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Everything posted by CHfather

  1. CHfather

    My experience with CH

    non-rebreather. or, as jon' says, a plastic bag.
  2. CHfather

    My experience with CH

    You could very quickly set up a temporary oxygen system using welding oxygen for something like $100. Many people use welding O2. You'd have to get a tank from a welding supply store and order a regulator and mask online. If you can get to a welding supply store right away, the time the whole process would take would just depend on how quickly you can get the regulator and mask. If you want more info about this, just ask. (I have the sense that you might not be in the US. I'm not sure if it's as simple as I've said in other places.) [Edit: Crossed posts with Freud here.]
  3. CHfather

    Cleaning O2 Mask and hose

    I'm surprised by how many sites recommend replacing masks pretty frequently -- every month or six weeks. I don't think many people in this community do that, but I could be wrong. If you have a standard non-rebreather mask, you can buy a new one at amazon or many other online sites for under $10. If you don't have the premier mask designed for people with CH (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit), it's a darn good investment. The general advice for cleaning a mask is to wash it in warm soapy water, rinse it with a solution of 10 parts water to one part vinegar (vinegar kills bacteria but is not supposed to harm anything else), and then rinse well with hot water.
  4. CHfather

    Open letter to major chemical companies (BOL-148)

    Thanks, Denny. i suppose yale has recognized that it has to do something to make up for having me as one of its graduates.
  5. CHfather

    Open letter to major chemical companies (BOL-148)

    Thank you. I'm looking forward to hearing more. I looked up Mr. Turnbull on google in every way I could think of to learn about his BOL-related activities, but didn't find anything. So I'll have to wait for more news about him from the conference.
  6. CHfather

    Open letter to major chemical companies (BOL-148)

    Love to know what "back on track" means. I'm sure the official ClusterBusters FB site wouldn't mislead us, but there's no real info there, either. We heard this over and over from Dr. Halpern at previous conferences. I remember getting real excited and being told by more senior people that they'd heard it before. Entheogen couldn't raise the millions required for clinical trials. I gave them money and convinced friends to give them money. So I'm feeling burned by it all, but willing to become hopeful again.
  7. You have to ramp up Verapamil, with monitoring of your heart. Many people with CH need large doses before it's effective -- considerably larger that what is used in its typical application, as a blood pressure med. Something in the range of 960mg/day can be required for full effectiveness. (The need for such high levels is recognized in the medical literature about CH -- it's not something people do on their own -- but many doctors are not aware of this.) The D3 regimen, if followed properly, will probably be more effective for you, and better for you, than Verapamil.
  8. CHfather

    Okay to take Verapamil and Hemp Oil Extract?

    (1) Very nice of you to make that call, spiny. (2) spiny, what has been your experience with the CBD oil? I think I have three questions, assuming that you're using it to treat CH: (a) are you using the hemp-based version or the marijuana-based one? (b) are you using it for aborts? if so, is it helping you? (c) are you experiencing any kind of preventive effect from it, as far as you can tell?
  9. CHfather

    O2 prescription

    Another thing to suggest to your doctor is that s/he look in any standard medical reference guide (the doctor should have some online one), where oxygen is the #1 recommended abortive. This is all oh so true. In my opinion, O2 is not prescribed for reasons that have nothing to do with its efficacy (which is unquestionable), or even the insurance issues (though they definitely state this as a reason, as CHChris says). It's because most docs have no experience with patients using high-flow oxygen, and there are unsure about how to prescribe it and what to do with a patient who is using it. So you have to persist. Even that is not always sufficient. Government insurance programs (Medicare, Medicaid, VA) are not allowed to prescribe O2 for CH. This is an irresponsible abomination. I think any private insurance has to cover it (could be wrong!) but it can take a lot of work to get them to do so. Maybe you want to call your insurance co in advance to get an idea. If your doc gives you the insurance "excuse," you might say you want to get the prescription anyway and you'll pay out of pocket if you have to. Regarding suppliers -- as CHC' suggests, you should call them after you get your prescription and make it clear what CHC' says: a large tank and a small one, with regulators for each (they use different regulators) that go up to at least 15 lpm, and non-rebreather mask. You do not want a "concentrator," which makes O2 out of room air. I haven't heard of docs prescribing tank sizes, but maybe it happens, and that would be good. The supplier is going to make a lot of runs to your dwelling to replace tanks if they give you only a small one or a couple of small ones. There is also a ,mask very strongly recommended for people with CH, which you will have to buy yourself: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit And you might want to get higher-flow regulators. We can discuss that when the time comes. Fingers crossed that it will be as easy as it should be, and not as hard as we have come to expect it to be.
  10. CHfather

    O2 prescription

    What Freud said. The example we always give is "Oxygen therapy for cluster headache. Up to 25 min at 15 L/min with non-rebreather mask." I suppose this was taken from someone's prescription, and there are probably other ways of saying it. Where it says 15 L/min; if you get the doc to write 25 L/min, all the better! In case it's helpful to show the doctor, the randomized, double-blind, placebo-controlled study of O2 for CH is here: https://jamanetwork.com/journals/jama/fullarticle/185035
  11. CHfather

    Lithium and D3 regimen

    It appears you don't have oxygen. That's something you really, really want for aborting attacks. Lithium is generally not recommended to be prescribed to people with episodic CH because of the severe attacks that follow from discontinuing it. That might explain part of what you're experiencing. For many people, an energy shot (such as 5-Hour Energy) taken at the first sign of an attack can help lessen the severity or even abort an attack. It is also advised that sometimes drinking ice water through a straw aimed at the roof of your mouth, with the aim of inducing brain freeze, can stop an attack. I have no idea how sumatriptan injections or a triptan nasal spray might interact with lithium. But since you can't bust anyway, maybe a triptan would make sense for aborting attacks (?). Oxygen should be the go-to, but sometimes it's easier to get a triptan prescription than to get oxygen.
  12. CHfather

    Lithium and D3 regimen

    Regarding lithium and MM, it says this in the ClusterBuster Files (in "Playing Well Together"): >>Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects. The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. If people are taking lithium for treating cluster headaches and it is not working, they may want to talk with their doctor about not taking it any more before trying mushrooms or LSD. If people are taking lithium for bipolar affective disorder, they probably should continue taking lithium, and they should avoid taking tryptamines for cluster headaches.<< Not everything in these older document is completely reliable, but I do believe that some others have commented over the years that this information should be kept in mind. I'm sure that Batch will comment on your primary question, about D3.
  13. CHfather

    Medical O2 Edmonton Canada

    There have been a few people in cities who have called walk-in clinics and asked whether they prescribe O2 for CH. It worked out for at least two of those people. It probably would be good if you had some kind of written documentation showing that you have CH. Have you considered welding oxygen, which a lot of people use?
  14. CHfather


  15. I don't know whether this is useful for those of you who ponder causation . . . >>cluster headache is associated with a functional abnormality of the hypothalamus and that this association is a primary (i.e. idiopathic) and not a secondary phenomenon during the bout<< Hypothalamic dopaminergic stimulation in cluster headache; Lepper A, Frese A, Summ O, Nofer J, Evers S; Cephalalgia 33 (14), 1155-1159 (Oct 2013) BACKGROUND Cluster headache is associated with structural abnormalities of the hypothalamus. We were interested in the association of cluster headache with endocrinological functional abnormalities. Therefore, we applied the apomorphine challenge test, which is a specific test of hypothalamic dopaminergic activation. METHODS We enrolled 13 patients with cluster headache outside the bout and without medication. They were stimulated with 0.005[ch8201]mg/kg of body weight subcutaneous apomorphine hydrochloride. After 45 and 60 minutes, growth hormone (GH), prolactin and cortisol were measured. The test was also applied to 14 sex- and age-matched healthy control subjects. RESULTS There were significantly higher GH levels in healthy subjects as compared to cluster headache patients 45 minutes after injection (10.8[ch8201]±[ch8201]10.8 versus 4.4[ch8201]±[ch8201]7.4[ch8201]ng/ml; P [ch8201]=[ch8201]0.038). Only in cluster headache, the GH level after 60 minutes was not significantly different from the baseline. The levels of prolactin and cortisol did not show any significant differences between cluster headache patients and in healthy subjects. DISCUSSION Our data suggest that cluster headache is associated with an impaired dopaminergic stimulation. This finding supports the body of evidence that cluster headache is associated with a functional abnormality of the hypothalamus and that this association is a primary (i.e. idiopathic) and not a secondary phenomenon during the bout.
  16. CHfather

    FDA approval...new migraine preventive drug...

    Thanks, THMH. Here's more unsatisfying news: "A pre-specified futility analysis of the chronic cluster headache study revealed that the primary endpoint of mean change from baseline in the monthly average number of cluster headache attacks during the 12-week treatment period is unlikely to be met." https://www.tevapharm.com/news/teva_provides_update_on_clinical_trial_of_fremanezumab_for_use_in_chronic_cluster_headache_06_18.aspx
  17. CHfather

    FDA approval...new migraine preventive drug...

    I know you're trying to be helpful (and promote a product, which is generally against the rules of the board but I suppose could be waived in this case(?)), but Ajovy is not, to the best of my knowledge and with reference to the Ajovy website, approved for cluster headache -- and there's really no such thing as "cluster migraine." So unless you can clarify, this might be creating false expectations among people with cluster headache, which is not a form of migraine. I'd be happy to be shown that I'm wrong, since I think this treatment is important.
  18. CHChris, can you say anything about what you learned from Racer's presentation that helped so much? He's great, and always full of great advice. I assume you have heard that many people use welding O2 as the basis for their systems. That's an option worth exploring if you can't get a prescription for medical O2.
  19. CHfather


    D3 regimen and busting (read the numbered files in the ClusterBuster Files section to learn more about busting) are the only ways I know to "get them go away" (end your cycle) without a visit to a neuro for a prescription (such as verapamil and/or prednisone, which might or might not work to end your cycle). Of course, you can get individual attacks to go away with oxygen, sumatriptan, and other things that you might get from a neuro. And I suppose you might step up from straight coffee to energy shots (such as 5-Hour Energy) to maybe get quicker aborts.
  20. CHfather


    Hubby, type CBD into the search bar at the top right of the page. It will lead you to several accounts from people who say they were significantly helped by CBD oil.
  21. CHfather

    FDA approval...new migraine preventive drug...

    Thanks, jon'. I posted some info a while back on the Research board that suggested that this type of drug ought to work well for people with CH, too. No long-term studies yet of any kind of use, so l-t side effects undetermined.
  22. Basic finding: Oral steroids generally more effective than occipital nerve injection of steroids as transitional treatments. Half or fewer of the subjects received full temporary relief of symptoms with either method (50.6% with oral prednisone, 36% with injections). https://www.docguide.com/greater-occipital-nerve-injection-versus-oral-steroids-short-term-prophylaxis-cluster-headache-retro?tsid=5 OBJECTIVE To investigate our experience with oral steroid and greater occipital nerve (GON) injection with steroid as transitional treatments for cluster headache. BACKGROUND Cluster headache is a primary headache disorder characterized by multiple episodes of intense unilateral pain with autonomic features. During cluster headache attacks, transitional therapies are useful while prophylactic dosages are initiated or increased. There are limited data comparing the efficacy of oral versus injected transitional treatments. METHODS We retrospectively reviewed charts for patients evaluated with cluster headache at our center and captured episodes of transitional therapy utilized from 1995 to 2014. Treatment benefit was categorized into complete, partial, or no response. RESULTS Forty-three patients received transitional therapy over a total of 151 encounters, of which 140 were available for analysis. Encounters featured oral steroids (81, 57.9%) and GON injection (59, 42.1%). Of the 40 patients with treatment response data available, 24 patients received only one type of transitional therapy and 16 patients received both therapies. More encounters featuring oral steroids versus GON injections led to at least a partial response (82.7% vs 64.4%) and to a lesser extent a complete response (50.6% vs 35.6%). Among 16 patients treated with both therapies, 8 (50%) responded to both and 6 (37.5%) responded only to oral steroids. CONCLUSIONS Our single-center, retrospective data suggest the majority of patients with cluster headache responded to both prednisone and GON injections for transitional treatment, with a higher response to oral steroids. Our results may inform study design for a randomized trial, which is warranted.
  23. CHfather

    What would you do

    tues' -- No oxygen? Are you doing the D3 regimen? You find that the suma pills actually help you? I ask because most people say they don't help, but you're the second person today to say that they do help them.
  24. CHfather

    What would you do

    Yann, this is of course very painful to read for those of us who understand what you are going through. It's not clear to me why you're only planning to do the D3 regimen "starting next winter." It's something you should do right now, I think. Have you looked into the GammaCore device at all -- a portable method for aborting attacks. http://gammacore.co.uk/ Mixed reviews, apparently not as effective for people with chronic CH, and quite expensive in the US (don't know about Europe), but I'd think it could be worth trying. Also, the new preventive medicine erenumab (Aimovig) is approved in the EU, at least for migraine, and I think it can be expected to be helpful for CH, if you can get a doctor to prescribe it. As I understand it right now, you have to go to a doctor's office to get an injection every two months -- but I could be wrong about that. CBD oil as an abortive and possible preventive? Lots of good reviews here. You can look it up by typing CBD into the search bar at the top right of the page. Do you know about splitting triptan injections so you use a lot less each time, and therefore have a lot less side effects? https://clusterbusters.org/forums/topic/2446-extending-imitrex/ As you say, many people have found relief from busting. I can see how it doesn't really fit your schedule right now, but of course it's something you should consider. You would not be the first person to come here thinking it would be better to not be alive, and to find life a lot better.