What do these three treatments have to do with Migraine Vertigo? If this person said “I didn’t say it treats vestibular migraine” then why was the topic posted on this site? Can we please bring this forum’s conversation back to its original purpose, “www.mvertigo.org” and not go down the rabbit hole? I know there are many folks with many conditions that overlap, including me, but please focus on the primary condition and limit randomness when possible. This is of benefit to new users who may otherwise not find what they need due to all the other noise.
I just want people to be safe…taking an unapproved, unstudied therapy is a great way to not be safe. I would assume that we can all agree that having procedures done to our bodies that haven’t been adequately studied/approved is a bad idea, but I guess people believe crazier things.
stay safe, everyone 
Cervical instability is a cause of both migraines and vertigo. And the more I read about Hypermobility the more I think MAV is either a subset or a co-traveler.
If you’d like to have a respectful conversation about my experience with this, please DM me. I speak from a base of lots of research and years of personal experience with this treatment and topic. I am a person of faith but do not bring that into the subject. Don’t throw the baby (a promising, recognized treatment approach that is no miracle cure but likely to obtain official approval in a few more years of ongoing clinical trials) with the bath water (providers with agendas). My treatment modalities are well researched, informed and performed by well respected medical doctors - physiatrist MD surgeons with strong reputations in hospital privileged surgical practices. No quackery involved.
My neurologist and neurosurgeon would disagree cervical instability doesn’t exist. So does my MRI and more than a few sets of X-rays over the years.
I hope to God you all never learn what Hypermobility does. I wouldn’t wish my condition on anyone. Not hEDS or MAV.
I’m not selling anything. You all do you.
As I said, prolotherapy is not regulated by the U.S. Food and Drug Administration (FDA) and most studies have found no scientifically-provable benefits. Some experts do not recommend prolotherapy at all, while others suggest it only for certain cases of chronic low back pain. Prolotherapy is not a standard treatment for any disease, condition or symptom and it does not cure any of them.
Whether prolotherapy is quackery or not depends on your perspective and expectations. Some people may find it helpful for reducing their pain, but these are anecdotes and may not represent the underlying truth that is captured through more rigorous study methods like clinical trials.
You do you; at the end of the day everyone has the liberty to do what they please with their healthcare treatment. Be safe, be informed, make good decisions and demand high-evidence based treatments. In a world where anyone can say anything about anything, data is really all we have to source the truth off of. That’s why its better to go with approved treatments in this case, but I understand that everyone has their own paths when it comes to making their healthcare decisions.
I don’t want to demean your experience; if you think it genuinely helped you, that’s great and I’m happy for you . I just wouldn’t recommend that people do this over exploring more concrete proven treatments first
It’s in clinical trials. That’s how medicine works.
You don’t know me. You don’t know what I know. My experience is my own. It cannot be demeaned by anyone.
I appreciate your concern for this community. It’s been an important part of my life for many years. Your concern for everyone’s safety is admirable. I’d ask that communications between the members of this rare community be open minded and respectful.
Remember - MAV has only recently been legitimated as a real diagnosis and almost all of the meds - all 18 I’ve trialed - are off label. Only the CGRP meds are migraine specific. Even the Botox is off label. I’m very glad to those who participated in pre-FDA approved clinical trials.
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I have Fibro and joint hypermobility syndrome hence why I was interested in cervical instability. I wondered if my neck could be causing my imbalance symptoms. Rather than MAV. I did mention it in my previous post.
It’s in clinical trials. That’s how medicine works.
While there are a handful of clinical trials registered for prolotherapy, many of them have been terminated due to operational reasons. There are open clinical trials for Essential Oils in the treatment of disease, but this does not make them a legitimate treatment. The act of collecting the data itself does not legitimize a treatment; its what the data shows. The fact is that there is no data that suggests prolotherapy as a viable treatment for any disease as of 2023.
Like I said, nobody is taking away your experience from you and I’m not trying to be disrespectful, but the facts are the facts: it’s not approved and there’s no data to suggest its use.
Remember - MAV has only recently been legitimated as a real diagnosis and almost all of the meds - all 18 I’ve trialed - are off label. Only the CGRP meds are migraine specific. Even the Botox is off label.
While this is true, you’re conflating off-label use with prolotherapy, which is not even close to the same level of status. All off-label treatments are still approved and monitored by the FDA.
I will not be responding to further replies to this thread. It has become too contentious and the argument has become cyclical.
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Same. Plus MAV and several others. There are a lot of co-travelers with Hypermobility. Eventually they’ll figure out the genetic links. Best book I’ve ever read on the subject is called Disjointed. The neurology and specifically the discussion on cranial instability are quite relevant here. The book is 38 chapters and just shy of 700 pages. It’s a compendium of 32 specialists from every related field - neurosurgeons, neurologists, cardiologists, gastroenterologists, physiotherapists, psychiatrists, psychologists - a who’s who practical guide to the many systems issues related to connective tissue disorders. I read it cover to cover. I bring it to specialist appointments. I wholeheartedly recommend it.
I have zero financial gain from recommending it. It helped me significantly.
Hence, more noise. Done with the thread as well and will not reply anymore. Will take another hiatus. This is why I have not been visiting the site in the last couple years. It helped me tremendously at the start in 2013 to 2016 when I was first searching for clear, concise and on topic answers and intermittently afterwards. It has become a flood gate for anything tangentially related to primary migraine vertigo / vestibular migraine.
My neurologist first sent me to an atlas orthogonal chiropractor in 2018. That practice has helped my migraines and dizziness for years. Often when Botox, Ubrelvy, Emgality and all other meds and exercises fail, that specialized type of chiropractic is the only way to break a long migraine - particularly when my atlas is subluxed and triggering brain stem aura. It’s my last stop when I’m considering the ER (A&E). So far I’ve never had to return to the ER since 2017.
Guys lets take a break from this Topic
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We don’t just cover Vestibular Migraine here, far from it. Have you looked at the site description recently? About - mvertigo.org vestibular disorders support forum
The current month’s top trending search term is:
The domain branding is under review.
Someone posted about this therapy in another Topic, which I felt was somewhat off-topic, so I moved it to a dedicated Topic, in this more appropriate location. Regardless of its specific usefulness it’s actually a good thing to have an open conversation about it, imho.
You are not compelled to use the whole site.
This topic was automatically opened after 12 days.