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CHfather

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Everything posted by CHfather

  1. CHfather

    Nothing seems to work

    Among his thoughtful and excellent suggestions, F'T' made that one about ginger. I'd be surprised if people chew fresh ginger -- but maybe they do. I'd love to be corrected. I'm most familiar with suggestions for strong candies that are made from real ginger (The Ginger People make some), candied ginger (with a sugary coating), or ginger tea made from fresh ginger. Although these are typically more recommended for shadows, there are people who have gotten some abortive benefit from them for attacks.
  2. CHfather

    Nothing seems to work

    Very sorry to read this, brs'. The only substantive suggestions I can make are (1) to start the vitamin D3 regimen ASAP (http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708); (2) to be sure that your oxygen system is optimized (at least 25 lpm flow rate and the "ClusterO2 Kit" mask that is designed specifically for CH); (3) perhaps to try melatonin at night, starting at about 9mg and working up as needed); (4) to try Benadryl 25mg 3 times a day and 50mg at night (probably not taking both Benadryl and melatonin at night). Severe CH outbreaks seem to sometimes be associated with allergies, even if you're not aware of those allergies; and (5) try an energy shot such as 5-Hour Energy at the first sign of an attack. #3 - #5 seem so trivial in the face of what you are dealing with that I have been hesitant to bring them up, but it's what I can think of. Wish I had more, and I hope others will. Do you think it's possible that you have developed another kind of "headache"? It's so rare that none of the standard things are working -- Imitrex, steroids, O2, etc. There is the CH "lookalike" condition, hemicrania, that is not usually successfully treated with those things but is responsive to the drug indomethacin. That might be worth looking into. There have been people here who have both CH and some form of hemicrania. I hope things get better for you soon, and again I'm sorry to not have more to offer. The D3 regimen has been very effective for many people, and the fellow who formulated that regimen, Batch, is a great guy who would be completely willing to help you with doing it.
  3. CHfather

    Newbie looking for any advice on obtaining O2

    Thrilling. Good for you for hanging in so well! When you get the prescription and you know who the oxygen supply company will be, I strongly recommend that you call before anything is delivered to you, to be sure they understand what a CH patient needs. Most of their customers are folks using low-flow O2 and nasal cannula, maybe from a concentrator (a machine that makes O2 out of room air), and they might try to give you some or all of those things. Your prescription is fairly likely to specify 15 lpm and a non-rebreather mask, and those are things you want (if you can get higher lpm or even a demand valve system, that would be great, but unless they're prescribed, you probably won't get them). The prescription probably won't specify how many tanks and what sizes. You will want at least two tanks, at least one large one (an "M" tank or an "H" tank), and at least one smaller one for portability (most likely an E tank). As I mentioned in a previous post, these different size tanks require different regulators. It seems safe to assume they will know that. As I also mentioned previously, you will want some kind of stand to hold your O2, preferable a rolling one. You might get by fine with the standard non-rebreather mask (you will want to modify it a little by blocking the circle of open holes there might be, and by cutting the strap so the mask falls off if you fall asleep). On some masks the circles of open holes have a gasket behind them. You don't have to mess with that. But on many, one of the circles is just open hols. You block it, with tape or with your thumb, so that when you inhale you aren't getting any room air. You would be wise to order the "ClusterO2 Kit" mask, which is specifically designed for people with CH. http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit Finally, when they deliver it, have them set up the large tank and show you how to use it (if they know -- they might well just be delivery people). But at least make sure it works. When my daughter's first medical O2 was delivered, they didn't tighten the regulator or provide her with a wrench, so we had to run out and buy a large wrench before it would work properly.
  4. CHfather

    coming off high dose Topiramate advice needed

    Sorry it's a normal-person 8. I hope NOTHIN' was the correct diagnosis. Wish we all hadn't learned to have so little confidence in doctors. No one's ever interested in my stories of why I give a low pain rating to something that's very painful. (As you know, I don't have CH, but I've had some very severe pancreatitis, which is up there on the non-CH pain scale. Because my pancreatitis was caused by MSG, I kept getting it over and over again until I finally figured out the cause myself, many years later.) 'Nuf about me -- hope you're feeling a lot better soon.
  5. CHfather

    coming off high dose Topiramate advice needed

    What were you doing in the hoss-piddle, jon? I don't like reading that.
  6. CHfather

    Newbie looking for any advice on obtaining O2

    muggle, many thanks for the information. I hope the melatonin keeps helping you. Of course, from what we have seen it's not at all impossible that the nurse practitioner's daughter has never been prescribed O2, either! But you would think that with a medical professional in the family, someone has actually bothered to look something up, so it seems like there's a good chance she will be knowledgeable about O2. If you click on "Download PDF" here -- https://jamanetwork.com/journals/jama/fullarticle/185035 -- you'll get the full O2 study, which you could print out and bring with you. Hope it goes great!!
  7. CHfather

    Newbie looking for any advice on obtaining O2

    A lot of folks report good results. Melatonin is low in people with CH during their cycles. How much did you take, and, if you don't mind, what kind--chewable, under the tongue, or just swallow it? You are right to ask about reusing needles. I have read -- I'm not any kind of expert on this --that they get dull quickly, so the injection can hurt a little more, and they can cause a local infection. I have never heard of either of those things happening with one or two re-uses of the Trex needles. I have also read that it is not wise to clean the needle with alcohol (as one might be inclined to do) because it removes the silicon coating that helps the needle slide in smoothly. The tradeoff seems to be between the apparently small risks of reusing needles and the effects of repeatedly injecting 3 or 4 unneeded mg of Trex (not to mention the cost).
  8. CHfather

    Newbie looking for any advice on obtaining O2

    Just one more note about welding O2, and then a couple of other things. Welding tanks come in many different sizes, always (at least as far as I know) measured in cubic feet of O2. The bigger the tank you can handle, the better off you will be, but they get pretty unwieldy above 80 cu ft. So what you get depends in part on what you are able to lug. (You have to bring them in to get them refilled.) Denny has a giant one (welding tank, I'm talking about ), which I think is about 250 cu. ft. 120 cu ft is large and heavy, weighing at least 50 pounds when it's full. In any event, you will want to get a rolling stand, but that of course is essential if you are getting a big tank. We (my daughter and I) have found that having two 60 cu ft tanks was most manageable for us. Over time, we have added more tanks until we have a pretty large collection of them. Remember that you also want one or two smaller tanks (20 or 40 cu ft) for portability (to have in the car, for example). You'll also need to buy a regulator and a mask. Unlike medical tanks, where smaller tanks use one type of regulator and larger tanks use another type, all welding/industrial tanks use a CGA-540 regulator. [Gosh, I just realized that I posted a whole thing about all this over in the ClusterBuster Files section. I'm just going to link you to that. It has everything I was just going to say. https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/?tab=comments#comment-56717] In addition: You should be doing the vitamin D3 regimen, which you can read about here: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 You can split your sumatriptan injections. Most people don't need more than 2mg, 3mg at most, and the standard autoinjector is 6mg. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  9. CHfather

    New cluster headaches

    In general, oral medications are too slow-acting to affect CH, so injections or nasal sprays are preferred. Since your pain is constant, I don't know what to say about what effect might have been expected. Some easing of the pain in 20-30 minutes, I suppose. I hope you'll follow up on that hemicrania continua possibility.
  10. CHfather

    New cluster headaches

    So first step ought to be to try to get indomethacin. It will tell you if you have HC. It's an unpleasant med that had gastrointestinal side effects that are severely uncomfortable for some people and not so bad for others, but it might take away your pain. Also, start on the D3 regimen: http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 You could share this with your doctor who "hasn't heard of anyone doing [oxygen] ": https://jamanetwork.com/journals/jama/fullarticle/185035 If you have CH, you are indeed getting a "crapload," since it's all crap in terms of treating CH. No one has ever prescribed a triptan (such as Imitrex)? Seems weird. Nah. Not really. Some people get CH attacks from marijuana, but you don't. Most people with CH smoke, but lots don't and never had. ~80% (my guess) of people who quit smoking say it has no effect on their CH.
  11. CHfather

    New cluster headaches

    The usual excellent information and advice from Freud. And his follow-up question is very pertinent. If your headache is constant and meds that should help with CH don't work (though we'd need more information than "crapload" to make this assessment ), you might well have hemicrania continua (HC), which has these characteristics and is treatable with the drug indomethacin. If indomethacin wasn't part of the crapload and the symptoms match, then you want to try indomethacin. Affect only one side of your head Are daily and continuous with no pain-free periods Cause moderate pain with spikes of severe pain Respond to the prescription pain reliever indomethacin (Indocin) Can become severe with development of migraine-like symptoms In addition, hemicrania continua headaches are associated with at least one of the following: Tearing or redness of the eye on the affected side Nasal congestion or runny nose Drooping eyelid or pupil narrowing Sensation of restlessness
  12. CHfather

    My Face Hurts

    I made this significant mistake in my earlier post. I should have written sometimes a triptan nasal spray will work. You could probably contact the ER and find out what was in the three-drug cocktail, but I am guessing it was probably something like the Benadryl you mentioned plus Compazine, and Toradol. Benadryl is helpful for CH, but it is not going to have quick results to abort an attack. Compazine and Toradol are usually ineffective against CH. I'm saying that O2 often knocks out a CH attack on its own. One of our CH citizen scientists discovered that Benadryl taken as directed (I think that's 3 times a day at 25mg and 50mg at bedtime) will significantly affect CH. Many people now add it to their treatments.
  13. CHfather

    My Face Hurts

    I'm sorry you are suffering so much. If you have CH, there are lots of things you will be able to do to manage the pain. Since I'm puzzled by several things here, I'm not committed to a CH diagnosis, but if you do have CH, a prescription for oxygen, is what you want first -- particularly since it helped you in the hospital. Oxygen is the #1 game-change and indeed life-saver for people with CH. I'm guessing when you say you "take a lot of Imitrex" that it must be pills. Those pills don't work with CH. Injectable Imitrex typically does work, and sometimes an oral triptan will work. [Edited to note that this should have said "sometimes a triptan nasal spray will work.] Gabapentin is often prescribed for CH, but it's a kind of secondary or tertiary option. Usually gabapentin is prescribed for TN, and I don't know -- making it clear that I ain't no doctor -- what the additional anticonvulsant, carbamazepine, is adding. Toradol generally won't work against CH pain. Corticosteroids can at least temporarily stop or significantly reduce CH pain (one of my puzzlements, given your hospital experience). If you google [goadsby treatment of cluster headache] you'll find a straightforward description of pharmaceutical CH treatments. Many people here would tell you that aside from oxygen, pharma and prescription meds are far from the best way to treat CH, although they can get you through a rough spot, which is probably what you need right now. The vitamin D3 regimen, energy drinks, busting, Benadryl, and a bunch of other things can help more with fewer or no side effects. Given the cocktail you now are taking and the unclear (to me) CH diagnosis or possible multiple diagnoses, I'm reluctant to suggest anything except trying to get some kind of definitive diagnosis, demanding an O2 prescription, and perhaps getting a different pharma treatment plan. You are not now receiving any kind of sensible first-line treatment for CH. I don't want to minimize what you're going through, but lots of people here have been where you are and come out the other side, so I'm hoping you will hang in there.
  14. CHfather

    Thank God for this forum and a few questions!

    amy', most people (but not all) find that an energy shot doesn't keep them awake after a nighttime hit. Of course, your reluctance to find out how that might work for you is completely understandable. I wonder whether melatonin at bedtime might help you. Melatonin is low in people with CH when they are in cycle. The purpose is not to help you sleep through any attacks, but to restore melatonin to your system. It's often recommended to start at 9mg and work up to a dose that affects your attacks. Some people get into the high 20mgs or low 30mgs before they get help from the melatonin.
  15. CHfather

    Thank God for this forum and a few questions!

    We have heard the rumor before about injectable Imitrex not being available in Canada. From all reports, it isn't true. There was some kind of a shortage a while back. I'm a little confused by what you have written because vials are not the same thing as the autoinjector. With vials, you get the Imitrex and you use a syringe to draw the amount you want out of the vial; autoinjectors come filled with sumatriptan and a syringe needle, you push a button to inject it. I don't know of the status of vials in Canada. They are definitely a better way to go because you can use only what you need, which for most people is about 2 or 3mg, whereas the standard autoinjector has much more than you need, 6 mg. Many people take apart the autoinjector so they can give themselves injections of smaller amounts, but that's not simple to do for everyone. There is also a 4 mg autoinjector of sumatriptan. I don't remember the brand name. This is kind of a compromise -- it's still more sumatriptan than you need, but at least it's not 6 mg. I'm pretty sure that Zomig is just a nasal spray. It's a different triptan (zolmitriptan). Don't know if it would affect you differently.
  16. Cheryl, Just for clarity sake, I'm pretty sure THMH meant to write verapamil in the two places where it says prednisone there. And going back to your post, Cheryl, for the reasons THMH gives it probably was not wise for your neuro to "skip the verapamil step." Here's hoping the prednisone alone was sufficient, but again as THMH wrote, it rarely is unless your cycle in ending anyway. At least, I hope you're also doing something with the D3 regimen.
  17. CHfather

    Do I have a cluster headache?

    There are several CH symptoms associated with they eyes. https://www.mayoclinic.org/diseases-conditions/cluster-headache/symptoms-causes/syc-20352080 Ibuprofen won't touch a CH, no matter how much of it you take.
  18. CHfather

    After Cluster Headache - Help Please!

    Can you be more specific about what your micro-dosing approach has been?
  19. jeb', You can have oxygen at your office. You really, really, really want to have oxygen. If your trex is injectable, you can split your doses and still get fast relief. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ There are other ways to achieve the same result -- getting it in vials instead of in an autoinjector, or getting a prescription for an autoinjector that's 3 or 4mg instead of 6.
  20. CHfather

    Help needed!!!!

    Great advice from F'T' and Freud. OXYGEN can't be overemphasized. It's the real lifesaver. If you can't get a prescription, you can do as many do and create your own system using welding oxygen. For most people with CH who have done the vitamin D3 regimen, it has been effective at stopping cycles, reducing severity of attacks, and preventing future cycles (though not right away -- it can take a few weeks, although for a small number of people it's faster). http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Often, a good doctor (and I would say emphatically that you do not have one, given what was prescribed to you) might use a steroid taper (prednisone, usually). In some cases, it will stop a cycle, but in most cases it gives pain relief for a few days before the cycle comes back as you are tapering off the steroid. You can use those few days to jump start the D3 regimen, or to use the commonly prescribed preventive, verapamil, which takes time to get into your system enough to be effective. Regarding "busting" with shrooms or seeds (or L S D), read the numbered files in the ClusterBuster Files section of the board. You might find other things that will help you as you read the other files in that section. The "triggers" document, for example, has been helpful to some people. Also, because CH is often flared up by allergies, even ones you don't know you have, consider taking Benadryl 4 times a day, 25 mg 3 times, and then 50 mg at night. It's a lot, but it can help. Some people find that melatonin at night, starting at about 9mg and working up as needed, helps. Melatonin is an important chemical (hormone??) that is low in people with CH. NOT recommended to take both Benadryl and melatonin at night.
  21. CHfather

    My experience with CH

    Buried on p2 of the CB Files section: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/
  22. CHfather

    My experience with CH

    non-rebreather. or, as jon' says, a plastic bag.
  23. CHfather

    My experience with CH

    You could very quickly set up a temporary oxygen system using welding oxygen for something like $100. Many people use welding O2. You'd have to get a tank from a welding supply store and order a regulator and mask online. If you can get to a welding supply store right away, the time the whole process would take would just depend on how quickly you can get the regulator and mask. If you want more info about this, just ask. (I have the sense that you might not be in the US. I'm not sure if it's as simple as I've said in other places.) [Edit: Crossed posts with Freud here.]
  24. CHfather

    Cleaning O2 Mask and hose

    I'm surprised by how many sites recommend replacing masks pretty frequently -- every month or six weeks. I don't think many people in this community do that, but I could be wrong. If you have a standard non-rebreather mask, you can buy a new one at amazon or many other online sites for under $10. If you don't have the premier mask designed for people with CH (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit), it's a darn good investment. The general advice for cleaning a mask is to wash it in warm soapy water, rinse it with a solution of 10 parts water to one part vinegar (vinegar kills bacteria but is not supposed to harm anything else), and then rinse well with hot water.
  25. CHfather

    Open letter to major chemical companies (BOL-148)

    Thanks, Denny. i suppose yale has recognized that it has to do something to make up for having me as one of its graduates.
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