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  1. ....need.new.doc... ...preferably a HA specialist, at worst a open minded pcp who will respond positively to your needs (knowledge of which you may have to supply). nearly every clusterhead knows far more re CH than most docs, including neuros, will ever know. most doctors now have neither the time nor desire to become a student of CH for you, its a rare condition. you are the advocate....
    5 points
  2. Funny, Jon talks about having a hit in the office to show them the pain that we endure. I would love to have one in front of my Neuro. He is kind and good, but has no idea. Most of our meds are actually hand-me-downs from migraine treatment. Some work, at a different dosage, others work not at all. We are too large of a patient population to be called an Orphan Disease and get special treatment. We don't fit in any box and we get almost NO research into what might help us. So, we ride on the coattails of Migraine. Heck, even our use of MM is migrating to the Migraine community and LSD testing is sort of being taken over by other illnesses since it is in testing now for PTSD, Clusters, and Migraine. Migraine is the one that catches the public eye. I had to take my husband for my second Neuro visit to kill the 'migraine' mission the doc was convinced was the right path. My descriptions mattered not to him. Female = Migraine. After my husband told him he was sick of loosing his wife at 8pm every night, he perked up and listened to me. Yes, they want to peg Migraine and I think it is because it is easier to successfully treat than CH. Most are in over their heads sadly.
    4 points
  3. i am convinced that the drugs the docs pushed (verapamil, triptans) made my bouts worse. big pharma has done nothing for me except make the only drug that helps me illegal. too bad lsd wasn't profitable enough for sandoz. it sucks but such is life. about 10 years ago i decided to stop all medication preventative and abortive. i stick to O2, Red Bull, D3 and Psychs. So far i'm managing this godforsaken disease better myself than all the highly educated neurologists i have been to. i am not disregarding medicine and science, it's just that in this case science hasn't done shit for me. i don't expect huge changes either. even with bigger groups of sufferers (migraine) medicine is fishing in murky waters and throwing everything but the kitchen sink aht the patients...
    4 points
  4. ...no truer words! 20 years ago, in the depths of intense CH, i had access to pure morphine. it didn't even TOUCH the pain of CH, but twice, and twice only, i took enough to knock me out because i was f'ing desperate. it was a wake up call to get this shit under control. morphine is definitely NOT the kind of drug to be self medicating with, especially under duress and w/o full mental faculties. thereafter got a number of years of good success with verapamil and oxygen, until ultimately dialing in the O2, energy drinks, D3 regimen....and a zomig ns in pocket as pacifier....
    4 points
  5. Oh yes @jon019ive been accused of being a drug addict on a few visits to the Emergency department in my time . Just so glad I don't have the need for the place anymore .
    4 points
  6. ...as bad as it sounds, i always shout a YEAH! when the rare clusterhead reports being hit IN the doc office. this is an illness whose effects must truly be witnessed to be believed....otherwise they think you are exaggerating/drug seeking/crazy...... as we are left to describe the indescribable to the unbelieving...
    4 points
  7. Is it that your doc doesn't know you have CH, or that he knows that you have CH but keeps endorsing/prescribing migraine meds? Has he prescribed oxygen? Has he prescribed Imitrex, or verapamil, or one of the new CGRP meds (such as Emgality, Aimovig, or others), all of which are also treatments for CH? What are you doing beyond pharma meds? D3 regimen? Busting? Most CH patients, as has been suggested, have very little need for doctors. If you can get an oxygen prescription, that's good, but you don't need it to have an O2 system. A prescription for an injected or nasal triptan can be very good to have, but those are also migraine meds. And I think everyone probably ought to try one of the CGRP meds (also essentially migraine meds, with boosted dosage for CH), but others disagree with me about that. Beyond those things (and maybe a course of prednisone to interrupt a cycle), the OTC D3 regimen is much better (more effective; fewer side effects) for most people than verapamil as a preventive; the D3-related anti-inflammatory practices (including the "Full Monty") can often stop a cycle; the best abortive, oxygen, can be set up without a prescription, as I've said; and busting is great if you are open to it.
    4 points
  8. I figure if your doc is not a headache specialist, he is unlikely to have much (or any) clinical experience with CH, hence his references to what he knows - migraine. It sounds like he is not super into researching CH so far, so I'm gonna second the suggestion of @BoscoPiko to seek out a headache specialist if at all possible. And yep, triptans and stuff are prescribed for both migraines and CH, but everyone and their clusterhead mom will tell you that one of the best things you can have prescribed by a doctor is the more CH-centric oxygen for aborting attacks. Then a lot of people 'round here (I'm one of them) and their clusterhead dad will tell you the D3 regimen and busting can be very effective, non toxic ways to prevent CH whilst bypassing the pharmaceutical RX routine and doctors in general.
    4 points
  9. Been coming here since 2015 my life is significantly better since I found answers to my ?s
    4 points
  10. Crazy thing is that most of us cluster heads wouldn't touch half of what the common day doctor is willing to prescribe for pain as it does nothing for our sort of pain.
    3 points
  11. The crazy thing about CH is it can only be diagnosed and treated from the patients words.
    3 points
  12. Yes, do that!!! Perhaps it will open his ears to what you are saying. Good grief. O2: Tell us how you were instructed to use it please. That makes all the difference in the world. What flow rate, mask type, time, etc. It ALL matters. Do you utilize caffeine for your hits? Energy drinks or coffee? He may be a pain specialist, but that is NOT a Neuro and he likely has no idea regarding Clusters. They are not his forte. Have you read about the D3 Regimen? Cheap, easy, no doc, and good for you.
    3 points
  13. I have found that having Clusters teaches us why they say Doctors are “practicing medicine”! Over the last 45+ years I have heard try this and tell me what it does far to many times.
    3 points
  14. ... CH used to be known as "histamine headache" and some of the standard treatments were heavy duty antihistamines... they don't work as an effective prevent so the usage has fallen by the wayside of medical thought re treatment of CH. not to say they are not effective for allergies and illnesses that cause inflammation and chemical cascades..... which may trigger/enable/worsen CH....either directly or perhaps by burning down your D3 levels. ....Benadryl has always been a go to for me.....it just works better than the new line versions...and i could always work around the sleepiness it can cause (and which some folks treasure)... ....Batch has a new version of antihistamines to add to the D3 regimen if need be....hope someone will give you a link as it's too late for poking around for me...................................
    3 points
  15. 3 points
  16. Uff.. That's a tough one if your doc is under the impression that you only have migraine? Has he diagnosed you with CH? I suppose you could go into a very detailed version of your attacks in an effort to get him/her to see the difference but if the doc is not familiar with CH that may be a fruitless effort. You should be able to find and bring a printout of what CH is with you on your next visit (not sure how much that would help either). You may want to look for a local headache specialist as you would most likely have better luck getting the correct diagnosis (if you have not been). I do however, believe that many of the medications that are used for CH are somewhat similar to those for migraine with a few exceptions so that may be why your doc keeps talking migraine?.. Not sure if this was all that helpful but hopefully some of the more experienced will chime in here soon.
    3 points
  17. ...first drug ever prescribed for me for me way back in '85 (seem to recall 40 mg?)....after doc scurried back to office to look up migraine. boy was i motivated for it to work, and took for at least a year. did squat all for CH (positive OR negative), had minimal effect on BP, but produced some truly bizarre dreams.....not frightening just strange. so, in my case, psychoactive properties but anxiety was not on my radar at the time so did not notice either way. haven't seen this as a current use...10 mg sounds too low to effect BP, which some ascribe lowering of to be "calming", seems pretty safe to try and see....
    2 points
  18. I had 1 attack in front of my new Neuro,and all he did was ask me to remove my mask as im trying to abort it with o2,so I could answer his questions.
    2 points
  19. Deleted. I had thought maybe you just wanted to doubly emphasize your point. Seriously though, dunno why the pesky double posts happen.
    2 points
  20. It's a baffling but stark reality that none of what has helped many of us thus far, has come from a doctor. That in itself speaks unnecessary vocalized volumes... I have always wished that I could get paired up with a doctor that had CH but due to it's rare nature I've had no luck. The best I've gotten has come from none other that the amazing folks on here. If your brain is real mean to you, this place is a library full of real methods and means.
    2 points
  21. @BoscoPikoso true I remember going to A&E loads of times and all they wanted to give me was morphine at stupid doses just to shut me up . I'd be back in A&E 5 or 6 hours later with another attack , and again pump me full of morphine , but when I end up in A&E 5 times in 3 days they start throwing around this drug addict theme and that I haven't really got anything wrong with me . Oh and by the way morphine does f--- all for CH pain
    2 points
  22. ...hi SF... ...i see no reason not to try the ap-loratodine....have not seen reported as a trigger. i've tried for multiple allergies with minimal effect on same (sigh) but no effect on CH in or out of cycle.... ....the US version of Benadryl is a favorite for effectiveness for me and many due to excellent anti-histamine effects.....and sleep aid for clusterheads in cycle. i believe nytol original and nytol one-a-night are available SA (??)....these are marketed as sleep aids and contain the same diphenhydramine as US Benadryl (25/50 mg respectively). Perhaps other sleep aid brands with same ingredient. am sure you already know the European brand of Benadryl does not have diphenhydramine... j
    2 points
  23. You know I was really hoping for this rt here.. I am terrible at articulation but you @CHfather not so much. Good questions and response. I'll get better as long as I continue to educate. Thanks for piping in to this new suffering individual..
    2 points
  24. Hey TTF, Sorry about the delay in responding. I'm on my annual fishing trip to Pelican, AK. Our house has no phone, TV or Internet access so I hike a quarter mile to the town library for WiFi access. Thi big Chinooks (King Salmon) are hitting as are the Halibut so I'm enjoying my vacation. There's nothing wrong with a vitamin D3 dose of 10,000 IU/day and the fastest way of building serum 25(OH)D3 is with a 50,000 IU/day loading dose for at least 12 days. That totals to 600,000 IU of vitamin D3 and that should elevate your serum 25(OH)D3 by 60 ng/mL on top of your baseline serum concentration. I'd shoot for a target 25(OH)D3 serum concentration range of 80 to 100 ng/mL We have also had a number of CHers respond to a collection of supplements with antihistamine properties I call the Antihistamine Full Monty. It includes 3 grams/day each of Turmeric (Curcumin), Quercetin, Resveratrol and Omega-3. It also includes 250 mcg/day Selenium, 5 mg/day Melatonin (taken at bedtime) and 8 grams/day vitamin C. You can also add 500 mg.day NAC. I buy the bulk powdered vitamin C in 1Kg bags and stir two level teaspoons in 8 oz of water then take sips all day until it's gone by bedtime. It tastes like unsweetened lemonade. You can taper the first four supplements to 2 grams/day after a week to 10 days fully CH pain free. I'd stay at 2 grams/day on the first four supplements for at least a month. Dealer's choice on tapering further. Tale care and please keep us posted. V/R, Batch
    2 points
  25. .....ummmm....yeah.... ...ummm....yeah ^^^^^^^^ .....out of hundreds of cycles when ECH, there were a handful of the "one hour wakies" type for me (handled differently, see prev "wake up"posts). no changes in nothing before or after. while there are always tweaks you can make to O2 usage, i know i never varied far enough to prevent oxygen from being its typical sanity/life saver. something else happened (physiological?) ....and just like ALL our other tools "sometimes", for some, it just stops working/works differently....hopefully only for a while. ....O2 never has been, don't see how it would ever be, anything but a most effective abortive (don't forget the caffeine/taurine). it is transitory, not a prevent, not a trigger..... ....as an ultimate believer in O2 i must add: before any clusterhead gives up on O2, they would be WELL served to insure: a non rebreather mask, lpm 12-15+, and a practiced breathing technique(slow breathe, breathe/hold, hyperventilation, combo).....
    1 point
  26. I had already piped in closer to the inception of this thread, but here I go piping away again. I semi-agree with this: ......in that in high cycle, there are those of us who will be awakened hourly with yet another attack, following our O2 aborts. That's a lotta attacks, and since I've aged into the 3 hour long attacks (when not aborted), it is a greater quantity of them than would have been possible without the O2 aborts. Still, I think of these hourly attacks following O2 aborts as being more like re-aborts of the same single attack that keeps just wanting to come back and break through. And the question can come up regarding whether O2 technique/set up/adjuncts could be that much more optimized for longer lasting aborts.
    1 point
  27. Not trying to be flippant all, but it is funny to see the doctors react to a hit right in front of them. Evidently Shaun's doc had seen one before! I know of some You Tube videos that would help them!
    1 point
  28. That has happened to me twice. Both times i had to fight the doc and the nurse to up the o2 flow to 12 because "protocol says 8l/m" is enough. i was screaming in pain and they were watching me like scared deer watching headlights. it was funny, really.
    1 point
  29. LOL. I'm not even sure how I did it? Thank you Jeeb.
    1 point
  30. Hello Snowflake, as far as i can remember, in case of allergy/pollen etc. batch suggests to also take tumeric and resveratrol in combination with the benadryl. i think he calls it the full monty.... good luck
    1 point
  31. The trend continues! My city tolerates just about everything. https://www.freep.com/story/news/local/michigan/detroit/2021/11/06/detroit-psychedelic-mushrooms-proposal-e-entheogenic-plants/6303402001/
    1 point
  32. I was discharged from the Navy for having a sever malcalusion crooked teeth 6 years later I developed CH. After suffering for 30 years I went to a ortho surgeon and had all my teeth pulled and got dentures. Now I have CH with denture's. I did find a way to help and that was with MM. Found this out at last year's Cluster Buster's Conference. Saved my life
    1 point
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