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devonrex last won the day on January 26

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About devonrex

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  1. Sadly, in an ER setting, having knowledge of what CH is, would simply help a nurse triage it lower. ER triages on the greatest threat to life, while the pain feels life ending and you may want to end yourself, the actual attack will not physically cause you to die thus, you are triage as low on the scale. That is why saying chest pain works, yes because the consequences of a heart episode can get horrible and fatal quickly. I am chronic have had my share of wrecking my throat screaming for a couple hours, I know the pain. That being said, not being jumped to the head of the line is
  2. I see a lot of good advice for treatments. Might I suggest a guided meditation app like headspace? While it does not do much for the pain and attacks, I have found it extremely useful in between attacks to calm the anxiety, the other shoe going to drop feel, the fear that we have all likely experienced waiting on the next.
  3. To be blunt, the couple of 'absolutes' I have seen in this thread are a bit disheartening. With just a quick search 02 is effective at total or partial aborts for 70-80% of patients, there are still patients, such as me, who get little to no relief from any flow rate of 100% o2. As for imitrex, it was 100% effective for me, for about 6 months, then I began getting 1 in 4 times that it failed to do anything, up to a point when it was about 2-3 in 4 that failed to work, so with the associated cost, other considerations I stopped using them. I am a refractory chronic ch sufferer with 5+ atta
  4. I am not sure about bp and blood ox levels, but breathing inadequately definitely will, so will things like asthma, hx of lung issues, smoking, allergies. The bp comment was simply that mine skyrockets in an attack, but could be because I tend to 'bear down' to try and deal with the pain, while also stifling vocalizations to more high pitched squeals or squeaks rather than screaming. You may also want to make sure the pulse ox is returning the proper pulse rate for you, check by much the same as breathing rate, measure pulse for 15 seconds then multiply by four, if it is not reading prope
  5. Sorry to see you back, but at least you are among those who know what you are going through (Relatively speaking as we each have our own tailor made beasts) I have decided pets, particularly cats should be part of a ch'ers coping kit. My devon is one of the only things during a hellish hit that can bring me some peace. Hopefully, all gets back on track for you fast.
  6. You may want to check your breathing rate, the easiest/standard is breaths in 15 seconds x 4. May also want to evaluate efficacy of those breaths, full deep normal, short and gasping. It does not take a large variation in breathing changes to affect pulse ox. I do find the bp odd, at least for me, I have had a full 10 while at the DR, they checked bp during that time (sadly, o2 rarely aborts for me, but will lower intensity) but my heart rate and bp were way high bp was abut 180-90 over 100/120 (normal is about 120/80) high heart rate combined with inadequate breathing can lower pulse ox quite
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. Pretty accurate, in my estimation. Same sort of thing with my avatar/icon.
  12. 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.
  13. 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
  14. 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
  15. 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
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