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devonrex last won the day on June 20

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About devonrex

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  1. devonrex

    Mindset Advice

    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. For me, trying to focus on the now, helps in between attacks, guided meditation helps calm me, even the mindset that this could be as good as it gets helps in some ways then you turn to coping with what it is right now and not what it might be later.
  2. devonrex

    Permanent Eye Swelling/ Problems

    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.
  3. Pretty accurate, in my estimation. Same sort of thing with my avatar/icon.
  4. devonrex

    Halyard mini stim

    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.
  5. 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 hitting me 3-4-5-6 times a day or more, with a full on or near 10 every couple days and the rest in the 7+ range, nothing has done much since, that was 5 yewars ago.
  6. 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 also get my o2 ready, grab me a pill or ask, I just have to nod or shake my head, gives her a sense of helping, feeling not so helpless. That is one thing she has conveyed to me, how horrible it is to feel helpless to do anything, some of her fear and frustration stems from that. You have to accept she will never truly understand, she will have to simply believe you. Edit I have found meditation, guided, helps in between to stave off those "omg what is the next going to be" Headspace, on any device is a great app.
  7. devonrex

    Cluster and Weather correlation

    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
  8. devonrex

    Cluster and Weather correlation

    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.
  9. devonrex

    Flu Shot?

    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.
  10. devonrex

    Question about D3 + other

    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.
  11. devonrex

    Question about D3 + other

    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.
  12. devonrex

    Question about D3 + other

    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.
  13. devonrex

    Question about D3 + other

    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.
  14. devonrex

    Question about D3 + other

    If you are Canadian, you are likely deficient, most times it is hard to get a D bloodtest here, but can disguise the request in a kidney function test iirc, that's what had to happen for me. As to ergotamine, I myself had a DHE infusion regimen, couple days in hospital for iv then home injections for a couple of weeks (Di-hydro-ergotamine) for me, it did affect them, but more 'scrambled' them a bit, affected duration, timing and to some degree intensity, one of the major side effects I had with it was a feeling/sense of euphoria or happiness/optimism, some injection site pain and irritation. I hope the regimen works for you, sadly I am one of those it showed nothing for me save some body aches got a bit better. If you are anywhere near or able to get to Calgary, in the south health campus there is a dedicated department for headache disorders, staffed by several neurologists specializing in headache disorders.
  15. devonrex

    Constantly drooping eye

    I have the same, drooping eye outside of an attack, diminished sensory around the affected eye/forehead/temple, constricted pupil, puffiness and darker circling under/around that eye. All things my neuro, who specialized in clusters, said are normal for chronic and bouts of episodic and most should fade if/when the clusters cut back or are gone for a while. I do not have constant pain, just occasional shadows when not having an attack.