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Cast Iron

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Cast Iron last won the day on November 19 2020

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  1. Cast Iron


    @kat_92 Fully understand that. The Aimovig is in the same order as Emgality here in the Netherlands, round 620 euro per shot. It is not covered by insurance though, so for me it would break the bank. I am chronic too and nothing really helps to get me out of cycle, but if it had been successful, i would seriously consider this, but both weren't. Hope you have PF days Alex
  2. And another Phase 2 trail on LSD. MindMed CorpUpdate 7.2.2020
  3. Cast Iron


    Hi Kat, I was also in cycle when I tried Aimovig without any relief, but also without any side effects. This year I tried Emgality, again in full cycle, to no avail/side effects, just like Pebbles. These anti-CGRP meds may not work, or maybe are not strong enough to cancel out a cycle, but from what I read and hear is that it is intended as an preventive med. While I was in cycle my neuro and I actually hoped it could also work as an abortive to get me out of cycle, but in hindsight we both believe it is not designed that way. In the trail groups I was in, 4 out of 10 experienced the rea
  4. Hi Julie, Can you share some light on the signal pathway, as my understanding is that the enzymes in Emgality bond with the CGRP and therefore prevent that the CGRP can connect to the receptor causing/triggering the attack. Curious to know as Emgality did not work for me, nor did Aimovig. Alex
  5. It was about a year and a half ago that I met the ‘kid’ on the video during a patient day in the neurological centre. Although his young age I was surprised how much he already knows about CH, but also that he was frank and open about the things science does not know yet. He said that O2 really helps, but they just do not know why?, is it because of the cold airflow up the nose, or that there is somewhere in our system a ‘switch’ that signals that enough O2 is in our blood and that the blood vessels can be contracted again. Anyway, they would like to start conducting scientific studies i
  6. 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
  7. 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
  8. 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),
  9. 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
  10. 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!
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
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