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Siegfried last won the day on November 7 2018

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  1. Siegfried

    How was your weekend?

    Hi Brian, Vegetarian here, so a tofu steak for me siegfried
  2. Siegfried

    How was your weekend?

    Hello Funtimes, Hope you will have better painfree times ahead but anyway you are not alone ! Last month has been more or less a disaster for me. Since 1 December I had only 15 reasonable days but luckily not so many attacks (only 16 divided over 7 days) and not so intense (except 3 I got at night). However that is what I think about them as I never seem to remember anything of them. Strangely they are getting erased from my memory and when my wife sometimes tell me how intense it looked, I usually respond with "it wasn't too bad". But most of the misery were these strong migraine like shadows with regular short exacerbations that never seem to end. Went through ~12000 liters of oxygen and 4 Zomig pills last month. It's good the oxygen is there otherwise it could get much worse. As my symptoms have some overlap with hemicrania continua, I finally got on the indomethacin for a week but apart from a painful stomach, it had zero effect. As I have not gotten a clean break of more than 2 weeks since begin 2017 I start to suspect my pattern is chronic but rather a mild chronic (1 day/5 attacks per month min and 5 days/20 attacks per month maximum). Majority of the discomfort are nearly non-stop level 3-4 shadows with short 10 min exacerbations. So these are some new questions I have for the headache experts when I see them in February And as things usually get worse after 21 March, I fear a bit for the reminder of the year but no matter, things are what they are and we need to try to make the best of it every day again, no matter how bad it gets All the best ! siegfried
  3. Siegfried

    Pounding Head, Broken Heart

    Hello Moxie, That is awful to hear and very sorry for what you have been through. Migraine and CH are both such a terrifying diseases and for us who are blessed with the migraine/CH combo, that is horror beyond all proportions. Whatever happen, try to make the best out of it and 2019 will be a lot better... why not ?
  4. Siegfried


    Hi Brian, Please have a look at the forum of our migraine colleagues... migraine.com. There is a thread with already hundreds of testimonies about Aimovig. If you read through them, its indeed a bit like you say... it works wonders for most of them, but for some it can go awfully wrong. Seems caused by allergic reaction against the substance. Some had to almost pay it with their life ! Best Regards ! siegfried
  5. Siegfried

    Hello (First Post)

    Hello Brian, I know what you are going through as I have been in the same boat as you for a long time. Me as well have been a life long migraine patient (they started around my 12th) and it was actually a very 'classical' form of non-aura migraine completely fits the diagnostic criteria. In 2012 however I started to experience extremely painful exacerbations up to 3 hours during the migraine attacks, which took usually between 48 and 60 hours. I also experienced a running nose during these painful periods and extreme restlessness which was odd, as migraine makes me do exactly the opposite which is keep as quiet as possible. In migraine, every movement you make, makes the pain worse. So I went to a headache clinic to see what was going on and after answering all kinds of questions, to my big surprise, they came back with a diagnosis of cluster headaches. They gave me oxygen which even as a bigger surprise, it worked like a miracle ! I could finally get rid of most of my Zomig intake. Now when I joined this forum, I also had these questions of "what do I have now" ? Is it migraine, CH, both, is the one morphed into another condition ? etc... First I must say that your pattern of headaches is not that uncommon. It is something you will frequently see with people who have both conditions. It showed up like this in myself, there are other people here on this forum with similar patterns and I met many more in other support groups. I am a completely non-smoker (not primary and not secondary), never took any alcohol and never felt on my head or something that caused a head injury. So where does the CH comes from ? Right... from the migraine. That has also been confirmed by a study by Dr. Rozen. Please read this, it will give you a lot of insight: https://www.ncbi.nlm.nih.gov/pubmed/29536529 Now to make it all a bit more complex, there is also something called migraine with autonomic symptoms. So these people getting all the autonomic symptoms as with CH but they are caused by the migraine. So it seems that both conditions share some underlaying similarities. Does that mean that the one can morph into the other one ? My neurologist says "no" and I think they are right. I have examined it very closely in myself and what happens is that migraine and CH are actually two distinct conditions. They give a different type of pain, the pain originating in a different area, and many more differences. The sufferer should clearly feel the difference but what can happen (and often happen) is that the one condition is a trigger for the other. So it is common that during a migraine attack, CH is triggered and vice versa. What also can happen is that the one condition takes over some characteristics of the other one. For example nausea etc. So it is not always easy to figure out which headache type is active on which moment. So when that happen it gives the impression they are blended together. In your case, the best you can do is find a good headache specialist and let them figure out what kind of headaches you suffer. For example, you say migraine that takes 30 min with pain behind the eye.. that is not characteristic for migraine. Migraine feels more like a "cervical depression" and the pain is in no way the same like CH. So pls get a clear conclusion and for that keep a headache diary where you write everything down in the most detail. Also film yourself during an attack. Once that is confirmed, then you are in a much better position to get the adequate medication. You will then figure out very fast that oxygen works wonders for CH, but for migraine it does actually nothing. Triptans should work for both conditions. Hope that helps and good luck ! siegfried
  6. Siegfried

    Hello everyone

    Hello Rory, Welcome to this forum ! I share the opinion that the athlete bottles do not contain enough oxygen. For one abort, you would need, let us say, at least 15 min x 15 l/min = 225 liters. That is the strict minimum for just one abort trial without aftercare. Realistically we do need much, much more. A few weeks ago I had an attack session of 24 hours and I got through ~3000 liters. I hope you can get your hands on oxygen soon ! From what I can read from the US colleagues here, it can be challenging to get oxygen but it seems there is always a way out. Luckily here in Belgium the situation is different: A CH diagnosis from any neurologist entitles the patient automatically with a lifelong unlimited supply of medical oxygen + other necessities like mask etc... It really make sense to order the clusterO2 kit from clusterheadaches.com. Some call it the "Rolls Royce" under the masks and its very good. I ordered mine 6 months ago and I remember I ordered it on a Monday morning and one hour later after ordering I already got a confirmation it was shipped and I received it 2 days later. So I would say their service is very honest and reliable. And if you are a real oxygen fanatic who want to bring it to the next level, there is the oxygen demand valve as well. For example from BRP. Hope to read soon about your further CH experiences ! siegfried
  7. Siegfried

    Unsure about next steps?

    Hello TheChinBurglar, A few things to consider here: First and foremost, try to consult a headache expert in order to get a diagnosis. They are the best placed to do that as they see over thousand of headache patients every year and they know when to consider you symptoms as CH or something else. But in order to get a good diagnosis, you need to collect accurate data. So, keep a headache diary where you write as much as information down about your headaches. In addition, film yourself during an attack... your behavior will tell a lot about the type of headaches you have. Second, don't worry too much about not matching all the boxes and not screaming and shouting as much as this or that YouTube guy. I think your symptoms match CH relatively well. But it is important to get an MRI done to rule out any underlying condition. That is key ! If that is OK, they you will fall under one of the primary headaches. It is then up to the doctors to figure out which one. And I can assure you that, if they are real headache specialists, they know what they are doing and you have to trust the outcome and I know what I am talking about. When I got diagnosed in 2017 my CH did not look very much like textbook CH at all - just "some symptoms of CH" as they described it. But now 1,5 years later, they proven to be right and I still thanks to them every day they gave me oxygen back then, otherwise I would have ended up as a walking bag of zolmitriptan All the best ! siegfried
  8. Siegfried

    Newbie with 02, increase in attacks, any advice/help?

    Hello Dandownunder, It is correct that several persons here have reported more rebounds because of oxygen use. I do not know if this is an actual fact or rather a subjective impression. But I would definitely not consider this as a show stopper for using oxygen. Rebounds can also be attributed to the nature of your cluster headaches. Currently I am just coming out of a 24 hours barrage of attacks. Went through 3000 liters of oxygen but that is just the nature of how my CH are. Once they start, there is no stopping on them and they follow each other in rapid succession with only 30 min of relief in between the attacks. But on the other hand when they stop, they not come back for at least a week. While most people have the usual 1-3 attacks per day during a cycle, mine come in clusters (non-stop for 1 or 2 days and then a gap of a week or more). Maybe you have a similar pattern. With regard to oxygen breathing technique; Batch has published a very good document on this. Please read it. What he is saying is that while breathing out, you have to crunch your abdomen to get the last bit of CO2 out of your lungs before breathing back in. This is a very good advice. Before I used this technique I was not really able to fully abort a CH attack. I used oxygen only to bring down the pain or just to prevent CH from occurring all together by aborting the preliminary shadows. But since I use this breathing technique with abdominal crunch, I am now able to fully abort attacks with the optimask at 15l/min. So I would say, keep trying, experimenting and you will get to something that will work for you... We as CH sufferers can be happy to have oxygen as a treatment. Up to a year ago, when I got my heavy migraine attacks, I tried oxygen on them as I thought it would bring maybe some relief but to a migraine attack, oxygen does absolutely nothing, zero ... same for hemicrania. They can only resort to these unhealthy medications. While with CH, I start to breath in that stuff and within a few minutes, magic starts to happen :) All the best ! siegfried
  9. Siegfried

    Newbie help UK

    Hello Maria, Ketogenic diet is something else you can try and it seems to be very helpful for chronic cluster headache patients. I do not know much about it but what I know is that with this diet, the body is forced into a ketosis state where it does not use glucose as energy source (sugar and carbs) but uses fat instead. Regarding hemicrania, there are two types: Hemicrania Continua is a 24/7 background pain on one side of the head with exacerbations that have the characteristics of moderate CH attacks. Important for HC is that the background pain is always there and never goes away Paroxysmal Hemicrania resembles very much cluster headaches but there is one big difference - attacks are much shorter (2 up to 30 min) and occur at least 5 up to 40 times a day. Here is a very detailed review of the condition from a Dutch sufferer (in Dutch but you can translate it with Google) https://people.zeelandnet.nl/vdwindt/migraine/hemicrania.htm Both conditions have an absolute response to indomethacin and response to it is a must to receive the diagnosis. All the best ! siegfried
  10. Siegfried

    New cluster headaches

    Hello Collin, Currently I am struggling with something very similar. I had lots of CH attacks (which also triggered migraine attacks) from April and it stopped 7 September. Normally October and November are the most quiet months for me. But not this year. A few weeks after the cluster stopped, I have this constant headache exactly as you describe and exactly on the same places as you show in your picture. But it is not 24/7. I would say its around 3-4 days a week. At night it is much stronger than during the day. Begin November, we had the change to wintertime together with a very big drop in barometric pressure. That headache came then very strong then and resulted in 5 CH attacks in one evening. The next evening I got another 2. Then it stopped but currently again 24 h headache for 2 consecutive days. It feels like a CH attack that started but got stuck halfway and now sits there. Sometimes it comes stronger for an hour and then go back to its base level. I have to go back to the hospital in February and I also will ask a trial for indomethacin. But I doubt its one of the hemicrania as I have excellent response on triptans and oxygen. Normally both hemircania do not react on this. My CH is in permanent evolution and changes all the time. It has a lot to do with the heavy migraine I had for my entire life but seems I start to grow out of it (I am 50 now) and it is disappearing more and more. Seem the CH does not yet know how to behave with all this room in my head for itself :) I experienced my first CH in 2012 but it is the first time I have this semi-permanent headache. I think the best you can do is go to a doctor and ask for an indomethacin test. Your doctor can look up the doses and how to take it (as it is heavy on the stomach many take additional medication to protect the stomach) and then you will soon know if it is hemicrania or not. You can also search for "shadows" here on the forum. There are lots of threads about this subject and I remember stories from people who struggled with them for months and months in a row so I assume that these symptoms are not uncommon in CH patients. Some patients have clear-cut attacks and others have a migraine-like CH. I read once an article about this and that is because it seems that nearly 50 % of the population carries a migraine genetics but most actually do not have the condition. However, in CH patients, this genetics can make CH showing migraine-like features like nausea, photopobia, slow onset of attacks or long-lasting shadows between the attacks. I learned one thing... headaches are a complicated business :)
  11. Siegfried

    Do I have a cluster headache?

    Hello kbee ! Interesting story It always surprises me how different these headaches can manifest in each of us, with all kind of different symptoms. Now, when you say 'tests' I assume they also did a brain scan (MRI) and it came back normal, so they ruled out more serious conditions. If you did not have such a scan yet, you must ask for it. Now for what cluster headaches concern, here are some criteria that are usually seen with cluster headaches and if you fulfill some of those, you maybe suffering from them but in addition you must consult a headache specialist to get a proper diagnosis: How long do your headaches last if untreated ? Cluster headaches typically have a duration somewhere from 15 min up to 3 hours but for most people they take around 30 min up to 1 hour per attack. Also typical for a CH attack is that it stops suddenly. How would you categorize the severity of the pain ? Cluster headaches tend to be very severe with regard to pain level. Some attacks can be extreme, some moderate but overall I can say that for every attack, it hurts quite a lot Do you feel restless during an attack ? As you have the sudden feeling that you do no more know what do do with yourself - a bit like you suddenly got injected with adrenaline. This is also common during CH attacks Do these headaches grouping together in "clusters", which mean that during a certain period, you have many of those attacks and then during other periods, you have far less of them or none ? If you recognize yourself in those criteria, you will need to go to a neurologist to get a confirmation and to get the proper medication (oxygen, triptan injectable, spray or tablet and/or verapamil). You can then also take a look at some of the very effective remedies presented here in this forum. The Vitamin D regimen is one of them... Hope that helps and Best Regards ! siegfried
  12. Siegfried

    After Cluster Headache - Help Please!

    Hi A-Z, If you consider triptans for your shadows (especially if they are long-lasting) you can have a look at the ones with a long half-life which are a better fit for this type of pain. The two in that category I am thinking of are Frovatriptan and Naratriptan. They also tend to have less side effects than the fast-acting ones. Just pay attention not to mix different triptans together. All the best ! siegfried
  13. Siegfried

    New with questions, and possibly misdiagnosed

    Hi Nicole, I would advise you to search for a specialist in headaches, or a headache clinic (where not only 1 doctor but a team is making the diagnosis). Why is that ? Diagnosing headaches is very complicated. Of course there are these ICHD criteria but they are giving the most standard textbook symptoms which do not apply to everybody as every body is different. The task of the headache expert is to determine how far your symptoms can be off from the standard criteria but still fall under that diagnosis or which diagnosis applies the best if you have overlapping symptoms. They can do that as they are trained for it and see hundreds patients a year. When I went for my diagnosis previous year, i was very far off from the standard CH but the headache team who diagnosed me has seen something that was pointing to CH that none of us would. A year later, I know now they were proven to be right. In your case, ask them if paroxysmal hemicrania does not come into the picture. All the best ! siegfried
  14. Siegfried

    very very light cluster headaches? does anyone get these?

    Hello Jimmy, These small headaches, or shadows or onsets as some call them are the prerequisite for me for a cluster attack to appear. They always wake me up 2 am sharp and they feel like a migraine onset. They are not so strong and sometimes I barely notice it. BUT... if I wake up in the morning and they are still there, they will ramp up slowly in the afternoon and trigger cluster headache attacks (there preferred time seems to be 3 pm in the afternoon). Not one or two but at least 10 (15 to 120 min each with intervals of 30 min to maximum 2 hours). It can go on for 1 max 2 days until they abruptly stop. The weird thing is that I have to try to abort these onsets at all cost. If I manage to do that, no cluster attacks will come for that day. Even more weird is that only oxygen seems to achieve that. Excedrin migraine will take them away but once the pill finished working, they come back. Same with 2,5 mg zolmitriptan orodispensible. Only oxygen seems to do the trick and by just killing off these onsets or premonitories, as they call that in scientific terms, can keep me cluster free for very long time. So lucky for me, oxygen works as a kind of preventive... So in short, yes they do exist. See https://www.ncbi.nlm.nih.gov/pubmed/9533604 But I do not know how common it is. Hope that helps ! siegfried
  15. Siegfried

    What would you do

    Hello Yann, I use Zomig already since it came out (somewhere in the 90's) and I have never used anything else since. I find it really good but I try to avoid overuse. I am however less to speak about the generic Zolmitriptan. They say however it's exactly the same but the generic version caused me strong rebounds. I have used always the 2,5 mg for migraine but when I got cluster headaches, I need the 5 mg and now use the nasal spray as well. It works all the time ! I can still work with the pills as for me when a cluster come, I get around 10 - 12 attacks after each other, 40 min each with 1 -2 hour pain free interval. It goes on from 8 hours up to 2 days. So with a bit patience, the pills can still abort the entire batch. Definitely you must try the D3 and follow it exactly as Batch wants you to do it (see his informative manual). I have started it 2 months ago. OK, half August is usually the time for me to go into remission for the autumn and winter months but that does not mean headache free. Now I am already 3 full weeks with absolutely no headache sign at all and without using any O2 ! As far as I can remember, last time this happened was in February 2015. So as far as the D3 regimen concerns I am very impressed of the first results ! However it does not come cheap. I try to find the best supplements available and for me all the supplements I need cost on average around 100 € a month. But up to now, it's worth every cent ! As for the O2, I recommend the Optimask. Its very good ! I am currently looking into the demand valve but that has some challenges. The oxygen bottles delivered here are already with a regulator integrated that goes only up to 15 l... impossible to bypass. I will try to figure out if they can deliver also bottles with a fitting needed for a demand valve. All the best ! siegfried