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CHfather

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Posts posted by CHfather


  1. 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.<<   


  2. 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."


  3. 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!


  4. 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

  5. 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

  6. 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

  7. 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.

    https://jmedicalcasereports.biomedcentral.com/articles/10.1186/s13256-019-1986-y

    "....  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 ...."

    • Like 1

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

    https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf

    "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

  9.  

    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

  10. devon' is right. I was wrong. An M tank holds about 3000 - 3400 liters (not 1700, as I had written).  Divide that range by 20 and you get 150-170 minutes of O2 at 20lpm.

    • Like 1

  11. What the doctor wrote the script for is really irrelevant to your O2 use.  The lpm settings you use from the regulator that you put on the tank are the only factors that affect how much O2 you are using.  An M tank holds about 1700 liters of O2.  That means that if you use a setting of 20 liters per minute, you will have about 85 minutes of O2 in the tank (1700 liters in the tank being used at 20 liters per minute; 1700 divided by 20 = 85).  The higher your lpm settings, the faster you will go through the oxygen that's in the tank, but that is not affected by anything related to the script that the doctor wrote.

    • Like 2

  12. kat',
    This file has answers to your questions: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

    In brief: Typically, welding tanks are bought, not rented.  They have no reason to ask you any questions; there are no legal restrictions for getting welding O2.  If they do ask, they are just chatting.  In the file, there are some suggested possible answers if you are asked.  Plenty of women weld, or use welding O2 for other things, such as art projects. https://www.youtube.com/watch?v=TeaMj2m_Wj4   My wife and daughter both get my daughter's welding O2 regularly.  

    The flow rate is determined by your regulator, not by the type of tank you have.  Since you have an M tank, your regulator is the right kind for a welding tank (in my previous post, I was assuming you had a smaller tank).  

    Just as an unrelated note, the prescription for medical O2 can be written for 15lpm. That's how most are written.


  13. kat', sooooo happy to read this.   You want an M tank or an H tank (plus you want to keep your smaller tank for portability).  Those are the big ones.   The big tanks are heavy, so you might also want a stand, or particularly a rolling stand if you have to move them.  Now that you know more about O2 working for you, you can consider using welding O2, too, if your supplier is not cooperative.  Since they make more money when they provide you a larger tank (or tanks), and have less hassle from having to constantly replace the smaller tanks, you'd think they'd be interested.  

    If you get a bigger tank, or any kind of welding tank, you'll need a different type of regulator.  An O2 supplier will know this, but you'll need to know it if you go the welding route or if you decide to buy a higher-lpm regulator than the one the O2 supplier would give you.  Keep us informed.

    • Like 1

  14. 3 hours ago, bwunk said:

    my insurance won’t cover more than 9 pills a week.  So if I run out I am in trouble.  
     

    I need to ask my dr about oxygen. And I would like to try mm

    The pills barely work in any event.  If you ask your doctor about oxygen, s/he is likely not to give it to you. Lord knows why, but that's how it usually works. You need to insist on oxygen, and/or find a doctor that is competent enough to prescribe it.  For a bunch of stuff that might be helpful, take a look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    • Like 1

  15. 35 minutes ago, EggMan said:

    I’m pretty naive and ignorant to busting methods.  Do you have instructions or a link?  Are any methods “over-the-counter?”

    For basics, click on the blue "New Users..." banner at the top of any page.  Rivea corymbosa seeds (in most places) are "over the counter" in the sense that they are legal to purchase and possess, yet are very effective busting agents.  To discuss any of this further, you'd want to start a thread at one of the more private boards ("Share Your Busting Stories" would work, or "Theory and Implementation").

    • Like 2

  16.  

    2 hours ago, Rudolph said:

    I looked for benadryl in the UK but it has a different ingredient to your US version. The ingredient (dyphenhydramine) in your version is actually a sleeping pill here! So I decided to just try all the hayfever tablets I could and see which actually worked for me as it was pretty bad this year, I settled on 'piriton' which has chlorphenamine in it. Hopefully it hasn't been to my detriment taking it.

    Might not be any detriment.  But . . .  According to your NHS, "Diphenhydramine is also called by the brand names Histergan, Nytol Original, Nytol One-A-Night and Sleepeaze."  https://www.nhs.uk/medicines/diphenhydramine/#   Looks like maybe Tesco also sells it (??):  https://www.drugs.com/uk/tesco-sleep-aid-25mg-tablets-leaflet.html

    • Like 1

  17. Batch says that the average nmol/L for people who have been highly successful with D3 is 203.5, but the minimum that some successful people have had is around 85 nmol/L.  That's a big range, but you seem to be in the ballpark.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

    You should send Batch a message about the swollen knuckle.  He is very generous about responding.  His handle here is now xxx.  So, click on the envelope icon on the top right side of the page, then put xxx in the "To" line.

    When you say you don't take any other medication for your CH, does that include not having oxygen?

    Many people who have a hard time sourcing MM use rivea corymbosa (RC) seeds.  I think I might have read that they are now unlawful in the UK, but I feel like people were still finding ways of getting them. 


  18. I think everything is well covered here.  As I understand it, Batch's recommendation from 2017 is different from what he recommended in the 2011 post linked to by Siegfried. The 2017 one (which seems like it would seriously save O2) is here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/

    Here's what I understand him to be saying.  (1) For 30 seconds, hyperventilate using room air.  That's ten three-second deep inhale/full exhale events, deeply inhaling and forcibly exhaling during three seconds each time. He says, "On the tenth exhalation, hold the squeeze/crunch until your breath makes a wheezing sound for at least 3 seconds... or until you stop wheezing." (2) Then inhale a big lungful of O2 and hold it for 30 seconds, exhaling with a crunch.  (3) Then do another 30 seconds of hyperventilating with room air, followed by another inhale of O2 that is held for 30 seconds and exhaled with a crunch.  Although he's describing this in relationship to the "red neck bag," I assume there's no reason to think he wouldn't recommend it with an O2 tank and mask. You'd want your lpm setting to correlate with the one minute between inhales of O2, which I would think would mean that you could use a lower lpm setting. 

    You should read fully what he says here and at the other post. I just found it a little difficult to figure out the basics, which is why I summarized them here. He says in the 2011 post that you should stand up while doing this, leaning against a wall. Doesn't say that here, so I don't know whether he still thinks it important or no longer does.  

    • Like 1

  19. 1 hour ago, kat_92 said:

    Also I met with my neurologist today and he gave me 2 samples of emgality. I think I will steer clear of them for now. I have not read promising reviews from cluster heads.

    kat_', you might be making a wise and perfectly good decision about this. But do keep in mind that here and at other CH sites, people are there because things haven't worked for them. A few people have showed up here to say that Emgality, Aimovig, or some other medication of that type has helped them, but for the most part, people who find relief from something are not likely to be here, so the comments are skewed toward the negative, which might not represent the whole picture.  

    • Like 2
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