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ClusterBusters

LennyC

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Everything posted by LennyC

  1. 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
  2. LennyC

    Lithium or Occipital nerve block

    Here's a good listing: https://www.ebay.com/itm/Allied-Healthcare-Demand-Resuscitator-Valve/173791497315?_trkparms=aid%3D555018%26algo%3DPL.SIM%26ao%3D2%26asc%3D20160908110712%26meid%3Ddcd3aa58f668478185fd35fa8c4ed705%26pid%3D100677%26rk%3D1%26rkt%3D30%26mehot%3Dnone%26sd%3D192499863285%26itm%3D173791497315%26pmt%3D1%26noa%3D0%26pg%3D2386202%26algv%3DSimplAMLv5PairwiseWeb&_trksid=p2386202.c100677.m4598 Make sure you get the 40 lpm one, not the 160 lpm - you can get it with or without the hose, if you ant a really long hose, I suppose you can get it separately
  3. LennyC

    Lithium or Occipital nerve block

    Brain on Fire -- AVN (Avascular Necrosis) is a constant conversation with my neuro, as over the years, I have done many steroid tapers. Thank you for the reminder.
  4. LennyC

    Lithium or Occipital nerve block

    I found it on ebay -- but I don't think you'd need a prescription -- heres one on ebay right now: https://www.ebay.com/i/192499863285?chn=ps&norover=1&mkevt=1&mkrid=711-117182-37290-0&mkcid=2&itemid=192499863285&targetid=872074354682&device=c&mktype=pla&googleloc=9009566&poi=&campaignid=9338046419&mkgroupid=103102861148&rlsatarget=pla-872074354682&abcId=1139336&merchantid=112179476&gclid=EAIaIQobChMI4PjvjLzq5wIVCRgMCh0w4wQWEAkYASABEgKwwfD_BwE In fact, there's a bunch on ebay if you just search demand valve --
  5. 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.
  6. LennyC

    Emgality for episodic

    Aging out or not, it's possible that one branded cgrp agent may work better than another for a specific patient - so if Emgality didnt work, try Aimovig
  7. LennyC

    Emgality for episodic

    I've been on the Amgen version, Aimovig, since August of 2018, I had previously done 2 rounds of dexamethasone in the summer of 2018, finally busted my episode with a few rounds of MM - so I technically started the Aimovig while not in episode. One 70mg injection per month. I've been headache free for well over a year. I'll turn 60 this month, had been dealing with the beast for about 25 years. I also think I might be aging out, so that might have something to do with it. Personally, I think the cgrp inhibitors are better as a preventative, possibly not strong enough to break a full-on episode. Also, if one doesn't work, try another maker - there may be slight differences between the brands. Best wishes.
  8. If you get to the third level of what she recommends, it's definitely keto -
  9. LennyC

    OHSU Psilocybin Study?

    Go to the Theory and implementation board, lots of instructions there
  10. So I started my episode around mid-July, quickly ramped up to 4x hits a day, avoided triptans as much as possible with O2 and 5hr Energies - go to be a bit too much, started a dexamethasone taper a little over 2 weeks ago, have 3 days left of 4 mgs a day - no headaches while on dex. My neuro got me signed up for new Amgen CGRP monoclonal inhibitor, took my first 70 mg dose this morning. In the past, sometimes the dex taper broke my episode, but sometimes not. 2 years ago, I used MM to do it, working on getting some more if possible in case all this new stuff doesn't work. I'll keep y'all in the loop. The injection itself was easy, way less painful than Sumatriptan injection.
  11. LennyC

    Aimovig, new CGRP inhibitor

    Just an update, still headache free. There are now three different MABs available for the CGRP pathway - Aimovig, Emgality, and Ajovy. If you haven't tried one yet, please do. It might be a life changer. My 2 cents, I'm not sure if it would break a cycle, so if you are in the throes of a major cycle, I'd start a steroid taper and the MAB at the same time to break/prophylax the cluster episode.
  12. I've been keto on and off for many years, I believe that it definitely helps. If anybody want to read an easy to follow version, read the Wahls Protocol by Terry Wahls -
  13. LennyC

    Aimovig, new CGRP inhibitor

    So I've been headache free since I started this drug five months ago. If you can try it, I say go for it. Best of luck. Lenny
  14. LennyC

    Aimovig, new CGRP inhibitor

    So it's been about 2 weeks since my Aimovig injection, and about 11 days since I last took any steroids. I've been basically HA free, except for one weird thing yesterday. I felt like I was about to get hit - kip 2 ish - and I slammed a 5hr energy, which is my typical protocol. It got a little worse, maybe kip 3/4, and then leveled off, didn't go after the O2 since I was driving. after about 1/2 hour, I noticed my left eye tearing (HAs always on my left side). Usually I don't get the other symptoms (eye tear, nose stuffy, tooth pain, etc.) unless my HA gets to a kip 6/7. I wonder whether the Aimovig blocking CGRP kept the pain down, but the collateral symptoms came anyway. Weird, like I said. I also revived my ketogenic diet a few days ago, and even my shadows are gone. Not that I'm going to have any red wine anytime soon -------
  15. LennyC

    Aimovig, new CGRP inhibitor

    If I can get my cycle to quit, I'll do whatever out-of-episode prophylaxis is available - I've burned through almost everything else. Over the past 20 years, I've been on Topamax, Depakote, Keppra, Verapamil, Lithium, Lamotrigine, Lacosamide, and Oxcarbazepine. I've done 1 g Depacon Infusions with Solumedrol. I did Botox every 3 months for 1.5 years. I've done occipital and temporal nerve blocks. The beast always returned. I recently has about a 2 year break - on zero drugs - after a MM bust and having a little left over for every 2 month boost x 4 rounds. Which brings us to now - I have excellent insurance, and the Aimovig Ally program will keep my costs down for at least a year - so if I don't see any adverse events from doing the monthly shots, I'll keep doing them until the HAs return, then re-evaluate. If my episode doesn't break from the dex, I'll be busting again. As to the mechanism of action of the CGRP inhibitor - it is supposed to reduce number of hits and intensity. CGRP is a "messenger" type neural chemical, whose message is typically "pain". It's one of three secondary chemicals that intensify migraine pain, after the activation of the serotonergic receptors at the outset of the headache. It's entirely possible that this mechanism will have more relevance to chronic cluster than episodic, but we'll see. As to the cost - nobody should be paying $7000/year for this or any drug. If you have any sort of commercial insurance, there is co-pay assistance through Amgen. If you don't have insurance, you should apply for full-on patient assistance programs. Paying full cash price for branded drugs can be avoided most of the time. Start with pparx.org if you need help. Lenny
  16. LennyC

    Any new treatments

    Amgen's new CGRP inhibitor Aimovig, a monoclonal antibody, should be available, and has had some success in cluster. Talk to your neurologist.
  17. LennyC

    Help with M tank regulators

    I use a welding regulator, but I've also had the good fortune to pick up 2 demand valves on eBay over the years - one for the car and one for the house, both hooked up to M-90 tanks I get from Lincare -
  18. LennyC

    0-25 Regulator and Demand Valve

    The cushy mask. https://www.medexsupply.com/ems-supplies-airway-management-resuscitation-masks-allied-healthcare-reusable-cuffed-mask-adult-size-4-x_pid-73649.html?pid=73649&gclid=CjwKEAjwrcC9BRC2v5rjyvSbhWASJACKkjDzS0KOQ_c3FCR6Qcy9F__9AI9hnPETzGA_rtuAEsEalRoClVbw_wcB The dog ate mine a few months ago, and I just ordered a new one. I wonder if you can use it with a standard bag setup, instead of the cheap plastic re-breather masks - the value of a mask like this, I suppose, depends on how much you use the O2.
  19. LennyC

    0-25 Regulator and Demand Valve

    I would want 50 lpm for a 40 lpm demand valve, mine says you could use 40-90. Most DISS fittings (as opposed to the hose bib that will give you what you set) off a regular 15/25 lpm regulator run at 50 lpm, but you need to check that with the regulator specs. The dial that chooses the lpm usually doesn't regulate the secondary DISS fittings. When you use a demand valve, you get the lpm of how hard you are inhaling, up to the valve maximum. I've only seen 40 and 120 lpm demand valves. I have a 40 ---
  20. LennyC

    Rocking the boat ?

    I got testosterone replacement therapy for low T as one part of my preventative regimen. I asked my neuro for it after reading this paper: http://www.ncbi.nlm.nih.gov/pubmed/16732838and printing it out for my doc. Testosterone, melatonin, all sorts of things affect each other, and you have to have a holistic approach to the balancing the whole system -
  21. Up until a week ago, in prep for a bust, I've been on lithium for about 10 years. I'm allergic to Verapamil and most of the other prophylactics. Lithium won't break an episode, you start it with a steroid taper (or what ever you do to break a cycle) and hope that the taper breaks your cycle, and the lithium comes in behind to prevent I went from 2 episodes a year to one using the lithium. Started at 600, then 900, then eventually 1200 mgs/day in divided doses. You need to watch your GFR (kidney function) as it is a salt, and hard on the kidneys. Step up your water intake. BTW, I also do Batch's Vit D regimen, and keep my D between 75-85 nmol/ml (units?) I eat 10,000 IU/day of D, and have for several years with no adverse events.
  22. LennyC

    0-25 Regulator and Demand Valve

    I got my demand valve on eBay, I set up a few automatic searches to keep an eye out for me - I also use a welding regulator, as my O2 supplier also topped out at 15L regulators. Set up your searches for "demand valve oxygen" "LSP demand valve" "resuscitator valve" "positive pressure resuscitation" "porter o-two" and anything else that you find in your research. I got my valve for about $100, they can be $350+ if you can get one without a huge system that includes a small tank.
  23. When I am in episode, the back of my neck/base of skull (occipital) on the side of my headaches gets very tender - I get an occipital nerve block, and that really lessens the severity and frequency of my headaches. There is variability in how effective it is from episode to episode, and from shot to shot - sometime I notice a huge difference, other times not so much. I also get temporal nerve blocks as well, usually at the same time. Both are "high volume", which uses the max dose of whatever cocktail your doc uses (there are minor variations in recipe). The only other block that I know of for cluster is the sphenopalatine, which is and "up the nose" drip affair, and it hits in the inside corner of your eye/nose sinus area - haven't gone there yet, but I probably will some day when I get even more desperate that I am now ----- Yet another thing to discuss with your ped neuro - all the best luck, and I hope your child finds relief soon.
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