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Posts posted by CHfather

  1. On 10/14/2020 at 11:48 AM, Double A said:

    What caffeine drink works best for you?

    I'm able to abort most attacks at 15L at about 10mins. Are you able to abort them faster with 25L?

    I used to able to abort most attacks in about 5min with Sumatriptan injection, but unfortunately due to another health condition/medicine I can no longer use that.

    The nice thing about 5-Hour Energy is that it packs a lot of caffeine (twice as much as a RedBull) but can be chugged down quickly.  Plain strong coffee is enough for some people (keep it ready in the fridge).

    10 minutes is a reasonably quick abort.  Caffeine and/or the special mask (ClusterO2 Kit) will probably speed that up.  You might not get a whole lot faster abort with 25lpm, but you had said that 15lpm didn't really keep pace with your breathing, so it seems reasonable to think that if you can breathe at your most effective pace, you could cut off some additional time.

    Is it that you now can't use any triptan, or just that you can't take as much as the Imitrex injector (6mg)?  It's always good for anyone to stay away from the triptans as much as possible, but you might want to be aware that 2mg of sumatriptan is enough to stop attacks for most people, and there are ways of using only that much. For example ... https://clusterbusters.org/forums/topic/2446-extending-imitrex/

    There are a few additional ways of dealing with an attack in this post, under "Other 'Treatments'...."  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   Also some info there about the D3 regimen, which as others have said is very much worth pursuing.

  2. And/or . . . see if you can get sumatriptan in vials, and syringes, so you can self-measure.  The 6mg in the autoinjector is way more than you need--2mg or 3mg is all that's needed.  There's also the 3mg Zembrace (in the US) injectable sumatriptan.

  3. 1 hour ago, Dallas Denny said:

    . . . larger sizes which cost her more

    I admit to being an overly large guy, but when I clicked on the size I intended to order, the price changed from $20 to $223!  I'm sure it was supposed to be $23, but I was reluctant to proceed with my order.  There is no place at the website to leave feedback, so maybe you can get this message to her.

  4. 3 hours ago, mikeh2017 said:

    coping techniques/tips/

    If you are looking for these, you might start here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/     The section called "'Treatments' without O2 or other meds" might be most relevant, but maybe parts of the rest of it will be helpful.

    3 hours ago, mikeh2017 said:

    advice regarding Psilocybin

    Not sure what kind of advice you're looking for, but the general principles of "busting" with psilo or other substances are included at the end of that file I just linked you to (the same information appears if you click on the "New Users..." thing at the blue ribbon at the top of the page).

  5. Back in 2016, a fellow wrote this: >>.I mix and chug down: 1 Teaspoon of baking soda 1 or 2Lime(s) (Preferably organic) 1 cup of filtered water (Don't use tap water) Not only I have been able to reduce the intensity of an attack, but I have been able to abort it. It's worked several times.<<   

  6. 2 hours ago, SECAuthentics said:

    I think I read somewhere that the desired levels of Vitamin D3  is in the 60's but can't remember.

    Batch has written: "CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L), min = 34.0 ng/mL, max = 149.0 ng/mL."

  7. Here's an overview of CH treatments. It also has a link to the D3 regimen.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    I'm not completely certain that what she has is CH, but you might as well try the recommended treatments and see what happens.  Maybe it won't be too hard for her to get her hands on a cylinder of O2 with a non-rebreather mask and a regulator that goes up to at least 15 lpm?  (She could try 12lpm if that's all that's available.)  

    Thank you for being there for your sister!

  8. 22 hours ago, Nray said:

    I have been dx with episodic intractable cluster headaches.

    I don't think they're "intractable" unless they fail to respond to all conventional treatments, and I'm pretty sure that's not the case.

    It's possible that you won't have another cycle for a long time, or at all.  More likely that you will, of course.  Quite possible that the various CGRP meds will be better developed for CH by the next time you have a cycle, or another effective treatment will have been discovered/approved, and it will turn out to be easier for you than it has been for all the previous generations of people with CH. For a general overview of ways to treat CH, you might want to look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   You'll probably forget most of what's in it, but if/when  you do have another cycle, you'll know it's there.

    Asking myself if there's anything you should do now.  I'd say to seriously consider starting some version of the vitamin D3 regimen (there's link in the post I linked you to above), so you are building up your D levels.  As far as anyone knows, there aren't any bad side effects from following that regimen in a disciplined way.  You don't say whether you received any prescriptions (maybe the diagnosis came after your cycle was over). You will read about triptans in the post above: they have their uses.  Because the number of triptan devices (injectors or spray containers) that you can get at any time is limited, more than a few people fill their prescriptions for triptans when they are out of cycle so they have a "stockpile" when/if they need them. This is just something to consider. They're expensive. And you might never need them, or never really want to use them.


    • Like 1

  9. igdc, this is a kind of guide to the treatment options we're most familiar with.  Maybe you'd want to look it over, just for preparedness' sake: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   It doesn't address the new CGRP pharmaceuticals (Emgality, Aimovig, Ubrelvy, and others), which might be worth trying. And people are always mentioning new things that seem to have helped them. 

    Do not underestimate the potential power of busting!!!!!  It's discussed at the end of the post I just linked you to, and also under the blue "New Users..." banner at the top of each page.


    • Like 2

  10. Myhed', you might want to look into the condition called Horner's syndrome, I think.  People with CH can have it outside of their cycles. The main characteristics, as listed Mayo Clinic are droopy eyelid (ptosis), a persistently small pupil (miosis), slight elevation of the lower lid (sometimes called upside-down ptosis), sunken appearance to the eye, and little or no sweating (anhidrosis) either on the entire side of the face or an isolated patch of skin on the affected side. 

    As I understand it, though, Horner's is rarely painful unless there's a more serious underlying condition.  I think your symptoms probably are not a sign that your CH is returning (maybe others will correct me about that), but I think you should have them checked out by a doctor to rule out other causes. An opthalmologist, I would imagine.

    • Like 1

  11. Seigfried, I was just reading this for another reason, and saw this info about an apparent way of treating HC.  Maybe it doesn't fit for PH, but I felt I should mention it.


    "....  Patient 1, an 82-year-old Caucasian woman, presented with hemicrania continua with a partial Horner’s syndrome that was present for 2 years. She was unable to take indomethacin as she was on anticoagulation. After a C2–3 diagnostic facet injection, not only did she become pain free but her ptosis completely resolved. She then underwent a radiofrequency facet neurotomy with complete alleviation of head pain ...."

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  12. Siegfried, would it be worth it to try any of these supplemental or alternative treatments?  


    "There are alternative medications that can replace indomethacin if needed, but unfortunately they are not perfect for treating hemicrania continua. Sometimes they can supplement a lower dose of indomethacin if that is all that is tolerated. Melatonin is a natural hormone with a chemical structure similar to indomethacin. A few people have had a complete response for their HC with melatonin alone, but more often they have been able to get relief with a lower dose of indomethacin while taking the melatonin. Alternative medications that may replace indomethacin, if it cannot be taken at all, include gabapentin, topiramate, verapamil, and cox-2 inhibitors (anti-inflammatories less likely to cause stomach bleeding). Even onabotulinumtoxinA, commercially known as Botox (Allergan, Irvine, CA, USA), has been tried in cases where other options failed or were not tolerated. Nerve blocks, injected at the back of the head on the same side as the pain, can be performed with long-acting anesthetics. Rarely, a nerve stimulator is placed with leads extending over the back of the head or neck, providing continuous low-level stimulation to the area."

    • Like 1


    This is a study of people who developed CH shortly after head trauma (with seven days).  
    (Nothing at this link that isn't here.) https://www.docguide.com/new-insights-post-traumatic-headache-cluster-headache-phenotype-cohort-study?tsid=5

    New insights in post-traumatic headache with cluster headache phenotype: a cohort study; Grangeon L, O'Connor E, Chan C, Akijian L, Pham Ngoc T, Matharu M; Journal of Neurology; Neurosurgery; & Psychiatry (JNNP Online) (May 2020)

    OBJECTIVES To define the characteristics of post-traumatic headache with cluster headache phenotype (PTH-CH) and to compare these characteristics with primary CH.

    METHODS A retrospective study was conducted of patients seen between 2007 and 2017 in a headache centre and diagnosed with PTH-CH that developed within 7 days of head trauma. A control cohort included 553 patients with primary CH without any history of trauma who attended the headache clinic during the same period. Data including demographics, attack characteristics and response to treatments were recorded.

    RESULTS Twenty-six patients with PTH-CH were identified. Multivariate analysis revealed significant associations between PTH-CH and family history of CH (OR 3.32, 95% CI 1.31 to 8.63), chronic form (OR 3.29, 95% CI 1.70 to 6.49), parietal (OR 14.82, 95% CI 6.32 to 37.39) or temporal (OR 2.04, 95% CI 1.10 to 3.84) location of pain, and presence of prominent cranial autonomic features during attacks (miosis OR 11.24, 95% CI 3.21 to 41.34; eyelid oedema OR 5.79, 95% CI 2.57 to 13.82; rhinorrhoea OR 2.65, 95% CI 1.26 to 5.86; facial sweating OR 2.53, 95% CI 1.33 to 4.93). Patients with PTH-CH were at a higher risk of being intractable to acute (OR 12.34, 95% CI 2.51 to 64.73) and preventive (OR 16.98, 95% CI 6.88 to 45.52) treatments and of suffering from associated chronic migraine (OR 10.35, 95% CI 3.96 to 28.82).

    CONCLUSION This largest series of PTH-CH defines it as a unique entity with specific evolutive profile. Patients with PTH-CH are more likely to suffer from the chronic variant, have marked autonomic features, be intractable to treatment and have associated chronic migraine compared with primary CH.

    • Like 1