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Everything posted by devonrex

  1. 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.
  2. 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
  3. 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
  4. 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.
  5. 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
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. Pretty accurate, in my estimation. Same sort of thing with my avatar/icon.
  11. 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.
  12. 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
  13. 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
  14. 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
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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.
  21. 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
  22. 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.
  23. An M tank, at 2000 psi will last about 156 minutes at 20lpm. You can find o2 rate calculators for most smartphones. Used them when I worked as a medic.
  24. The bleeding is way out in left field. So is some of the lengths. Gut feeling is it could be a very bad sinus infection, the side changing, blood and heat relief all kind of lean me that way.
  25. I just did my loading dose of emgality a week ago, two auto injectors into the thighs. Having done self dhe injections and sumatriptan injections, I will tell you the injector hurts. So far no change whatsoever but wasn't holding out too much hope, as from my understanding it is amazing for migraine, useful for episodic and nearly useless for chronic, but was worth a try. So far no side effects, maybe a bit more irritable but that is it. I have been lucky as my city has "CHAMP" as a dedicated clinic. Calgary headache assessment and management program. Neuros all specializing in headache disord
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