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Thanks @Bejeeber. I would refer to the earlier posts I have shared on this migraine forum in respect my evolving understanding and views of both CH and migraine and the related alternative treatments as to the options that the OP may find worthy of her investigation; not much has changed from my side. @Amy R, welcome and glad to have you join. I would ask what alternative treatment your friend tried and found success with; whether using psychedelics or the vitamin D3 regimen, both popular alternative treatments you will find well discussed on the CH forums. It is only my personal view as a CH patient and someone who tries to read as much as I can about headache research that there is an evolving literature suggesting a correlation with gut health / microbial dysbiosis and migraine. Whether this is applicable to your migraine type I could not offer comment although I would say that the vitamin D3 regimen and psilocybin in more recent literature are both shown to shift the microbial landscape in the GI tract towards a less inflammatory profile, reducing systemic inflammatory burden and this may be a contributory pathway that correlates to some of the improvements we see in CH - the jury is still out. I would encourage you to check out the resources relating to the regimen either here or at www.vitamindregimen.com - download the guides or watch the videos and see if it is something that resonates with you to explore further. One thing that cannot hurt is having a baseline 25(OH)D vitamin D lab test to see what your level is. As for the approach of busting for migraine, I would only say that my recent experience using psilocybin for CH was both successful and an incredibly fruitful experience for my soul, and as to whether the emotional release of the medicine (only a 1g dose at 5 day intervals) had anything to do with its prophylaxis for my CH cycle is again not something I can offer any literature to support but certainly for me it felt that way. I anticipate to continue with this quarterly as a preventative strategy and spiritual / tension release alongside my continued commitment to staying on the vitamin D3 regimen year round for CH prevention and overall good health, fingers crossed. Another thing I have found recently to try and release tension and relax a bit more has been to do 2 or 3 TRE exercises per week in the evenings before bed. Strange, funky, odd - not something I would have normally tried had my odd sibling not suggested but weirdly and entirely relaxing! Every time we do these my wife is lights out within 5 or 10 minutes. I have found myself a little more relaxed so far. It is off topic to share this and I apologise but here is a video that explains it! https://www.youtube.com/watch?v=QoB9wpuO688 Hope that is of some value, I feel like I have drifted - and its very much a post from the lens of a CH patient not versed in your specific migraine type thus treat with caution and make of it what you will. Wishing you well on the journey of discovery, hoping you find your answers. Cheers, Craigo.

Thanks for joining and sharing your experience and journey. Long may your extended period of remission remain and best wishes to you.

And one other thing: Topiramate (AKA Topamax) is actually pretty unpopular with those who have been on it, due to the pronounced cognitive hit that often comes with it, rendering patients 'dumb'.

Hi Amy, I'm sorry this migraine board has been pretty inactive - I'm just a clusterhead responding here who has a general impression that while some CH treatments such as oxygen are ineffective for migraine, the CH alternatives mentioned below can work for migraine, and hopefully(?) vestibular migraine (it's sudden dropping sensation symptom in particular sounds horrible). Busting info is found at the blue "New Users" hear at top of page https://clusterbusters.org/forums/announcement/7-new-users-please-read-here-first/ And the D3 Regimen is known to be effective for migraine: https://clusterbusters.org/forums/topic/1308-d3-regimen/ These knuckleheads CH'ers @Dallas Denny, @CHfather, @Craigo are just a few of the CH regulars here who know a lot about this stuff, and who may have further input, so I'm tagging them, thinking they might be alerted to this topic that could otherwise be missed.

Hi, I have been recommended this forum by a friend who has found success in alternative treatment for cluster headaches and am wondering if there has been any research/ success with treating vestibular migraines? I have been struggling with vestibular migraines for 4.5 years, initially being treated for vertigo until being diagnosed by a neurologist. My symptoms include a sudden dropping sensation (as if I’m on a roller coaster), feeling like I’m falling, general dizziness and anxiety after an attack. I also have visual issues, usually starting with “static tv” vision. I rarely have pain but regularly have pressure in my head. I have been prescribed Propanalol, sumitriptan, rizotriptan, amitriptyline, pizotifen, prochlorperazine and Citalopram. Rizotriptan usually helps ease the migraine slightly, but not when I’m having a bad attack. The next step would be to try Topiramate, however I’m a 27 year old female so it would be difficult to be prescribed this on the NHS. Has there been any research regarding alternative treatment for vestibular migraines? Any input would be appreciated

Hey again there @jimmyogden sure thing. Again I am just a patient that read a few too many studies and followed Batch's work so please take my commentary as exactly that but... reference ranges vary slightly by laboratory, most common ones are: Serum calcium: 8.6 to 10.2 mg/dL (2.15 to 2.55 mmol/L). Your result was 9.0 mg/dL. Intact PTH: 15 to 65 pg/mL (some labs use 10 to 65 or 16 to 77 pg/mL). Yours - 47 pg/mL. If Pete were active I am confident he would say thats a green light to take another loading as your PTH is relatively high and your calcium on the lower side of mid-range. The risk of issue with a further loading dose is minimal and the benefit of further CH improvement is a goal worth aiming for IMHO. But even increasing to 25,000iu per day for some time I am sure you will see an improvement. I am remiss that I did not mention magnesium in my original reply albeit just made a presumption that you were getting the 400mg or as much as tolerable. Whilst some would say its used up in the conversion of vitamin D3 through its various forms, I know as much as to say it is a necessary cofactor in those enzymatic reactions but just like the starter motor in your car, it isn't consumed each time you turn over the engine but you do need sufficient amounts of magnesium as you increase the demand on the liver to convert the vitamin D3 into its storage form 25(OH)D - the form we measure in the lab test. Anyway good luck take care keep us posted.

@Craigo Thank you for your reply. I will def order some drops. Here is my info you requested. Again thank all of you for the help. Baseline before loading was 32 normally for me Loading was the 50000 daily for one week and 40000 daily for one week Body weight is about 230 Calcium 9.0 PTH, intact 47 pg,ml I have currently imcreased my vitamin D to 25000 units per day

Greetings to all thanks @Dallas Denny and hey @jimmyogden, great to hear the headaches are better- that is the main signal and a drop in attack frequency even without full remission is a signal the regimen is doing its job. Hopefully with a few tweaks you could get more improvement. First, @snafu is spot on about the fatty meal. D3 is fat soluble, so a capsule taken midday on an empty stomach can leave a chunk of it unabsorbed. Moving it to right after a meal with some healthy fat is a single easy change and on its own it may lift your numbers. On the 56 to 52 reading, I would not read too much into the drop. Most D assays carry a 10 to 15 percent margin of error, so 56 and 52 are effectively the same result. You are sitting stable in the low 50s on 25,000iu a day, and that is useful to know. The question is less why is it not increasing and more how do you push it up. Before I suggest anything I know Batch would ask for a few numbers: What was your baseline 25(OH)D before you loaded? What was your total loading dose (the standard 600,000 over 12 days, or something else)? Roughly your body weight or BMI? D distributes through body fat. If you can get them, your PTH and calcium (albumin corrected) from a recent panel. That's some private info so feel free to tell me to piss off or rather DM or whatever you are comfortable with. With baseline and total load you can work out roughly how many ng/ml you gained per 100,000iu and from there how much more you need to reach 80 to 100ng/ml. Options to consider, in the rough order I would try them: Switch to a nano-emulsion or micro D3 drop. These bypass a lot of the GI absorption bottleneck, so you get more into your blood per unit. If absorption is your limiter, this moves you without raising the dose much. Where are you located, perhaps can find a link to suitable product. A partial top up load. As a rough rule of thumb, 100,000iu units shifts serum about 10ng/ml. To go from low 50s to the 80 to 100ng/ml band you are likely looking at something around 300,000, taken over a few days the way you did the original load. For context, that is not an extreme number. Renu Mahtani used 600,000iu loads across her psoriasis case series of around 90 patients, with some staying on 30,000iu a day or more until clinical remission and adjusting from there. And here in NZ, Starship runs stoss therapy at a single 600,000iu dose for deficient kids aged 5 to 18. So an extra 300,000 spread over a few days sits well inside what is done clinically. That said, you would want to see your PTH and calcium and hopefully are able to discuss with your doctor A short course of calcifediol instead of cholecalciferol, then back to D3. Calcifediol is already a step down the activation pathway, so it raises 25(OH)D faster and more reliably, handy if absorption is the issue. A short run could lift you into range, then you revert to normal D3 for maintenance. Hope that is of some help there mate, again - feel free to DM. Cheers, Craig.

@jimmyogden I've sent a message to @Craigo who is the protégé of Batch, the clusterhead who came up with the D3 regimen.....however, he's in New Zealand so may be tomorrow before he sees my message but I'm sure he'll have some answers for you. Dallas Denny

I appreciate the reaponse. Yes i am taking all of the co-factors. I am taking capsule had trouble getting the drops. But i usually take them midday and not always with food so I will adjust it to be with food

are you taking all the co-factors? they are essential for better vitamin d3 absorption. are you taking capsules or drops? if you are taking capsules you should always do so after eating some kind of meal which contains healthy fats. again this is crucial for absorption. this also goes for drops, which are basically some kind of oil to transport the vitamin d3, but not to the same extent. but it is always beneficial to not take these supplements on an empty stomach. for a fat soluble supplement this is important. it seems strange that at that dose your levels are dropping. maybe take another test to see if this is really your current serum level.

@Craigo can you help?

Followed the regimen to the letter even the same brand. After load dose d serum was 56 ng/ml. Continued taking 25000 units daily for next 5 weeks. Headaches are not gone but drastically better. Took d serum test yesterday and it is 52 ng/ml. Looking for suggestions on getting vitamin d serum into the 80 -100 range

Try to look at other medical supply stores. I know that there are certain medical oxygen supply companies that require you to get the machine and tanks. There are medical supply stores that sell the tanks by themselves. I just went and asked different medical supply stores until I got one where they just sold the tanks. There were a few that didnt even sold oxygen. So again, look around until you find what you need.

Napa in my town exchanges tanks.

Thanks anyways. I was just wondering if anything like this had come up. Just like the clusters nothing is ever found in existing tests. Related or not I can't be sure. Even cluster headaches still isn't even well known by doctors.

Thank you everyone. You've reminded me that there are options, giving me back some hope. I'll ask my neuro about submitting another authorization, and fight it if denied. The problem with my medical o2 supplier is they wouldn't lease me the tanks without the 2 machines... drove the cost way up to $230-280/mo. For the welding info and resource links -- thank you, very helpful. I'm less (or un-)concerned about cost, and more concerned about safety. But you all have re-assured me it's regulated...

It was very hard to get anyone to help or listen during the late 1970s to the late 1990s They thought I had sinus problems,even the emergency dept thought I was making up stories.I didnt even know till recently what I had wrong with me I thought it was the afrer effects from a blow to my head when I was 15. I thought I had a concussion.But I do have sleep problems to this day,but no attacks .Thank God

Thats Tylenol#1 with codeine.

I 100% agree with the advice given in the previous 2 comments @Leonardobjork!!! Clusters are a deep brain neurological disorder and the pain associated with it are the result of swollen blood vessels applying pressure on the Trigeminal nerve ganglion!! In over 20 years of being in online clusterhead communities I've never read anything to suggest that Clusters can move from the head to the chest!! I wish you the best in finding out what is going on! Dallas Denny

What he said ↑ Go get that checked out. Don's think this is cluster related

I have also seen on Craigslist and other facebook free stuff type places people getting rid of empty tanks they have from older family members that passed away or just found in the garage. I grab them and add them to the mix for getting refilled. I figured if they are bad the refill place will know and trash them. It just adds tot he supply chain if they are good.

I do not use insurance to get my oxygen. I just got the prescription from my neuro and took that to a medical supply store that sells oxygen. For me you can buy a small tank for 120 dollars, I live in Texas. Once you have your first tank, you can exchange the empty one for a new one for 20 dollars. I am sitting on a very comfortable 8 tanks at the moment. Is it expensive to start? yes. Is it worth it? yes. Oxygen saved my life.

You need to be checked out for something besides clusters. Like today, like right now!