I have been struggling with chronic VM for the last two years. I have not been able to tolerate the common TCA’s, SSRI/SNRI, beta’s and Topamax for different reasons. Currently medication free for the last few months and have been looking to implement others interventions.
I received Craniosacral Therapy last week (one session) and received mixed results. Head pressure was instantly reduced but my dizziness was worse. Mood was better but did not want to move the rest of that day due to imbalance. I have also tried Chiropractic but the TENS stimulation on cervical area increased headache/head pressure over a few weeks of treatment.
Currently, I am using Inner Balance by Heartmath (biofeedback) and it has been only a week but am exploring that training to improve HRV-vagal tone will help improve my situation. I had heard that Chronic Migraine and low HRV are correlated when compared to migraine. I have also heard that biofeedback training for chronic migraine will improve symptoms but not improve HRV. Low HRV correlates with poor health and longevity and high HRV correlates with good health.
Glad to hear someone else has had issues tolerating all medicines. They all worked for me to some extent with Verapamil and Depakote working best for the time I could tolerate. As you will see below heart side effects are generally what I get. I had an ultrasound, ECKs, etc. and my heart is supposedly normal. These medicines are just shitty and I may have to wait until some other approach comes out.
I have tried Chiro and PT and ultimately they both made me worse over a period of time I think due to rebounding. The only thing I have consistently done is VRTs over the last 3.5 years which help and hurt.
I am currently off all meds except CoQ10 for almost 2 weeks now to give my body and heart some rest after these trials. I still have some residual affects in my left arm from some lingering heart issues which i hope will go away.
In all, these medicines work for me but are no joke. If you start to experience serious side effects, move on to the next one. There is a lot of guidance here about waiting 2-3 months for them to maybe resolve - some of the more minimal ones do. But my experience has been that most the annoying ones do not.
Keppra seems to be the next choice for me according to Hain.
Here’s my laundry list:
- Topamax - pure psychotic hell over three months - suicidal, Alice in Wonderland, insomnia, etc.
- Zonegram - heart palps, insomnia
- Diamox - heart palps, insomnia
Verapamil - heart issues
Propranolol - minimal effect but some heart issues and depression
Effexor - heart
Pristiq - heart
Nori - heart
Ami - heart
Depakote - heart
Hi just wondering where I can find more information about alternative treatments like that?
The available medicines left for me to try are narrowing down and I want to be ready in case I am not able to be treated with common medications.
Beatles909 got better without meds in 2.5 yrs. Check out his posts. Appears he just tolerated the symptoms and managed to overcome any anxiety from them.
Haha I’ve been tolerating them for 6 years mostly without medication. But it still pretty much has much more control over my life than I do.
You are stronger than I not being on meds!!
Hahaha it wasn’t voluntary. Med bills add up 
… But over the years I’ve found ways to get around what it limits me from so its not all bad.
Sorry that’s true. Here in the U.K. we are very lucky with public health care, a 3 month course of Amitriptyline is about $10. If you can manage to be off meds though that is surely ultimately better for you long term if you can contain the anxiety?
Wow! I wish I never moved then lol. & agh. I mean I should be on medication because its pretty severe for me but if I can’t all I can do is be positive & work to find alternatives. & the anxiety, I have a separate mental diagnosis I’m not sure if the MAV contributes or not. I wouldn’t be surprised.
I wouldn’t be surprised. MAV is extremely testing.
I don’t think the medication used for MAV actually treats the underlying condition, it just manages the symptoms.
Imho the underlying issue is probably the inner ear somehow and only time and the body will heal that with current technology.
You’d probably want your body to heal it anyway as I’m not sure id want a surgeon trying to fix something so small and delicate !!
This is why I believe most doctors believe in the ‘conservative’ approach with meds only.
Trueeee! It takes a lot of strength to deal with chronic illness.
& no, Migraines currently have no cure since no one knows what causes them. The vertigo & other visual,gastro, psych, sensory and so on problems that are experienced are a symptom of migraine. It doesn’t have anything to do with the inner ear when its mav, that’s only when its regular Vertigo. Its your neuro system being out of whack and messing with your vestibular & balance system which is also located in the brain.
I’m not so sure. I don’t have a history of migraines and I know I injured my ear. I am living proof that insult to your ear can cause MAV. Migraines came on well after dizziness and tinnitus began. I believe wholeheartedly that migraines happen when the brain can no longer deal with instability from the senses. In my view the migraine is the result of the brains learning algorithm reaching a tipping point. I know my ear lesion is unstable as it fluctuates so much and I did not respond to VRT for this reason. I am certain I have fluctuating levels of air in my labyrinth and I know this is affecting my balance sense as air pockets get into the canals. I’m also confident that eventually this will go away, but it’s really annoying whilst it’s still in the process of healing. For sure others may have migraines for different reasons but I don’t believe for a second you get vestibular migraines without it being to do with some imbalance or instability in your vestibular system and that includes the peripheral senses. For sure it could be central too but it’s VERY much harder to injure the brain. And of course I recognise that different people have different migraine thresholds and this definitely alters with age too.
That’s really interesting, I’ve heard of people getting Chronic pain from Injuries but not migraines & yeah migraine brains are definitely more sensitive to outside stimuli.
I would bet almost any brain would get a migraine if it’s pushed beyond its envelope. Poor old brain, it is only trying to help. It’s an AMAZING piece of kit.
If you take a look at Hains website he lists Menieres, BPPV (‘the spins’) and Perilymph Fistulas, all issues with the inner ear, as potential migraine triggers.
I’ve read hypothesis that BPPV might be caused by air that gets in via a fistula.
I’ll check it out. Its just www.hains.com?