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Vagus Nerve Stimulation Trial

Hey all. I’m starting this thread to track progress.

I saw my 5th(!) neurologist today. I liked her. She agreed I have Vestibular Migraine plus she diagnosed Intractable Chronic Migraine with and without Aura - Status Migraine. She also agreed I’ve been through the ringer with medications. Those two things qualify me for two things - Botox and a GammaCore Vagus Nerve Stimulator.

I’ve got a bunch of toxins in dozens of holes in me and a script for an experimental do-dad that costs a bunch outside the trial period (12 months).

Let’s see how this new strategy works out. It can’t make me fatter, destroy my liver, kidneys or thyroid, make me suicidal or any of the other side effects I’ve already tried out. The Botox can make you look like a Neanderthal for three months if that goes sideways. The VNS can give you a rash. I’m game.

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Very best of luck Emily delighted to hear you continue to move forward and trial new methods. Hope they bring relief x

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A Neanderthal with a rash? I’ll look out for you. In fact it would be hard to miss you, Em. Well it certainly won’t be long before you really can claim to have tried everything! Your journey does at least show there are many many possibilities to try. All the best with the trial. Botox-wise you can compare notes with @jojo65 and @MNEK18 but you must be our VNS Pioneer. Helen

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Oh Emily!! I really hope the Nerve Trial helps you! Failing that I dont think I could cope without the Botox! Infact I’m that used to looking shocked now my friends think I’ve always got something exciting to tell them! :rofl: like @Onandon03 Helen says I hope it works for you! :kissing_heart::purple_heart:

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:joy:

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I’m quite curious to see how the VNS works out. I like my Cefaly. It does much the same thing for the trigeminal nerve. It is a completely different approach than drugs. I’ve also looked into the binaural beats mentioned in a post last month. Great for meditation and stress relief.

I’m thinking if I used all three simultaneously either my head would explode or I’d attain enlightenment. So of course I’ll probably try it.

Let’s talk progress. GammaCore reached out yesterday (same day as the Rx was written) by text to make sure I was interested. Today they called to talk money and make sure I’m interested.

As is usual for my insurance, they won’t cover it. The cost of the thing is $598/month. The gadget is essentially free. You’re paying for charges that are given by days rather than uses. It has an internal calendar that gives you 31 consecutive days, and you use it as much as you need. They have a 12 month co-pay assistance program for cash and private insurance buyers but nothing for state of federal plans. The co-pay assistance is $300 the first month and $250 the next 11 months. That means out of pocket is $298 for the first month and $348 for the next 11 months. The second year is all on you at the full $598/month unless you can get your insurance to cover it.

They offered to work with my neurologist to try to force the insurance to pay for refills after the first month. We’ll see. I’ve done several appeals after Premera Blue Cross initially denied coverage and have won a few. More often I’ve had to pay out of pocket. (Which maybe wouldn’t bother me so much if I didn’t know the insurance costs my husband’s company somewhere in the range of $1200-$1500/month and I have a $7,300 out of pocket max I have to meet annually, but only for covered events. All other things, which in my case are a lot, are on me for cash. I’ve paid a lot in cash over the last few years, mostly for physical therapy and related care.)

You can quit the GammaCore at any time. They don’t ask for the device back, they just don’t refill the charges. In fact, they call every month to see if you want to get the next set. The device ships from Premier Pharmacy in California. I don’t know how the charges thing works but I bet it’s a code you get from GammaCore during that monthly call, cash up front.

I put away some money in my health savings account when my financial life was better. I’m going to use that to give it a 3-month trial and then see if I want to keep going. It arrives next week.

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so you already got your botox shots…how you feeling after this ?

Dr. Wei said it would take a couple of days to a week to really feel it and that the effects are cumulative so it may take a couple of rounds set 12 weeks apart. Nothing in my skin hurts at all today and there isn’t any swelling. If by the end of the third round (6 months from now), it isn’t working then it’s not going to. She also said I could expect a headache, maybe. I have a headache, but it’s not stopping me from working. (The numb hand, dizziness and photo phobia are less easy to work around.) I would have had a headache anyway because I always do to some extent. Earlier today my forehead felt kind of numb, but it doesn’t now. I asked her to underdose my face because I always find a way to be that statistically anomalous person who gets all the crappy complications. I wanted to see what the effects would be before I committed to a full dose. Too bad, too, because I’m pretty sure she was thinking she could help with those right orbital migraines that hurt so much. Whenever I get those, one pupil is tiny and the other is blown out (like all the crazy cartoon characters). I’d love to see if that goes away.

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She told me not to strain too much yesterday and not to go swimming if I insist on wearing a swim cap and googles (I do) because she didn’t want anything tight on my face, neck or shoulders. Probably I shouldn’t have exercised at all for 24 hours, but I learned that today. I rode the stationary bike yesterday for an hour. I tried to keep it mellow, but I largely forgot about it and went too hard. They were having a relay ride to raise funds for the Y. You got a t-shirt if you went 10 miles. NW Action Figure of course went 22 miles. He was right next to me. So I went 15.5 miles before I couldn’t ignore the pain in my hip anymore and I recalled the whole not straining thing. Competitive me is always writing checks my body can’t cash. I’m hoping that didn’t migrate the Botox at all. I mean, I got hot but the workout was all happening in my legs. It’s not like she said not to get a hot shower or anything.

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Awesome! I just had my neurologist appointment and was asking about GammaCore because I had such a great response to Cefaly. He said it might be better to try a CGRP for now, so I’m injecting myself with Emgality soon… You know it starts with “Em”, so maybe it was designed for you?

Per my neurologist apparently there is a new vesitbular stimulator in the works, not sure what company is working on it, but I’m excited to learn about it.

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Let’s run parallel trials!

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GammaCore comes Tuesday. In the meantime, Botox. Mixed reviews so far. My mind is clear. I’m not dizzy. I can see. I worked past 10 pm 3 days in a row. But there’s a rail spike in my noggin.

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GammaCore showed up early. Feels weird, but no weirder than the Cefaly did at first. They say it might take several sessions to see an effect.

Ok, here’s a weird thing. Not only does it make you look like you’re having a one sided stroke for two minutes, I can watch it as it dilates one pupil just huge while leaving the other one alone. That’s my go to aura signal. So the thing’s doing something.

PS there are tons of ways of activating the Vagus nerve including cold :cold_face: showers, singing or chanting, deep breaths. Try it.

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Y’all - I’m having a 95% day here. I swam a 2k. I feel good. Also, the sun is shining on a truly gorgeous day. Botox? VNS? Metformin and Ketosis? For today and hopefully a whole lot more days - yes please!

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Long may it continue for you !!

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Today was less perfect. Metformin turned my stomach inside out again - violently and often. Not sure if it’s a coincidence but the whole disaster stopped when I used the VNS. The vagus nerve goes to the gut, so maybe. It’s in clinical trials to treat IBS now. As Metformin gives me lots of opportunities to have unplanned queasy bathroom days, I’ll have plenty of chances to repeat the experiment.

By 4 pm I was hypoglycemic which always triggers a befuddled, antsy, anxious over talking but stupid MAV in me. My physical therapist finally told me to shut up, relax and let her do her job. Stupid insulin resistant PCOS messing up my nice clean MAV VNS trial. Oh well. No battle plan survives first contact.

I ate a protein snack, zapped myself again and headed off to the gym to climb a pretend mountain. That was a lot easier than I expected. :grin:

Tomorrow is another day.

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Update time as I’m 10 days in with the VNS. It’s hard to tell what to attribute to which thing I’m doing. I have four tracks going on simultaneously. I’m back into deep ketosis and have been for a month. I’m on Metformin. I’m full of Botox. And then there’s the VNS.

Today is a Thursday. I had some rough days over the weekend but my atlas slipped, did that squish the brain stem thing and made me miserable until Monday afternoon when the Atlas Orthogonal chiropractor fixed it. When my atlas slips there’s no help for MAV apparently. Nothing works though I gave the VNS plenty of tries. I stay drugged and miserable and in full aura until I can get to the chiropractor. It took a couple of hours after seeing the chiropractor but I felt hugely better. A better feeling I’m starting to think of as normal. (!)

Monday I went from my chiropractor to my physical therapist. After slow and steady progress over the course of the past six months I managed to again rotate my hip way out of joint last Thursday. So much for that froggy kick in the pool that was supposed to strengthen all those surrounding muscles. (Limping away from the pool really adds to my short, fat, middle aged sex appeal. Hot momma on an invisible hobby horse trudging through. Keep hold of your men!) On Monday the PT got it to slip back into place. It’s weak. It slipped again Tuesday, though much less severely. Today, for our 70th visit in three years, she’ll put it right again. Patience, patience. (Should I bring cake? What’s the appropriate gift for such an occasion? The co-pay check hardly seems adequate considering this woman is the reason I can walk and stand upright like the rest of the species. Surgical adhesions are an unmitigated bitch.)

Between the atlas and the hip fix by Monday night I was literally dancing in my kitchen. It was such glorious relief. And it felt natural, normal. I’m used to MAV suffering as normal. This is more like the sun coming back after a long polar night. And I drank blush wine without consequence - the joyful rapture!

Back to the what’s doing what question. I’m having mixed days. Metformin is notorious for severe gastrointestinal side effects. This is my third long term round with this drug. I’m having no trouble remembering why I’ve dumped it twice before. Weight gain from venlafaxine and propranolol and the subsequently disastrous blood work forced my hand. My endocrinologist also wants me on statins and a second heart med. Nope, not going there. For God’s sake, I already have 8 open scripts plus the VNS, Cefaly and Botox. Stupid comorbidities.

I don’t think I’ve gotten the mix of Metformin timing and ketosis quite right as I’m frequently hypoglycemic. I am, unfortunately, rather annoying to everyone around me when my blood sugar drops. Lots of rapid talk, not much sense or substance.

So that’s the background. But what’s generally missing from the foreground is MAV. Ketosis done consistently has always made me feel energetic and clear eyed. It’s what I used to use to hold off both MAV and insulin resistance before a perfect storm dropped me into chronic MAV in 2017, requiring a much more comprehensive approach.

Now I’m also clear headed. With the exception of the really obvious Metformin timing, I’m not nauseous or dizzy much of the day. I can focus. My head doesn’t hurt and there’s no pressure. I can sleep and wake up rested without MAV crashing around in my frontal lobe. Photophobia is less but probably will never be gone, same with the tinnitus in my damaged ear. I can feel the tips of my fingers, though thanks to Botox I can’t feel my forehead. On the whole, there’s reason for hope here. That’s something I haven’t felt in a long time.

I think it’s quite possible this has a lot to do with Botox. I’ll know in April when it starts to wear off and I see where baseline is.

I frankly can’t tell where the VNS features in all this. It will stop heart palpitations and that feeling like someone is sitting on my chest. It can’t overpower Metformin but it can ease the queasy, painful stomachache. If I start to feel pain or some low grade MAV indicator, it can sometimes stop that. I get the sense a continuous implant that’s firing on a fixed and regular schedule might actually prove hugely beneficial. That alone is worth continuing this trial a few months more.

One more note. Eight months ago I was crashing hard in a long drawn out, take no prisoners, catastrophic descent kind of way. One doctor told me to take serious time off because a controlled crash is better than ending up hospitalized. My therapist suggested much the same though she also threw in the threat of involuntary commitment. (Quite the wake up call for this Type A, power through, define yourself by your job modern woman.) At the time I was under enormous stress. All I wanted was a long break from responsibility. The universe was listening and promptly took away several clients and the vast majority of my income. (Be careful what you wish for. Though it did quite literally save my life.) I’ve spent the last six months coming to terms with my new situation. I’d like to say I’m there, have found peace, but I haven’t been able to face the we might lose the house issue, so not there yet. But, this whole thing sends mixed signals. If you’d asked me Sunday before I saw the chiropractor, I would have said my career is over, I might as well take up a hobby and live in a shack. Ask me today and I can’t stand the boredom and financial stress and want to jump back in the rapids or fight dragons. Last month I was pretty sure I was done. Now I’m not so sure. I have hope again which is scary because losing it nearly killed me. But, like spring, it’s budding inside me. I’ll have to find a balanced place between those two extremes - poor ignominy or dragon slaying. Suddenly I think I might have options to define myself in whole new ways.

(So much for n=1 objectivity. Too many moving parts to focus on just one theme.)

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I changed my mind and decided to let the VNS subscription slack after the first month. Two reasons -

  1. Botox cost $1200 (w/$1k insurance deductible) and I’m not made of money, especially lately. At $350/month out of pocket ($600 after the first year), the VNS is too steep to be guessing at efficacy.

  2. I either feel really good or horrible. The VNS couldn’t effectively change the latter into the former. (I gave the VNS a shot at it again yesterday before I ended up hitting it with my entire chemical rescue cocktail plus my Cefaly - twice. Today wasn’t much better but I had 11 hours of work today so no relief in the form of a chemical coma. The next two days are just as crazy. My neck just will not hold these last 3 weeks - maybe, ironically, because of the Botox on either side in the shoulders and scalp - and trigger central all weekend.) For my money the Cefaly (at $500 once plus about $1/day for electrodes) is more effective for rescue and prevention. This is doubly important given the Cefaly comes out to far less in terms of overall expense. The VNS is $298 the first month, $348 the next 11 months and $600/month thereafter - $20/day. The first year of Cefaly is $865 and it’s $365/year thereafter- it could be cheaper still if you can tolerate the longer lasting non-hypoallergenic electrodes. The second year of the VNS is $7,200. Even subsidized the first year is $4,076. For that sort of cash, I’m thinking I’ll try one of the CGRP injectables.

Given you can re-up the VNS subscription at any time, I may take this challenge up again - provided I have a better sense of baseline, money to burn, and possibly a good dose of long term desperation. If that’s the case, CGRP is probably first.

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