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Siegfried

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Everything posted by Siegfried

  1. Siegfried

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    Hello bbane ! As MoxieGirl I have both as well. Heavy migraine sufferer since childhood. Clusters came in 8 years ago around age 40. Although these clusters were needlessly glued into the migraine attacks (I have never had a "normal" cluster headache without migraine onset first) they are very different and you should always be able to differentiate them. Clusters are explosive and FAR MORE painful than migraine but that does not mean that migraine sufferers are better off. In migraine, the headache is only a small part of the experience. There is also the photophobia, phonophobia, nausea and just the entire system is shutting down. Migraine also takes much longer; at least 4 hours. I can say it like that: cluster is like a painful bite from a centipede; migraine is more like a python that is slowly suffocating you and sucking out every bit of life-energy you have inside you. I have been diagnosed with clusters in 2017 by a headache specialist but because they were so strongly embedded into my migraine attacks, my GP doctor did not believe I had cluster and even myself I was also doubting. But since the migraine is recently diminishing (probably because of my age) clusters come more pronounced and now I am fairly sure. I always start with slight level 1-2 pain 6 to 8 hours before the attack. That is for me the time to do oxygen to get the entire thing aborted. If not, a slowly buildup start to happen 6 to 8 hours later, quite bumpy with sometimes level 3, 4 then at once fall to 1, then back to 2, 3 and so one. Strong nausea during this phase. When it reach level 5, eye start watery, nose congested, the adrenaline pump kicks in and then ... BAMMM 45 minutes of hell. After 45 min it stops suddenly and I am completely pain free. Not for long however... After 30 min, the entire thing is repeating itself again. This can go on for hours and hours, cluster after cluster attack. Sometimes the entire thing abruptly stops. Other times the migraine stays and still can go on for 1 or two days without cluster attacks. I think your postdrome is cluster related (and not migrainous). You have to search once for 'cluster shadows'. There they describe these kind of symptoms, both pre and post. Best Regards ! siegfried
  2. I agree with all what has been said above. Diagnosis can be complicated and it can take a long time before getting there. I have experienced it myself. As a lifelong "hardcore" migraine patient, I started to experience something that looks like cluster headaches 8 years ago during my migraine attacks. Around 1 hours of a sudden increase in very sharp excruciating pain around temple and eye together with autonomic symptoms and sudden restlessness. I found it all very weird as it was clearly very different from the usual migraine attacks. For a long time i thought it was caused by taking triptans but these bouts kept coming back in a vague "cluster like" fashion. I did not trust the entire thing and finally made an appointment in the headache department of the university hospital here. After talking for 2 hours with the doctor and answering all kind of questions, he diagnosed me with cluster on top of my migraine and prescribed me oxygen. And thanks the man ever did that because oxygen is saving my life currently !! My GP doctor still doubting the diagnosis... for him it is migraine and he do not believe migraine attacks can generate cluster events. So you see even doctors sometimes don't agree with each other. In July this year I had my second appointment in the hospital. Now I did my homework ... detailed headache diary, detailed reports of a few of these headache with detailed description of every symptom that appears every 10 minutes (that was hard to do during such a painful attack !) and after going trough all these materials and discussing again with their colleagues, the CH diagnosis was again confirmed. When my GP saw the diagnosis confirmation, he says he is still not convinced. They also give me verapamil but after 5 weeks of taking this, with their proposed doses increases, it did not do anything so I stopped it. I ask my GP if I should go for a second opinion in another headache clinic but he told me it will not make much sens as they will probably confirm the same. And as long as the oxygen does its work, why bother ? In the meantime I have done a lot of research myself. Maybe they were confused with migraine with cranial autonomic symptoms which can be very tricky to distinguish from CH. Maybe I need more accurate data for my diagnosis. Recently I was reading on clusterheadaches.com that in rare occasions "migraine and CH can blend together in one" referring to a few studies that indeed seem to confirm my case. I also have the impression that the last two years, the migraine (which I have already since age 8) is getting weaker and the CH character of my migraine attacks is becoming more and more pronounced. So it is constantly evolving. I have been very bad since May but now it seems to have stopped since 3 weeks. I started to take the vitamin D regime since 1 August so maybe that contributes, or it is just the end of a cycle. So as you see, it can take time and patience to come to a diagnosis and maybe it will never be entire clear especially if you are a borderline case. Best what I can advise you is to collect as much as possible accurate data. Write down everything what is happening, all the symptoms with their start and ending times etc... Also film yourself during an attack. Your behavior can give a lot of info to the doctor. All the best ! siegfried
  3. Hello mooch ! Interesting story ! Absolutely not the purpose to give a diagnosis here but if I compare your symptoms with the ICDH classification for cluster headache, it does not really match. And as CH is very stereotype with little variation (most sufferers have mostly all the same symptoms) I would suspect there is another type of headache at work here. But of course only a headache specialist is able to make an accurate diagnosis or rule out certain headache types. However, you are talking about migraine. That is a very different beast that can take on all kind of forms and shapes. It can go from very mild up to the worst condition imaginable and everything in between and is able to "glue" perfectly on other headache types you may have. Chronical tension headache for example. Now I am a heavy migraine sufferer myself and I also have many times a sometimes light, sometimes heavy pressure above my eye and on the temple for 12-24 hours on the migraine side. It can be tension headache, which I do not care but it can also be an onset for a real one and that is what I fear. For me, all my attacks start with such an onset (usually 2 am) and I can feel if the point of no return has been reached (usually 4 pm). In my case, in this "build-up" phase, 15 min - 15 l/min oxygen is the only thing that stops it from reaching its point of no return. Triptans, Excedrin and all these things will just slow it down a bit but nothing more. Finally it will get where it want to be. Why oxygen helps with me is a different story where the CH part comes in. Anyway, I should take it easy and not panic to fast that you do not have a diagnose yet for this particular type. Headaches are complicated and some fall in the stereotype pattern easy to diagnose, but most do not and that makes it complicated. Also recommended is keeping a headache diary where you write down as much as possible details about these headaches. Reliable data are key for a good diagnosis. Hope that helps ! siegfried
  4. Hello, Although this is an old topic, I want to hook in here as its one that personally affects me. Well if you have read my earlier posts, I am such a case that should fit into this fuzzy "cluster migraine" description. I just describe here a bit further what has happened to me over the past years: I have always had migraine without aura from childhood (I a now 49), so my entire life more or less, and they were always episodes of 24 up to 48 hours of normal migraine. A deep throbbing pain accompanied with nausea, photo-phobia and so on. Really the very standard migraine but always severe. In 2010 however I experienced something unusual as during a migraine attack (I was quietly laying in my bed in a dark room to sit it out) the pain at once became immensely strong and was of a complete different nature than I was used too. I could not stay in my bed anymore and got up and was running around. I did not know it then but it was a typical CH pain. It stayed for around one hour, then suddenly went away for 10 - 15 minutes and then it came back for another hour. It was so strong I could no more stand it and had to take a triptan, which I tried to avoid, to get finally some relief. I thought wow... this is an exceptionally hard migraine. But it did not stay that way. A few months later, after some normal migraines, I got this hard one again. Then I started thinking it was caused by taking triptans, although I did not use that many and definitely not enough for overuse. So for the next 3-4 years, I avoided triptans as much as I could but those extremely heavy episodes kept coming. More and more I started to ask what was going on and ask myself if this was really still migraine or something else was happening. While that was going on, a new symptom started to appear... my nose got congested and needed lots of handkerchief during those attacks and at the same time I felt the tears in my right eye. That was the moment where I started to think about CH but I thought that maybe it is just not that because it still takes more than 3 hours, it has a very slow onset (multiple hours to get to its maximum and I do not show the typical "cluster cycles". I asked my doctor then what was going on and he advised me to seek help from a specialized neurologist. After hearing my story he diagnosed me with both migraine and CH and gave me oxygen which helps me enormously. Now 8 year further, my migraines become more and more CH like but they keep many migraine characteristics as well... i see often now that during the attacks, the nausea and photophobia are not appearing so its only the brutal pain that is left and the entire thing is showing more and more a cyclic pattern (more concentrated between may and august and the rest of the year rather quiet). So I am now in a situation where I fulfill around 80 % of the criteria of both conditions. I will see how that evolves further. Thanks for reading my story and Best Regards ! siegfried
  5. Hello Lily, If possible you must give oxygen a try. I am one of those rare cases where the very serious migraine w/o aura that I am suffering from since a child has gradually morphed into CH over the last 8 years but with still some typical migraine characteristics (like every attack takes 12 hours to gradually build up to its maximum, then pull back to 50 % of the pain for a few hours and then increases again to maximum and so on). When at maximum I have all the typical CH symptoms but honestly I have never thought of CH until I visited a migraine/CH specialist neurologist. He diagnosed it as CH and prescribed me oxygen. It has really been a lifesaver for me and it helped me cut down the triptans to a very minimum. If I would not have gone to him, I would never have known that oxygen actually worked for me ! However, to get through the worst periods I take 120 mg veparamil which helps a lot as well. If you work with oxygen, you better take the habit to act fast. From the smallest onset of sensation you feel, run to the oxygen bottle and breath in/out for 15 min (15 l/min) as deep and as fast as you can. Its a laborious process ! After 15 min you should feel lightheaded and the affected side of the head should feel very relaxed and "open" and the sensation of pressure on the temple and behind the eye should be gone. That means it has worked. If you try it a few times and after 15 min there is no change and the migraine still comes through then oxygen will probably not work which is not a shame. At least from what I read about it, hyperbaric oxygen therapy is more suited for migraine and normobaric seems only to work for some migraine patients where some CH characteristics are already present. All the best ! siegfried
  6. Hi Mit12, From what i could read from your other posts in this forum I have exactly the same as you. With me migraine always start with an attack of mild intensity between 4 - 5 am. Always the same time. By the time I get up however, the headache is gone and I can function normal. But if around early afternoon I start to feel my right ear glowing and a slight pressure on my eye followed by slight dizziness and when the nausea and aversion for light start to kick in its time to go into a dark room in my bed and rest. But then the intensity is gradually increasing and increasing. The pain behind the eye and on the temple get so excruciating that it feels like someone is cutting with a glowing scalpel in these nerves around that area. The eye start to get red and I get a running nose. Stay in my bed has now become impossible and I get up and walking around very agitated. It happened a few time I passed out from the intensity of the pain. After an hour the pain goes away and in 50 % of the cases, the migraine also goes away but if it does not, such an attack can come again as long as the migraine takes (usually 48 hours). Now I always have used Zomig to abort the attacks and that has worked perfectly but I was taking Zomig too much for my liking and so I decided to visit a neurologist specialized in migraine in the University Hospital here in Belgium. After telling my story in all detail, he came back with an attestation that I was diagnosed with cluster headaches during migraine and the prescriptions for oxygen. I was very surprised because I have never considered CH. He told me that this is rare to have CH like this but that it is a known pathology. I have the two really linked together. In my case CH will never appear outside a migraine attack and on the other side, if I let my migraine untreated, cluster events will always appear. To my big surprise, the oxygen works like charm ! To be short, my Zomig use has gone from 4 pills a month on average to zero ! Oxygen seems to work best after the first morning attack has eased. If I can then take 15 min oxygen, its all gone. To compare both cluster headache and migraine, none of them is for the faint of heart. I fear cluster headache for its extreme pain which is very sharp and very concentrated on one point and extremely intense. Migraine is more a throbbing and pushing pain far less intense but migraine can one make so miserable and ill because the entire system is gradually shutting down and worse, if untreated, a migraine attack can take up to 72 hours without any relief in between.
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