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Everything posted by CHfather

  1. 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.
  2. 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.
  3. 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?
  4. CHfather


  5. 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.
  6. 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
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. CHfather

    Hi all... newbie here

    There's a fairly high likelihood that your primary will be shocked by the amount of D3, and even try to talk you out of it. S/he will be wrong about that. You don't need to have the blood workup before starting the D3 at a basic level -- it is virtually guaranteed that your D is low, particularly by the standards required to treat CH, and starting at 10 or 20kIU/day isn't going to do you any harm in any event. Is the triptan injectable (could be pills (worthless) or nasal spray (iffy))?
  16. CHfather

    Hi all... newbie here

    Injectable triptans. Split them 3/1, or at least 2/1: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ D3. Start ASAP. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Energy shots. Drink one at first sign of an attack. 5-Hour Energy is a place to start (easy to chug, lots of caffeine). Check your triggers: https://clusterbusters.org/forums/topic/4568-triggers/ Benadryl. A lot of folks find that their CH ramps up in high pollen seasons, or from other allergies. "Batch" (one of the great experts) recommends standard dosing of 25mg 3/day and 50mg at night. That'll make you drowsy, but it might help your CH. Mushrooms and other substances: Read the numbered files in the ClusterBuster Files section Big compendium: Read Bob's Big Pocket Guide in the ClusterBuster Files section Your currents meds. What, specifically, are you taking, and how much? Oxygen. You could set up a system using welding O2 in a few days. ~15-20% of people with CH use it. You can't imagine the difference that O2 will make for you.
  17. According to this long-term evaluation of ten patients, effective for chronic CH. CONCLUSION: High volume suboccipital nerve blocks from this open label study appears to be effective in the preventive treatment of medicinal refractory CCH and shows consistent response over long-term use with high rates of pain freedom. For some reason, the system won't let me paste the whole summary. Here's a link to it: https://www.docguide.com/high-volume-anesthetic-suboccipital-nerve-blocks-treatment-refractory-chronic-cluster-headache-long-?tsid=5
  18. CHfather

    Cycle ending signs?

    Mum', I think you're going to find that part of that frustrating "everyone is different" thing about CH is that there are many ways in which cycles develop and end, and they don't always stay the same for individuals from one cycle to the next. I would guess that the most common pattern is ramping up pretty bad in the days before they fade away. For sure, it would not be unusual for the D3 to now be having an effect on his attacks. I have questions, one of which is more appropriate for a closed board such as "Share Your Busting Stories." Does he still not have access to oxygen when he gets his attacks? Is he doing anything to abort his attacks? Is he doing anything besides D3 as a preventive? And (the closed board one) is he busting now? All of those things are going to affect the pattern of his attacks, and maybe the duration of his cycle.
  19. CHfather

    Newbie with many questions

    Ratio of women to men diagnosed with CH has dropped from 6:1 to 2:1, and I at least am completely willing to believe that that's just diagnostic error based on the assumption that women don't get CH. Nighttime attacks are not necessary for CH diagnosis.
  20. CHfather

    Newbie with many questions

    You might know that CH was once called (and still is, I guess) "histamine headache." You don't need this now, but many people find that quickly drinking an energy shot such as 5-Hour-Energy at the start of an attack can help quite a bit. There's a lot of caffeine in those things (= couple of cups of coffee), and many believe that other ingredients in energy shots (taurine, maybe niacin, maybe B vitamins) also help.
  21. CHfather

    Newbie with many questions

    I'm not sure what the info I referred you to on the D3 regimen says about allergies, but the developer of the D3 regimen recommends Benadryl 4/day (25 mg three times and 50 mg at night), because he has noticed a strong correlation between high-pollen seasons (ands allergies in general) and CH. CH is a very harsh thing to have, and your fears about another cycle are justified. However, if you have CH, you had none of the treatments that make it manageable for most people. D3, a preventive (usually verapamil), an abortive (oxygen and injectable sumatriptan), awareness of triggers, use of melatonin, caffeine in some form, and some other tricks -- those all help, and you had none of them. A course of corticosteroids can sometimes help, too. And the new medication, erenumab (Aimovig), is showing a lot of promise as an effective preventive. None of this will fully alleviate your fear (there have been people here with chronic CH who have said they preferred it because they didn't live in dread any longer about when their next cycle might come), but also your fear shouldn't be disproportionate to the treatment possibilities. And I haven't mentioned "busting," which is the reason this site exists and which has made a huge difference for many. Read about busting in the numbered files in the ClusterBuster Files section, and also look through that section for other potentially helpful information ("Bob's Big Pocket Guide" is very thorough).
  22. CHfather

    Newbie with many questions

    Sure sounds like CH. There's nor real point in me talking about how stupid the medical advice you have received is -- you already know that. Nobody talks about "vascular migraine" anymore -- CH is just as "vascular" as migraine; it seems unlikely that you overexert yourself at roughly 3:00 every day . . . . and some day maybe we will know why so many doctors are so incredibly, tragically (for the patients) lost when it comes to O2. I would only urge you not to take an "if it does return" stance and assume that it will. Since headache centers often have long wait times for appointments, I would seriously consider setting up an appointment now. And it is probably very advisable to start the D3 regimen now: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708
  23. CHfather

    Newbie with many questions

    simple', I really got nothing valuable for you, but . . . Regarding #1, here is a passage from a fairly large study of CH patients in 2011. It answers the "does anyone" part of your question, but it's pretty fuzzy overall: A total of 21% of survey responders noted an aura history before a cluster headache attack. Survey responders were asked if they ever experienced any symptoms including aura prior to cluster headache onset. Auras could be visual, sensory, language/speech, and brainstem (dizziness and vertigo). Aura duration was less than 5 minutes in 25%, 5-10 minutes in 30%, 11-15 minutes in 17%, 16-20 minutes in 10%, 21-25 minutes in 10%, and 25 minutes or more in 8% of patients. Almost all auras with cluster headache lasted less than 25 minutes (92%), and 55% of patients with cluster headache had auras that lasted 10 minutes or less. #2. I haven't heard of this, and I'd say it's surely not common, but maybe someone has it as a symptom. #3. Yes, some people have warning signs that their cycles are beginning, but again -- from what I have read -- fatigue and dizziness aren't common onset signals. #4. There are a lot of CH-like symptoms in there (beer as a trigger, rocking and moaning, thinking it's a teeth issue), but others not so familiar to me. You don't say much that relates to the basic diagnostic things: timing of attacks, length of attacks, attacks/day, location(s) of pain, physical manifestations in eyes/nose. I assume you have looked up the symptoms or indicators and know what they are. Triptans in pill form virtually never work for CH; nasal spray sometimes works; injections almost always work (although there's nothing diagnostically useful about that since triptan injections work for a lot of types of "headaches"). You don't mention oxygen, which when set up and used effectively aborts attacks for a very large percentage of people with CH. That might be a next step with both therapeutic and diagnostic potential, since O2 is generally not effective for other headache types.
  24. CHfather

    Jawbone cavitation source of cluster headaches

    Thank you, cheeky'. It could be the dental extraction was a cause . . . We thought that about my daughter's situation, in which she began having CH attacks after a difficult extraction.* However, it's just as likely that attacks after dental work are caused by the anesthetic that is typically used, xylocaine, which contains epinephrine. I realize that the structural effects of an extraction seem more likely to be lasting than the system effects of an anesthetic. So, like I say, you could well be right about that. *She had had bad "headaches" before, but they hadn't reached CH-terrible levels. Hadn't even seen a doctor about them. After that, they were bad. Glad you have it (relatively) under control. If your sumatriptan is injectable, you might consider this advice for splitting injections so you use less but still get fully effective aborts: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ And you might also consider the vitamin D3 regimen that has helped many: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708