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Showing content with the highest reputation on 11/24/2021 in Posts

  1. YES - an actual ray of hope.
    2 points
  2. The day continued w big hit warnings like when I first got CH. so I didn’t hold out on the Oxygen. So far I’d have to say I see some changes that are a good sign. No luck finding a doc, even reached out to an anesthesiologist in Orlando I used to work w. Unfortunately he didn’t know of any one... I have an appointment fit the first w a headache and pain guy that did me a favor/ professional curtesy and let me make an appointment without insurance. Don’t have high expectations but who knows. Office staff did tell him about the ketamine... at this point I’m not sure if I should fly somewhere to see a doc that does work w ketamine and hope they will do refills or telemedicine in between in person visits. Which my former pain doc won’t do. It would only work if they would. Fingers crossed a few more infusions do the trick. The CRNA did tell me at my first infusion that the chronic pain protocol is 3 days of 3hr infusions. I’m going to talk to her at/ before the next infusion and see what she thinks. Have to talk to my guardian angel as well...
    2 points
  3. Love you too Tony!! Yes, I am doing well this fall. I think that the lack of discussion regarding ADHD meds might be due to the fact that so many adults don't have them and never got them, even if they needed them! But, those days are changing. They are definitely in the mix for some. I suspect they will not block. I was concerned regarding serotonin, but that is put to rest now. I would definitely get her on the D3 Regimen. Now! Nothing but good for almost all humans. Perhaps the system there will require time to get the blood work, but she can start the regimen before the blood work. She might want to start with seeds to test the waters with no trip involved. Sort of ease into the busting part. Not sure if Valium or other such for anxiety is easily available, but it can be a comfort to have one on hand. It will not adversely affect her bust either. Hugs!!
    2 points
  4. Here's hoping the strangeness is a sign the infusions have Mr. McBeastBerry USA on the run! Contacting the Dallas Cowboys cheerleaders now.
    2 points
  5. Really need a bit of this guy on here
    2 points
  6. As your "all of our worst nightmares" level of CH has stubbornly persisted, at least these not as bad attacks following the second infusion do come across as a possible ray of hope. I don't suppose a high school football cheerleading squad in the parking lot outside the clinic chanting "Let's Go K Hole!", "Let's Go K Hole!" and performing inspiring acrobatics while you're getting an infusion would be realistically feasible to arrange, but count me as a member of a virtual squad cheering you on. Rustling up some pom poms now.
    2 points
  7. As I expected, the CGRP isn't as efficacious as touted. By comparison to the tried but true Toprimate, it does not fair any better. If not familiar with Meta-analysis you are applying quantitative epidemiological studies that assess results from prior case studies and clinical trials. In other words, you can't rely on a single study or trial, but when you combine multiple sources of data it generally tells all. Further, this isn't ghostwritten or funded by the pharmaceutical industry, and it was published through Springer. It is based by a reputable department of neurology in Germany (a good start), as the government is less in bed with the drug regulators. The FDA is not the watchdog that you think it is, far from it. While cronyism exists overseas, it occurs far less, and there is considerable more scrutiny. The point, this carries a lot of weight. From Indirect Comparison of Toprimate and Monoclonal Antibodies Against CGRP or It's Receptor for the Prophylaxis of Episodic Migraine: A Systematic Review With Meta-Analysis it does indicate that most can never reach the required 100mg of toprimate because of side effects that lead to discontinuation, but I'm telling you to stick with it, it is a miracle. If you set aside that issue, there isn't a difference. https://link.springer.com/content/pdf/10.1007/s40263-021-00834-9.pdf Next, I not only tinkered with “Dopamax/Stupamax/noassamax” I added clinically proven nutraceuticals to counter the infamous stupor and known 20% decline in cognition. Those are L-Theanine, L-Tyrosine, Phosphatidylserine (PS), Huperzia, and GABA. The only downside (for me) is that you turn into a manorexic, at this rate 70 inches and 140 pounds possibly 135 pounds seems quite realistic. I don't see why the ladies aren't flocking in droves paying millions for it. Some lose over 100 pounds. Hope this helped.
    1 point
  8. Thanks @spiny - I love you Here in Finland the brand name is Concerta. I only had a very unsure assumption that it might not block or interfere but did not think of serotonin syndrome. In our language there is very, very little posts or discussion about ADHD meds and busting. I even thought are there less ADD/ADHD among clusterheads than among general population? Luckily, seeds can be obtained legally over here. Batch regimen is also in consideration. Her daughter is 15. I hope you are doing well !
    1 point
  9. How about cowboy cheer leaders. Lol last night I only had 2 strange CH attacks while sleeping. Strange in the sense that they were like extended warnings of a big hit coming but I used oxygen to abort... going to call Apria today and see if they will swap out tanks.... fingers crossed they don’t give me a hard time... best wishes to all happy turkey day!!!
    1 point
  10. It is a biologic, or CGRP showing promise in migraine reduction both episodic and chronic, but I am speculative. Many I talked to tried Emgality when that was all the hype and that failed to deliver. To be fair, it appears case-by-case, and while one monoclonal may work great for some, may fail to work for others. For example, according to trials fremanezumab-vfrm is a poor performer, I had decent results, and better than average with botulinum toxin. As expected, I have this bizarre problem of developing tolerances and it stopped working. Here, these may help you: The CGRP Receptor: What Neurologists Need to Know https://www.scienceofmigraine.com/-/media/Themes/Amgen/ScienceOfMigraine/ScienceOfMigraine/documents/cgrp-receptor-what-neurologists-need-to-know.pdf The CGRP Receptor in Migraine https://www.scienceofmigraine.com/-/media/Themes/Amgen/ScienceOfMigraine/ScienceOfMigraine/documents/cgrp-receptor-migraine.pdf Monoclonal Antibodies and Small-Molecule Drugs: What General Neurologists Need to Know https://www.scienceofmigraine.com/-/media/Themes/Amgen/ScienceOfMigraine/ScienceOfMigraine/documents/monoclonal-antibodies-small-molecule-drugs-neurologists.pdf Characteristics of mAbs and small molecules https://www.scienceofmigraine.com/-/media/Themes/Amgen/ScienceOfMigraine/ScienceOfMigraine/documents/characteristics-therapeutic-mabs-small-molecules.pdf Eptinezumab: A calcitonin-gene-related peptide monoclonal antibody infusion for migraine prevention https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8511911/pdf/10.1177_20503121211050186.pdf From Neurology Journals (prominent journal) it is showing a significant reduction. I'm still a skeptic, most major medical journals are ghostwritten, paid for by the pharmaceutical industry, and it is about impossible to separate fact from fiction. Efficacy and Safety of eptinezumab with Chronic Migraine https://n.neurology.org/content/neurology/94/13/e1365.full.pdf Different Dosages regimens of Eptinezumab for the treatment of Migraine: a meta-analysis from randomized control trials https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-021-01220-y.pdf Safety and Tolerability of Eptinezumab in patients with migraine: a pooled analysis of 5 clinical trials (this is the shit that I pay attention to) https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-021-01227-5.pdf
    1 point
  11. Was 1 of the 250000 that was at knebworth in August 1996 watching oasis play was best concert I've ever been to !!!!!
    1 point
  12. Try different breathing with mask . Try hyper - ventilating or try standing when using your o2 . Empty your lungs b4 you start on your o2 . Don't give up on it yet you will find the rite way to use it with each attack I have to switch my breathing with my attacks
    1 point
  13. Well, to be fair, he did learn a thing or two from Charlie don't you know. And his dad did run whiskey in a big black dodge.
    1 point
  14. I don't take anything anymore aside from the verapamil and D3 reg. I use to use a nasal triptan but I do believe that it kept me in cycle this last round much longer. Shadowing is not a warning for me as I'm always shadowing (every day even out of cycle). It's just a norm for me to have a good deal of discomfort on the rt temple but I'll take it over the thunder. My warnings are the random spikes (same spikes as I experience with a CH just not in every 2 to 3 second succession). I made the mistake of thinking that I was going to go full blown this last time and took the spray, boy was that a mistake...my normal 1 to 1 and 1/2 month cycle turned into 3 and a few.. The D3 reg really has helped with the intensity and while it still hurts like an MF I can at least stop pacing and rocking back and forth..
    1 point
  15. I love these guys. My buddy and I crashed a party once after they played in Michigan and Martin was there. Was fairly epic but I was too scared to talk to him since I was not supposed to be there :p
    1 point
  16. In the USA it is called Ritilin and used for ADD and ADHD. The following is what I found regarding it: https://www.accessdata.fda.gov/drugsatfda_docs/label/2013/021284s020lbl.pdf The sytem will not allow me to post a section of this article for you, but on page one, it states that it affects Dopamine and Norephinephrine. As you know Tony, we are not doctors! But it does not seem to be a concern for Serotonin Syndrome. As to whether it will still work? I would think so, but again, not a doctor or chemist. Nor can I say whether it will react in another way with busting materials. Can they get seeds? How old is the daughter?
    1 point
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