I have heard the explanation that certain chemicals get released into the extracellular fluid and cause chronic symptoms as long as they stay there. If this is the case, what change would preventative meds have?
Does anyone have a different explanation? Just curious!
I don’t think anyone fully understands the whole story with migraine. If they did, we might have better drugs to take. Baloh himself said this.
The chronic state is best thought of as you standing in a pool of water. The chonic migraineur has water lapping right under their nose and it takes very little to cause some water to wash over you and feel symptomatic. Just getting out of bed might do it. The water level is your current threshold. Removing triggers drops the water level and you become more robust. If that fails, then taking drugs makes you grow taller in the pool. It’s like an artificial leg extension.
I know you have probably read about the Duke study, and I think that it may begin to provide the answer for the chronic, and even sometimes fluctuating symptoms that people describe here, and the doctors think could potentially provide some insight and answers to migraines. Some of the drugs used to treat the symptoms of high pressure are also used successfully with MAV, such as amitriptyline or the anticonvulsant topiramate , Effexor and Diamox.
High and low csf pressure have many of the same symptoms, and for those people who have had a spinal, any surgeries of the head or spine, or any injuries to the spine, may want to be checked for csf leak. Unfortunately, the normal range of csf pressure is not well defined, and what they are doing at Duke is doing an LP and then testing whether added or decreased fluid has any impact on symptoms. I can speak from my personal experience that the results of having fluid added, that it was truly an amazing result of how much clearer my head and vision were after having fluid added. Some people have actually had their hearing restored on the table! I honestly didn’t know how bad the symptoms were until I felt good again. Way better than a good day with MAV!
As you can see from my signature, I have been having trouble getting the patches to hold, the blood or glue they use is temporary (lasts about 3-4 weeks) and is suppose to begin an inflammatory process to get your body to create its own long lasting patch. My body is not cooperating, so I feel GREAT for 3-4 weeks, and then back to MAV brain again. My patch results are not typical, most resolve on the first try. Since I have been through 3 patches, and three periods of feeling better, and then worse again, I have a very good personal understanding/experience, about the difference between what feels normal and what does not. If my pressure was high, I would be able to control it with some of the above mentioned MAV medications, but those would (and have) made me feel much worse.
I do not believe that this theory of csf pressure competes with any of the strategies discussed on this website. I think it goes hand and hand… the csf theory could just provide a reason for some brains to be more susceptible to migraine and imbalance than others. There have also been some threads about Lyme disease, and I think it is possible that Lyme could also be a factor causing MAV symptoms. There is no “cure” for MAV, doctors don’t understand the root cause well enough to suggest a “cure”, they just manage it. I hope doctors continue to look for the causes. I am glad I found the cause of mine, and still hold out hope to get a long term patch!
inafog, this is some new stuff to me! mind if i ask a few questions?
So basically the csf theory states that low or high csf could cause a person to experience migraine activity, when they otherwise probably wouldnt? If this is true, then that would explain why some people experience MAV without history of migraine at all. I have never had any spinal surgery or injury, so I would probably be a better candidate for having high csf?
You can find the results of the study which will be presented at April at a National Neurotology meeting. Here is the description of the completed study posted at an earlier thread.
Basically this study was intended to see if by altering csf pressure in people with chronic migraine or imbalance and the reduced mentation could see relief by adding or removing fluid to change the pressure (not worrying about whether the patient fell within a true “normal” reading". ) Most of the patients referred for the study had been previously diagnosed with Menieres, MAV or vestibular migraine, and were referred by neurologists or neurotologists.
Here are some excerpts.
Patients: Patients with chronic subjective vertigo, migraine or head pressure, with or without other
complaints and clouded mentation
Intervention: Diagnostic lumbar puncture with opening pressure measurement and addition or removal
Conclusion: Chronic subjective vertigo with migraine or head pressure, clouded mentation with or
without other otologic complaints is often caused by abnormal CSF pressure. Removing or adding CSF in
many of these patients provided immediate relief of their symptoms. Lumbar puncture should be
considered in these patients.
Define Professional Practice Gap & Educational Need: Lack of contemporary knowledge of treatment
for chronic subjective vertigo and migraine headache leads to many patients receiving suboptimal care
Learning Objective: To learn about potential causes of chronic subjective vertigo with migraine and how
to treat it
I hope that answers your questions. This study is still ongoing, the report is based upon initial results of patient outcome while on the table. There is also a retrospective study underway which is monitoring the patients over the longer term, where they rate their symptoms each month.
So perhaps it is the underlying issue such as csf problems or Lyme that is the chronic issue and MAV is the result. This is all in study phase, but certainly with my experience, it makes total sense to me. I had been diagnosed with BPPV at first, then right otolithic hypofunction, then MAV.
I have chronic MAV and Dr. Gray at Duke is 90% sure I have a CSF leak from a spinal block I had with the C-Section of my last child. I go Fri. for my patches. Have you had any surgeries? Low pressure and leaks are more rare than high pressure. And as inafog wrote you Duke is proving that the “normal” pressure is poorly defined.
BTW NONE of the meds I’ve taken have helped. The verapamil has helped a bit with the headaches but nothing else did a thing. And I’ve tried lots of meds.
Thanks for the info both of you!! Its exciting reading about leading edge research, I really wish I would have gotten into medical research…
I have never had any type of surgery that would cause csf leak. Do you think there is still a possibility? In order to do a blood patch, do they have to know where the leak is? If so, how do they find it?
I will keep this in mind in case I dont get better after perilymph fistula surgery, and if migraine meds dont help.
My ENT I see, tells me that there is no way I have MAV for this reason:
I can go for a walk outside and feel fine. But the minute I sit down and read… instantly feel dizzy.
Or the second I lay down in bed… instantly feel dizzy. He said so what… you have an instant migraine with vestibular problems,
then you stand up and it goes away, you sit down and bam its back… makes no sense. I see his point to this.
Im different than many on here. I can close my eyes and walk a straight line, maybe in jog one. Drive in the car. Heck when Im out and about
I feel better! I eat whatever, and have caffeine. No headache. Previous BPPV resolved with Epley.
So why is it when I clean the house, read or lay down I feel dizzy.
Kristina- I am obviously not a Dr. and with all due respect to your ENT I would seek a second opinion. There are a lot of people on this forum that feel the same way and indeed have MAV. My neuro said there are “no rules”. I would definitely talk to Scott about the diagnosis.
Thank you. I have had a second and opinion and he disagrees as well. One doc says MAV, but when I left his practice, I got my chart notes, and even though he told me that it was MAV. Chart actually said. “possible” he then had a list of like 12 other possibilities… so he really didn’t know.
I decided to go and see Dr. Brown. As the neuro referred me and he is actually on this website being noted as one of the top. He happens to be 30 min’s away.
So I will see him and go from there. Unfortunently its not until February 21st.
Don’t be put off by the ‘possible’ tag, that’s in my notes too ‘possible aural fullness, possible MdDS episode(s)’ etc but the neurologist still tells me migraine and still wrote that on my medical certificate. I think they leave ‘possible’ in there because a lot of our symptoms, because they arise from the brain, are subjectively felt and can’t be measured. In many ways it’s a diagnosis based on exclusion and based on our reported symptoms.
It’s more likely migraine than something else.
I understand how a migraine can cause dizziness/vertigo whilst experiencing one, but having 24/7 symptoms even after the initial attack is gone seems odd to me. I also don’t get why some people get complete relief from migraine meds, some get relief of some their symptoms, and others get complete relief of only some of their symptoms. Why do some people only get 50% better in regards to their dizziness and not 100%? It makes me wonder if those with chronic MAV are actually suffering from something else :?
— Begin quote from "darkice101"
I understand how a migraine can cause dizziness/vertigo whilst experiencing one, but having 24/7 symptoms even after the initial attack is gone seems odd to me.
— End quote
I too have never quite understood this, and have never seen a suitable explanation (probably because not enough is understood about the condition for anyone to provide one!). For example, a long time ago, it got me wondering whether 24/7 dizziness due to migraine literally meant that the migraine mechanism was running 24/7, and I started a “24/7 migraine - is that possible?” thread, here:
dizzytimes.com/showthread.ph … t-possible
For me, I have a certain ‘baseline’ level of dizziness, that is 24/7 - then I have times where it ramps up and the dizziness increases above my ‘baseline’ level. During these times, I can feel the migrainous activity in my head, as a kind of ‘tingling’, sometimes as a heaviness - sometimes these last an hour or two. But I then get what I call ‘attempted mini-spin attacks’ (and what I 've seen others, like Muppo, refer to as ‘brain zaps’), where there is a sudden feeling of imminent vertigo; these are different from my other, ‘milder’ attacks, because in these more sudden attacks the actual world feels like it will start to spin imminently. These ‘attempted mini spin attacks’ have really decreased in number with the use of meds, but the milder attacks are still around. And as you said, I don’t quite understand what the underlying cause of the never-ending, 24/7 dizziness is (assuming of course that there’s no other underlying vestibular issue/damage, etc). But, if some people can have this 24/7 dizziness fixed by the use of meds, then clearly there must be some complex ‘chemical’, and neurotransmitter-related functionality behind it all…?
It’s all so frustrating…
Your symptoms make more sense to me. I have a low base 24/7 dizziness. That gets ramped up by reading, cleaning the house ( when lots of head movement, like picking things up, bending over to do laundry etc…) and when I lay down.
I tested this the other night and its so wierd. I lay down all the way except for my head. I slowly put my head on the pillow. Dizzy! Take it off and it a more upright position, while body is still completly flat. Fine. Lay it down… dizzy! See my concern? Mine is positional. And stops as soon as I stop doing what is irritating it. BUT I have a low key constant dizziness. No more actual vertigo. Thank God.
What you have is called “head motion intolerance,” which is a symptom of MAV. I had it too. Turning my head to one side, even eating (looking up and down from my plate) would provoke it. And the “chronic” part that I had (before Topamax helped me) was what I referred to as wobbliness - others have described it as rockiness. You could call it “dysequilibrium” or “a little off balance” - as in, you don’t want to make any fast moves because you don’t feel fully in control of your balance but you don’t feel like the room is spinning either. This too is classic MAV.
The terms “possible” or “probable” are commonly used in medicine when diagnosing conditions like ours. It’s very squishy - what we have is not like a broken leg, so you can’t blame the doctors for using language that is imprecise. They don’t have x-rays or blood tests that prove MAV.
I’m a little biased because the doc who diagnosed me is one of the authors, but you can read about “head motion intolerance” and “probable MAV” in the E-medicine article on MAV. There’s a link to it on this website: in the Science Based Research section, on the second page at the bottom.
Thank you Mary Alice I will read that. So even though I dont have any balance issues at all, this is related somehow. And the fact, that I do not have a headache. My vertigo was ONLY BPPV related.
I had a bad year… must have got kicked off after my dad passed, car accident, hip surgery, then headache cured by neck surgery, and now chronic dizziness with 2 episodes of BPPV in bed, 6 weeks apart. Well hopefully Dr. Brown can help. As the topamax, just made me so much more dizzy when I upped it. Even though I went back down after 1 night, it lasted for 5 nights/days of extra dizziness.
Interesting. I have many of the same symptoms and triggers that you all are describing. One thing I wonder about is BPPV. I was always under the impression BPPV was a black/white, all or none issue…you either have the violent room-spinning when you turn your head a certain way or you DON"T have it period.
Is it possible to have varying degrees of BPPV? I’m not suggesting this is the only thing wrong with all of us, but is it possible to have say, “mild BPPV-like syndrome” on top of a chronic vestib problem like MAV? Just wondering.
I thought the same thing regarding the BPPV. As everything was fine until I got it. Then the Epley worked and now im left with plain dizziness.
I wonder if there could be like a crystal stuck somewhere that doesn’t cause spinning but is enough to throw you off… sure it sounds wierd, but this is all wierd.
When I visited my Oto I asked him how/why people get Chronic Subjective Dizziness. He said that some people start out with BPPV, get the Epley done to remove the spinning vertigo, but then are left with a constant imbalance. It was something like the brain can’t/won’t adjust back to normal after the BPPV attacks and you’re left with CSD. He also mentioned that he treats CSD with Vestibular Rehabilitation Therapy, but that didn’t really make sense to me since there isn’t any actual damage to compensate for with CSD (I think?).
Kristina and darkalice101,
Is it possible that the initial BPPV episode was actually migraine? MAV can mimmick BPPV perfectly, so unless you had nystagmus that was a “picture perfect” representation of BPPV, then its probably MAV all along.
But if you truly did have BPPV, then here is my understanding which I have heard from the owner of a clinic. People with migraine are much more sensitive to vestibular changes, so if a migraneur has vestibular damage from BPPV and requires compensation, they may not compensate from VRT like a non migraine patient. Migraine can hiinder vestibular compensation, and these patients usually require migraine preventatives before starting VRT.