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Cast Iron

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Cast Iron last won the day on November 19

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  1. Yesterday I heard from my neuro that SUN is working on a 3mg auto injector next to the normal 6 mg. Might be a possibility for folks that now have to split the 6 mg auto injector manually. Keep you posted on when it becomes available, here in Europe-Holland. All the best
  2. Chronic and in cycle now for many months. I consider my cycle to be over when I can look strait into bright artificial lights without hurting my eye. In cycle I can look directly into the sun without eye pain, but not in artificial lights like car headlights on my cluster side. ATB
  3. In that respect I've made my way to the second level of hell, or possibly even further. My breakfast, lunch and dinner is consisting of verapamil, fravotriptan, sandomigran, paracoff, D3 regime to keep the Ch at bay. Agree that one should look for a good preventive other than the triptans. But you know, the beast behaves differently in every person, with different methods trying to keep it at bay. I am in a bad cycle now for 4 months, last month I've had 170 attacks, night and day. As another preventive I've had the GON injection (liquid prednisolone into the great occipital nerve),
  4. Hi Siegfried, is the remission period with or without medication, i mean can we be chronic in remission with medication that holds the beast at bay, or does it mean that remission is also without any medication? Alex
  5. 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!
  6. 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
  7. 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 a
  8. 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
  9. 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 ar
  10. 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 hitti
  11. 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
  12. 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
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