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Mle

Hi all, so happy to have found you!

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Hi, I'm about 2 months into a cycle. I've had these ugly head monsters for 15 years, started when I turned 30. I also have multiple sclerosis, diagnosed 4 years ago. I get cluster groups once or twice a year that last around 2 months give or take a couple of weeks. Oh, I'm also a woman. I think that's all the basics out of the way. I'm so amazed by this website!!! Congrats to every member for all the encouragement and advice. Last time I tried a website support group was around 10 years ago, not such a great experience so I didn't try again until today. I'm here to share what I know and ask about some stuff I've seen so here goes....

OXYGEN: This is my primary go to fo sho. Ten years ago someone mentioned oxygen on the support group but I couldn't get a doc to supply what I needed. So I suffered another 3 years until I met my husband. He brought home a emergency oxygen tank from the workshop (he's an engineer). Blew my mind that it worked!! That's when my initial battle with docs began. I could give a huge rant but please, if you suffer from headaches, fight your doc or get a new one!!!!!! Go between cycles if you can and get set up!!! Getting the oxygen wasn't bad after fighting threw two docs, but getting the equipment to go with it was an on going challenge. I was able to get a script for Apria to deliver o2. Apria is a pain in the ass but the drivers are actually good guys, in my experience and definitely know more than anyone you'll get on the phone. So first get some tanks and take whatever regulator and tubing they'll give you. Next, go on Amazon and buy the right regulator. You will need a high flow regulator that opens to 15ml and high flow tubing. Very important!!!!! Never attach oxygen to your face at a high flow. Hold it under your nose, so if by chance you fall asleep the oxygen will fall away from your face!!! This method is for short term use and is why your doc and Apria will fight you on getting the equipment but in my opinion, the only way oxygen is super effective. If your oxygen is covered by insurance, keep the script current! It's worth paying the copayment every month so when you need the o2 its there.

Now, I have questions if anyone has some experience in the following I would so appreciate to hear from you.

Shrooms?? How much vitamin d3? Does melotonin work and how much? Caffeine and how much? When I exercise vigorously it seems I can bring on a ch in about 30 minutes after, anybody else? Anyone have multiple sclerosis also?

I' ll be so grateful for any responses and I'm happy to share in more detail any of my experience if anyone would like to know. Thank you all again.

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Thanks, Mle!  Great advice.  Glad you fought that fight for your O2.  So ridiculous that so many have to -- or don't even learn about O2.  First, some answers to some of your questions:

Shrooms?? Not sure exactly what your question is here, but you can read plenty about using psilocybin mushrooms (and other "psychedelic" substances) to treat CH in the ClusterBuster Files section of this site. Maybe 1, 3, 4, 5, and 6 will give you a good start.  Just skim if you have to, and then ask away.

 

How much vitamin d3? The "D3 regimen" is here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ It's a whole thing to do, not just taking D3.  It really has helped lots and lots of people.

 

Does melotonin work and how much?  Works well for some people.  The general advice is to start at 6-9mg/night and adjust from there.

 

Caffeine and how much?  Definitely helps most people reduce the severity of an attack, or even sometimes abort them.  Drink it down at first sign of an attack.  Energy shots, such as 5-Hour Energy, are preferred by many because they have plenty of caffeine (more than a cup of coffee and more than many full energy drinks), and because they also contain taurine, which some people think is also helpful. I'd say most people like them quite cold.  Some people do okay with a strong cup of coffee.  You can get shots/drinks with very high amounts of caffeine.  Some people are quite fond of them, others don't find they need that much.  I'd say the split is maybe about 50/50 between people who say they can get back to sleep with no problem after aborting a nighttime attack with a shot/drink, and those who have more trouble getting back to sleep.

 

You're not the first person to say that vigorous exercise can bring on an attack.  It's not universal, but quite common.

 

A thought: These days, more people are going to higher flows of O2 (25 lpm or more), which allows them to breathe effectively and not have to wait for the bag to fill up before their next inhale. Reduces abort times for some.  

 

And . . . I'm not sure exactly what you're saying about the mask, but, yes, not using the strap, and just pressing it against your face with your hand, will eliminate the risk of falling asleep with the mask on. If you don't have this mask (or the earlier version, which was called the Optimask), many people say it also cuts down abort times: http://www.clusterheadaches.com/ccp8/index.php?app=cms&ns=display&ref=splash(It also has a nice breathing tube so you don't have to use the mask at all if you don't want to.)

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Thank you for getting back to me. I feel a little foolish, I was so excited from reading all the conversations, I didn't check out the whole website before I jumped in with my questions. I've since read all the info, wow. As far as the oxygen, I've been using a nasal cannula. That way I can direct the flow to literally blow up my nose with force. I found that it work faster than the mask and I don't have to have the regulator up to 15 unless it particularly bad. Only down fall is it dries out my nose fast, but that's such a small issue compared with the relief. However, I will check out the Optimask, I'm all over having and trying anything.

Another question I have is altitude. I live in Colorado for the past 20 years. My husband and I have been considering moving closer to family in New Hampshire. Have you ever heard of cluster headaches being helped by moving to lower elevation?

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Just another note that I thought I should mention. Unrelated to ch, I was taking 10,000 d3 for my multiple sclerosis directed by a neurologist. That particular year, I didn't get ch. I changed nearologists concerning my ms and he reduced my d3 to 4000. And now I'm back to ch. Hmmmm, I'm going to follow the d3 advice, at least while I'm in a cycle and see what happens. I'll let you know.

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Fascinating, about the cannula, but kind of puzzling to me.  I think it's fair to say that most people get very little benefit from the cannula, which I had assumed was because the air flow is so constricted.  Of course, you can cause the O2 to "blow up your nose with force" by inhaling through your nose with the mask on, can't you?  Even more force, I would think, but maybe not.  You can buy a humidifier, sometimes called a "bubbler," to hook into your system so the O2 is less drying.  You don't have to get the O2 in through your nose, though some people think that works faster.  The mouthpiece is very effective for many people, and there's no nose-breathing involved with that.  With a good system and good breathing, you should be able to abort most attacks in less that 10 minutes.

 

You have to keep an eye on your D level when on that regimen, to make sure that the level doesn't get too high.  If your doc took you down to 4000IU because you were too high, you'd have to be careful.  Since practically nobody is actually too high at 4kIU/day, I'd guess your doc was just doing a doc thing . . . but be sure to check.

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Wow, that's interesting about the cannula. I used to use a mask, but I was chatting with the Apria delivery guy and he said that I had the wrong hose that only let 4ml come through the tubing which would explain the hissing sound and I would need to hyperventilate to have it work. Sometimes the ch would be gone in 10 to 15 if I caught it early, but sometimes I would need a half hour or it never fully went away but made the ch hurt less. He gave me "high flow tubing that allows 15ml through" but it came with the cannula so I went with it. So what I do is breath in through my nose and out through my mouth. Sounds like I'm doing the opposite of the mouth breather. But I did like the mask because it didn't dry my nose. I'm going to order the mask you recommended and I'll let you know how they compare.

As far as the d3, I'm going to let my neurologist know that I want to up my d3 just while I'm in a cycle to see if it helps. Keep him in the loop. I really like him because he works with traditional therapy but also is very open to nontradional therapy as well, as long as it's not harmful. Good guy if you know anyone in the Denver metro area who needs a neurologist.

Also, have you heard of putting capcasin in your nose on the side of the ch. my oxygen delivery guy said he had a friend who snorted tabasco, yes Tabasco sauce, a couple times and stopped her ch cycle. I looked it up and apparently there was a study done where people put capsaicin in the noses to see what happened. After 5 days they hardly felt any pain. It was believed that the nerve that causes the ch pain had dumped all its pain causing juice and it takes a couple weeks to build up again. Anyway, my description is lame but you can look it up. And yes, I snorted Tabasco, which I do not recommend obviously. I was dripping Tabasco sauce for 12 hours. It was awful. Then I did some reading, which I need to do first more often, and found that small amounts of capsaicin put on a qtip would work. I did it for a few days but then had a massive ch episode. I had so many ch in one night I lost count and then a few during the day, so I stopped. Now I wonder if, like people mentioned with mm that they might get worse before they go away. Anyway, do you have any thoughts on this? I'm sorry to keep pestering you with questions, it's just that I've never had anybody who has had a clue into what this is like. Now that I have ms, the ch makes my ms fatigue so awful. I just start to feel a little crazy. I try to stay as positive as I can because I know how hard it is for my husband and son to watch me struggle, but sometimes it's so hard not to feel so damn angry, sad, frustrated.

With that said, I also thought of something else. My neurologist just upped my antidepressant celexa to 40mg. Have you heard of antidepressants making ch worse?

Thank you for your patience, I can't tell you how helpful it is just to have someone answer a question!

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Yes, there was a big capsaicin craze a while back.  I can only say that I have never actually heard of anyone who found that the relief was close to being worth the discomfort.  Even though CH treatments haven't progressed nearly as fast as they should have, I think a lot of the strategies--virtually all developed by people with CH, not by the medical profession--have made it less necessary to resort to crazy s--t to deal with CH.  Those strategies would include effective high-flow oxygen, energy shots/drinks, and the D3 regimen, as well as melatonin for some, and other awarenesses, such as staying away from MSG, which is a big trigger for many people, and of course busting.  (Speaking of MSG, lately there have been a couple of people here who have reported substantial benefit from a low-histamine diet.)

 

Your O2 situation is unfathomable to me.  Someone better informed than me might be able to figure it out. You do have tanks of oxygen, right, and not a machine that makes oxygen from room air?  Why would they give you a mask with a hose that only let 4 lpm through?  You want to get a decent mask quick.  If you don't order the "ClusterO2 kit" mask right away, just go to amazon and order one non-rebreather mask. If you have Prime (or if you pay a little extra) you'll get it in a couple of days. Or for that matter, demand that Apria give you a non-rebreather mask with proper tubing, for God's sake.  That's their freaking job, which you are paying them for. I'm not sure how much I would rely on your delivery guy for help and advice -- Apria ought to have some kind of respiratory specialist on staff who knows something, or is willing to learn something.  I'm not sure I really like your neurologist, either, if you have described any of this mess to him and he hasn't corrected you, or stepped in to correct the situation.  Speaking of your neurologist, are you taking any kind of preventive -- typically, that would be verapamil.  Of course, I don't know how the classic CH meds interact with your MS or other conditions you might have, but typically the first-line pharma response to CH is (or should be) oxygen as an abortive, verap as a preventive, and injected sumatriptan (Imitrex) as a backup abortive.  A steroid taper helps some people.

 

It's generally believed that one needs to do the full D3 regimen, as listed in that file I linked you to.  Don't do only the D3. There's something about absorption and secretion that's affected by the other elements.

 

You understand that whatever I say here is just my observations, although they are observations based on having read well over 10,000 posts here over the past however many years it is, and participating some at other boards. With anti-depressants, there always seem to me to be a roughly equal mix of "helped me," "no effect," and "made it worse."  That's actually true for lots of things, all kinds of meds.  People often say that CH is so tricky that way, that something that works for one person won't work for another, but I have to say that I also attribute it to the perfectly understanding hypervigilance of people with CH and the unpredictability of the damn attacks themselves, so there's a lot of attribution of effects that is real for the person saying it but not necessarily more than anecdotal information.  Oxygen, on the other hand, works in more than 90% of cases when it's done properly, and I would give the same success rate for Imitrex, and darn close to it (at least in terms of reducing attack severity and frequency) for D3 as a preventive and energy beverages as abortives.  I'd say busting might be 75% effective (or at least it can take some time to find the right busting substance), and verapamil is pretty darn effective although high doses can have substantial side effects.  Unless I'm forgetting something, in my view the rest is pretty much a crap shoot -- indeed some things work for some people and some for others.  And with these you're getting into pretty substantial side effects, too: lithium, gabapentin, topamax . . .

 

Two last thoughts: (1) A few people here have said that putting their feet into a bathtub with very hot water in it helps them abort their attacks; and (2) As much as I hope you stick around here, you should know of two other places where you can get good information and advice. One is www.clusterheadaches.com, where meds and non-busting alternative treatments get discussed pretty well, and the other is the Facebook group, Cluster Headaches. That's a closed group, so you have to request to join, but we can probably help you if that process is slow.  I'm not very fond of the Cluster Headaches group, because in my view there's a lot of opinion being presented there as sound advice, but the people are generally very very good-hearted and there's a lot of really nice emotional support.  Both here and at clusterheadaches.com, the search bar at the top of the page can lead you to some interesting stuff.  (As you've noticed, this site is pretty empty these days.  Seems like most folks have migrated to Facebook.)

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I read your post and appreciate your outrage on my behalf, but I can only muster a sigh. I could go into all the absolute nonsense, the heated calls, the begging, the absolute callousness of the medical community but I'm sure it nothing you haven't heard. I found the only way to get things done is to be your own advocate and that often means getting what you need when your various doctors fail time and again. My neurologist is relatively new to me because the past three neurologists were assholes. He is one of the best in the field for multiple sclerosis, but I haven't gone through a cluster cycle until now. He doesn't take insurance because for $200 you get his full attention for over 2hours. I didn't make an appointment with him for cluster headaches because I really dont think he can do more than what I already know. Next appointment though I'll ask about verapamil and imitrex. I'm already on ms medication and there might be conflict but we'll see.

I don't know if you've dealt with Apria before but it's amazing the incompetence. I've got a 7 year history but I'll just give you the latest. Called in for oxygen and another high flow regulator because mine sprung a leak. Mind you, this is their high flow regulator. They said I needed an updated script for the regulator but could still deliver o2.(????) I called my md who knows I have a history of ch to get the high flow regulator. They act like they have never heard of such a thing. I educate the nurse, which seems like the docs job but whatever. She calls it in to Apria and let's me know. I give it 24 hours,knowing how Apria works. I call Apria and they say it will take at least a week to process. When I try to explain my situation (for the hundredth time), I was told they don't carry high flow regulators. I'm used to this, if the people at the call center don't know something, they will lie to get you off the phone. That's when I order from Amazon which delivered in 24 hours. Gotta love Amazon. But it gets better, 10 days after this conversation, I get a call from my doctors office saying they're still trying to get the regulator, but Apria wants to know how many hours a day I use it. This is why I don't even try anymore. I simply don't have the energy. I get what I need AROUND and INSPITE of the so called medical community. And the really sad part is that these are the best docs I could find.

I'm on all the advice you've given and so incredibly grateful to you!

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I once saw a Facebook post (you've probably seen these) that said something like "Don't confuse your google search with my medical degree," and I just flipped out.  My blood is rising just typing that.  I don't mind so much that docs don't know about CH, but that they time and time again won't bother to even look it up, and that they won't prescribe O2 because, basically, they don't know how to write the prescription . . . Oh boy, here I go.  I don't know whether this JAMA report might help you with an O2 supplier or doctor or nurse at some point (I did help me with our supplier, which was not Apria): http://jama.jamanetwork.com/article.aspx?articleid=185035

 

I know that many people with CH just give up, and I really admire you for not doing that.  It isn't just the frustration and exhaustion with the medical community, it's that what they get doesn't work, and it's so heartbreaking. You can only get your hopes up so many times.  I really hope that what we've discussed will help you.  You sure as heck deserve it.

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Hi again, Up in the middle of the night again. Had a few days reprieve and thought I might be done with this cycle. Nope, two biggies in a row. Ugh I have been looking for the right mask/tube combo. On this sight they're out of the cluster kit and I tried Amazon but I can't tell what will work. If you get a chance, would you please look on Amazon and let me know what I should order. I know that's a big request but I would really really appreciate it.

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I would think that any of the masks on this Amazon page -- https://www.amazon.com/s/ref=nb_sb_ss_c_2_10?url=search-alias%3Dhpc&field-keywords=nonrebreather+mask&sprefix=nonrebreat%2Caps%2C212-- should work fine. (Since external links didn't work here yesterday, I'm talking about the page you get when you type [nonrebreather mask] in health, household and baby care.)  If you have Prime, then get the Prime one.  The reason for the very high prices that are listed on some is that's for a case of them.  When you get the mask, you're going to tape over any open holes and remove the strap.  If you have a small face, maybe you'd want a pediatric one.  Since they're not very expensive and you want it pretty urgently, maybe you should buy a couple of different types???

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what a night, my head feels like I've been in a boxing match. Thanks for the great info, I'm on it. Oh, by the way, I can't remember where I saw it but you can use a cannula as a mouth breathing tube. My saving grace last night. Just thought you might like to know. Thanks again. (Yes, from nose to mouth, ewwww, ha ha)

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