I never had MAV- Well 4 doctors have given me that diagnosis, so it stands to reason that others with this condition could have also been misdiagnosed with MAV and landed here on this forum like I did. I agree that MAV is a term for a group of symptoms that I have, but my real diagnosis is Intracranial Hypotension.
CSF as a trigger- I could see this as possible, but more likely, I believe the migraine CSF study I have posted here numerous times is more accurate, that irretractable chronic migraine has an underlying cause of intracranial hypo/hypertension.
I am in a migraine remission for unknown reason- Well I have no genetics of migraine in my family, and my remission occurred at the exact moment that Elliot’s B solution was added to my spinal canal.
I never had a CSF problem- My leak was seen on Myleogram. The leak was in my neck. My symptoms began after the hyper extension of my neck during a facial surgery, where my neck was torqued beyond range for 45 minutes.
I really think this is something to keep an open mind about Scott, and worth some research. If a person has hypertension, the migraine treatment is nearly identical to That treatment. Migraine drugs are used, diuretics, and migraine type food restrictions. If it is hypo tension, like what I had, a person will become more ill on the migraine meds and diet.
The treatment of IC hypotension is not a one shot deal, it is very complicated and a person needs to stay under the directed care of a specialist to work through the rebound high pressure issues that can follow a successful patch. You can get sicker in a different way before getting better, and if the rebound pressure is not controlled more leaking is very likely. The longer a person has been leaking the longer the rebound pressure can last. I know of several people who took a year before feeling back to normal, it was a gradual process. The specialists deal with this exact set of symptoms on a daily basis. I have also posted a paper written by Dr. Wouter Schievink on this subject, his clinical observations. What makes his paper so compelling is that he not only gets the clinical picture, he is a surgeon, so he sees with his own eyes the defects in the spinal canal and fixes them. The other top specialist who have studied this at length are Dr.Mokri at Mayo clinic, and of course Dr. Linda Gray at Duke. More and more neurologists are understanding the connection between this set of symptoms and are referring their patients to these specialists, especially if hypotension is possible. Most neuros are able to diagnose and treat hypertension, but it is often misdiagnosed. Sometimes the two conditions mimic each other, so an LP procedure can confirm one way or another.
I am under the care of one of the top interventional Neuro radiologists in the country who is an expert in intracranial hypotension, and has 30 years of experience in the field.
Okay, this seems to be going back and forth now and I am a bit confused here but bear with me, as, I really do want everyone to be well.
Inafog, you replied to Scott: “3. I am in a migraine remission for unknown reason- Well I have no genetics of migraine in my family, and my remission occurred at the exact moment that Elliot’s B solution was added to my spinal canal.”
So, to me? That means you do not have MAV.
Your CSF condition caused similar symptoms, but that doesn’t mean you are a migraineur. You might get dizzy, and you might get headaches, but with your CSF condition wouldn’t that be expected?
Chronic dizziness accounts for what? At least a third of all doctor office visits? Some crazy high number. At the Kaiser Med Center I go to, in January there were 3 doctors on staff, out with chronic dizziness.
Just like one of our members here who was misdiagnosed and treated for MS for 10 years before getting the correct MAV dx, and I myself having a chronic phase 12 years ago that was misdiagnosed as labyrinthitis, I am sure people are misdiagnosed with MAV.
Lots of things give people headaches. My boss for example And, lots of things can make you dizzy. The combo is not necessarily MAV.
You have found relief thru your surgery?? EXCELLENT!!!
That is such a good point. I was diagnosed with MAV by 4 of the top specialists in my area. MAV is a diagnosis of exclusion, basically they rule out other likely causes for the vertigo and end up here. Unfortunatly doctors don’t rule put all diagnoses before landing here. On Hains website there is talk about CSF issues with these symptoms. The specialist in the field of IC hypotension helps people who are diagnosed with MAV all the time. She has also helped people with Meniers. All these diagnoses that have little in the way of testing to prove them. And also little in the way of treating effectively.
Even when I went back to my doctors to let them know what was wrong with me, they did not argue, they just said it didn’t jump out at the, and MAV seemed most likely.
Anyway, I have a lot of information if anyone is interested in looking into a new diagnosis because they are still sick with MAV, feel free to contact me.
This post has been moved to the Alternative Treatments section of the forum, so I doubt many will see the discussion at this point.
Kathleen, chronic dizziness is not as common, but dizzy symptoms are common, what makes this so horrendous is the chronic nature of it. Also, I did not have surgery. I had a simple injections of glue to seal the leak in my torn spinal nerve sleeve.
Misdiagnosis is so common in this area, I have no idea why on this forum it is recommended that once you get a MAV diagnosis, stop looking for other things. That is scary advice. Doctors are wrong all the time on this because there is no testing to prove it with 100% certainty. if you aren’t getting any better with MV strategies, or especially if the drugs make you worse, I would look elsewhere. That strategy worked for me.
They do believe MAV is a symptom of CSF problems, and are working on studies to prove that theory. But the study is not specific to MAV, but all chronic migraines. The had about 80 patients and something like 80% got relief when CSF pressure was normalized. I have posted the study here before and will try to find the link again. This is early work, but I am sure some on this forum may not want to wait to try something that could possibly bring them relief and/or cure.
So you’re saying then that MAV is a symptom of CSF and not simply mimicking MAV-like symptoms. And so we’d have to assume that MAV is not a migraine based illness (even though it responds to migraine treatments) but a CSF-based illness. Are you saying we’re all leaking all over the place and that MAV does not have a genetic cause?
I think it is possible that many have CSF issues, high or low, just basing on the study, but this is emerging research making this connection. There is still much to learn. They are still working to find the best ways to solve the issue… I definitly think it is worth watching for this information to come out as more research is completed.
I am obviously biased because I have had this work for me after being diagnosed as MAV multip,e times, and I know the stories of many others who have been helped as well. It is impossible for me to ignore.
[size=120]Migraine often occurs in association with other diseases[/size]
Migraine seems to occur in association with certain other diseases more frequently than would be expected by chance. For instance, migraine is found with greater than average frequency [size=120]in people with thyroid problems[/size], benign paroxysmal positional vertigo, seizures, Ménière’s disease, and mal de debarquement syndrome. This does not mean that they are the same disease. The reasons for these assocations are not clear.
I’ve often wondered about any connection between two herniated discs (that eventually resulted from two whiplash accidents in 1997) and the MAV and tinnitus. Since the herniations are deemed slight at this time (c5-c6 and c7-t1), no doctor has made that connection. I saw one neurosurgeon who said there was nothing surgical to do and a neurologist, who after just one visit sent me a letter telling me he would not be treating me-he basically kept asking me to describe pain and discouraged me from using the word dizzy, lightheaded, or vertigo when describing symptoms and didn’t respond positively when I asked about MAV. I’ve called another area neurologist who was recommended on this forum and am now waiting for them to receive my medical records to then call me for an appointment.
To manage back and neck tension, for years I’ve been going to the chiropractor as needed and to a masseuse once a month; exercise is the most helpful thing of all (when I’m consistent I feel great, but I’m not always so). To deal with the dizziness, (started as occasional mild dizziness and auras and then was set off by my one-and-only disabling painful throbbing migraine in December 2011, followed by a few spinning vertigo attacks, and then constant dizziness for months) I just started on meds for the first time last week as prescribed by my GP; and I just started feeling both less dizzy and less muscle tension in my back and neck.
Did I mention that I’m 50? Oh, and I’ve been on Loestrin for years, and though I’ve asked my GP and my OBGYN, they both have advised me to continue taking it. Like everyone on this forum, I’ve had countless tests and made numerous visits to specialists only to keep wondering if I’m doing the right thing. As of today, I’m feeling better, but I still have so many questions…
And, lots of things can make you dizzy. The combo is not necessarily MAV.