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Cast Iron

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  1. Cast Iron

    New to this forum – Cast Iron until hit by CH

    Hello Batch, Yes I do feel fortunate to live here, we have a combination of very old cities and hyper modern, its what visitors and tourists really can value over here. We are getting close to spring and than we have the wonderful fields of tulips again which are really photogenic: Many thanks for the time you've spent replying, next week I have a doctors appointment to determine the baseline through the lab tests. I already found the nutrients and going to order them. As soon as I have the lab results I will chime in again. Best regards!
  2. Cast Iron

    Positional Headaches

    Hello SPP-Fan Welcome to this forum, although not good that you have found it as CH cluster headache is a serious thing if you have it. My first thoughts are to see if you have one or more of the following signs or symptoms: Excruciating pain that is generally situated in, behind or around one eye, but may radiate to other areas of your face, head and neck One-sided pain Restlessness Excessive tearing Redness of your eye on the affected side Stuffy or runny nose on the affected side Forehead or facial sweating on the affected side Pale skin (pallor) or flushing on your face Swelling around your eye on the affected side Drooping eyelid on the affected side Diagnoses of CH is done by eliminating possibilities while taking into regard the above symptoms. Especially the first and second may be a first indication for cluster headache, along with a one or more of the others. People experience sometimes different signs because CH can morph over the years, but as a starter you can see if the above applies. Seriously hope it is not CH and take care the next time you have sex.
  3. Cast Iron

    Lithium or Occipital nerve block

    FT..you may want to continue with the Emgality for a while more as the body needs to learn that the anti-CGRP fits the CGRP receptor and thus can block the binding of the CRGP to the receptor when the CGRP is released by the body. Some body's will learn this within a couple of weeks, for others it will take up to a couple of months. I've been on a similar med Aimovig for 5 months with no result -instead I went up to 170 a month-, while luckily for others it proved to be helpful after 3-6 months. My last resort is also lithium, but this is really scary stuff. If I would take it, my neuro advises to first start a tapper of prednison, slowly increase the lithium (have your blood monitored constantly), while also decreasing the verapamil until you reach an equilibrium (CH have reduced or more or less stable in number of attacks), and then increase lithium slowly further and lower the verapamil to zero. By then the prednison can be reduced to zero. The whole process may take quite some time and for a good reason as my neuro stressed that suddenly stopping verapamil and starting lithium generally gives very adverse effects. It may turn out that if this occurs, returning back to verapamil, even in high doses, does not give the same result as before. All the best
  4. Cast Iron

    New to this forum – Cast Iron until hit by CH

    No need to be sorry for anything, it is me to say in Dutch “Dank je wel”, for your answers and quibbles, they are brainfood I can only get from other clusterheads. I do agree with you that the parameters that induce and can abort CH are very different per person. Besides they can morph over time, without giving upfront notification in writing (hihi) that we need to adjust in accordance. That is why for me I have a constant mindfuck on what to do, and what not, what is sensible or not. Also part of the mindfuck is that I came to realise that my body is not able to do anymore what I used to be doing, or probably will not be able anymore in the near future. Luckily my QT in the periodic ECG is still looking good. I’ve reached a couple of times the point of desperation, but always thought in time that I have two young daughters. I will read up more on the D3. You have a good point on the higher flow rate. I do recognise the hyperventilating up to the point of passing out. I never actually realised that O2 probably behaves with me like all the other medicines I have taken, meaning that I need more because of my physical constitution. All the best
  5. Cast Iron

    New to this forum – Cast Iron until hit by CH

    Hi CHFather, Completely right that I have made choices, this is also due to ignorance/lack of knowledge on other possibilities. So its so good for me this forum exist, I signed up and now provides me a mirror. I’ll try to answer your remarks and suggestions to give a better view. Not using the ‘happy stuff’ with busting was a deliberate choice a long time ago, let me say, I’ve seen the very negative effects of alcohol and drugs up close and personal. When you say “If you have time off from attacks, you're not chronic”, does this mean that in the off period no medicines are taken/needed? From my point of view one can have a chronic condition, where on certain periods it inflames and medication is needed (like COPD). Could it for chronic well be possible that medication is needed constantly to prevent inflammation? For the redbull, especially caffeine counteracts with my sleeping disorder (also sugar for that matter). I have a second neurologist and diagnosed with OSAS, I stop breathing in my sleep every 3 minutes. To allow for some night rest, even though wearing MRA dental braces, I can not take any sugar and caffeine as this will give energy making me even sleep less than 5hrs a night. The O2 is well in order. I have big tanks and small ones for travelling, possibility to crank up to 25l/m, special mask and do apply the breathing techniques. Many thanks for the constructive feedback
  6. Cast Iron

    New to this forum – Cast Iron until hit by CH

    Hello Jon019. On the Suma, yes I do take the full shot every time. Let me give some background. I am a big guy, body and strenght of an ox. When I need to have local anesthesia my body breaks down a regular dose of say lidocaine within 15min where physicians normally count it will last 2hrs. So I always ask for 4 shots to make sure they can finish their work. The same with the sumatriptan, I need to have the 6mg, despite the big hammer every time, also because in high tides the frequency is so high it allows me to recuperate a little before the next one is hitting. Yes, you can question cause and effect/rebound, but I have to prevent I end up 2 or 3 times a day with a kip 10 attack. On the D3 it is not reluctance, for me this is the scary bit. I have more or less control over my current situation, or know what to expect. Suppose I would take the D3, if I want to know if it has an effect, I need to lower my meds to be sure. This is what scares the living jesus out of me, as I the past I’ve tried to lower but ended up close to 1gr of verap and 180 attacks a month. All the best
  7. Cast Iron

    New to this forum – Cast Iron until hit by CH

    Hi DallesDenny Thanks for the warm welcome. It is indeed ironic that I live in a country where we can legally shop for it. On the amgality I also have the impression that it works or not. Aimovig and Amgality work in the same way, tricking the system by binding to the receptor. For some it works for others not. I do have my hopes up high that Amgality uses just some other ingredients that are recognised by my body to make the receptor link possible. All the best
  8. Hi there! The last year I’ve been reading this forum and although sad of course for y’all still have a feeling of ‘coming-home’. Especially because I live at the other side of the ocean in small country the Netherlands (you know, tulips, windmills and amsterdam). Recent months I read some items on Verapamil, Sumatriptan, Aimovig, Amgality and thought it might be time to chime in and share my story and experiences. Clusterhead since 6 years, age 52, and although I only have one big cluster a year, my neurologist considers me to be chronic. I have built a daily medicine barrier currently using 720mg Verapamil, 3mg Sandomigran and 2.5mg Naratriptan. Because I am from the Netherlands with its beautiful dykes, the medicine barrier is like the dyke which prevents the waves from flowing over it. But in a cluster period the waves slam so hard and often, the dyke is just not high and strong enough. So the beast is always there, chronic, but in low tides constricted behind the barrier. My cluster periods last between 4 and 6 months, starting with one attack a day a couple of times per week, to 4-11 attacks a day during the month and then slowly fading away again. In the beginning of the cluster I use O2 to abort, but when the frequency and intensity is building I use the O2 for the small ones because the O2 cannot really abort it anymore, it will only postpone the unavoidable bigger attack lateron. I say the ‘small’ ones as I have classified my attacks in severity, small, medium, large, XL. So for small, in my book kip until 4ish, I mentally increase my pain tolerance levels, do breathing techniques and use O2. I read that redbull is sometimes used for its sugar and taurine, but this has an opposite effect on me. When O2 is just not enough anymore I am entering into the medium and large attacks, kip 5-9. Next to O2 I then use Sumatriptan as much as physically endurable, I do not restrict myself to the two injections a day prescribed, i use up to 5 a day. Normally they work within 10-15min. I inject them in my upper thigh, not in the fatty bits but in the muscles preferably close to the big blood vessels as the incubation is much faster. Note, I have a vast supply of Sumatriptan and can order as much as needed. This is covered by my medical insurance contrary to many other countries where this is limited or very limited (last year I used ~400 of them). If they do not work, I run into an XL and have to ride it out, kip 10 for 2-3hrs because Sumatriptan cannot be used twice within 2 hours. In the weeks I am at my peak, I use 60mg prednisolon daily for 5 days in addition trying to lower the number and severity. This gives some avail in those 5 days, but the effect is gone in the days I have to slowly reduce it to zero again. I read that others here are using prednisone too, my neurologist says there is a difference between prednisone and prednisolon, the last one being quicker and more effective. Referred to by others here, I also have a feeling that using Suma so often a day, may induce CH again. Not exactly know why this is, but not using Suma is not an option for me, because my beast is so strong and will attack when not contained. Furthermore my memory is often lacking me and have to ask my wife about simple things that happened in the past. Does anyone of you share the feeling that with every shot of Suma, a little part of the long term memory is vanishing? I have considered the D3 regime as for many here it shows a significant improvement over the use of medicines. My situation though is that I have tried a couple times in non-cluster periods to lower my Verap, but it turned out that this had a rapid adverse effect, starting a new cycle and ending up with a higher dose than before. For example lowered from 480 to 360, the CH came back and returning to 480 was not enough to prevent the CH, I had to up it to 600 to have the same effect. This makes me very hesitant to start lowering my meds and taking the D3 as this could result in a massive cycle again. Taking the D3 and maintaining my current doses would be trivial because I would not know what is actually working or not. Last year I tried Aimovig. My neurologist said I had to reduce my verapamil from 840 to 480 a day to be qualified to receive the Aimovig injections, two injections of 120mg per month. As abortive I could still use the O2 or Suma and use the Sandomigran and Naratriptan. We were kinda hoping it would work also for me, because european trails showed for some clusterheads the body could ‘learn’ that the anti-CGRP fits the CGRP receptor. It blocks the binding of the CRGP to the receptor when the CGRP is released by the body (due to unknown reasons still), so the CH is not induced. For some the body learned this within a couple of weeks, or months. But not for me, after 5 months of using Aimovig the number and severity of the attacks was so high (10/day) I had to drop out and return to high doses of verapamil to make life bearable again. European neurologists believe that the Aimovig trail dose 240mg/month for CH may not be high enough. I am thus hoping that Amgality in Europe will get the required approvals (FDA on your side of the ocean), although I read here that different dose are being applied with different outcomes. Are there any studies available yet? When it gets the approvals here, its not said it will become available for patients in the Netherlands. We’ve seen this with Aimovig. The price of 600euro per injection is not covered by the national medical insurance system. One would say that if you can afford it privately, then just buy it, but there is a social ruling here saying that if the poor cannot have it for free under the national medical insurance system, the financially capable people cannot buy it either. In the meantime one could opt for busting, paddo’s, coke (yes really, a fellow clusterhead went from 10 attacks a day to only one mild one if he sniffs a line of coke in the morning). But there are two things: a long time ago I swore to myself never to take any alcohol and drugs, and, my neurologist says that compared to others in his patient group I am in the ‘premier league’ of CH suffers where meds are the only viable option. Speaking of which I have tried alternative therapies like acupuncture, which are not working for me either. As a last resort, my neurologist is inclined to consider lithium should I really want to replace the Verap and the side effects of it (no stamina, short of breath, fatigue, dental problems – because verap is a calcium blocker, veins need calcium to be able to expand). But the side effects of lithium are far worse I understand and could prevent me from having a professional job. Also, it takes quite some time to get the correct dose of lithium, and requires regular blood controls, not to say the least internal organs do not really like a substance from the periodic system ‘LI’, it remains a heavy metal. As for my nickname, from my teenage years my brother and I could jump higher, run faster, work harder and longer, bruises, cuts or wounds would heal much quicker than with others. We were made from ‘cast-iron’, and the odd thing with this is that when it shows a crack it cannot be repaired, it needs to be melted and poured again in the cast. So my current life balance is to avoid that ‘point of no repair’, disregard what it takes in terms of my current medicines and changes to my life style. I cannot let the Beast win and have to await the next generation of medicines to become available, prescribed by MD’s and covered by the insurance, because the alternative it walking into a deserted field with a shotgun. Maybe this sounds all too familiar, maybe there is some more information you can use.
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