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Losing hope, please read

Hello, forum members. My name is Jesse, I am a 37 year-old male living in Pennsylvania. I have suffered from an undiagnosed chronic dizziness condition for almost 4 years now. My primary symptoms are a constant state of disequilibrium that is made worse by busy visual environments such as stores, city streets, etc…even moving about my two story house is horrible. I often feel carsick when driving and the floor feels like it undulates under me quite often. I also have fullness in my left ear that comes and goes, as well as some strange auditory sensations (myoclonus) in both ears. The condition never gets any better, I do not have “good days”, unless I am somewhere like the beach where there is little visual stimuli but everything quickly returns when I enter a store or return home. The only thing that takes the edge off is a daily does of Klonopin which I have been taking for over 2 years and, by now, it barely works at all. Drinking alcohol also seems to ward off the symptoms temporarily but I do not drink often and certainly not as a treatment for my condition. Of course, I have gone through all the tests; CT/MRI (X2), ECOG, BAER, optic nerve, visual field, tympanic response, hearing, and about a dozen more. I have seen every kind of specialist imaginable, including a vestibular rehabilitation therapist, a TMJ specialist which made me a splint for my mouth that only made the dizziness worse, and Dr. David Zee at Johns Hopkins in Baltimore. His findings, like all the other doctors I have seen, were inconclusive. At one point, I was seeing a neurologist regularly and tried about 5 different migrane meds to rule out MAV, none of which made any difference. Everyone says I am perfectly healthy but I am obviously very ill to the point that there are days when I feel completely and totally “sick”.

I used to hope this condition would resolve itself or that something would work but I am starting to lose faith and don’t know where to go next. I’ve tried everything western medicine has to offer with no insight at all, spending many thousands of dollars in the process. I need some help figuring out where to go next, if this is an allergy, or something a homeopath could help with, or something else? If anyone out there has or had symptoms similar to the ones I described above, could you please share with me what, if any, treatments worked for you or if you were ever correctly diagnosed? If anyone has ANY advice, I am open to just about anything possible because I feel terrible every single day and it’s getting harder and harder to fight. Thank you.

-Jesse Speicher

Hi

I am so sorry you feel so bad all the time, it’s an awful condition that gives no relief sometimes, i also have 24/7 symptoms like yours.
It does sound like you have MAV, have you tried the diet and lifestyle changes ? Some people get very good results with the diet if they can be strict enough for long enough.

I came across an anxiety condition that causes symptoms the same as MAV:

http://www.mvertigo.org/articles/MAV_common_disorder2009.pdf

(Look on page 4) Sometimes you can have chronic anxiety without realising it, but i don’t want to sound patronising, i know your symptoms are real as are mine but maybe ask the doctors re anxiety/depression meds to try?

I hope you get some improvement soon - i really do x

Hi Jesse

I don’t know if I can give you loads of advice but what I can say is that I have pretty much all the same symptoms as you and I have had this for 3.5 years. Feeling worse in busy environments, strange clickings and crunching in my ear, constant disequilibrium all sounds very familiar. I too have had a battery of tests, all normal. I did think I had Vestibular Neuritis until a relapse this summer accompanied by spinning vertigo attacks confirmed otherwise. I have just been diagnosed with Migraine Vertigo and am embarking down the meds route. I am currently on Nortriptyline but that is my first med. It is very hard to feel certain of a diagnosis when there are no conclusive tests to prove what is wrong. I have done endless research about dizziness and MAV is the only credible option I could come up with for myself now that labs/VN are ruled out.

You say you tried lots of mav meds which did nothing. I wondered which meds did you try and for how long? Did they do nothing at all or did you stop them quickly due to side effects? How has it been left with your doctors? Surely they haven’t just said there’s nothing wrong with you. Do you think you may have MAV? Do have a history of any headaches, migraines, weird visual auras? Do you have a history of travel sickness? Do you have anxiety symptoms? Have you seen any top MAV specialists? The fact that you came to this site suggests you may still think it is MAV despite not finding a med to help. There are some really good info sheets and interviews with neurologists on here. When I first came to this site and read those pages I started to think it was possible I had MAV having previously assumed MAV was something you had only if you had attacks of dizziness with headaches. If you read the stuff on here and think you have MAV then I would say that it is likely you do, nobody knows your symptoms as well as you do.

I hope this helps a bit x

Jesse, I am so sorry. I totally understand your pain, seriously. A lot of your symptoms do indeed sound like MAV. What medications have you tried and how long did you try them?? Sometimes a combination of medication is needed. Right now I am currently taking Effexor and Propranolol and doing pretty well. I also had good luck with Nortriptyline, it helped the MAV and ANXIETY!! Also, I quit caffeine for 5 weeks, started again because I didn’t think it was making a difference. It was albeit minor, but, I quit again and have felt a lot better.

I really do know how you feel. I missed the first 3-4 months of my childs life due to this crap. It also put a huge rift between my mother and I because she thought it was all in my head and I could will myself to get better. Frustrating. Hang in there, it can get better.

So sorry you’re having such a hard time getting a diagnosis. I know that is one of the most frustrating things when you feel ill all the time… From what you’ve described, you do seem to fit in the MAV category. I wonder, have any of your docs considered that? I’m guessing the one who trialed you on a few meds did. Which ones did you try? There are so many out there… Honestly, I’ve tried 11 and am not “fixed” yet, though not as bad as I was. Sometimes with MAV it’s just a matter of getting the right kind of med or even the right combination. (There are 4 different classes of meds, and something like 40 different meds that can be used for migraine.) It could be that your doc tried you on his/her favorite 5 and then gave up. Are you in a position (financially) where you could try just one more doc? Maybe take a look at the “Top Docs” list here and see if there’s one that’s close to you. Or, if you have a good primary care physician, or felt like one of the other docs you saw was on your side, but just perplexed, maybe you could print out some of the literature here and take it to them to see what they think…

Anyhow, hang in there and keep poking around here. There’s tons of good info, and maybe a few things you could try between docs (such as the migraine diet, which helps some, taking magnesium, B2, CoQ10, and some of the other otc options that some folks have found at least somewhat helpful).

Don’t want to repeat some of the good advice/suggestions already given, but I’ll just probe a little bit more about the migraine meds: were they preventive meds? (As opposed to the “abortive” meds, the ones you take once you’re in the middle of a migraine headache.) If they were preventive meds, then when the meds are taken for migraine associated dizziness, they often need to be taken for rather long periods of time before you can truly know if they work for you or not. For example, it took a few weeks for me to slowly work up to the (usually) therapeutic dose for Topamax of 100mg, THEN I had to be on that dose for about 3 months before my daily symptoms went away.

If you haven’t tried “the diet” the details are in the book Heal Your Headache by David Buchholz, which may be worth a try.

Take care, and good luck.

Jesse,

Hi going through the exact same thing. Sometimes I think it’s my neck or TMJ instead of MAV. I’m currently taking Verapamil which seems to not be working anymore. I had all your symptoms for 5 years and then suddenly I woke up with 2 bouts in 2 weeks of violent vertigo and haven’t been the same since. Even worse than my normal “feel like shit, the ground is uneven, the flourecent lights are making me dizzy, etc. etc.” day. YOU ARE NOT ALONE! I just started working again last month and hadn’t had a vertigo attack since my first 2 exactly a year ago and low and behold I looked under the bed for something and everything started spinning! I couldn’t work for a week at my new job and had to explain in great detail everything. It was horrible. I’m not quite better yet and feel really down right now. I used to be so fun. Now I can’t even ride a baby rollercoaster, not even ring around the rosey. My kids suffer cause their Mom is “boring and dizzy all the time”. I live in Oregon and as soon as it starts raining I get worse but I’m forced to live here because my ex husband won’t let me move with the kids. People used to think I was a hypochondriac. I do also suffer from anxiety which I think is caused from the dizziness. I used to think I was gonna faint until I got diagnosed and realized it was lightheadnedness and dizziness which causes the panic attacks. I hate almost every day. Just remember HANG IN THERE! YOU ARE NOT ALONE!

Leslie

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Dear Jesse,
Did anything ever work? I feel like you did; my condition seems intractable to treatment despite many attempts. Things seem to be getting worse rather than better, yet the doctors have no answers and seem reluctant to believe the severity of my symptoms and experience. Hoping that you found something that gave you relief—I know that many people do.

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Jesse,

I’m so sorry for what you’re going through. Reading your post made me shed a couple tears because I also feel like giving up at times.

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