Looking for Help with Cyclic Migraines

[LilyClimber]

Hi all, 

I know this primarily a forum for folks coping with cluster headaches, but I'm looking for some advice on dealing with cyclic migraines, which I've had for the past 2 years. They present as migraines that last for 2 months, basically one long headache with days of worse headaches in between, only to stop completely for a month and then start again. They're not cluster headaches, but they do often respond to triptans- I currently use rizatriptan for the bad migraines and naratriptan to help with the constant headache, but I have to use them almost daily to get relief. But with quantity limits on the triptans and rebound issues I can't treat them every day. I've also tried a couple preventatives and am currently using verapamil 120 mg, but it doesn't seem to be working, as I'm in a headache cycle that's been ongoing for a month at this dose and I've been taking the verapamil for 2.5 months.

The only lasting relief I've had has been on nortriptyline 20 mg/day at night. However, I'm a rock climber and I found that the nortriptyline affected my muscle strength to the point where I could only climb at a quarter of my physical capacity, which had a devastating affect on an activity that honestly keeps me sane. I'm loathe to go back on this drug, despite the fact that it has been the most helpful of anything I've tried. Some of the traditional migraine preventative meds aren't a great option for me as a 31 yr old highly active woman, so my neurologist has tried to pick preventatives with side effect profiles that are manageable- so no propranolol, no topomax, no depakote etc., our next trial will be an anticonvulsant and after that botox. I've recently found an old scientific study done back in the 1980's that specifically targets cyclic migraines, and claims that lithium is an effective medication. I have not discussed this with my doctor, and I'm not sure if lithium would be any better than nortriptyline (probably worse). 

So long story short- I've become very interested in the busting strategy that cluster headache sufferers use, but have not been able to find much information for migraneurs. If any of you have insight into how this might help migraines or personal experiences I would be very very grateful! I have access to both mushrooms and lsd, but I've never used psychedelics of any sort and am just interested in potential for headache treatment. 

[jon019]

Hiya Lily...welcome,

….I'd definitely give Botox a try....my past primary neuro was involved with a study (ies) which demonstrated efficacy for migraine (not so much for CH, the sponsors wouldn't let me in the study)……….

….also check out the Vit D3 regimen....and I'm blanking a little, but believe there was a thread here or ch.com which discussed thiamine (vit B1) as being effective for migraine...try the search function......

….re busting and migraines..... I'm sure others will be along to discuss

Best

Jon

Edited July 23, 2018 by jon019

[xxx]

Hey Lily,

I've sent you some information on the anti-inflammatory regimen with vitamin D3 and the cofactors as a method of preventing your migraine headaches.  Several migraineurs have also reported that they've successfully aborted their migraine headaches with oxygen therapy at oxygen flow rates that support hyperventilation (15 to 25 liters/minute) or another method I've developed that calls for hyperventilating with room air at forced vital capacity tidal volumes for 30 seconds followed by inhaling a lungful of 100% oxygen and holding it for 30 seconds.  You keep repeating this sequence until the headache pain is gone.  That usually takes an average of 7 minutes... That's clearly a lot better than 3 to 5 days of migraine headaches.

Take care,

V/R, Batch

[CHfather]

Lily', I'd do the D3 regimen for sure -- and, to partly answer your original question, several migraineurs have reported here (usually people with both CH and migraines) that busting was very helpful for them.  MoxieGirl has written a lot about that over the years.  I don't know how to easily find what she has said. I entered [moxiegirl migraine] into the search bar at the top right, but got a bigger mixture of posts than I had expected. But you can find things using the search bar if you're persistent enough, or maybe go to her member page -- https://clusterbusters.org/forums/profile/19896-moxiegirl/  -- and look through her posts.  I know that Moxie started by doing "standard" dosing with psilo and seeds, and I'm pretty sure that worked, but then she modified her approach later.  Sorry I can't be more helpful.  You could PM her from her member page, too.

Has anyone suggested that new migraine preventive, erenumab (brand name Aimovig), as something you could benefit from?

[ClusterHeadSurvivor]

I was gonna add what was already said above D3, but oxygen has been effective for some and also marijuana helps me. It wont break my headache but its less injections and less pills and far safer and as effective when in pain. 

Pain Free WIshes

[LilyClimber]

Thanks everyone for weighing in. I'm going to give the D3 regime a try. As for oxygen, I don't think that will be easy for me to obtain through my doctor or approved via insurance as I don't have CH, any ideas on how to get it otherwise? 

I will also talk to my neurologist more seriously about botox, I know I've tried enough preventatives that I can qualify, and have frequent enough migraines. I asked him at my last appointment about the new drug Aimovig, he said that he will likely be slow to start prescribing that as drugs that have targeted CGRP in the past have had problems with toxicity, and it's currently $8,000/year which is prohibitively expensive for most (including me). 

[CHfather]

8 hours ago, LilyClimber said:

 As for oxygen, I don't think that will be easy for me to obtain through my doctor or approved via insurance as I don't have CH, any ideas on how to get it otherwise? 

Many people with CH set up oxygen systems using welding oxygen, and it works fine for them, with no apparent complications. They rent or buy tanks from a welding supply company, and buy a mask and regulator online.  Batch is usually (always?) right about things, which might make it worth the investment for you to test this with a small tank of O2.  Total cost for the test would probably be around $100.  Some CH people have found that EMT folks or firefighters might let them use their O2 in a pinch, so I suppose that might be a significantly less expensive way to try it, but one or two tests might not be enough to tell you definitively whether it helps you or not.

[Siegfried]

Hello Lily,

If possible you must give oxygen a try. I am one of those rare cases where the very serious migraine w/o aura that I am suffering from since a child has gradually morphed into CH over the last 8 years but with still some typical migraine characteristics (like every attack takes 12 hours to gradually build up to its maximum, then pull back to 50 % of the pain for a few hours and then increases again to maximum and so on). When at maximum I have all the typical CH symptoms but honestly I have never thought of CH until I visited a migraine/CH specialist neurologist. He diagnosed it as CH and prescribed me oxygen. It has really been a lifesaver for me and it helped me cut down the triptans to a very minimum. If I would not have gone to him, I would never have known that oxygen actually worked for me ! However, to get through the worst periods I take 120 mg veparamil which helps a lot as well.

If you work with oxygen, you better take the habit to act fast. From the smallest onset of sensation you feel, run to the oxygen bottle and breath in/out for 15 min (15 l/min) as deep and as fast as you can. Its a laborious process ! After 15 min you should feel lightheaded and the affected side of the head should feel very relaxed and "open" and the sensation of pressure on the temple and behind the eye should be gone. That means it has worked. If you try it a few times and after 15 min there is no change and the migraine still comes through then oxygen will probably not work which is not a shame. At least from what I read about it, hyperbaric oxygen therapy is more suited for migraine and normobaric seems only to work for some migraine patients where some CH characteristics are already present.

All the best !

siegfried