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CHfather

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Everything posted by CHfather

  1. CHfather

    CH without pain?

    The term "cluster migraine" is sometimes thrown around by doctors with the wrong meaning, but there is apparently a very, very small segment of people who have symptoms of both at essentially the same time. (This is different from the group that has both migraines and CH, but can tell when each is occurring.) The sharp decline in cognitive ability is also often experienced by many people with CH (but I don't know if that is also true sometimes of people with migraine). As you can see, I have quickly reached the end of my potential usefulness. Maybe someone else here will have more useful insights. Is your neuro a headache specialist, perhaps at a headache center? It might take that level of expertise, not just the expertise of a general neuro, to help you sort this out.
  2. CHfather

    Finally a diagnosis and D3 update

    Nice remembering, Freud! Looking back over these threads, I see that HC has been discussed. Easy to forget key things when under the pressure of talking to a doctor. A "required" aspect of a hemicrania diagnosis is the eye or nose symptoms that are also typical of CH, which kat' doesn't have, but your suggestion is very important to follow up. Maybe it's "atypical" HC!
  3. CHfather

    Finally a diagnosis and D3 update

    Atypical means that it doesn't have all the symptoms of the "typical" cluster headaches that most people have. What that article says is that atypical CH often comes from causes such as pituitary gland issues that are not the causes of "typical" CH. There is no identifiable cause of typical CH.
  4. CHfather

    Finally a diagnosis and D3 update

    A week generally isn't enough for the D3 to be effective, or at least not fully effective. Your blood test will tell you what your D level is. It has to be pretty high for the D3 regimen to be most effective.
  5. CHfather

    CH without pain?

    The attack you experienced sure sounds like CH. One difference between migraine and CH is that while people with migraine often seek relief by lying down in a dark room, people with CH generally can't sit or lay still: they are "restless" or "agitated." A proportion of people with CH also have migraine-like symptoms, including aura, so those symptoms don't rule out CH. There are people whose treated CH appears with a feeling that there should be pain, but there isn't any. This seems to most often be true of people who are treating their CH with psychedelic substances. I don't know how it would happen with untreated CH.
  6. CHfather

    Finally a diagnosis and D3 update

    BKP -- Maybe a triptan nasal spray will work for you. Or would you feel better without the self-injector, if you were just injecting yourself with a syringe? That can be arranged.
  7. CHfather

    Finally a diagnosis and D3 update

    kat' -- Glad you got a diagnosis. Hope the steroids help. Unlike regular cluster headaches, atypical CH often has an underlying physiological basis, such as something going on with the pituitary gland. Have you had an MRI? (From a journal article: "Based on this review, I suggest that neuroimaging, preferably contrast-enhanced magnetic resonance imaging/magnetic resonance angiography should be undertaken in patients with atypical symptomatology" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3928394/) Your doctor should prescribe it, particularly since you have the diagnosis and an apparently caring doctor (Yay!). It's listed in all the medical resources as the #1 abortive. If you can't get a prescription or run into insurmountable hassles with insurance, welding oxygen is an option that many people use.
  8. CHfather

    Preventatives for this year's attacks

    There are some people here who think it's a good possibility that verapamil can lead to heart issues. I'm just saying that it seems like with proper monitoring you minimize that risk, and maybe you'll get a preventive payoff from verap. From my perspective, the D3 regimen is the way to go, for the reasons I stated. (You can do both.) It's ridiculous to be told that since you have Imitrex, you don't need oxygen. Just ridiculous. Zero side effects and highly reliable O2 vs obvious side effects triptans. Having both is good. Triptans for the breakthrough attacks. There might be some information in this post that will be valuable to you: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  9. CHfather

    Preventatives for this year's attacks

    Since you're only asking about preventives, I'll suggest as an aside that you be sure that you get a prescription for oxygen, if you don't already have it. I don't think prednisone is a preventive if you take it before your cycle. Maybe I'm wrong about that. That is, it might "prevent" some attacks for a few days while you are in cycle, and I guess it can be preventive if it actually knocks out your cycle, but usually it only works during the time it is taken, which is typically two - three weeks. Generally, steroids are considered reasonably safe if you only do them once a year. Verapamil can indeed be harmful, but lots and lots of people have taken it, often at doses that are quite high, without harmful effects. Seems like your doctors intend to do careful monitoring, which is important. You should start the D3 regimen right away. Best and probably safest preventive there is: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Triptans can be obtained in vials with syringes so you can measure out your own dosage, if your doctor is amenable to prescribing them that way. Saves you a lot of trouble.
  10. CHfather

    Just a question

    Restlessness/agitation are part of the diagnostic criteria.
  11. If you want to see what there is in the medical world regarding CH, new and old, it's pretty straightforward: Go to pubmed (https://www.ncbi.nlm.nih.gov/pubmed) and type cluster headache into the search bar at the top of the page. For most things, you can only see the basic information, but some will show you more.
  12. CHfather

    Melatonin & pineal gland

    Here's a proper link, but there's nothing else there about this article. Big bucks required to see the actual thing. Quite a few other melatonin studies also listed there. https://www.ncbi.nlm.nih.gov/pubmed/31370669
  13. Some more info about melatonin (more than I knew, anyway), and more thinking about understanding the brain processes involved in CH. Current understanding of pineal gland structure and function in headache; Peres M, Valença M, Amaral F, Cipolla-Neto J; Cephalalgia 333102419868187 (Aug 2019) PURPOSE The pineal gland plays an important role in biological rhythms, circadian and circannual variations, which are key aspects in several headache disorders. OVERVIEW Melatonin, the main pineal secreting hormone, has been extensively studied in primary and secondary headache disorders. Altered melatonin secretion occurs in many headache syndromes. Experimental data show pineal gland and melatonin both interfere in headache animal models, decreasing trigeminal activation. Melatonin has been shown to regulate CGRP and control its release. DISCUSSION Melatonin has been used successfully as a treatment for migraine, cluster headaches and other headaches. There is a rationale for including the pineal gland as a relevant brain structure in the mechanisms of headache pathophysiology, and melatonin as a treatment option in primary headache. https://clusterbusters.org/forums/forum/13-research-scientific-news/?do=add
  14. I don't really understand most of the crucial terms here, but it still seems interesting enough. Long-term efficacy of superficial temporal artery ligation and auriculotemporal nerve transection for temporal cluster headache in adolescent; Chang B, Zhu W, Zhu J, Li S; Child's Nervous System (Jul 2019) Tags: OBJECTIVES Cluster headache is a primary headache disorder, which has affected up to 0.1% population. Superficial temporal artery ligation combined with auriculotemporal nerve transection (SLAT) is one of the surgical alternatives to treat the drug-resistant temporal cluster headache (TCH). The current work aimed to assess the effect of SLAT on TCH patients based on the very long-term clinical follow-up. METHODS The current retrospective study had enrolled 20 adolescent TCH patients undergoing SLAT between December 2016 and January 2018. The headache diaries as well as the pain severity questionnaire of the visual analog scale (VAS) had been collected to measure the pain severity before and after surgery. RESULTS The pain-free rates 3 days, as well as 1, 6, and 12 months, after SLAT surgery were 2.00%, 10.00%, 25.00%, and 70.00%, respectively. The frequency of TCH attack daily was found to be markedly reduced on the whole; besides, the pain degree was also remarkably decreased. CONCLUSIONS Results in this study indicate that the sustained headache can be relieved after SLAT in adolescent patients with intractable TCH. https://www.docguide.com/long-term-efficacy-superficial-temporal-artery-ligation-and-auriculotemporal-nerve-transection-tempo?tsid=5
  15. CHfather

    Vitamin d3 regimen

    It really sounds like what Freud said, hemicrania continua: https://www.ninds.nih.gov/Disorders/All-Disorders/Hemicrania-Continua-Information-Page You'll see on this page that if it is HC, it is treatable with a medication, indomethacin (and cluster headache treatments, such as oxygen, are likely not to be effective). It's relatively easy to test with indomethacin whether it's HC or not, though it is not beyond doctors to screw that up with not prescribing enough or not long enough. Indomethacin is hard on the guts, so it needs to be taken with something to protect your stomach. You can start the D3 regimen without a blood test. It's 99% likely that your D level is low. I don't know whether the D3 regimen helps with hemicranias or not. CH is somewhat genetic, in that it can run in families, but most people who have it do not have a family history.
  16. CHfather

    New Orleans - Help request (oxygen)

    If all this sensible advice doesn't work, maybe you could go for some welding tanks. If you have a friend there, s/he could pick it up for you, or maybe you could find/make the time.
  17. Diamond is fine. My only big question about making such a journey would be whether If they give you prescriptions (for oxygen and medications), you will be able to get them filled where you live. Maybe you're coming to the US for other reasons besides going to this clinic.
  18. CHfather

    Intro / Vitamin D

    Vitamin D: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 I would also urge that you might read this for an introduction to things you can or should do: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  19. CHfather

    Age? Altitude? Verapamil? Zomig? Exercise?

    andy', you've received great advice from several of the best advisors here, and I see from other posts that you're following up on it. DO NOT be deterred from getting O2. Your doctor has started you on the right path, except for surrendering much too easily regarding oxygen. I tried to put the various things I know into one document, and you might look through it for other info: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ That post also includes the info that is in the "New Users...Read Here First" link at the top of every page. You might or might not be ready to consider busting now, but it will be good for you to know about it.
  20. Getting one every day at roughly the same time is not inconsistent with having CH.
  21. "The percentage of patients who had a reduction of at least 50% in headache frequency at week 3 was 71% in the galcanezumab group and 53% in the placebo group." This might make one as curious about the power of placebo as about the efficacy of galcanezumab (Lily's CGRP drug). (Also curious about why only results for weeks 1-3 are included, since apparently it was administered again at 1 month.) Trial of Galcanezumab in Prevention of Episodic Cluster Headache; Goadsby P, Dodick D, Leone M, Bardos J, Oakes T, Millen B, Zhou C, Dowsett S, Aurora S, Ahn A, Yang J, Conley R, Martinez J; New England Journal of Medicine (NEJM) 381 (2), 132-141 (2019) Tags: calcitonin (human synthetic) calcitonin (pork natural) calcitonin (salmon synthetic) BACKGROUND Episodic cluster headache is a disabling neurologic disorder that is characterized by daily headache attacks that occur over periods of weeks or months. Galcanezumab, a humanized monoclonal antibody to calcitonin gene-related peptide, may be a preventive treatment for cluster headache. METHODS We enrolled patients who had at least one attack every other day, at least four total attacks, and no more than eight attacks per day during a baseline assessment, as well as a history of cluster headache periods lasting at least 6 weeks, and randomly assigned them to receive galcanezumab (at a dose of 300 mg) or placebo, administered subcutaneously at baseline and at 1 month. The primary end point was the mean change from baseline in the weekly frequency of cluster headache attacks across weeks 1 through 3 after receipt of the first dose. The key secondary end point was the percentage of patients who had a reduction from baseline of at least 50% in the weekly frequency of cluster headache attacks at week 3. Safety was also assessed. RESULTS Recruitment was halted before the trial reached the planned sample size of 162 because too few volunteers met the eligibility criteria. Of 106 enrolled patients, 49 were randomly assigned to receive galcanezumab and 57 to receive placebo. The mean (±SD) number of cluster headache attacks per week in the baseline period was 17.8±10.1 in the galcanezumab group and 17.3±10.1 in the placebo group. The mean reduction in the weekly frequency of cluster headache attacks across weeks 1 through 3 was 8.7 attacks in the galcanezumab group, as compared with 5.2 in the placebo group (difference, 3.5 attacks per week; 95% confidence interval, 0.2 to 6.7; P = 0.04). The percentage of patients who had a reduction of at least 50% in headache frequency at week 3 was 71% in the galcanezumab group and 53% in the placebo group. There were no substantial between-group differences in the incidence of adverse events, except that 8% of the patients in the galcanezumab group had injection-site pain. CONCLUSIONS Galcanezumab administered subcutaneously at a dose of 300 mg once monthly reduced the weekly frequency of attacks of episodic cluster headache across weeks 1 through 3 after the initial injection, as compared with placebo. (Funded by Eli Lilly; ClinicalTrials.gov number, NCT02397473.). https://www.docguide.com/trial-galcanezumab-prevention-episodic-cluster-headache?tsid=5
  22. CHfather

    24hrs in

    Pupp, I'd suggest that you read this post. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  23. CHfather

    Hemicrania that mimics CH

    Thank you for this thoughtful response, Siegfried. I'll just add a few notes. One is that recommended dosing for indomethacin is all over the place, between 50mg/day and 300mg/day. And while some sources say the effects if indo can be seen pretty quickly, others say it can be a couple of weeks or more. So I can't help but wonder how many people have "tried" indomethacin but (as is also true with some CH meds like verapamil), not really had it at high enough doses for a long enough time for a fair test. Second, I would be cautious about any data regarding hemicranias, just as we have had to be cautious about CH data. Hemicrania wasn't recognized as a medical condition until the 1980s, and I'm going to guess that the majority of doctors don't recognize it, so it can be strongly underreported. I wonder sometimes how many cases of "intractable chronic CH" are actually misdiagnosed hemicranias. There was a journal article in 2001 with the title "Hemicrania is not that rare." One of the authors was the great student of CH, Todd Rozen. (https://www.ncbi.nlm.nih.gov/pubmed/11577748). Maybe current projections factor in that observation. Also, the women/men thing is highly untrustworthy in my view, because as we have seen with shifting CH "statistics" over the years, women quite often get misdiagnosed. Even though the hemicrania reports go in the opposite direction (more women than men with hemis; more men than women with CH), I just don't trust any gender-related statistics since there's no reason that I know of that there should be a prevalence in either direction, and so I tend to think it's a function of some kind of diagnostic error. All that said, your general principle is probably correct, and maybe people should treat things as CH unless standard CH abortives don't work for them. (On the other hand, there are some "experts" who say no harm done with first trying indomethacin so hemicrania can be ruled out.)
  24. CHfather

    Hemicrania that mimics CH

    This sounds like a situation that is sometimes described here. A reason to give indomethacin a fair try with treatment-resistant symptoms that seem to be CH. https://www.docguide.com/case-remitting-hemicrania-continua-seasonal-variation-and-clustering-diagnostic-confusion-cluster-he?tsid=5 A case of remitting hemicrania continua with seasonal variation and clustering: a diagnostic confusion with cluster headache (May 2019) Hemicrania continua (HC) is an indomethacin responsive primary headache that is characterised by a continuous strictly unilateral headache with periodic exacerbations. About 15% may have a remitting subtype of HC. Herein, we are reporting a 36-year-old man who had a 5-year history of episodic right-sided headaches. The headaches used to occur in a discrete series lasting 4-6 weeks, separated by pain-free remissions of 10-11 months. In each relapse, he had continuous background pain with superimposed exacerbations. The superimposed exacerbations were 1-2 attacks per day, lasting for 2-5 hours, and were associated with ipsilateral cranial autonomic symptoms. However, the patient did not respond to usual therapies of custer headache (CH). He had a complete response to indomethacin. We suggest that remitting subtype of HC may mimic CH. A therapeutic trial of indomethacin should be done in all strictly unilateral headaches that are not responding to other drugs.
  25. CHfather

    Newb here

    Jost, there's a lot of information in this file about oxygen and other strategies: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The vitamin D3 regimen is another thing that you really need to try.
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