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  1. Today
  2. clankfu

    oxygen supplier issues

    What was Airgas' reasoning for not selling to you?
  3. 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
  4. Freud

    New cluster headaches

    Just to clarify something, do you have a headache all day or do you get multiple attacks that last for hours?
  5. Freud

    New cluster headaches

    First I would try and find a neuro that specializes in headaches. Any doc that won’t write for O2 is useless. iMHO. I would give the verapamil a fair shot. It needs to be titrated to a fairly high dose to get relief. You will need to go for EKGs and blood pressure checks while ramping up the dose. It has helped as many as it didn’t from ancendotal reports and is the first line therapy along with oxygen and injectable sumatriptan. A fairly high taper dose of steroids is often tried in the beginning and can help many. There is the D3 vitamin regime along with energy drinks gives great relief to some. I will let batch or someone tell you about it. As far as busting goes RC or HBWR seeds are going to be your fastest way to give it a try and is legal to purchase. Growing MM takes time a little trial and error and a little luck. If you decide to go that route we can steer you in the right direction. Stay strong it will get better. You can always get a welding oxygen set up as many have done for various reasons. Did the oxygen help you in the ER? Brian
  6. Yesterday
  7. Collin

    New cluster headaches

    Hi everyone, recently over the summer I got my first cluster headache attacks. I spent 2 months in constant pain and nothing worked to kill the headache. One day it just disappeared but not completely. I had 4 weeks of relief but I have a weird lingering headache that doesn't hurt(but is uncomfortable) all the time. Recently mid way through November the headaches are back but I think I may have chronic because it never stops. Its a constant burning behind my eye going down to my ear,nose,head, and it lasts 24/7 without relief. I take 0.75 ml of CBD rn and some ibuprofen for the pain but it does nothing. A crapload of meds from the er that didn't help but got me rly high, and was prescribed verapamil but don't think I will try it. I am looking for magic mushrooms at the moment but am thinking of growing for myself. I also have a bottle of tramadol from the er that they prescribed and it doesn't do anything. Where do I start and where do I begin trying to bust the headache my doc won't write me a prescription for oxygen and no doctors are any help at all. I want to finish school and can't at the moment. Please help! I don't know how long this headache will last if it is anything like the last one it will be more than 2 months before relief.
  8. Racer1_NC

    Thank God for this forum and a few questions!

    Personally I'd switch doctors if one laughed at me.... Internet based cluster headache communities helped save my life. I have no time for self important gasbags who believe they know it all.
  9. Batch

    My Face Hurts

    Hey Elrik, You're likely vitamin D3 deficient and that deficiency contributes to the frequency, severity and duration of your migraine and cluster headache as well as your other related medical problems including MS. See your PCP for the lab test of your serum 25(OH)D. This is the first metabolite of vitamin D3 that's used to measure its status. The normal reference range for this lab test is 30 to 100 ng/mL. Migraineurs and CHers need to maintain their serum 25(OH)D ≥80 ng/mL. That will require 10,000 IU/day vitamin D3 or higher. You can find the anti-inflammatory regimen CH preventative treatment protocol with 10,000 IU/day vitamin D3 at the following link. Be sure to take a copy to your PCP to discus when you ask for the 25(OH)D lab test. http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Your MS Dx is a related story. It's best you read up on the Coimbra protocol developed by Dr. Cicero Coimbra, MD in Brazil. 95% of is MS patients on this protocol are reporting a 95% complete remission. The following link will take you to the Coimbra protocol https://vitamindwiki.com/Interview+of+Dr.+Coimbra+-+Vitamin+D+protocol+for+Autoimmune+diseases+–+2016 There's also a Facebook MS group taking this protocol https://vitamindwiki.com/Multiple+Sclerosis+Coimbra+Protocol++stories+on+Facebook The Coimbra protocol is very similar to the anti-inflammatory regimen CH preventative treatment protocol with a couple major exceptions. Where we suggest 10,000 IU/da vitamin D3 to prevent CH, Dr. Coimbra suggests 1000 IU of vitamin D3 per Kg of body weight/day. A sleek rascal like me at 81 KG would need to take 81,000 IU/day vitamin D3 on the Coimbra protocol/ The Coimbra protocol calls for a complete avoidance of calcium rich foods and supplements. You'll need to consult with a physician trained in the Coimbra protocol before starting it. The following are physicians so trained. Dr. Brian Lamkin DO Address: 120 North Bryant Suite A9 Edmond, OK 73034 Phone: 405-285-4762 Fax: 405-285-4352 Website: http://www.lamkinclinic.com Dr. Edward Les Cole, MD Address: St. Petersburg Health & Wellness 2100 Dr. MLK Jr. St. N. St. Petersburg, FL 33704 Phone: (727) 202-6807 Fax: (727) 498-6642 Website: http://www.stpetehw.com Dr. Suzana Tanimoto, MD Address: L 77 8th Street South City: Naples, 34102, FL Phone: (239) 325-2015 Take care and please keep us posted. V/R, batch
  10. I slept 7 hrs last night with no hits...only mild shadowing around 1:00am!!! Thank you CHfather and FunTimes - I took 10 mg of melatonin before bed and had also increased my Vit D3 based on suggestions from Batch. Trying to avoid Immitrex and am already on Verapamil but will wean off soon. I like the recliner idea as my sinuses are always affected. I haven't tried Benadryl yet only because I am seeing success with everything else I have thrown at it otherwise I'd be getting some today. Once again you are all life savers - I too have experienced the negative effects of all of the pharmaceuticals offered to us that also don't promise relief. My next step will be to try busting in between cycles. It's the only thing left to try and I trust the anecdotal evidence provided in YEARS of trial and error found in these boards. Hugs to all of you and wishing for same for others suffering now, Amy
  11. Last week
  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. FunTimes

    Thank God for this forum and a few questions!

    I take 20 mg of Melatonin every night sometimes adding a 25mg of Benadryl depending on the season. I still get hit sometimes areoung 3am and take a 5hr energy shot without it keeping me up at all. I know everyone is different but if you are getting up every 2 hours anyway it might not be a bad thing to try. Give it a try on a weekend or some time you have nothing planned for the following day just in case you were to stay up a few hours after drinking one. The Melatonin and Benadryl were added to the D3 regimen I take and did help with the night hits. I also slept in a recliner for a week or so to keep my head elevated a little and that also helped.
  14. FunTimes

    My Face Hurts

    I would like CHfather said do whatever it take to get that prescription for high flow oxygen. Regardless if you have Cluster headaches or not it sounded like that did the trick in the ER. If you can abort a few headaches a day with the O2 and get off the other meds you may decrease some of the rebound headaches caused by the other medications you are now taking.
  15. Elrik138

    My Face Hurts

    I have had chronic migraines since I was 8 I am now 48. Over the last 10 years, they have started hurting my face and started lasting 10-30 days. Yes, there are multiple diagnoses going on. February 26th, 2016 I was diagnosed with MS. In January 2018 Optic Neuritis. Somewhere in there the decided I have all over body Neuritis hence the gabapentin. Within the last 6 months Trigeminal Neuritis was diagnosed, and on October 27th, 2018 Cluster Headaches. The carbamazepine is for facial pain supposed to work with both TN and CH as CH hit the Trigeminal nerve. The nortriptyline is being added to the gabapentin as I take the FDA maximum allowed dose and it is becoming not enough. The Imitrex is pill form. Morning and night I take Topamax to try and stop migraines from occurring. And Imitrex once I have one. Toradol usually knocks out a migraine that is Imitrex resistant. So this is not a long lasting migraine and it lasts way too long for TN. But 100% oxygen, Benadryl, plus whatever the other two drugs were knocked it right out. I did not come up with a Cluster Headache the Dr. at the ER did. He treated it as one and was successful until adding the steroid right before I was released. For an hour I was good.
  16. 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.
  17. Elrik138

    My Face Hurts

    This time it started on October 17th, 2018. I went to the ER on the 27th. I was told that these are cluster headaches by the doctor working at the time. In 2016 I was diagnosed with Trigeminal Neuralgia, then in December 2017 Optic Neuritis in the Left Eye. Blindness lasted 3 days peripheral vision still has not returned. I have had chronic migraines since I was 8 years old. Always through my left eye. This "Cluster Headache" is on the left upper side of my head encompassing my left eye. From my temple to the bridge of my nose than straight up through my hairline than back down the side to my temple. My eye and temple have it the worst. Always my @#$%# left eye. Anyway, at the ER they were able to kill it with 100% oxygen and a three-drug mixture all I remember is that Benadryl was one of the three. I slept for about an hour the nurse woke me up put a steroid in my IV which almost immediately brought back the headache. But they released me anyway. I already have neuralgia which I am maxed out on gabapentin for, so my doctor not knowing what else to do has just added nortriptyline. I am also on carbamazepine for the TN I called my Neurologist and he upped that. I have had this sort of thing happen several times before lasting up to 30 days. I usually take a lot of Imitrex for it hoping it will help but it does not. Nor does the shots of Toradol from the Dr. It gives me an hour or two pain-free in the morning BUT, only if I am able to sleep. Then it kicks in, in its full glory. My face really hurts bad right now and I don't know what to do. The beginning of next week I see both my family Dr. and my Neurologist, as that was the soonest I could be seen. I can't live with this I don't know if I can make it till next week.
  18. 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.
  19. ThatHurtsMyHead

    What is the divorce rate?

    +1 J
  20. Yes, I am worried about that as well - the side effects of both Imitrex and Verapamil. I am interested in busting next...i'll be posting in the other board after this cycle if I have questions. As far as energy drinks go - i haven't really tried that. My attacks come at regular intervals at night...11:30, 1:30, 3:30, 5:30 and sometimes 7:30....I am sensitive to caffeine normally so I worry I would be up all night and shift my attacks to the day! I don't usually get hit during the day (knock on wood). But I will keep that in mind and maybe get some in case the beast isn't done with me yet Thanks for your advice. Nice to know i am not alone.
  21. Rod H

    What is the divorce rate?

    Just curious seems like every time I get these damn things I get a Lil closer to the big d.
  22. ThatHurtsMyHead

    Thank God for this forum and a few questions!

    Amy, Imitrex and Verapamil did some terrible stuff to me many years ago. I'll never touch that stuff again. One of them (most likely the Verapamil) gave me PVC's (Premature Ventricle Contractions). It's a type of heart palpitation that's scary as $%&#. I didn't read anything in your post about energy drinks. Most of us are avid energy drink users when getting visits by the beast. Anytime I feel an attack coming on, I slam half a can of Monster or other energy drink that has caffeine and Taurine in it. Then immediately get on the O2. For some reason the combination of the caffeine and taurine helps the O2 work much better. I do the same for any night attacks. Never had an issue falling asleep after an attack no matter how much energy drink I had. If you ever get to the point of busting, I'm confident you'd never look back. Myself and thousands of others now have found busting to work better than anything the doc ever prescribed. Most of us are able to stay pain free by taking single doses at the time our CH is going to start. Cheers, J
  23. Freud

    Imitrex Injections discontinued in Canada?

    I’m having the same problem in NJ USA. Anyone in the states find it recently. I’m looking for s place to that would ship it. Thanks brian
  24. amyorr

    Imitrex Injections discontinued in Canada?

    Hi - I am very happy to hear that you have tracked some injectable Imitrex in Canada - the Shoppers Drug Mart pharmacist just told me it was discontinued this week London, Ontario. Can you please tell me where you found it? Thanks so much, Amy
  25. amyorr

    Imitrex Injections discontinued in Canada?

    Good morning - CH sufferer here in London, Ontario and the pharmacist at Shoppers Drug Mart just looked up injectable Imitrex for me and similarly told me it was discontinued. Where do I go next???? Any suggestions? Thanks so much, Amy
  26. Wow - it is truly wonderful to hear from people who understand I just made notes in my fat file for next time - especially the Zomig and IR Verapamil. I totally agree about the "beast" - I call it my demon - something I need to deal with all by myself - a test of my strength. It always wins before the end of the cluster. I worry how I will copy when I am old and fragile. I couldn't imagine going through that pain with a weakened body. I really hope there is something better for us by then! As an update - I woke up at 4:30am today to avoid a repeat of the 4 hr beast I spent time with yesterday morning. I just avoid sleep
  27. I too am confused about the Imitrex! Thanks for the explanation. My doctor "laughs" at me when I suggest anything from the "internet" that may help me. I have a lovely pharmacist who is more eager to help. I will keep looking for the vials for next time. I hope to be done this cycle soon. I will admit that injections seem a bit scary but I am willing to try anything now.
  28. Hiya Amy, 1. I live in Canada and my pharmacist says the Imitrex injectable vials are "discontinued." I have only ever used Imitrex nasal spray but they leave me feeling dizzy and eventually stop working early in my cycle. I would like to use the injectable form next cycle- any suggestions for me to find this on my own? Not sure why we keep hearing this…I don’t think it’s correct…check out these threads.. https://clusterbusters.org/forums/topic/5614-imitrex-injections-discontinued-in-canada/?tab=comments#comment-56604 https://clusterbusters.org/forums/topic/5745-my-experience-with-ch/?tab=comments#comment-57517 Suspect that in this world of statdoses and convenience there is a low demand so a low supply for a product requiring syringes, vials and draw ups. I never thot a big deal….but ??? Injectable should be quicker. Many folks find that the statdoses are too big a hammer (4-6 mg) and get by with 2-3 mg after dose pen tear down or the aforementioned vials….and therefore fewer side effects and possibly lesser chance of rebounds or negative cycle effects… (edit...sorry...didn't see CHf reply) 2. I read that Zomig may be more effective - is this in a nasal spray or injectable as well? Should I try that next cycle if I can't get the injectable Imitrex? It's nasal spray, I use the 5 mg version as my abort of last resort when oxygen, energy drinks and (formerly) verapamil insufficient. For me is superior to imitrex: 99+% effective within 10 mins, 18 hr ‘free” time, minimal side effects, no rebounds, no negative cycle effects, easily carried, unobtrusive usage. Similar (HIGH) price to other triptans…comes in boxes of 6. It would be really neat if you could get a sample from your doc to try…as my experience may be unusual… 3. Verapamil - first time I was prescribed it as a preventative I began taking it in July (2013- expected cycle) and had shadows. Verapamil worked to prevent the cycle and I stayed on it for 6 months to xmas. I weaned off Verapamil a few days before xmas and 2 days later the beast hit. The verapamil only delayed the cycle but it often feels like it won't let me get away with anything without taking me down first!!!! Whether to stay on or change dosage or form is a question only you and your doc can answer. I stayed on IR year-round because of rapid on/off CH cycling. Many (not ALL) find immediate release (IR) superior to extended release (ER). Sweet spot reported to be 480 mg/dy in divided doses….I would go over 1000 mg in high cycle….timed to expected hit times being somewhat more effective…. 4. I am into week 4 of my current cycle. The Vit D protocol and Verapamil together bring down the intensity and frequency of the hits. I have had a few PF nights. However, this morning I woke up from a dream ( as usual - most of my attacks come right out of REM sleep) at 5am to an intense HA that I first tried to hit with oxygen, then Immitrex....then gave up wimpering in the shower and sobbing myself to sleep. The lastest addition to my clusters is the Panic Attack which has me vomiting along with the beast. The lorazapem helps to relax me so I can focus on just breathing through the beast. Four hours later, I woke up feeling dizzy, weak, exhausted with no head ache. This usually signals the end of my cycle. So why when I see the effects of the verapamil and Vit D for a week or more do I still get whacked at least one good time before the beast quits? It's like he has to win every god damn time!!!!! When episodic (years) I knew that the cycle was over when I got BLASTED by the worst hit of the cycle (which is saying a LOT). Used to crave-yearn-pray for that hit…weird yes, but I KNEW what it meant. The “beast” as an entity vs a medical condition would be affirmed by many a clusterhead…it seems to be “alive”, with a will, a vindictiveness, and an evil intent that is spooky……….. Many find energy drinks…drank COLD and FAST at first sign of a hit…then hit the O2… to be quite effective. Minimum 100 mg caffeine and 1000 mg taurine (caffeine booster)…bought by price not brand as they mostly taste AWFUL....which at the time I don't care. The 2 oz 5-hr energy drinks have the advantage of portability and quick use. Lotsa sugar in most….look for sugar free WITHOUT aspartame (a trigger). I purchased at discount grocery stores for less than a buck per... Sorry for the rant. As you all will agree, no one really understands what I am going unless you have been there with me Aint no rants in clusterville…we share…yours nicely written! Best Jon
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