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CHfather

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Posts posted by CHfather

  1. Lots of people do it this way -- no prescription required: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

    Your PCP is probably wrong . . . For a long time, Medicaid didn't cover O2 for cluster headaches, but now it does, or at least it can.  This is a little complicated -- regional Medicare/Medicaid centers are allowed to determine whether or not O2 is covered for CH in their regions.  And of course, you'd need a prescription.  Welding O2, as discussed in that link, works fine, with no prescription needed.

    Since you are new to CH (we don't actually think there is such a thing as "cluster migraines," except maybe for a very, very small percentage of people), you might look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

     

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  2. 1 hour ago, Seattle cluster said:

    Not sure I understand why the bag would prevent o2 loss compared to my old mask which I believe had no holes so I was essentially just breathing straight 02

     

    2 hours ago, Seattle cluster said:

    my old mask which I believe had no holes

    I think if we are understanding your old setup correctly, you have what is called a "simple face mask" -- O2 was continuously flowing into the mask (not being held in a reservoir bag as the new NRB mask does).  If that's right, then once you had inhaled with the old setup, O2 was still flowing, but not doing you any good because you were either holding o2 in your lungs or in the process of exhaling.  With the bag, the only time you are actually using O2 is when you are inhaling.

    But I am confused, because a simple mask has holes in it (like the ones on your NRB, but on both sides) because that's where the exhale goes out.    Could it be that you had a demand valve system, in which the only time O2 flows is when you "demand" it -- when you start inhaling (or perhaps press a button)?  That would explain a lot (no bag; high effectiveness).

    If it is a simple mask in your old system, you aren't getting nearly as much pure O2 with that as you would with an NRB, because of the holes in the sides and also because you are rebreathing some of the CO2 that you have exhaled.

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  3. Some O2 thoughts.  (1) Your mask probably has a set of small open holes on one side.  Block those so that no room air gets in when you inhale.  (2) Some people find that when a tank is relatively low in O2 (maybe 1/3 full or thereabouts) O2 is less effective.  (3) If the bag is not full when you are ready to take your next deep inhale, your flow rate is too low. 

    As far as changes in frequency/timing/severity of attacks, many people do experience that. 

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  4. Well, there are triggers, in the strictest sense of that word.  For many, epinephrine (anesthetic used in dental work and other situations) will create an attack, in or out of cycle.  Nitroglycerine is used in experiments to trigger attacks in people who are not in cycle.  For some/many, alcohol will bring on an attack outside of a person's "regular interval" attack schedule while in cycle, to the extent that such regularity actually exists. (And maybe a little outside of a cycle, too -- seems like a lot of people who think their cycle has ended find out from the "beer test" that it isn't -- certainly at this point they are not having attacks at regular intervals, or they wouldn't think their cycle might be over.) 

    Overall, in the list you provided, maybe you're just naming things differently -- if something makes an attack worse and/or longer, or brings on an unexpected attack, I think we have put it in the category of a "trigger," but maybe it should be called a "worsener."  Whatever they are called, they are things to be avoided (in general, though not all of them for everyone). 

    I knew a person with CH who could drink anything alcoholic, any time including in cycle, and get not any effect on attacks.  I know a lot of people consider stress a factor, and I also knew a person who, like jon', had their longest attack-free period when under very significant stress. Generalizing about CH can be risky.

    Just for the record, I also know someone who stayed away from caffeine at all times except when in cycle to help directly abort an attack. It wasn't that caffeine drunk at other times would trigger anything, just that this person found that the abortive effect was stronger when that was the only time they drank caffeine.

    More importantly to me, I have to say that if you are having so many attacks, and some of them so long, maybe we can add some suggestions to the ones you have offered to provide.  Oxygen, as jon' says, being the first but not the only.  This file contains some suggestions that I gathered from this group's experience: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  

     

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  5. CHB, that indeed does not sound like a top-flight neurologist.  Was oxygen discussed?  You might want to look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/   And of course an MRI should be done, to rule out other situations.

    As for causes, I have to say there's not a lot of discussion of that here, either, though many theories get brought up.  Many people with CH remember having had head trauma, but many don't. Most people with CH smoke, but many don't.  Stress?  Psychological trauma?  Weather?  Cellphones?  All discussed.  But no one's gonna know a cause, and knowing it doesn't help much with treatment (some people find they benefit from keeping cellphones away from their cluster side).  

  6. This is what UptoDate, an online resource for doctors, says. You should read the whole article -- a lot of good info at the end: https://www.uptodate.com/contents/supplemental-oxygen-on-commercial-airlines-beyond-the-basics#:~:text=In general%2C airlines do not,rented through an oxygen supplier.

    "In general, airlines do not provide medical oxygen, but allow passengers to bring a battery-powered portable oxygen concentrator (POC) for use in flight. POCs that are approved by the Federal Aviation Association (FAA) can be purchased or rented through an oxygen supplier. Approved POCs will have a label indicating that they meet FAA regulations. Airlines may require notification of the need for in-flight oxygen at least 48 hours before the trip, making it necessary to undergo testing at least three days before travel."

    Here is a link to what TSA says, but it's really covered in the article: https://www.tsa.gov/travel/special-procedures

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  7. Since we're talking D3 here, you might want to consider the anti-inflammatory "full monty" that Batch has recommended in critical situations:

    QUOTING HERE FROM A POST BY BATCH:  "The Antihistamine Full Monty is a collection of supplements with antihistamine properties that include 3 grams/day each of Turmeric (Curcumin), Resveratrol, Quercetin and Omega-3 fatty acids.  It also includes 200 mcg/day Selenium, 8 grams/day vitamin C and 10 mg/day Melatonin taken at bed time. 

    I buy the bulk powdered vitamin C in 1 Kg bags and stir 2 level teaspoon measures in 8 ounces of water and take sips all day until it's gone by bedtime.  This is the least expensive form of vitamin C and dosing throughout the day is best as our kidneys filter vitamin C rapidly.

    I realize this is a boatload of pills to take, but the Full Monty is proving to be very effective in achieving a CH pain free response.  Most CHers respond to the Antihistamine Full Monty during the first week.  When you've experienced a sustained CH pain free response for at least a week, you can lower the dose of the first four supplements to 2 grams/day.  I'd stay at that dose for at least two weeks then taper the dose down to 1 gram a day.  You can skip the selenium and melatonin at that point, but I'd still take at least 4 grams/day vitamin C as it's so important for good health."

    Back to me:  Red eyes are definitely a possible Covid symptom.  You can just google [covid red eye] and see plenty of reports about that.  And severe headaches are also a common Covid symptom.  So it could be that that is what this is all about (fingers crossed).  I'd be careful about increasing your verapamil, for three reasons (these are not hugely strong reasons, so you might decide to do it anyway, but maybe they are worth considering). (1) it's generally not considered a good idea to increase verap dosage without a doctor's involvement; (2) while that level might not, or even probably wouldn't, affect busting, the lower the better just for better assurance of full busting results; (3) as with point (1), it's my general understanding that it might not be wise to go up a notch on verap dosage and then go down when the crisis has passed. 

    Could you do a SPUT (small piece under the tongue) if you get hit, or even as a possible preventive?  It's my understanding that one SPUT, just a pinch of MM, can stop or reduce an attack but won't interfere with an upcoming bust.  That could also be a chance you don't want to take, so I'm just throwing it out.

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  8. I don't think anyone can confidently answer this question, but it won't do you any harm to try.  And you can get seeds expressed to you from https://www.shamansgarden.com/p-251-rivea-corymbosa-seeds-ololiuqui.aspx   (Some years back, I asked three seed suppliers about storage. None recommended freezing; all recommended a cool dark place; all said that six months was probably the max before potency diminished.  However, I'm not really sure that they actually know, and it is of course in their business interest to put a shorter duration than might be true (if they know).)

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  9. Thank you for posting this.  All experiences are valued here, and it's great that you are feeling so good.

    There's a long thread about B1 here: https://clusterbusters.org/forums/topic/5417-b1-oral-high-dose-thiamine/, and I think @Bejeeber is, or at least was, taking that phosphatidylserine to keep his memory strong (maybe if I was taking it, I would remember this for sure), but didn't feel like it was helping his CH.  Maybe the combo of the three is doing the trick for you.  I hope it continues, and I hope you'll keep letting us know how it's going.

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  10. If it is migraine, you would think that the rizatriptan (Maxalt) would help, since that's what it's for.  It NOT a cluster headache medication (or at least not a first-line CH med).  Not saying it isn't migraine, of course, just observing.  

    I will jump to my usual possible diagnosis (NOT a doctor) of some form of hemicrania.  The eye droopiness and watering are symptoms of hemicrania, and the continual pain with occasional explosions could fit, too.  Hemicranias are typically resistant to triptans (although it's possible that the "painkilling shot" that helped you was a triptan, and as I've said, rizatriptan pills typically don't help CH in any event, so that isn't much of a test).  Here is some information about one form of hemicrania: https://www.webmd.com/migraines-headaches/hemicrania-continua-symptoms-treatment   Another is paroxysmal hemicrania, which you can look up.  A "good" thing about hemicrania is that there is a highly reliable preventive, Indomethacin.

    There isn't enough info right now to do anything but guess and be sure all the options are being considered.  I am just providing this information so you can be sure you and your doctor is considering/aware of all the options.  For all I know, it could in fact be sinus-related and/or Covid-related.

    You might want to look over this file, just in case -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- and maybe you'd want to try some strong coffee or an "energy shot" such as 5-Hour Energy, since those typically help reduce CH pain.

    Doctor oddities appear much too often: In this case, diagnosing CH (that's a good thing, if she is correct) and then prescribing a migraine medication that is explicitly not for cluster headaches (https://www.mayoclinic.org/drugs-supplements/rizatriptan-oral-route/description/drg-20065868#:~:text=Rizatriptan is used to treat,group of medicines called triptans.).  If this painful situation continues for you (I hope/we all hope it doesn't), you're likely to get the best diagnosis and treatment at a headache center. 

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  11. 15 hours ago, BoscoPiko said:

    Ditch the concentrator if a cluster head.  They mix normal air with the pure o2 that you need to effectively abort. 

    Yes, and 10lpm is generally too low, or even way too low, for the most effective abort.

    I always worry when I see concentrator that other wrong equipment might have been supplied.  Do you have a non-rebreather mask (it has a bag that fills with O2 and then empties when you inhale)?

    • Like 1
  12. 1 hour ago, NickMirk said:

    I can keep you all posted if you are interested.

    Heck yes, we are interested.  First, because if you have CH, we want to help you prevent and manage it so it has the least possible impact on your life -- in ways, including busting, that virtually no doctor will tell you about (as jon' suggests in his post).  And second because a large portion of what we know here we know from the people who come here.  CH is tricky and constantly changing, and probably never the same in all aspects from one person to the next.  It's all "citizen science" to really come closer to understanding what happens, why/when it happens, and what works to prevent it and manage it. One reason you're not getting many direct answers to your questions about first attacks and subsequent ones is that it varies from person to person. Some people have CH, boom just like that. For others there are "light" episodes or just single attacks.  And sometimes that's all there is, and sometimes a full cycle might come on pretty soon or it could be years before another one.  I don't blame you for worrying and wanting more clarity, but I feel pretty sure there is no direct answer to your questions about what might be next (if anything). 

    We are even interested if you have no further attacks, so do let us know.  We'd be happy for you, and it would be another data point for us. 

    If you want to be proactive just in case, you could take a look at the D3 regimen (in the ClusterBuster Files section).  It's probably good for you no matter what, and even if you start it at a lower level, you'll be building up your system with a very effective preventive.

     

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  13. Nick, here is something you might read to have a sense of the CH "landscape": https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  (the reference about "busting" that others have pointed you to is included at the end of this post, if you haven't looked at that yet).  You won't fully understand it all, and you surely won't remember a lot of it, but you'll know it's there. (I'd look at the replies, too.)  Some of the info might help you for your doctor appointment, and at the least you will have the understanding that there are many ways to treat this condition. 

    It's possible that you'll never have another attack, or that you won't have one for years.  Probably the most practical thing you can do right now in case of another attack is to have a few containers of energy shots (e.g., 5-Hour Energy) or energy drinks (e.g., Red Bull) on hand.  Particularly for people in early stages, these can abort an attack or significantly lessen its severity.  For some people, even a strong cup of coffee helps.  Most people find they can drink them at night and still get back to sleep.

    As spiny says, stay away from alcohol, the #1 trigger (for most people).  (If you do have CH, this isn't a lifetime alcohol ban -- most people can drink when they are out of cycle (though many choose not to).  There is a file here -- https://clusterbusters.org/forums/topic/4568-triggers/ -- with more info about triggers, but you don't need to stop doing everything on that list.  Two things many of us think of when there's a sudden attack: MSG and dental work.  Did you have either of those in close proximity to the attack you experienced?

     

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  14. It would be foolish for me to say it's nothing to worry about, but . . . 

    "White matter lesions are among the most common incidental findings—which means the lesions have no clinical significance—on brain scans of people of any age." https://www.brainandlife.org/articles/what-are-white-matter-lesions-are-they-a-problem

    My daughter's first MRI for CH, more than ten years ago, showed some WMLs.  Nothing bad has happened to her in that regard.

    People with migraine have white-matter lesions more often than other people.  Imma guess that's probably true for people with CH, too.  

     

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  15. jon' has covered the bases very nicely (as always).

    A doctor who thinks anyone's current cycle is going to be like their last cycle doesn't have much familiarity with CH.  (I'd say the same about a doctor that doesn't prescribe oxygen.)  You might benefit from getting to a headache center, if there's one near you.

    You might want to look at this overview, which has a lot of info about a lot of stuff, including ways to possibly stop hits without oxygen, and things you can try for shadows.  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

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  16. There hasn't been much commentary here about "standard" HRT (hormone replacement therapy). I do remember one prominent member saying it had no effect on her CH.  You can search for HRT (using "hormone replacement" as the search phrase) using the search bar at the top of each page.  I know there will be a lot of comments from MoxieGirl, but her HRT was part of a male-female transition, so probably not relevant.

    Regarding shadows, here's a little from a post in the ClusterBuster Files. Ginger seems to be the most effective go-to for many. There is probably other advice in other posts. 

    "Some people find that standard headache medicine such as ibuprofen helps with shadows, some find that caffeine helps (and Excedrin migraine tablets include both a headache med and caffeine), and some find that oxygen helps.

    Ginger seems to help many people (some also take it as a possible preventive). Tea is one way to take it. Slice or grate a bunch if it (maybe a tablespoon if grated; more if chopped) and simmer it for 10 - 20 minutes in a couple of cups of water. It should feel really strong when you drink it.  You can add honey, sugar, etc.  You can buy ginger tea, but make sure it’s real ginger.

    Crystallized ginger and real (strong) ginger candy are also good.  Candy from Ginger People is strong.  You can make your own crystallized ginger candy. Someone once posted “Ginger and honey on toast. Yum!” There’s apparently a Nut Bar that contains ginger and sugar. Ginger beer (non-alcoholic) has worked for some people."

    Can you get RC seeds (rivea corymbosa)?  Legal to purchase and possess, but often very effective for busting.   Are you doing the D3 regimen?   As you might know, allergies (even ones you don't notice) can really kick up CH activity at unusual times.  Have you tried some Benadryl?  We can say more about these or other options, depending on your responses.

     

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  17. Jeri,

    Batch, whose handle here is xxx, has written a lot about mast cells. (Here, for example: https://clusterbusters.org/forums/topic/9176-microdosing-to-stop-an-attack-small-piece-under-the-tongue-questions/page/2/#comment-81167).  I have never paid much attention because I didn't need that much information to trust that his suggestions were going to help, as they always do.  Maybe there's something here that meshes with what you have found.

    I can also note that several of the EDS symptoms (though not all) are also true for my daughter (who has CH).  Unstable joints, bruising easily, some joint hypermobility and clicking.

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