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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. Of all people we are the ‘different’ ones in many aspects. Drinking energy shots before sleeping or during the night to abort an attack ànd go back to sleep is not what many people can do or would advise. The reverse is also true, at least in my case, I can not have a daytime nap because it will definitely trigger the beast to wake up and have some fun. Yes, this really forces me to do something else and wait for the normal sleep cycle to begin. It’s what my sleep neuro advised me to do, as well as trying to avoid bright lights (especially with a lot of blue in it) during the day and night in
  2. My neuro advised me to first see a cardiologist and have a contra-indication of doing the cold showers because my intake of verapamil is quite high and the cold may have an adverse effect on my heart. If you’re not on verapamil, by all means step into your budgie smugglers and have that ice cold water bath
  3. You’re so right that the results have to come from the forums, as the results of the med trails are always statistical and most of the times not first hand by trail participants. I’ve been in the Aimovig trail in 2019 and Emgality trail in 2020. On both occasions trying to break my cycles as the meds (verapamil, naratriptan, sandomigran, prednisone, D3) I took were not sufficient anymore while the beast was jumping very ugly 8-14 times a day with kip 8-10 very often. I had 5 rounds of Aimovig and it did not break my cycle. It was only when I upped my verapamil from 600 to 720 that I noticed in
  4. 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
  5. And another Phase 2 trail on LSD. MindMed CorpUpdate 7.2.2020
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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),
  12. 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
  13. 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!
  14. 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
  15. 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
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