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Old 07-01-2008, 08:22 PM   #1
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EXTREME MAV - what helps?

Guys, I have migraine associated vertigo very badly!! I woke up January 24th 2008 with the following symptoms and I have not been able to make a dent in the symptoms. I have sampled a couple meds,....pamelor, depakote, and neurotin, and effexor,...ALL of which were EXTREMELY stimulating, or made me EXTREMELY dizzy. I am now on Topamax at 50mg, and trying to get to a high enough dose to put a dent in these symptoms. I am working with a VERY prominant doctor for MAV who tells me that for my symptoms, Effexor is most likely the way to go because I have horrible motion intolerance and visual stimulation and he says that effexor, hands down, is the best med for this. I had tried effexor before, starting at 37.5mg but this doc told me that dose was too high, and suggested I start at 12.5mg, and work up very slowly to 37.5mg and stay there. he says it works 80% of the time at 37.5mg. So his goal for me is to get on both Topamax AND effexor, and if THAT doesn't work, he wants to add verapamil. anyway, here are my horrendous symptoms. I'm just wondering what has worked for some of you. And yes, I am quite aware of the horrendous withdrawel of effexor, which is one of my worries, but my suffering is far worse than any withdrawl right now:

1. 24/7 dizziness - feelings of falling, dis-equilibrium, unsteadiness (although I can walk straight)

2. 24/7 appearance that the entire world is constantly shifting and moving around. the doc said this sounds a little like Mal De Debarkment syndrome, but he said it's HIHGLY unlikely that I would get spontaneous mdds, and i have absolutey no history of travel.

3. 24/7 extreme light sensitivity coupled with other visual distortions - visual static, flashing/flickering lights, tunnel vision, visual flow problems

4. 24/7 motion intolerance - i have a hard time watching ANYTHING in motion, which makes it just about impossible to LIVE.

5. 24/7 ear fullness in both ears

6. 24/7 inability to focus my eyes on what I am looking at

7. 24/7 vibration sensations in my head. VERY ANNOYING!!!

In case anyone is wondering what tests I have had, I have had multiple MRI,s CT scans, MRA's, ENG's, EEG, VEMP, Spinal MRI's, Temporal bone CT scans, sinus CT scans, bone conduction audio exam, ENT examination, neurotologist examinations, examinations at Johns Hopkins, neurologist exams, opthamalogist exams, neuro-opthamalogist exams, evaluation for superior canal dehisence, vertebral artery dissection,....pretty much everything in existance. Was anything found? Yup! But not what you would think. I have 2 buldging disks in my neck at C5-C6, but are not causing any other problems, and I got a case of labrynthitis last year in my right ear, and lost a little hearing, but I compensated my balance 100%. I was fine for a long time!

Other than that finding, there is nothing wrong with me. That's how the diagnosis of migraine associated vertigo was reached. BUT,...this wierd shifting that the whole world does is strange, because that appearance goes away when I drive a car, or move around. the doc says that this sounds like Mal De Debarkment, but said it would be HIGHLY unlikely that I would have gotten this spontaneously. So the diagnosis is migraine.

Mine is particularly disabling, the symptoms are 24/7, and I can't shake this. I have twins at home, 21 months old, and they have all but lost their father. I am sure that at SOME point, I will get my life back, but in the meantime, I am miserable. Just curious what has worked for some of you out there, and how long it took to get there. I'm also interested in any topamax success stories (but any success stories would be helpful). Thanks guys!

Rich

 
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Old 07-01-2008, 08:34 PM   #2
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Re: EXTREME MAV - what helps?

Hi Rich,

Just saw this post. Sorry you're having such a lousy time of it. Are you seeing Hain? If you can't handle the Effexor maybe you should have a crack at one of the other SSRIs and see how that goes? As I said in a previous post, Cipramil and Zoloft have worked for both me and Howie, respectively.

Last point I wanted to make is about food. Have you eliminated migraine triggers? I get strong reactions to some foods.

Good luck ... Scott

 
Old 07-01-2008, 09:13 PM   #3
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Re: EXTREME MAV - what helps?

hey, thanks so much for the quick response. Yes, I'm seeing Dr. Hain. He's got me on Topamax, and is going to add the Effexor. what dosages are you guys on out of curiosity? I saw your response on the other post, but didn't want to hijack that persons thread, so I'll follow-up here. Dr. Hain suggested taking the 37.5mg caps, dumping out 2/3rds, and starting with 12.5mg and working my way up slowly to just 37.5mg. HE says that Effexor seems to work for migraine associated vertigo 80% of the time at just the 37.5mg, which would be good, because if it doesn't work, I'm not looking forward to withdrawing off of it!

I'm just curious, what symptoms did those drugs take away for you and how long did you suffer before you got on treatment? I'm wondering if because I have gone 5 months without doing anything, if that's the reason I am continuing to worsen, and the med doesn't seem to do anything. Thanks again Scott!

Rich

Last edited by Boslee2008; 07-01-2008 at 09:16 PM.

 
Old 07-01-2008, 09:37 PM   #4
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Re: EXTREME MAV - what helps?

Rich,

>>> what symptoms did those drugs take away for you and how long did you suffer before you got on treatment?

I was hit with VN first; a pre-existing migraine problem became a complicating cofactor. I suffered pretty badly for about 4 months initially. I was then put on Zoloft and thought I would die, and then Cip which took me out of a serious dive. But I didn't see things change significantly for the better until I took Cip from 10 to 15 mg daily.

I was dizzy 24/7 with periods of high anxiety. Visual vertigo was out of control and there was some tinnitus. I never had a "full" feeling in my ears or head however. My ears did burn inside during the initial attack of VN. In short, my situation turned into and what fits migraine-anxiety associated dizziness (MARD). Have a look through other threads on this. I summarised it. The authors also recommend an SSRI, particularly if there is a large anxiety component.

I couldn't handle Topamx btw. Within 2 days I started having suicidal fantasies! Scary and very unpleasant. But others do great on it of course. It's all a game of hit and miss.

Cheers ... Scott

 
Old 07-01-2008, 09:46 PM   #5
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Re: EXTREME MAV - what helps?

thank you so much for the clarification. I want to make sure I understand though. The VN didn't TURN INTO mav right? It simply complicated the picture yes? it's interesting that you say this, because i had labrynthitis, a cousin of VN, but I healed just fine, and had an 8 month break before the mav hit.

and Cip was all you needed to get under control? remarkable. an SSRI looks to be the way to go as I am also under a TREMENDOUS amount of anxiety. but effexor also increase neuroephinephrine, which increases adrenaline, so I'm wondering why that would be GOOD for anxiety. I would think that would CAUSE a panic attack lol!

Scott, what do you mean by "visual vertigo"? Do you mean visual sensitivity? Like not being able to see right in busy/crowded places or not being able to watch things in motion? Just curious. It seems like the SSRI group is really the best thing for this particular symptom. Thank you SO much for your response.

Would you say you are mostly better now? 90% perhaps? Thanks again!

Rich

 
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Old 07-01-2008, 10:09 PM   #6
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Re: EXTREME MAV - what helps?

Rich,

Good question. Yes, I think VN did trigger MAV in me. The migraine was already there causing tension headaches and neck pain for about 6 years before the VN hit. I think VN and all the intense anxiety that came with it completely over-sensitised my brain. And so now I cycle continuously through good and bad patches. I even have a sensitivity to water on my scalp! Bizarre I know but I'm not alone; it's been documented in the literature as another migraine type thing. I could take Effexor or another SSRI to really kill this but I cannot stand the side effects: weight gain, myalgia, increased tension headaches, no libido.

Rich, you sound like a prime candidate for MARD – especially with the massive anxiety component. Check this out:

[url]http://www.healthboards.com/boards/showthread.php?t=602895[/url]

The whole paper itself is fascinating and will answer a lot of your questions on this. There's some good physiological mechanisms explained. In a nutshell, there is a triad of things going on: vestibular dysfunction (previous damage), migraine and anxiety. They intersect like Olympic rings.

Hain is attacking this on two fronts for you: Effexor for anxiety and migraine; topamax for migraine. If you take out those two components, your vestibular system will stop going nuts and you'll normalise.

Visual vertigo is when trying to fixate on a point with your eyes and you just can't. Everything is moving. When it's really active, PC screens are brutal for me.

My understanding on Effexor is that at lower doses is has very little effect on noradrenalin. Only when the dose gets much higher does it impact noradrenalin and dopamine.

Best ... Scott

forgot: I'd say I'm functioning at about 90% most days, but it does take the odd dive. There were times when I felt 100% on Cipramil but not often because the side effects would kick in and ruin it. Don't forget too that I take St John's Wort – a Swiss brand used in clinical trials also called Ze 117. It was better than Paxil in a few clinical trials without the SEs.

Last edited by studyin; 07-01-2008 at 10:12 PM.

 
Old 07-02-2008, 07:28 AM   #7
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Re: EXTREME MAV - what helps?

Richard:

Like Scott said everyone reacts differently. I had head pressure (not headaches), mild chronic nausea, blurred vision, bad anxiety, dizziness where I feel off but no spinning or lost of balance. I could not handle Lexapro, Paxil and a few other drugs that made my anxiety 40x worst. Zoloft did the trick. I had some initial side effects but after a while they subsided

Currently pretty normal (knock on wood) some mild dull head pressure and visual issues in a dark area or big store. But not bad at all and one in a while. Pretty much 95% to 100 most days. (knock on wood)

I think all 3 of my medications work to assist me. 240 mg's Verapamil, 100 mg's Zoloft and.5 Klonopin 2 times a day. I think Zoloft made thi biggest impact but all helped. I will come off the klonopin at the end of the year if I remain stable. I also meditate or biofeedback every day, go to the gym every day, and see an accupuncturist and chiro once a week. I think eveything has helped stabalize and get me on with my life. There is no cure so there will be some days on the occasion but I am more in control. I do feel the biofeedback and accupuncture help relax and balance my body out and let the medications do there trick.

I was actually 100% for 12 to 18 months on the same combo of drugs at a lower dosage. I came off the drugs to see how I would stabilize and I relapsed . I am now 7 to 9 months from the relapse on a higher dosage of the drugs and pretty much back where I was. The dosages I am on are still considered low.

I think Effexor would be fine to use if that is what your doctor wants to use. If it does not there a ton of SSRI's. I think Zoloft helped me as Anxiety was a major component. Every doctor has there own drug of choice. Mine just happens to be Zoloft over Effexor

good luck

 
Old 07-02-2008, 03:22 PM   #8
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Re: EXTREME MAV - what helps?

Thank you both VERY MUCH for the reply. I have lots of hope now that things will eventually get better!!

The "visual vertigo" you talk about scott has me interested. Do you mean that for example, if you are standing still looking out at the world, that the world appears to be shifting and moving around? By any chance does this get better when you drive? or when it was bad, did it improve when you moved or got behind the wheel of a car? I find that the shifting stops if I move or drive. I hear that this is a symptom of mal de debarkment syndrome, but i have now history of travel, so this really doesn't make much sense.

Looks like I have some work to do. I have it real bad, and taking just the topamax doesn't seem to be enough. Hence, the need for effexor. I think the klonopin would help my visual vertigo, as I tried it before, but it made me very unmotivated. Any experience with that? granted, I only took it 4 days in a row but by the 4th day, I didn't want to do ANYTHING. I'm thinking of giving it another try. Thanks again to the PAIR of you!

Rich

 
Old 07-02-2008, 05:07 PM   #9
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Re: EXTREME MAV - what helps?

Thanks Pam. Did this shifting sensation stop with medication for you?? were you diagnosed with migraine or mal de debarkment? It's interesting because supposedly, this "shifting" phenomenon is a BIG symptom of mal de debarkment, which mostly hits women in their 40's after going on a cruise, or some other form of travel. Dr. Hain said that this symptom of mine DID sound like mdds, but that the odds of me getting "spontaneous mdds", seemed very unlikely. I'm still waiting to hear back from Scott about the definition of his "visual vertigo", and if the symptom is the same, perhaps this shifting is also a symptom of migraine as well, but people don't exactly quantify it very well. People just say "I'm dizzy". I just knew right away that something was strange, and after examining it more, it was apparent that the whole world was, and still is, moving 24 hours a day. I pray the meds will stop this! Thanks Pam and please let me know!

Rich

 
Old 07-02-2008, 06:25 PM   #10
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Re: EXTREME MAV - what helps?

Richard,

>>> Do you mean that for example, if you are standing still looking out at the world, that the world appears to be shifting and moving around?

Not really. For me, if I'm symptomatic, and I try to fixate on a point in the distance for example, I cannot hold it still in my visual field. My eyes just won't stay on the ball. As I feel better, the fixation task becomes easier and my eyes aren't so off track. As you can imagine, when thinhgs are bad and I try to hold my vision fixed on computer screen text, it's a real nightmare and induces surrealism, derealisation, dizziness and anxiety. Valium usually makes it bearable until things settle down; however, I only use valium when necessary and never daily.

Cheers ... Scott

 
Old 07-02-2008, 06:41 PM   #11
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Re: EXTREME MAV - what helps?

<<if I'm symptomatic, and I try to fixate on a point in the distance for example, I cannot hold it still in my visual field>>

hmm, maybe my description sounded different but as soon as you say this, I immediately think of my own symptom again. Let me see if I can understand better. If you can't hold the object, item, or horizon in your visual field, what exactly is the object doing then, or appearing to do? What you describe above really does seem the same, at least do ME lol. If I stare at an object, I can't keep it 100&#37; still in my visual field. It appears to move a little left, or right, or up, or down,...the point is, the object I'm looking at always appears to be slightly moving SOMEWHERE, and never still. To me, that sounds to be the same but maybe I'm thinking differently. Does that still sound like a different description to your symptom after a further explaination or no? Thanks Scott, I can't thank you enough for your responses and help!

Rich

Last edited by Boslee2008; 07-02-2008 at 07:12 PM.

 
Old 07-02-2008, 07:06 PM   #12
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Re: EXTREME MAV - what helps?

Rich – that's it exactly. The object appears to jump around but it's actually the eyes that cannot stay on target. The movement is not in any particular direction – it's totally random. The worse the migraine or vestibular upset, the worse the jumpiness gets and it can be noticed on much larger objects.

Right now as I view a distant point there is virtually no movement. But if I get up and run around and then sit, it will happen for a few minutes. I don't even notice these days unless things are really revved up – which is rare lately.

One problem I have now and have had since this thing hit nearly 5 years ago now is lying on my right or left side. Lying on the right is the worst. A gradual anxiety builds up. My heart rate increases over time until it all becomes so uncomfortable and freaky I have to move facing straight up to stop it. The left side is doable sometimes. How do you find lying flat?

Scott

 
Old 07-02-2008, 07:20 PM   #13
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Re: EXTREME MAV - what helps?

Wow, finally, more confirmation that this symptom is NOT just involved in mal de debarkment, which I am sure you are familar with? In MDDS, people complain that the environment "appears to move". It seems this is a "Gaze stablization" problem but I have confirmation of this symptom in at least 3 other migraineours, and NONE of us were exposed to any kind of "motion" before our onset, which is usually how mdds is diagnosed as you probably know. I think this gaze stablization problem is more common in migraine than reported, but since it's so easy to just say "i'm dizzy", instead of describing the exact situation happening, I think a lot of gaze stablization problems in migraine are missed. For me, the further away I look, the more obvious the movement/gaze stability problem. The close the object, the less obvious the movement, and the easier it is to keep the object still in my vision. And if I go outside, and simply look toward the horizon, and not look at any one object, and simply keep the "whole world" in my field of vision, the entire world seems to shift around in oblong ways. it's SO weird. Also, and I'm not sure if this is true for you, but there is also a lack of "focus" aspect to it, and I'm not sure if you experience this as well. But it's as if objects are really never 100&#37; really well defined, as the movement seems to make the focusing aspect difficult, especially in outdoor scenery, in flourescent lighting, and in very bright lighting.

Interesting that you mention the "lying on your side" thing. If I lay on my left side, I feel my heart beating way too much, and it gets annoying, so I have to lay on my back, or on my right side. I'm one of those people who doesn't like to hear his heart beat. It gives me anxiety lol. I also have a mitrovalve stickness problem that I just found out about, nothing major, but it COULD be contributing to my anxiety by creating some abnormal blood flow situations, so I am going to have this looked at further.

Rich

Last edited by Boslee2008; 07-02-2008 at 07:26 PM.

 
Old 07-02-2008, 07:37 PM   #14
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Re: EXTREME MAV - what helps?

>>> For me, the further away I look, the more obvious the movement/gaze stability problem. The close the object, the less obvious the movement, and the easier it is to keep the object still in my vision.

That's *exactly* as it is for me as well. My focus is fine although can be off on reading text sometimes. Could be age though lol. I don't have the shifting feeling either. Really, it's all gaze stability issues for me now. Five years ago though, I was HUGELY dizzy; it was like I had just stepped off a merry-go-round. The dizziness seemed "external" rather than inside my head if that makes any sense.

You'll beat this Rich. From what you're describing to me it sounds like your anxiety could be more out of control than you'd like – and that would wind things up significantly. The thing is it's hard to know how much of the anxiety is physiological stuff (like the sort that occurs lying down and is totally positional) versus our real fear of the situation. I think I have killed that aspect of this in that nothing about this condition scares me anymore. I just look it straight in the eyes now and say "bring it on baby"! Of course if I really get hammered then out comes the nukes – valium. lol

Scott

 
Old 07-02-2008, 08:20 PM   #15
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Re: EXTREME MAV - what helps?

thanks so much Scott. I have been doubting my diagnosis, thinking it didn't make any sense. It makes PERFECT sense! i'm going to let the idea of mal de debarkment go right out the door, as it's clear to me now that all this can happen in migraine. I'm not too keen on taking an SSRI as I WAS on paxil 10yrs ago for anxiety, and although it DID work, I was a zombie, and had no sex life. Hopefully the effexor will be different, because it's such a low dose. Thanks again for all the help. I just hope that it's not too late for me to start on this. 5 months is a long time to have sat back, and done basically nothing. I'm on Topamax, which is not doing much, but hopefully the effexor will work. If not, I hope the trial doesn't cause me to be stuck on it. I hope I can off if need be. Thanks again!

Last edited by Boslee2008; 07-02-2008 at 08:22 PM.

 
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