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Posts posted by CHfather

  1. 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.

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  2. 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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  3. 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."

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    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.

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  5. 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.

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  6. 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.

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  7. 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.

  8. 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.

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  9. 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/

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  10. 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").

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    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

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  12. 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. 

  13. 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.  

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  14. 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.  

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  15. I guess it's late, but any chance of getting a prednisone taper for your trip?  For most people it will stop attacks at least part of the time while you're on it.  Seems like that would be safer than driving while aborting.  It will also give the D3 more time to ramp up.  It can take a while, weeks or even months, for D3 to get up to therapeutic levels. 

    You seem like a wise and knowledgeable person, so the rest here is just in case . . .  (and I might not have read carefully enough, so forgive me where I'm wrong)

    Batch has talked about not driving while taking those Benadryl doses. Maybe you're not significantly affected by them.  If you decide not to take them while actually on the road, considering going with 50mg at night.

    You don't mention energy drinks/energy shots/coffee as you start on the O2.  Maybe you are using them, or maybe you've had some kind of issue with them.

    I think you are surely aware that higher flow rates can be helpful for aborting. Even with your good O2 results in the past, you never know with CH.  As you know, the issue is to be able to take full deep breaths and have the bag be full when you're ready for the next one.

    You can send a PM to Batch, and he'll almost certainly reply promptly.  His username here isn't Batch anymore, it's xxx.  Go to the envelope icon at the top of the page and type xxx into the "To" line.  Don't tell him I sent you (inside joke).

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  16. Phantom, just a note that if there's a topic you're wondering about, you can search for it using the search bar at the top right of each page.  I'm not saying that you shouldn't ask questions, but sometimes you can get a lot from a search, too. 

  17. Flunarizine can't be prescribed in the US (or Japan) because it seems to create "movement disorders" related to Parkinson's disease.  https://www.nature.com/articles/s41598-018-37901-z

    There was a time when it was also banned or limited in the UK -- not sure whether that's still true.  It does seem to be effective as a migraine treatment, but maybe not more effective than other calcium channel blockers with less risky side effects.  

  18. On 6/25/2020 at 12:07 PM, dehabel said:

    Batch told me to take Vitamin C with the D3 regimen. 

    For treating your CH or as a defense (in his view) against coronavirus?  He was big on the latter, so just checking.

  19. Acupuncture is almost always ineffective.  I think a few people have benefited from it.

    WHY do neurologists keep finding reasons not to prescribe O2.  It might be difficult to get it approved by insurance, but with most private insurance companies that battle can be won, and sometimes there isn't even a battle. Medicare and Medicaid won't cover oxygen.  Also, having a prescription allows you to pay the O2 provider out of pocket if that's a necessary way to go. 

    3 hours ago, Phantom99 said:

    Is it possible to buy it without doctor’s prescription? 

    If you read the post I linked you to, you'll see the answer to this question (which is yes, by using welding oxygen).

    3 hours ago, Phantom99 said:

    I will try high dosage of D3. 

    Be sure you do the whole regimen, which is more than just high doses of D3.

    3 hours ago, Phantom99 said:

    Surprisingly what also helped me in past is breathing cold air just before headache gets strong. It could help abort it. 

    Yes (see the post I linked you to).  Cold air can help.  If it's cold outside, that's one way. Others inhale from an air conditioner or open freezer.  If that helped you, O2 will be great for you.

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  20. Here's some basic info about treating cluster headaches (it does sound like that's likely to be what you have).  Among other things, there's a link in here to the D3 regimen, which the previous posters recommended (for good reason).  You should start the D3 right away.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  Check out the "Triggers" link, too.

    I have a slightly different view regarding the Topamax.  Yes, it is not a first-line CH treatment.  So, if you can get a revised set of prescriptions quickly (something like oxygen, a nasal or injected triptan, verapamil, and maybe a course of steroids), those (or something like them) are your best bet.  You will also see in the post I linked you to some strategies for dealing with CH without prescription meds (energy shots or caffeine;  "busting"; Benadryl; standing in very hot water; and some others). But there are some people who take Topamax without severe side effects, and it helps them.  So if you are going to be without the better prescriptions for a while and the non-prescription methods aren't helping enough (D3, for example, can take several weeks to get to effective levels), I would consider taking the Topamax and seeing how it affects you.  If you don't want to continue it, you can stop.

    Incidentally, if you want to look into posts on a topic, you can use the search bar at the top right of the page.  You'll find lots of information that way.

    • Like 2
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