erased with the next doses. This is also unusual as I have never had a single day completely painfree. So for me this is a very good result and that is definitely the best preventive I have used until now - comparable with prednisone. Abortive qualities are nearly similar to Zomig. However I do not consider the result definitive yet. I can still not believe indomethacin should work for me. I want to do another trial later in the year. I just came out of my 1,5 month remission and the headaches have not yet reach their maximum. If I have the same effects during August/September, then I will be convinced indomethacin is the solution. From a diagnostics perspective, I let it to the doctors to draw their conclusions. Can be they reclassify me as having paroxysmal hemicrania (CPH) instead of CH, which should be more in line with the symptoms I am showing. Have a nice day !

Thank you very much CHfather !! I was looking for this kind of information for a long time but I could not find anything about this. So I just finished phase 2 of my experiment. Stopped the indomethacin yesterday and now, 24 hours later the pain is back. Not strong but it is clearly there. I will repeat this procedure a few more times to have a clear confirmation.

I am also back on indomethacin. I have tried a low dose for a few days in the past but it did not help. In November I went to the hospital for my yearly checkup and I told them my attacks are rather short (avg 10 min) and can go on the one after the other for days, the doctors were thinking on CPH but on the other hand I have an excellent response on triptans. So they did not know what to think about it. But to rule out confusion I asked to do the INDO test again. The doctor said that for CPH, 150 mg/day is a sufficient dose and should do it. For HC, higher doses is required up to 225 mg/day. I have been in remission since a month but two days ago headaches started again. I must say that the indomethacin start to do something when I take at least 100 mg. Pain completely vanished within a few hours ! Does that mean something ? I really don't know anymore... I will have to do more tests with the indocin to get a real confirmation as it can also vanished out of itself and maybe it wasn' the indocin. But headache that respond to triptans and also indomethacin is unheard of. So very weird... I'll keep your guys posted

Migraine can easily be bilateral while CH is rather strictly unilateral I have never got any success with O2 for migraine. For CH and CH shadows it works very well but for migraine there is no effect. The intense breathing that is required even make it worse. For me O2 is a very good way to distinguish between a CH shadow and a light migraine headache. Without the "O2 test" it is very difficult to tell the difference. siegfried

very good remarks from Pebblesthecorgi; you better read his response twice

I would say; definitely not. Ibuprofen is not a diagnostic tool for CH, such as indomethacin is for hemicrania. So if it works or not, with regard to diagnosis it doesn't matter. I have never tried this but I use Excedrin Migraine sometimes. Results are very poor and often a hit or a miss. If it does something, it gives me a little bit of relief for an hour but mostly it does nothing. Oxygen + a cup of very strong coffee gives much better results. If you look for a diagnostic tool for CH, I think oxygen comes closest. All the best !

Hello Clusterfaked, I have both, migraine and CH. Migraine started when I was around 10 years old (so going on for 40 years now) and CH started in 2012. You can just look up my first posts in this forum as I have given a lot of detail about it when I started to have CH. "Cluster migraines" do not exist. But there are some people that have both conditions. Mostly the CH attacks will come first and that will trigger a migraine attack. That is very common. Having those together is far from fun and to be honest, it's a complete nightmare. The average time for a migraine attack is around 20 hours. Migraine starts very gradually and also fades away very gradually. There is no abrupt start or end. CH is different. This stops within 10 seconds or something. Also the pain is very different. Migraine is diffuse (you can not really pinpoint a location in your head) and sick making. CH is sharp, focused and brutal. Each have their own problems to deal with. I am always very surprised how those two conditions can influence each other and take over characteristics from each other. The difference between a cluster shadow and light migraine is often impossible to make. But I can know the difference by using oxygen. CH respond on oxygen very well and if not abort, it should diminish the pain very rapidly. However for migraine, oxygen does not have any effect. On the contrary, the breathing through a mask will make your migraine attack immediately worse. There are some other key differences as well that have been pointed out by CHfather. But anyway if you have more questions pls ask ! All the best ! siegfried

Be careful with prednisone. It is great to take it for a few weeks but in the long term, it can have all kinds of nasty side effects. Diabetes is a major one and it can also have a huge psychological impact. But yes it works very well. I was at the emergency a month or two ago and they gave me an injection with prednisone because nothing seems to help and the headache woudn't die. One or two hours later, I started to feel already an improvement and finally went home more or less pain free.

Hi Dlions, Based on your symptoms, typical cluster headache I would say... Background headaches between the attacks are very common and can be very severe. Some have them and others don't. Some posters mention hemicrania continua. I would say if you have a good response on triptans or oxygen, then HC can easily be ruled out because hemicrania does not go away with triptans. If not, then I would consider an indomethacin test. Optimal doses varies from person to person. If you take that for a few days and your headache completely goes away, then the chance is very big you suffer from HC. I know someone with hemicrania continua and all by all, the symptoms, type of pain, frequency, location etc... its a very different beast and not really comparable to CH. All the best ! siegfried

Hi Dlions, Welcome to this excellent forum ! I am having clusters not exactly in your way but something more or less similar. First one starts, then have nothing or some kind of migraine-like background pain from 5 min up to 1 hour and then the second attack starts. This process repeats itself non-stop for 2 up to 6 days. Then it stops and for me that is then that my cluster is over. I can then have one, two or 3 weeks break up to the next cluster. That is going on for the entire year except for an October-November break of 1,5 months. Very often these clusters will also trigger migraine attacks... so have to deal with 2 problems at once, which is a horrific experience. From what I have already heard here and there, this pattern is not the normal pattern but definitely not uncommon. Every headache expert is familiar with this pattern. But your are right, most CH sufferers have like 2 to 5 attacks every day for the time their cluster takes which can be several months. I have 12 to 15 attacks/day for just a few days. I have seen someone on Youtube who explains her attacks also in this fashion. There are many types of patterns that can occur and everybody is a bit different. You will learn that while reading trough posts in this forum. That is what I can tell you about it Best Regards ! siegfried

In the new ICHD-3 classification, the remission period must now be >3 month to be episodic, if not its classified as chronic while under ICHD-2 you was already episodic with >1 month remission. So a lot of episodic patients became suddenly chronic... quite weird if you ask me.

Thanks for the responses ! Batch, thanks for the info ! I used to drink twice a week a cup of hot milk with a spoon of tumeric and black pepper. I stopped that but I started this today again + other supplements. All these things are anti-inflammatory and should hopefully have some effect on the frequency and severity of the CH attacks. Will let you know how it goes. siegfried

Hi Wesconsin, Welcome to this forum ! Although this forum is mainly dedicated to cluster headaches, migraine is also discussed often here. If you want to get into a specialized migraine forum, I recommend the folks on migraine.com. There are always huge discussions going on there about treatments and especially the latest ones like Aimovig. Please have a look there. But indeed, 90 % of the posters are women; nothing wrong with that but it is just a fact that migraine tends to appear more in women than in men. For CH it's rather the opposite but these male-female differences are diminishing. Getting control over migraine is not an easy thing. I suffer myself from serious migraine attacks since childhood, I can not remember a time I did not have migraine, and now I am 50 and they are still there, although they have much improved. Since 2012 I got cluster headaches but that is another story. CH and migraine have some overlap but they are two different conditions that have each their own problems. Now what can be done to bring them under control ? That all depends from person to person. For some, magnesium, feverfew, butterbur, ribovlavin (vit B2), CoQ10 can work and some have good results. I never had good luck with these supplements. There is here also a Vit D regimen that brings relief to many CH patients. There are some modifications to make for migraine (Batch, who invented this regimen can explain you all the details) but these are all things you can try. Some have luck with osteopathy, manual therapy etc. if the cause of the migraine is in the neck. I did that as well and it had some effect. Also important is try to get control over your triggers. First you must figure out what your triggers are. Most common ones are glaring computer/smartphone screens - that is a huge one for me, dark chocolate, citrus fruits etc... Also important is not sleeping too long and getting up as early as you can. But I am hugely dependent on triptans. I have always taken Zomig but there are so many you can try. Some are milder and slow acting while others are fast acting and stronger, with more side effects. That is it so what I can tell you. There are others here with migraine and they can tell you their insights and experiences. Anyway good luck and keep us posted ! siegfried

Hi all, I am quite on a bumpy ride lately. After having been hospitalized a few weeks ago, I am back at home for a week unable to work. A new cycle started on Monday afternoon with non-stop attacks every two hours. Serious migraine-like background pain in between so not much relief between the attacks. I passed out 2 times from the pain. 3 Zomig nasal sprays + 2000 liters of oxygen later, its now Thursday afternoon and it has finally stopped. I still have now a light migraine headache on the left side (while clusters are on the right) but that means it has ended. A left side migraine always concludes a CH cycle which usually only last 3-4 days but are super intense and concentrated with a non-stop barrage of attacks, the next one a bit more painful than the previous one. I hope I have a few weeks of relief until the next cycle. Anyway, I did a second attempt with Verapamil. Tried it previous year but I gave up at 240 mg because of the side effect on my nerve system. I also remember that during that time I had terrible migraine attacks. These should normally be more or less gone, but I remember a sudden very explosive flareup of migraine. Did not make any connection with Verapamil though, until now... At my second attempt, once I went from 120 to 240, exactly the same things happened again. These pesky side effects on my nerve system and sudden very severe migraine attacks that came out of nowhere and did not react on any medication (even not my trusted Zomig pills). I started to make the connection between the two and I immediately stopped the Verapamil. So never this medication again ! For an effective preventive, there is not much left in my case... They want to try lithium. Anyone any experience with that ? I also increased the D3 again. Unfortunately it has never done much but at least, i take it as one can not go wrong with this. I thought that CH starts to taper off at later age but not as far as I can see for myself. Just passed 50 now and I have the impression the CH is getting worse in stead of getting better. Lets see what the future brings... All the best ! siegfried

I am currently on Prednisone. Arrived in the ER previous week. Attacks started on Friday and continued into Saturday but the background pain between attacks did not go down anymore. Normally it falls back to KIP 1 or 2 but now it went just to a 6 or 7 and with the next attack back to a 8-9. Could not stand the pain anymore and triptans gave only relief for a few hours. I saw no end in sight so I tried my luck in the ER on Saturday evening. Drove to there between two attacks and at my arrival, got already another one. They put me straight onto the oxygen to make it a bit milder which worked well. Then they gave me a shot of Prednisone in my vain in my arm and I must say... after an hour, the pain started to go away. I was astonished by the effect ! Now I am taking 32 mg every day now for a week and had not an attack anymore since then... only 1 hour some mild-sharp pain in my eye on Wednesday but nothing serious. Tomorrow I start to taper down... will see how that works out. And yes, steroids feel like.... steroids. I have lots more energy, don't need much sleep, very clear thinking and also very positive thinking. Hope I don't get a backslash when start tapering down. They also asked to try the Verapamil again. So now I am my first week on 120 mg and end next week, I need to go for an EG to go to 240 mg. Hope this time it helps as last time Verapamil did not do much. I can not tell you if it brakes cycles or not as I don't have that much cycles. I have more like a chronic pattern with attacks in the weekend and reasonable days during the workweek all year around. However last week of August it got exceptionally bad so maybe yes I am in some kind of cycle. All the best ! siegfried

From my experience in this forum, most people get some warning sensation that something is coming. I am not episodic but when a batch of these things is coming my way, the first what I feel is pressure in the right ear, then the eye start to feel like numb and swollen just like the eye area got stinged by a few wasps.