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Rest assured many of us, definitely myself included, really feel for you in your near impossible situation @trjonas. In the spirit of throwing more ideas out there, even if you may have considered them long ago, wondering if your insurance or whatever would allow for a telemedicine appointment with a headache specialist. I don't have a referral, I only spent all of 20 seconds Googling about it, but it seemed some stuff was turning up, like this telemedicine headache specialist Honestly, I'm not sure how or why I hadn't considered this option for myself yet!

Ya gotta eat food shortly before. I know indo from palindromic arthrits [presents like gout].

OK, I got myself intrigued went back to that telemedicine site - now I'm seriously considering it for myself. Someone tell me if I've gone cuckoo with this angle. (Busting has been working for me lately, but if I am to follow my own preachings, I should have a neuro lined up and already consulted with, for my backup / contingency planning) I'm reading testimonials with stuff like "after 18 years being misdiagnosed and medicated incorrectly, Dr. Risa Ravitz diagnosed my condition as chronic Cluster Headaches and prescribed me medicine that changed my life!...."

...i am gobsmacked...for yrs we here on the cluster farm have bemoaned the lack of access to such.....WOW this never occurred to me either....this might be a game changer!

......now i got no qualms....you need a new neuro....a headache specialist .....anyone with ANY knowledge of CH knows you don't let a clusterhead just ride these out w/o rescue meds (oxygen, triptans, ergots, ketamine even....)....there's a fricken good reason they are called "suicide headaches"...SHEESH, this pisses me off..... ...in cases where diagnosis is undetermined/questionable it is not at all uncommon for an Indo trial to rule out HC.....when/if it works it's like a miracle....(EDIT to add: and another reason for a specialist is to get the right dosage...too little and you think it doesn't work when it may be "THIS" dosage doesn't work...)

Oh my goodness, it's not YOUR fault! I'm sad they aren't available for people in every state, otherwise maybe they'd end up being a great resource for a lot of people on this forum! But at least they can still be a resource for people on this forum who live in one of the states where they're licensed. You might still have helped many people! And you inspired me to seek out other online neurologists who do provide services in my state (SC), so not all is lost. I'll keep you posted if I find a good one!

I just booked an appointment for Monday evening at 6:30 PM, the earliest available. I'll let you know how it goes!

BTW, my oxygen costs me the same, self-pay, no matter how many tanks/deliveries I get. So @jon019 is correct if there is an inventory issue.

smashing my head at a convention flipped me from episodic to chronic. and my flippin maintenance doses have to be 21 days or a bit less. good thing i'm a mycophiliac.

https://archive.fo/UjfR0

Taking into consideration your concussion there's also this apparent classification of HC: Posttraumatic hemicrania continua I don't fancy myself a diagnostician though, so I'll try to shut my pie hole now.

...see the attached Kip scale...a beloved fellow clusterheads interpretation. it doesn't fit mine, but bear in mind the typical pain scale you'll get at the doc shop doesn't represent us either. it's importance is as a reference...kind of an "in reference" that clusterheads of an era used (use) to talk to each other in the same language.... The Kip Scale (clusterheadaches.com) ....there's really no way for us to gauge how O2 is going to work for you....timing/flowrate/breathing techniques/etc....took me hours of sometimes bitter experience to figure what works for me.....then it changes and ya start learning all over again.... ....a few basics: get yourself a non rebreather mask (no holes/bag attached, see ClusterO2 Kit - Clusterheadaches.com - Online Store ) so you are getting 100% O2, start out with higher lpm flows (15-25+) and work your way down til ya find the sweet spot, if any. try various breathing techs like hyperventilation (most popular), slow breathing, breath and hold, a combo. most find it important if not critical to start at the first sign of a hit. many, like me, are benefitted by same time quick downing of an energy drink (min 120 mg caffeine/1500 mg taurine).....and staying on O2 for 5-10 mins after a hit aborted. since you are unsure when to start, you are just gonna have to try.... and record/remember your results. in my case, i put a time limit of 20 mins on any attempt because by then i knew it wasn't gonna work....and no sense wasting O2. in reality, i would probably stop sooner because i just "knew" ...and cannot explain how...you'll know......

Dr. Schindler at Yale is looking for people with post concussive headaches to participate in a clinical trial, FYI

Chris, Great post! It should help Signals with his problem obtaining welder's oxygen as an abortive for his CH. I share your frustration with the draconian regulations that prevent CHers from obtaining home oxygen therapy as an abortive for their cluster headaches. You covered the important parts of obtaining and using welder's oxygen as a CH abortive and that's fantastic. I did the same thing in September of 2010 following a move from Virginia back home to Bremerton, Washington when my Rx for oxygen ran out. $250 for the M-Size welder's oxygen cylinder at the local welding supply outlet 2 miles from home and $35 to exchange the empty for a refilled cylinder. I actually do some brazing, but most of the time, it's cutting skids and chokers to pull logs. We live in the woods on the Kitsap peninsula in the heart of Puget Sound, Washington 20 miles due West of Seattle near Bremerton. The gravel driveway, a.k.a., a logging road from the county road to the house is 900 feet long and crooked as a dog's hind leg as it winds through heavy stands of secondary growth Douglas Fir, Cedar, Alder and Big Leaf Maple trees. We don't get many unannounced visitors... A windfall a year across the driveway is par for the course so I keep two Stihl chainsaws gassed and ready. Windfalls are also a convenient source of fire wood. I've a transfiller that I used to fill my aluminum M60. It's configured with a Flotec 0 to 60 lpm regulator with DISS fitting for my Carnét oxygen demand valve that enabled me to abort my CH in an average of 7 minutes at respiration rates that support hyperventilation. All totaled, I've easily $2500 worth of oxygen equipment, but haven't used it for more than a week since October of 2010 when I developed and started taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 plus the cofactors. The aluminum M60, Flotec regulator and Carnét oxygen demand valve sit in the laundry room under a plastic bag. I've still 800 psi remaining in the second welder's oxygen cylinder refill I purchased in early October of 2010. Getting back to the difficulty of obtaining oxygen therapy for our cluster headaches and what we can do about it. For starters, we can thank the unelected bottom feeding bureaucrats at the Centers for Medicare and Medicaid Services (CMS) for their non-coverage determination for home oxygen therapy. This non-coverage determination prevents Medicare beneficiaries with CH from obtaining home oxygen therapy. They're not alone. We can also thank the Big Pharma lobbyists from K Street and their bought and paid for legislation passed by money hungry members of Congress over many years for the draconian regulations on home oxygen therapy that allow too many medical insurance companies to decline coverage for this very safe and effective CH abortive. I tried to have this non-coverage determination changed in 2008 but was blown off by CMS. In 2009 I joined forces with a team from the American Headache Society (AHS) to do battle with CMS in an attempt to overturn this absurd non-coverage determination for home oxygen therapy for CHers. The AHS effort was conceived and spear headed by Dr. Fred Sheftell, MD, Presisent AHS, a chronic migraineur. In early 2010, Dr. Sheftell retired and turned the reins on this effort over to a pair of heavy hitter neurologist, Dr. David Dodick, MD, the new President of AHS, and Dr. Deborah Friedman, MD, M.P.H. They presented a binder with 30 clinical trials, case studies and findings from the European Federation of Neurological Societies (EFNS) that recommended oxygen therapy as a safe and effective first abortive of choice for cluster headache as evidence. They also had a team of neurologists and headache specialists standing by as expert witness to provide testimony as to the safety and effectiveness of oxygen therapy as a CH abortive. The bureaucratic swamp turds at the CMS Coverage Analysis Group disallowed the entire binder as medical evidence when none of the studies met the RCT gold standard of being randomized, blinded and placebo controlled. They also declined to meet with the expert witnesses as none could provide a gold standard RCT as medical evidence. The rest is history. I've attached the letter sent by Dr. David Dodick to the head of the CMS Coverage Analysis Group. It's eloquent and to the point, but had no effect. The Non-Coverage determination still stands. I've been a part of two efforts to overturn this non-coverage determination and know of the third from here at Clusterbusters. Two have been bottom up and the third from here at Clusterbusters tried a middle up approach with support of a congressman. Unfortunately too many members of the House and Senate are on the take from Big Pharma so the Clusterbuster effort failed in a legislative attempt to overturn this non-coverage determination. The only way we're ever going to achieve success is with a top down approach by President Trump. If President Trump takes action to fix this terrible regulation, it will get fixed! The best way to do this is to contact the White House at the following link. https://www.whitehouse.gov/contact/ It will give you the option of "Contact the President" or "Help with a Federal Agency." Select either option, (You can go back a second time and select the other option to cover both information avenues). Fill in the blanks then in the final blank "What would you like to say" start out with the regulations governing home oxygen therapy for cluster headache sufferers on MEDICARE are too restrictive to the point Medicare and Medicaid beneficiaries with cluster headache are not covered.  Point out that President Trump made a promise to the American people he would help cut the red tape and restrictive regulations that make things like home oxygen therapy so costly and difficult to obtain. Give your own story in your own words like how you're forced to use Triptans like Imitrex costing $900/month for the nine shots per month covered under Medicare as an abortive but the estimated $100/month for home oxygen therapy is not covered. The average cluster headache sufferer has three of these terribly painful headaches a day, 90 a month, yet Medicare will only cover relief for 9 of these terrible headaches a month with Imitrex. Home oxygen therapy would cost much less at $90 to $100 per month and could be used for all cluster headaches not just 9 a month with Imitrex, then be forced to suffer agonizing pain during 80 more of these cluster headaches without any relief. Ask why an expensive pharmaceutical like Imitrex is covered as a cluster headache abortive for Medicare and Medicaid beneficiaries, yet USP oxygen is not. Ask if existing legislation and regulations governing coverage for home oxygen therapy has been influenced by Big Pharma to their advantage in the market place? The simple solution is to make home oxygen therapy an OTC item. This would eliminate burdensome regulations, increase competition and ultimately lower the cost of home oxygen therapy. The savings at HHS/CMS would also be huge as a large part of the CMS budget is spent administering prescriptions for oxygen and the durable medical equipment associated with home oxygen therapy for Americans with COPD. The American Lung Association (ALA) thinks there may be as many as 24 million American adults living with COPD and that doesn't count Americans with Bronchitis or Emphysema who also need supplemental oxygen. Unfortunately, as hundreds of bureaucrats at CMS and thousands of their DMEPOS contractors who regulate access to home oxygen therapy, have their snouts in the taxpayer funded feeding trough. So this is likely a non-starter. What would work is a President Trump request to Congress for an amendment to 21 USC, §360ddd–1. Regulation of medical gases, a,(3),(A), (i) by adding "or cluster headache or migraine headache to (I) which presently states "In the case of oxygen, the treatment or prevention of hypoxemia or hypoxia. This needs to be amended to read as follows: "(I) In the case of oxygen, the treatment or prevention of hypoxemia or hypoxia or as an abortive for cluster headache or migraine headache." Again, use your own words. If one or two up to maybe five CHers go to this White House website and complain about home oxygen therapy, it's likely nothing will happen. If the number of hits goes above 50, they have tracking systems that will flag this topic. Then the odds of meaningful action go up big time. Take care... and Take Action! V/R, Batch Comments on Proposed Decision Memo CAG-00296R-1.pdf

Hey J, Welcome to the anti-inflammatory regimen and good questions. Regarding the vitamin A... Check the lable... most vitamin A preparations are formulated with both carotinoids and retinoids... What you're looking for is the amount of retinoid or retinoid equivalents totalling 3000 IU/day. If the retinoid equvalent is 10,000 IU per capsule, take one capsule every three days and you should be good to go. Regarding the 25(OH)D lab test, in a perfect world, I'd see my PCP or neurlogist to get this test then start the anti-inflammatory regimen... However, if it looks like it will take more than a day or two to get the lab test, I'd start the anti-inflammatory regimen and then see your PCP or neurologist to get the lab test when it's available. We can always work backwards using the total vitamin D3 taken to estimate your starting 25(OH)D serum concentration. For what it's worth, the online survey of CH'ers taking this regimen indicates the average 25(OH)D serum concentration of survey participants prior to starting this regimen is around 27 ng'mL... we need a 25(OH)D serum concentration around 80 ng/mL, (200 nmol/L) for effective CH prevention and to have a sufficient reserve 25(OH)D to deal with infections (bacterial and viral) as well as allergies as our immune system can consume vitamin D3 and its metabolites at a high rate when fighting off bad bugs, virus or allergic reactions. Most medical insurance companies will not acover the expense of the lab test for serum 25(OH)D for cluster headache... However, you can ask your doctor to order this test based on a possible osteoporosis due to taking prednisone... This works! Regarding the vitamin D3 loading schedule... The odds are your 25(OH)D serum concentration is below 30 ng/mL, (75 nmol/L) so you're going to need a vitamin D3 loading dose of at least 500,000 to 600,000 IU of vitamin D3 spread out over two weeks or four weeks. (Both schedules are equally effective)... There's an average gain of 10 ng/mL of 25(OH)D per 100,000 IU of vitamin D3. This is another reason why it's a good idea to know your serum 25(OH)D concentration before starting this regimen... I'll also echo Dallas Denny's suggestion to ask your PCP or neurologist for an Rx for home oxygen therapy. In March of 2015, we found that allergic reactions to pollen and other allergens, can interfere with vitamin D3's capacity to prevent CH, We also found that a first-generation antihistamine like Benadryl (Diphenhydraming) 25 mg taken twice a day can help-kick start vitamin D3's capacity to prevent CH. Benadryl (Diphenhydramine) has the capacity to pass through the blood brain barrier to block histamine receptors on brain cells... Second- and thrid-generation antihistamines cannot do this so are not as effective as Benadryl. I keep the latest updates to the anti-inflammatory regimen as well as results from the online survey of CH'ers taking this regimen posted on page 1 of the following link: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404 Regarding when to take this regimen... It's best to take every thing in this regimen including the Mature Multi (200 mg/day calcium) in the evening right after the largest meal of the day. This does two things... I helps avoid an upset tummy from the magnesium or Omega-3 fish oil, and it helps ensure maximum absorption... Regarding when to dose with verapamil, a calcium chanel blocker, it's best to take it at least 12 hours away from any calcium supplements. As a side note, the verapamil isn't likely working very well as a preventative or you wouldn't be starting the anti-inflammatory regimen... Most CH'ers who find the anti-inflammatory regimen prevents their CH usually work with their PCP or neurologist to taper off verapamil for good... Finally, nearly every CH who starts this regimen wants to know how long it will take to experience its preventative effects... The following chart from the online survey provides some good answers. As you can see, the majority of CH'ers have responded by the 10th day... We think adding the Benadryl (Diphenhydramine) can help the CH'ers who would have taken longer to respond to this regimen as well as the 19% who don't respond start experiencing relief. Take care and please keep us posted... V/R, Batch

I'm new to these boards and have found them so, so helpful! Thank you to all for giving of your time and expertise on these forums! BACKGROUND: I'm a chronic clusterhead thanks to a concussion in August 7, 2019. Since then I have never been without at least a 3 on the cluster hit scale (shadows?) and those rarely; no remissions even of a day. My high cycles tend to go in sort of bell curve, with the first 3 weeks milder than later, then ramping up very quickly and lasting for about 3 months in the acute phase. My current high cycle started on December 13, 2020, became acute on January 2, 2021, and the peak started January 29, 2021. The last time I had a break where a hit went down from a very high kipper rating (lowest 7) even a notch or two was the evening of January 28. One 180-minute hit ends and the next one begins, with no break or difference in kipper level between. (This current cycle has been without any rescue at all and maybe that's why it seems like it's longer and I'm still in the peak.) Now, thanks to Spiny, a forum moderator, I have found out about the wonders of welding O2 (couldn't get a prescription from my doctors) and have ordered my supplies. My question is this: you're supposed to start at the onset of a hit for the O2 to be effective. When the hits all run together and are of the same kipper (?) strength, how do you know when the onset is / when to start applying oxygen? Have any other chronic clusterheads run into this issue? Can anyone give me any sort of insight as to when to start the oxygen? If there's literally no way to detect the onset, do I just try different times of day, e.g. if 12 PM doesn't work, try 2 PM and see if I can hit close to the start of an 180-minute hit? I don't want to waste the oxygen; it's not just that it's expensive, but that I'll run out, possibly without any results, if I'm using it so often, trying to stumble upon a time of onset. (Unfortunately I didn't have very precise records of times when I wasn't in peak, because the same thing would happen: one 180-minute 4-kipper, say, would run right into the next one. The only periods I can ever recall as being different / better were in the evening time but alas, not knowing about O2 then, I didn't write down the times.) Thank you!! P.S. I hope I'm using the terminology right! Please forgive any lingo errors; they're not intentional. E.g. I'm guessing that "kipper" is a severity scale