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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.

Hi all, Just wanted to give you guys an update. I went to the nurse practitioner today (her name is Dr. Sandra Lee by the way) and I brought the printouts for the Oxygen therapy and the vitamin D3 therapy. She was all for me trying the vitamin therapy (and apparently had used it for some of her migraine patients) so I am going in for lab work tomorrow to get my baseline results so we can get the dosage correct. She also said before I even mentioned it that I should be on Oxygen. I was like “YES! Finally!” Unfortunately, laws prevent nurse practitioners from prescribing it, which she admitted was stupid, but then told me she was going to talk with my primary doctor and plead my case to him. Well she called me a few hours later and said she convinced him to do it, so I finally am getting the Oxygen! I was so happy I started crying on the phone. So I’m hoping between the Oxygen and vitamin therapy that life will become much more mangeable! Never underestimate the importance of finding the right doctor. She is getting a thank you card for sure!

Madam, I'm not sure what interaction there is between Tramadol and mm, but... MM is 100% non addictive. Actually it's just the opposite. There were several studies in the 60's before mm was scheduled here in the US on their use as an addiction reversal. Studies for smoking, alcohol, heroin and other addictions were done and from what I've read they were all massively successful in helping people kick addictive substances. I notice quite profoundly that after I dose with mm, I have no desire to drink for quite some time. MM has zero physical addictive qualities as the experience isn't a high like opiates etc. If you're sober, I definitely can appreciate and am glad for your sobriety. On the other hand mm has the possibility of helping you in not just one, but two ways. Funny, I just did a Google Scholar search. Over 4,800 articles came up in reference to using psilocybin to treat alcohol addiction. https://scholar.google.com/scholar?q=psilocybin+and+alcoholism+treatment&hl=en&as_sdt=0&as_vis=1&oi=scholart PFW, J

Wonderful news Vanessa!! Oxygen will totally change your life with ch!!! Before I started busting, I could abort a hit in 8 to 15 min......now, after 9 years of busting, I typically abort in 5 minutes or less....lifesaving stuff! Congrats!! DD

Hi Vanessa! Two words.....WELDING OXYGEN!!! You can ditch the hassle of getting a doc to write the script (correctly) and then dealing with the A holes at the oxygen suppliers by going the weld ox route as many of us here have been doing for years!! Medical O2 comes out of the same faucet as weld ox....the difference is that med tanks are vacuumed prior to being refilled while on welding cylinders they just crack the valve and give it a sniff test in the event that it's been contaminated with acetylene. Some welding gas suppliers will lease you a large tank for a small monthly fee (I paid $6/mo) with a deposit ranging from $100 to $150 and refills from $18 to $23. Some suppliers, like my current one, won't lease.....in my case, I had to buy a cylinder for $300 and refills are $20.....drawback is that the tank is large, very heavy, and hard to schlep around, and, you can only exchange it for a full tank at the supplier where you purchased it....oh, and you NEVER want to let them know you're getting it with the intention of breathing it!!! The other associated up front costs are for a welding oxygen regulator fro Harbor freight for around $70 and a good non rebreather mask....I highly recommend the ClusterO2kit from our Sister site clusterheadaches.com for around $25. Dallas Denny

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

Hi clusterhubby! Chf is spot on with his statement on OUCH-UK....contact them for assistance with the H.O.O.F form for home oxygen....ya'lls NHS recognizes oxygen as a front line treatment for clusters so regardless of any docs reluctance to prescribe it, you are entitled to it by your health care system!! Dallas Denny

Thank you for kindness CHfather. And true wisdom. That's pretty good word; perspective - that what we are offering here. I have a style of writing that I am preaching or seem like know-it-all but I'm always just offering my perspective. Nowadays I try to insert as much "in my opinion"s and "my personal view"s as I can. I completely missed the chronic part and yes, looks like your wife had a pause in attacks so she definitively is an episodic. I know that some doctors may label 6 months as chronic if cycles arrive whenever but that is rare. Our finnish group is supposed to be CH only group but just yesterday someone asked if others have another headache condition with cluster headaches (she had been told it is rare) and she got 70 replies in one evening. At least in finnish CH group quite many have something else with clusters, they seem to be more often women and diagnosing and treating is more challenging. If a person has even more than 2 conditions inside one head, telling one from the next and which symptoms belong to which one is pretty challenging. These are the most usual ones to have with clusters, in our group: migraine (with aura), migraine (without aura), hemiplegic migraine (2 types), (often chronic) paroxysmal hemicrania, hemicrania continua, trigeminal neuralgia, basilar-type migraine and SUNCT. Around in this order - I hope I got the names right and did not confuse by saying something twice with different names. Some things I though about the next attack arriving so soon (and if I understood correctly pretty severe); it's important to stay on the O2 a little while (at least 5-10 mins) counting from the moment when last little spark of the pain is gone, keep inhaling it for a while - this ensures that the same attack will not come back after a while. If you are able to get higher flow later on, this might help too. Sometimes when CH cycles begin, for some they can be furious at first. Hits just keep coming. One more thing, when CH began, did your wife have any kind of trauma to her head ? Especially physical but I would think of serious mental kind of traumas as well. These seem to be more common in more challenging patient cases when the cluster symptoms or diagnosis is not obvious. Good luck to the future !

So sorry, 'Hubby. I'm a supporter myself (my daughter). I know how terrible it is to see that suffering in someone you love. As others have said, though, it's going to get better. Such great perspectives you have now received from two of the greats, Freud and Tony Only! I'm troubled that her attack resumed, or she had a new attack, so soon after the sumatriptan injection, and by the number of attacks she is suffering every day. I hope your neurologist will look closely at all the diagnosis options. (From what I have read you to be saying, there is no reason that she should be diagnosed yet with chronic CH -- chronic means a year of essentially uninterrupted attacks). In our experience, you get better advice and treatment from a headache center than from a standard neurologist. I say this a lot, and I'm often wrong, but I would want to be sure that the neurologist considers hemicrania continua as a possible diagnosis. That's a condition that has many symptoms similar to CH (and similar to what your wife is experiencing), but unlike CH it is treatable with a single medication, called indomethacin. When they gave her the O2 in the hospital, was she breathing it through a mask (or just with those tubes that go into your nose)? Mask is essential. It's my understanding that Ouch(UK) has been quite helpful to people with CH, particularly regarding getting proper oxygen promptly. https://ouchuk.org/ I looked there for information about the Imigram/Imitrex shortage, but didn't find anything very current. I urge you to be persistent about this (while also considering the negatives about those injections that have already been mentioned). If she does go that route, be aware that the injectors can be opened so that she can give herself smaller doses, which are sufficient for most people with CH and not as damaging. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ The nasal sprays do help some people, so I'm hoping it turns out to be that way for her.

I tend to be preachy about verapamil, it's a drug that creates lot of heart problems. Anyone who is on it, needs a checkup (heartfilm) every time dose changes by 80mg or more. This is the official guideline but many doctors skip it. 240mg is a normal dose for someone with heart issues. Since we do not, 240mg is a bit high. But clusterheads have survived from 1000mg daily or more, myself included, with a heart failure though. I personally would recommend to try alternative safer things first, not simultaneously with verapamil, but that's just me. Did you read this article already ? https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people - there's a chart (labeled Update Jan 2017) that should be more simple. Some people who start vitamin D as en emergency only take Vitamin D (for an examply 10,000IU per day) and Vitamin K-2. Then they will do complete regimen when they have blood work done. It's important to check the Vitamin D levels with a blood test. The Psilocybin and LSD page I linked really covers the mushroom and seeds part. It's good to read completely over time, since you must not "just" take these substances but also learn what you are doing. Psilocybin mushroom is the kind we need or seeds that contain LSA (often called Rivea Corymbosa or RC seeds or ololiuqui seeds). Mushrooms is more of a "trip", seeds is more of a nausea. Here in Finland it depends a lot of the doctor what they think about Vitamin D although it should not really be a matter of opinion. Some recommend it, some forbid it. Doctors are unable to recommend psilocybin and I think many do not know about the subject at all unless they are linked to patient communities. There may be judgemental views too. I think the decisions made in the beginning will have a huge impact on the forecast what cluster headache will be later in life. Too few find all the options available to be able to make the best decisions. I wish you all the best and pain free life for your wife as soon as possible.

I’m sorry you have to deal with this but your wife is lucky to have you! As far as treatment options go. Verapamil which is a blood pressure med is first line therapy with oxygen. As tony stated for some it’s a matter of high flow and the right technique. The verapamil is started at a low dose 80mg 2 times a day and is increased every 7-10 days w BP and ekg checks inbetween up to a dose of 1000mg daily divided into 3 or more doses. I’m on 640mg a day and I have to divide it into 4 doses. I get blurry vision if I take more than 160mg at once. I am chronic as well and have had great results busting and preventing with mushrooms. I haven’t tried RC seeds yet. But in the uk you could get a ready to go mushroom grow kit from the NL. I know they ship to the uk. There is a way to beat this for most and you can stay relatively pain free. Stay strong be reselliant. Brian

Thank you for clarifying. I wasn’t aware of the interactions until now. I have been on and off opiates since I was burned when I was 14. I’m 40 now and have put myself in withdrawal several times. It sucks for 3-5 days but then it gets better. It’s worth detoxing to give the mm a chance. Suffering with the CH and being addicted sucks. I take invega which is also a relative contraindication. I take it for bipolar disorder and can’t detox. So what happens is I don’t have a trip, but my eyes dialate and I get a body high. I have taken doses up to 10grams dry. That’s the only time my core temp went up. But nothing too high 100.1 I have managed to keep my chronic CCH at bay if I dose once a month and usually take 5 grams. If you took a low dose on the tramadol I doubt you’d have much of a risk of seratonin syndrome. And you could still benifit from the mm. I still would detox, a it’s safer and b you kick the habbbit that isn’t really helping you any more.

I am definitely not against MM, I think I worded it wrong. I am addicted to Tramadol which is an opiate with SSRI - MM works on those same receptors so as I am addicted to Tramadol the MM won't work. What may be an option in the future is to use the MM to ease the withdrawal from Tramadol. Thank you so much for taking the time to reply xxxx Appreciate it x

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.

Oh funny.. Ignore my links below. The Amazon link FunTimes posted above is by far much much better! J Ebay is also a great place to get regulators. At a minimum I'd get a 15 liter per minute, or the best regulators will go up to 25 lpm. It's very likely the oxygen company will only stock 8 lpm regulators (I've had this issue with every O2 company I've dealt with over the years). For the most part 8 lpm doesn't do anything for our CH. Buying your own is cheap and you'll never be without it! 25 liter per minute - https://www.ebay.com/itm/medical-oxygen-regulator/323535378941?hash=item4b543619fd:g:Kb4AAOSwRxJb4H1E:rk:22:pf:0 15 lpm - https://www.ebay.com/itm/NEW-Drive-Medical-Oxygen-Tank-Regulator-Model-18301GM-0-15-LPM-Barb-Outlet/352326271208?epid=2254403594&hash=item52084840e8:g:UvoAAOSwCZ5VfLl3:rk:9:pf:0 Cheers, J

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.

Hi Vanessa..glad ya found us... OXYGEN is THE recognized treatment for CH...for decades...saved my sanity maybe my life....and there are THOUSANDS like me who could testify better than I. A doctor with TWO patients with CH (most never even see ONE) who doesn't know that or hasn't not bothered to do the most basic of research (pred gabby and verapamil oddly notwithstanding) desperately needs to be fired for a headache specialist.... ...in the meantime...listen to D Denny....it's GOLD! Best Jon

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

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

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.

Busting is a topic I don't know enough about, as I am trying to learn that myself. However, I have a few tricks I have learned: OXYGEN is your best friend. There is no actual difference between welding oxygen and medical oxygen (only the cleanliness of the tank). Oxygen is your first and best line of defense. I have found that oxygen will abort an attack almost as fast as an imitrex injection without any of the side effects. You need, at a minimum, a flow rate of15LPM through a non-rebreather mask for 15min. When you go to your doctor, make sure s/he specifies the flow rate and non-rebreather mask (the one with the bag on it). Much more about oxygen can be found here: https://ashleyhattle.com/how-to-get-and-use-oxygen-for-clusterheadaches/ (This is a link to the website of a Clusterbusters board member who literally wrote the book on Cluster headaches) It wouldn't hurt to get the book either, I found it informative and encouraging. Also, there is a lot of information on this board about oxygen. Everyone does it a little differently, but most people have great success with it. A key point is that if it does not work for you at 15 LPM, increase the flow rate and try again. For me, 15LPM will work, but I do better with 25LPM. ENERGY DRINKS are helpful at holding off an attack and are also used in conjunction with oxygen to abort attacks. The combination of taurine and caffeine is apparently what does the trick. I used to slug a cup of coffee to hold off an attack, but the caffeine/taurine combo works better. Look into the D3 Regimen. A cluster headache sufferer put this anti-inflammatory regimen together and cured his headaches. Essentially, it is a bunch of vitamins in conjunction with large doses of vitamin D3. This forum has a lot of information about the D3 regimen, and Batch (the creator of the regimen) is a very regular contributor to this board and is always willing to personally help. Many people have a reduction in frequency and severity of their CH using the D3 regimen. I have those morning hits sometimes too. It sucks to wake up, go through hell, pop an injection, and then have to go about your day. Oxygen has made that bearable. Trex messes with me, makes me drowsy and worthless. Oxygen does none of this. I have also been able to drastically cut back the shadows with oxygen as well. I have recently stopped taking imitrex, and rely solely on O2 and Energy Drinks for aborts. (I still stockpile the injections for a rainy day, however). Also, there is some evidence that imitrex can make your cycles longer. When things were really bad I would take imitrex tablets as a preventative (I could prevent an attack for 12 hours with this method). It sounds like you may be experiencing something similar. Most importantly though, we have all been there. You don't have to put how you feel into words. Those feelings of despair are (in a way) a symptom of this condition. You are also suffering from PTSD (we all are). That helpless feeling you get when you got yet another attack is part of it and there are a lot of people on this board who know exactly what you are going through, and are willing to help. This simple fact did not keep a cycle at bay, or help abort any attack. But it gave me some hope that things would get better in the future. Congratulations on the baby, you have a whole new world to look forward to.

...for me....periodically from 1985 to a few yrs ago... it was Lincare at $10/tank.....eventually $12 then $14. Used to order up tanks when I travelled using their online "travel arrangement"..... worked exceedingly well with no complications....Oklahoma and CA (multiple times)…. Best Jon

I have known several people that paid out of pocket for tanks. One in particular had a deal for $10 E tanks anywhere in the country. It can be done.

Thanks CHfather and Pebblesthecorgi - as it turns out, bad information from the pharmacist (probably due to the trex shortages earlier in the year as per CHfather). We finally tracked some down! Thanks so much!

Planes and altitude near an equinox is the worst place to hold this conference. That time of year is one different barometric change after another also. Could be cold. They should always be held on a charter cruise to near the equator. No laws out there and can cure people instead of talk. The Cure Cruise. More fun too!