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devonrex

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devonrex last won the day on June 20 2020

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  1. I will go from the worst attacks or 'wakers' at night to sleeping nights and 6 am kick me in the face and through the day ones, usually in cycles of them seeming to rotate forward through the clock. The one constant for ch is it is not consistent. I truly wish there were more headache clinics out there for everyone, once I got sent there, I was diagnosed and immediately felt 'validated' by a team of neuros whose specialty was headache disorders.
  2. LSD and Psilocibin tend to spend time in the 'brain fat' and occasionally will pop loose. This is a simplified explanation, but when that fat metabolizes or occasionally gets loose, it can cause a flashback the frequency and chance of it happening fades with time and not using. I am by no means an expert, this is simply what I had learned years back.
  3. Always been chronic, the frequency has simply changed for me, the fear seems part and parcel with ch, fear of the pain, fear of the next, fear it will be worse, fear when you get a longer break than normal because you think it will come back worse, fear a treatment will not work, fear it will then stop working. On and on they go, many of these are the same mind treadmills that you get with ptsd, I mean subjected to unimaginable pain for upwards of hours, to get a respite, knowing it is coming agai, sometimes with no rhyme or reason, sometimes fearing the simplest things could trigger.
  4. My neuro had said, at least for chronic, slight permanent droop, constricted pupil, reduced sensation, puffiness below the affected eye are all common, just never heard of a lump personally.
  5. Pretty accurate, in my estimation. Same sort of thing with my avatar/icon.
  6. Sounds like it has effects along the same lines as a gamma core but as mentioned, maybe not quite therapeutic levels. For me, the gamma core simply made the side of my face contract while I was using it.
  7. Started out at about 3-4 a week chronic with every 2 weeks give or take I would have a full blown 10. Eventually they got up to about one a day or night as it may be with give or take one a week being a meltdown. I had tried some of the first line treatments by then, eventually got on topiramate aka Topamax, they dropped back to about 2-3 a week with several weeks between full blown ones and the occasional week off. Then, I got and passed a kidney stone, took it to the doctor and they took me off topiramate because that is a known side effect of it. Within a week or so going off, they began hi
  8. My wife shattered her back and I mean blew apart t5, fractured all the spinous processes down her back, so she does know chronic pain. Which is helpful. We have come to a bit of an equilibrium, i'll ask for say essential oils on my temple area or she will ask if I want them, it does next to nothing except maybe the scent is slightly calming, but she feels like she helped and I let her. We both know the truth but it gives her some control or input into "helping" she also did a crapload of research and funny thinking now, Lamaze breathing can help during an attack, something she found. She will
  9. If when you are able to travel, I would recommend this doctor, she was part of the champ program here and was my neuro for over a year but she returned to Montreal. She is now at Polyclinique Centre-Ville Montreal. She specializes on headache disorders and has authored several papers Elizabeth Leroux MD, FRCPC
  10. I do seem to find weather changes where the barometer is moving a lot tend to more painful days. The weather here (Calgary alberta) has been mentioned as making it the migraine capital of Canada, we get chinooks and extreme and fast weather changes. That all being said, the human mind is wired to see and recognize patterns, even if none exist it will use confirmation bias to create a pattern. I still believe that it is a big factor regardless.
  11. I get it every year, without fail, because it makes sense and for a long time worked in a medical related field and I have never seen any correlation or causation to anything to do with my clusters.
  12. I did try it, it helped my joint pain and such but didn't touch my attacks. I am just day by day. Melatonin has helped a bit with getting some sleep.
  13. Have not done mm yet, exhausting/exhausted most legal options, reluctant to try something with jailtime attached and being honest with myself, kind of scared if they do not work kind of ends my saving it as a last resort to have before the end of my rope. O2 will take the edge off, combined with monster energy and occasionally opiates, will trim a screaming 10 to a pacing/rocking 9 or on a good day an 8. I do not suggest opiates as a first or even secondline medication, just when you get to a point nothing has done anything, something that does a little bit to take the edge off is a godsend.
  14. Lucky me, chronic refractory. Have not had a full 24 hour pain free day in 3 years. The only saving grace is '10' attacks come only a couple times a week.
  15. My regular duration is 2.5 hrs. 15 minutes to 1.5 hr break then back in to one, then sleep when they are in the low end of my daily rotation.
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