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Posts posted by CHfather

  1. 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. 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. 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. 

  4. 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/)

    2 hours ago, kat_92 said:

    How do I get my hands on oxygen for the future.

    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.

  5. 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/

  6. 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.



  7. 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)


    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.


  8. 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.


  9. 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.


  10. 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.


  11. 3 hours ago, Jeler said:

    Coffee or an energy shot at 3AM for me will not work, I'd be awake the rest of the night.

    You might be right, and I totally don't blame you for not wanting to test it. But something like 80 percent of people who drink caffeine during the night, even the very caffeine-heavy energy shots, to help treat a CH attack report that it does not keep them awake. 

  12. I have only a vague recollection of where the looking toward your feet thing came from.  I feel pretty certain it was advice that Dr. Kudrow, the discoverer of O2 therapy for CH (or at least the most early serious investigator of it), gave somewhere and was reported here by a patient of his.  But it could have been from a conference presentation by Racer or John Bebee, or perhaps from that time I was peeping through jon019's window . . . .

    I just did a little search to see if I could find my original source here at the board.  Didn't find that, but did read some posts by people who were patients of Dr. Kudrow's son, from 2013ish, in which Kudrow is telling them that timed release verapamil is no good, which feels like it's something that we are just fully accepting as valid in the last couple of years.  Or maybe it's just me that has been slow to fully accept it -- spiny and others may have been trying to get that through to me for many years now.

    (If you're wondering . . . I think I have this right.  Dr. Lee Kudrow himself had CH. His pioneering O2 studies were in the early 1980s. He's now retired.  The actress Lisa Kudrow is his daughter, and her brother, David Kudrow, is also a neurologist specializing in headaches.)