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Showing content with the highest reputation since 02/21/2020 in Posts

  1. 3 points
    jon019

    Good Neuro in Dayton OH Area

    .....fixed it for you..........................
  2. 3 points
    Batch

    Emgality and CCH - bummer trial results

    For 2019, the 30-day efficacy jumped to over 90% of CHers starting this regimen experiencing a significant reduction in CH frequency from a mean of 21 CH/week down to a mean of 4 CH/week. Better yet, over 65% of CHers starting this regimen experienced a lasting cessation of CH in the first 30 days. I attribute this increase in efficacy to the switch to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3. That's the only thing that's changed since July of 2018. I know the medical evidence purists will say an open label observational study rates a low level of medical evidence. To that I say, this is not your every-day average observational study. It's been running for over 8 years with over 320 participants and the year-over-year 30-day efficacy has remained constant at ≥80% for a favorable response and ≥50% for a lasting complete cessation of CH in the first 30 days. Moreover the generalizability of these results is very good as participants have come from 35 different countries around the world. That's not to mention all the health benefits made possible by the anti-inflammatory regimen at a cost of ~ 50 cents/day or $15/month USD. The Emgality cost is $550/month and it carries some onerous adverse side effects. Bottom line... The Anti-CGRP mAbs are never going to work as they cannot pass through the blood brain barrier to reach the site of action in neuronal nuclei within the trigeminal ganglia where CGRP is expressed. At best all the Anti-CGRP mAbs can do in lower the CGRP serum concentration. Here's the math and molecular biology behind this statement. These mAbs have a molecular mass of 150 kDa (150,000 Daltons) but the fenestration (windows) through the BBB have a maximum aperture of 400 Da. That makes the monoclonal antibodies 375 time too big to pass through the BBB windows. A molecule of vitamin D3 has a molecular mass of 385 Da so it passes readily through the BBB and into neuronal nuclei to do its thing through genetic expression to down-regulate (decrease) the expression of CGRP, SP, VIP and PACAP. The Anti-CGRP mAbs only react to CGRP.
  3. 1 point
    MaxHead

    Good Neuro in Dayton OH Area

    I'm not sure where she ended up, but Dr. Starla Wise was my neurologist at Wake Forest Baptist Hospital in Winston-Salem, NC. She just relocated two weeks ago to Ohio and she was considering offers from the University of Cincinnati and Wright State. She was fantastic with cluster headache treatment options. Very open to non-traditional therapies but also very smart in advising you regarding risk/reward. She is a bulldog for you if she knows you are trying everything you can to get better. She went to war with BCBS of NC and got me approved for Emgality for Cluster (sadly I was chronic by the time they approved it and it ultimately didn't help me). She also went before the board at WFBH and got approval for me to try self-administered in-home SPG nerve blocks (first patient ever approved for that at WFBH) which was no small feat. My wife and I are still incredibly sad she left but WFBH has another neurologist with Cluster specialty (actually helped trained Dr. Wise) and they have other staff that also work with Cluster. But we will always be grateful to Dr. Wise for all she did for me! I recommend her without hesitation because I know how difficult finding someone who understands Cluster Headache can be. She is fantastic. Good luck whoever you find.
  4. 1 point
    Cannabeme

    CH and Migraines

    CBD oil works for migraine, but it works better before you have an episode rather than during you have an episode. I used to have migraines usually once or twice a month and then they would last for about 3 to 4 days, but now, I take CBD Harlequin Feminized, 2 drops daily under my tongue empty stomach in the morning, and I am free of these migraine pains.
  5. 1 point
    igdc

    CH and Migraines

    For those of you who also have chronic migraine, do you find that your migraines get worse and/or more frequent during a CH cycle? I seem to be tapering down from my CH cycle, and it occurred to me that I've had fewer migraines (more like my normal number) in the last month. I asked my doctor and she said that her patients with both often see an increase in the migraines during a CH cycle. While miserable for us the oh-so-lucky ones, that's kinda interesting. Curious if others here have experienced the same, and if you've seen anything that explains that. Thanks.
  6. 1 point
    It's now been another 10 days since my first post and I thought I'd update on my experience thus far as it's always nicer when a thread like this can have a firm line drawn under it. In those 10 days if anything I've seen a slight worsening of the bout again - so anything the TENS was doing, it was not a long-term solution. It does still provide relief from shadows during the sessions but the nighttime attacks have returned slowly. I also busted again last Friday night and seen little improvement, but it's worth noting because I was not performing this as a TENS-only exercise. My final conclusion is that, like many things I've tried, the TENS provided some intermittent relief but is not something to get excited about. Due to the safety concerns raised by other members I can't recommend it.
  7. 1 point
    LennyC

    Lithium or Occipital nerve block

    40 lpm is a really quick breath, if you want to use positive pressure by pressing the button, it’s not too much pressure, 160 at full pressure is overwhelming, no reason to pay extra for added pressure you won’t use
  8. 1 point
    MoxieGirl

    CH and Migraines

    Hi, Unfortunately I've not been able to isolate that kind of correlation. But, I do routinely have 300-500 headaches, migraines and clusters a year. Thankfully, busting is good for migraines too, btw. I was once in day 2 of a week long migraine when I got a really bad cluster headache. I think the cluster scared the migraine away, because afterwards I was utterly pain free for about 2 hours. Then the migraine returned. Mox
  9. 1 point
    Jamesmsv

    CH and Migraines

    I definitely see some sort of link between CH and migraines. I grew up suffering migraines in my teens and twenties, then when clusters came on (when I hit 30) the migraines stopped. A couple of years ago I started busting and had no CH for 2 years, but did have a few migraines. Aside from noticing that, I'm afraid I hit a dead end when wondering what to do with that information.
  10. 1 point
    CHfather

    Emgality and CCH - bummer trial results

    I guess we kind of knew this, but it's still sad to me to see it confirmed. https://www.docguide.com/phase-3-randomized-placebo-controlled-study-galcanezumab-patients-chronic-cluster-headache-results-3?tsid=5 Phase 3 randomized, placebo-controlled study of galcanezumab in patients with chronic cluster headache: Results from 3-month double-blind treatment; Dodick D, Goadsby P, Lucas C, Jensen R, Bardos J, Martinez J, Zhou C, Aurora S, Yang J, Conley R, Oakes T; Cephalalgia 333102420905321 (Feb 2020) OBJECTIVE To report efficacy and safety of galcanezumab in adults with chronic cluster headache. BACKGROUND Galcanezumab is a humanized monoclonal antibody that binds to calcitonin gene-related peptide and inhibits its biological activity. METHODS This study comprised a prospective baseline period, a 12-week double-blind, placebo-controlled treatment period, and a 52-week open-label period. Up to six protocol-specified concomitant preventive medications were allowed if patients were on a stable dose for 2 months prior to the prospective baseline period. Patients were randomized 1:1 to monthly subcutaneous galcanezumab (300 mg) or placebo. The primary endpoint was overall mean change from baseline in weekly attack frequency with galcanezumab compared to placebo. Key secondary endpoints were ≥50% response rate and percentage of patients meeting sustained response. Results from the double-blind treatment period are reported. RESULTS A total of 237 patients were randomized and treated (120 placebo; 117 galcanezumab). At baseline, the mean age was 45 years and 63% were using ≥1 preventive drug. The primary endpoint was not met; mean change in weekly attack frequency was -4.6 placebo versus -5.4 galcanezumab ( p  = 0.334). Key secondary endpoints also were not met. Injection site-related treatment-emergent adverse events were more common in the galcanezumab than the placebo group, with significantly more injection site erythema. CONCLUSION Treatment with galcanezumab 300 mg did not achieve its primary and key secondary endpoints. This study underscores the potential distinct biology of cCH as well as the significant unmet need for safe, effective, and well-tolerated preventive treatment. The safety profile of galcanezumab in cCH is consistent with that observed in trials of episodic CH and migraine.
  11. 1 point
    kat_92

    CH and Migraines

    @igdc hey! This is interesting. I had the same situation. There were days where I didn’t have any ch type pain behind my eye (usual) but I had a migraine so bad I couldn’t even move my head. I’m not sure if it was an actual migraine or just an all over headache from all the meds I was trying. kat
  12. 1 point
    LennyC

    Lithium or Occipital nerve block

    I did lithium for several years - went from 2 episodes a year down to one, and the episode was shorter and less intense. This was several years ago, and after I found out I was allergic to verapamil. There were very few alternatives at the time, so I went with it, but I also believe that it harmed my kidneys long term - my eGFR hovers around 60 to this day - at some point I tapered off to do a bust, and never went back. I no longer use triptans either - just some Stacker B12 energy shot (cheaper than 5 hr energy, available at WalMart) and oxygen, where I invested in a demand valve regulator, which I think works better, but is several hundred dollars (I use a welding regulator to go to 50 lpm, and the demand valve takes it to 40 lpm: http://www.porterinstrument.com/product/dental/Porter-O-Two I don't use the quick connect, but have it screwed into a welding regulator. I have also been enjoying Reishi mushroom tea after my oxygen, with a little stevia, as the oxygen is very drying. Reishi is not a psychedelic, but I find it relaxing. I've also had multiple occipital nerve blocks, temporal nerve blocks, botox - none of it ever really helped long term. The only nerve block I haven't tried is sphenopalatine, which creeps me out a bit, but I may get there eventually. I'm currently messing around with Aimovig and Ubrelvy. The beast broke thru the Aimovig 70mg which had me headache free for a year and a half, so I'm going to take the Ubrelvy at night for 10 nights straight to see if it breaks my episode, and follow that with the 140 mg dose of Aimovig. Had tried 240 of Emgality, after a dexamethasone taper, but it did nothing, and the HAs continued.
  13. 1 point
    mark m

    dental work triggers cluster?

    It appears they are slowly going away, I am having what I think is called shadow pains but no full on attacks now. Last night I was not woken up at all in pain. I am also on the last day of the antibiotics. I have not needed imitrex since Tuesday night. As for the emgality I have not had a migraine since the day after I took the emgality and my normal (for me) cluster register at a 10 + in painlevel but none reached beyond a 5 this time around also I normally have 4 or 5 per 24 hour period this time I never had more then 2. SO I may be a bit quick on the good for the emgality but so far so good. I still have slight constant pressure type pain daily but I have had thet for many years. My neurologist told me I should be the poster child for headaches. He is a great doctor for us with headaches of any kind. He even gave me his private email to send him things from research I find on headaches. Again thank you all very much for the help. If there is a way to donate to the site please let me know.
  14. 1 point
    @Jamesmsv please take the time to read about the studies on this forum clusterbusters funded on psilocybin & BOL.
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