Hi all:

I have not been on that much lately as I have been real busy at work. I still am doing well, like 3 months at like 95%. I went at my Neuro-Otologist request to see a Specialist in NYC at ST. Lukes Hospital. Pretty reputable hospital in NY. He is a Neurologist that runs the headache institute and specializes in Dizziness caused by the head. He diagnosed me with Vestibular Migraines. He said that you can fail inner ear testing and have this. You are not functioning correctly from an balance and dizziness standpoint which is why you can fail inner ear testing as this test function. He said this can happen the opposite as well. He said most people that have this VRT helps only a little and it does not increase symptoms. (This is the case for me. ) It did help me but it did not increase symptoms while doing them. He said you do not need any headaches to have this...

He said their were 3 lines of meds and they were 1) Zoloft 2) Verapamil 3) a number of anti-seizure and meds used for blood pressure. I asked why have I improved. He said Zoloft has helped me tremendously. I was actually given this when I was undiagnosed by a pychiatrist for depression and anxiety. I am also on mild amount of Norvace for High Blood Pressure. He is going to switch me to the Verapamil as I need medication for blood pressure anyway. He feels I should get to 100% with this. He also said I will not have this forever. Once the brain adjust with the medication I can slowly come off the medication....

As far as food triggers...He told me the usual suspects but not everyone gets triggered from every migraine trigger. If caffein does not trigger attacks then I do not have to eliminate this.... See what works by trial and error....

Just figured I would share my story for those who have not improved with VRT might want to try this..... Also you can have a failed inner ear testing and have this as the main sourse or vica versa....

Hope everyone is doing well...

Howie

Hi. What do you mean by failed inner ear test? Do you mean that your inner ears are functioning properly or that you failed the ENG?
I am still not diagnosed, but a neurotologist told me about the migraines and it could be a possibility. I don;t have the headaches, but have swaying/nausea on and off for months. I passed my ENG and other tests...
What are your symptoms?

Rachael:

I failed the inner ear testing.... Most with Vestibular Migraines do not fail this testing but some like myself do. Most of my symptoms are gone..They were blurred vision especially in dark areas, chronic mild nausea, no true vertigo but I felt off all the time. I had mine for 2 years and now am pretty close to normal

howie

Thanks Howie. How often did you symptoms last? Mine are on and off, usually I have the nausea and the off balance thing for 2 weeks and then its gone for a few weeks then back again. No problem with vision really, but do notice sometimes in the dark I have to focus more...
Can't beleive they are migraines with out headache and can last for longer than a few days....?

Hi Howie,

Great news that your doing so well. Also great that you saw a good neuro, everything he says sounds spot on. Funny that your psychiatrist ended up treating your migraine by mistake!

I am currently on topamax for migraine but may come off it. One of the meds I might try is verapamil so would be interested to hear how you get on with that. Did your neuro specifically say zoloft for migraine or any SSRI? As that might be another option for me. I'm guessing he probably mentioned that one as you are on it.

One thing I did want to say is that it isn't strictly true to say VRT won't increase symptoms in people who are dizzy due to migraine. It is, I'm sure, entirely possible that there are some people for whom it won't increase symptoms. But for others it can actually make them feel a lot worse without the benefits that someone who has VN gets. Your neuro sounds like he really knows his stuff, but all specialists come out with the odd weird comment occasionally. I know Mav sufferers who, when symptomatic, really wanted to hurl doing VRT. I'm only mentoining this so that anyone who thinks they may have this problem isn't put off the scent by thinking but hey - vrt does make me feel bad so that can't be me.

Really hope you carry on doing so well,

best,

HBEP:

Thank you for the clarification. I think I worded it a little incorrect. What he said is most people With Vestibular Migraines do not benefit from VRT ..Some do but most do not. He usually gets the patients that do not and are looking for other alternatives. He strictly stayed Zoloft is the main antidepressant that is used to treat migraines and vestibular migraine symptoms...

I wont be trying Verapamil for a couple of weeks. I am going to my internist in 2 weeks and he wrote me a note to just switch my norvace with verapamil. Since I already am taking a medication for high blood pressure it cant hurt to kill 2 birds with 1 stone.

I will keep you posted..... Dr is very good. Listed in a magazine as one of top 100 doctors in NY

How are you feeling ..Any better with your recent decomp event

Hi Howie. Great news as I sent you a reply.

Howie or Hbep - What is the difference between migraine and vestibular migraine? Is it that the vessel constriction is near the vestibular nerve? Does that make sense what I am trying to ask? Hbep - just curious as I've researched this end a little for myself but don't seem to find any causes for MAV. Do they just not know what causes this condition? Is it hereditary or can a virus or injury cause it? Just wondering if either of you have any answers on this? Ill have to take anothe look at that video on MAV that Scott recently posted.

Thanks for the information. Again, that is great news Howie and hebp hope you are doing better since Christmas. - Gloria

Hi Howie,

Very interesting stuff. So is he saying you never had VN then? That all this time it has been MAV?

All of this gets me thinking: 1) that an SSRI cleaned it all up for me and 2) coffee seemed to trigger this recent relapse for me along with a computer screen! Could I have some sort of migraine variant as a result of having labs or VN? Man, it can be hard to get a clear picture on this garbage. Just when you think it's sorted too. I'll be very interested to hear how things go for you on Verapamil.

Cheers...Scott

Hi Scott,

I just wanted to chime in here to as this stuff really turns you in circles. I wish we could all just find an answer for our problems and get them fixed. I never thought I had migraine as I dont' have typical migraine symptoms and absolutely no history of even having a headache until after my ear infection. Just wondering if VN could cause migraine to happen.

Gloria

Scott:

Basically what the doctor said is the testing available shows the function of the vestibular system.... He seems pretty bright. He is listed on the top 100 doctors in NY and my Neuro-Otologist told me to go check him out..... I never really had a diagnosis of VN. My original diagnosis was Vestibular Dysfunction , probably central from my testing. So I went the VRT route. Not that this MAV thing comes up the central diagnosis makes sense. I took the Zoloft from the pychiatrist to help with the anxiety and the pychiatrist indirectly helped my MAV

He said a lot of these diagnosis such as VN are correct first impression as with the capability out your test showed that inner ear functioning is failing. You go through the entire route of VRT and meds for inner testing. MAV patients, usually do not get great results from VRT or these other meds. MAV is then a possabilty when the other things fail. No test to prove this either. He said one can have MAV and fail inner ear testing (I did ) but most cases it is the complete opposite where the MAV patient has perfect inner ear testing. All the tests show is function so MAV can disturb your vestibular functioning. MAV what he said is usually central in nature and that is why the VRT does not help as much. He said MAV patients also have a lot of vision, nausea , fogginess rather than your inner ear patients which have more balance problems and vertigo. I must admit I did not see any real results till the Zoloft. VRT did help but only a little. I am still at 95%. He said you can take 50 MG's to 125 MG's of Zoloft for MAV. I was taking 50. Instead of taking more of that and have side effects or withdrawl he wanted me to take the smallest amount of Verapamil since I was already on Norvace for mild high blood pressure I can just switch to the Verapil. Can not hurt.... A lot this is new and trial and error.


I will keep you posted. I am still at 95% and looking to get to 100% with this new news..... Sorry if I confused you at all. Trying to tell you what the doctor said but I am not as good as yourself or Subs in explaining these things. I am a finance guy so writing is not my forte

Howie

Hi Howie,

This is very interesting as this is the same thing I am getting from my Dr. I finally had the balance testing and they found nothing wrong with my inner ear function at all even though I can feel my dizziness coming from the right ear.

I was also told that VRT most likely would not help me. I have been taking Verapamil for about a month now and have not noticed a change at all. I have so much pain and fluctuating pressure in my ear I can hardly stand it anymore. Maybe I'll have to ask about Zoloft.

I'm so happy you are finally getting some answers and are sharing them with us.

Thanks again,
Jill

PS I'm a finance girl

howie- glad to hear your doing well still. I am in the same boat as you, about 95% now for a few months. Do you get head pressure or head achey feelings when you work out at all?

still gotta get drinks in the city sometime

JB

JB:

I do not get any extra head feelings when I work out..Actually feel better when I work out. Mine are also head pressure in the front of the head/forehead not achey..... Been working out like crazy lost 25 pounds since November...Another 10 to 15 and I am at my pre-illness weight

yeah we need to get drinks......especially before june when the baby comes

The Dr in the city seemed very knowledgable and very confident. He never hesitated or said it "Could be this or that" Straight out said you have Vestibular Migraines

Howie

Hi Howie,

Was your pressure always in that same area (forehead). Curious because mine was my whole head at first and then the back of my head the pressure and headaches went away and then my forehead and temples area it comes and goes. Most of the time my pressure is in the top of my head down to my ears. I was hoping that since the back of my head got better and the front and temple area is improving that little by little it would all go away.

Just wondering if yours was in other places than just the front of your head.

I too feel better if I can get moving. Maybe by summer I'll work on loosing the pounds I put on from this too. I do walk, but it isn't enough to loose the pounds. I miss the healthclub but still feel to ill to go so I walk outside and use my treadmil on really cold days.

Take care - Gloria

Jill - sorry, I was so hoping the new med would help you. Maybe give it some more time. Always thinking of you - Gloria

JB - Hello - I do get headpain with the pressure. It is usually either headache or pressure or both together, but never nothing. Dizziness and vision are improving though so that I suppose is a good sign. Take care - Gloria

Congrats Howie.. at least now you can move on knowing what you have and slow try and get to that 100%. I'm sure you will easily.

The doctor sounds like he knows his stuff - I especially liked to hear him re-iterate that you CAN have inner ear damage with MAV, noone knows why, but the figures are around 20% with abnormal ENG, and 80% without. He is right - the patient who has no abnormality on any testing (audiogram, ENG, MRI) is a strong case for MAV.

It's confounding, but also very sad to me, the number of people on other forums (can't mention them here) who have this condition and either cannot find a decent, progressive-thinking doctor capable of diagnosing it, or simply themselves are unwilling to believe that something so benign as 'migraine' could make life so miserable. When I was a member of one of these other boards, almost every single member complained of headaches which fit the criteria for migraine. An optimistic estimate would be 50% (pessimistic would be more like 80%+) - since the general population has a migraine incidence of between 10 and 20%, surely this cannot be by chance. It also strikes me as the main reason people are on these boards is because they can't find a diagnosis, or can't find any relief because they have been given garbage diagnoses - Menieres for example is handed out way too often. I know if I were 100% well I'd pop by once in a while to see how everyone was going, but I wouldn't be a regular member. Most who got better would stop posting altogether and these boards would be so much less active!

Adam

Hi Adam,

You seem very knowledgeable in the migraine area so maybe with your research you can answer this question.

I came down with this inner ear/head monster 2 weeks after a severe ear infection that was surgically drained (no tubes were placed in my ear). My eardrum closed back up and the infection was gone within a week. A week later, I believe I ended up with another virus as my throat was extremely sore - negative throat culture.

I've had all the inner ear symptoms (mild dizziness, vision problems, pressure in my head/ears, tinnitus and horrible headaches, etc.). All this started with the ear infection on January 3, 2005. I've gotten better over the year but still suffer from headache, pressure, funky ear feeling on and off and tinnitus.

Now for my question, is it possible to end up with migraine from a virus or ear infection? I've had a ton of tests done from scans to an mri, audiograms, pressure tests, EEOC for meniere's and the rotary chair test. All normal. I have no history of headaches and never a migraine prior to the ear infection. My neurotogist doesn't seem to think it is migraine and talked to me about doing an ENG following my next visit to him next month.

This idea of MAV has been thrown around and everything else seems to be normal, but I still don't see how my problems could be migraine because of my ear infection, past history and no family history of migraines. Just wondering if a virus could cause this as I can't find anything to support that theory. What are your thoughts?

Thanks so much. Do you feel fine now with meds?

Gloria

Hi Gloria

I'm doing really well lately thanks.

I know this may seem odd, but ear infections and sinus infections are common enough that I think too much emphasis is placed on them as a precipitating factor in the onset of dizziness. They might be related, but the answer is one you'll probably never know.

Do you have any family history of related disorders? I would suggest that a lot of people have migraine that don't know it - they tend to get headaches often enough and just think its normal. There is also a lot of misinformation about what you need to diagnose migraine - ie. you do not need auras which some people seem to think you do. I'd suggest reading the IHS criteria for migraine (should be easy to find on the web) and seeing if you fit into it. A lot of people do that don't know it - the same could go for family members.

I went to my neurotologist appointment many years ago telling him I had no significant family history - I only realised after quizzing them that my maternal grandmother did have migraine, and major depressive disorder (she committed suicide).

My mother also has severe panic disorder and generalised anxiety. These disorders might be allelic to migraine and/or vertigo (a genetic term for being caused by the same mutation), or they might have the same pathophysiology. Any history of that in your family?

Adam

Hi Gloria, Howie, Adam & all,
Just wanted to add my recent experience in on this post. I have also, in the past week, been dx'd with MAV by a very well-respected neuro-otologist here in Canada. I was absolutely floored by it - didn't even consider the possibility before - my main symptoms were originally short vertiginous episodes with 24/7 disequilibrium and nausea - never any headaches. I tested positive for BPPV (right side) two years ago and have tried MEP and VRT as suggested at various intervals during the past two years - unsuccessfully - it actually did make me feel much worse to the point of having to be hospitalized. Then in my constant search for answers, another "label" of a possible "Meniere's variant" was attached to the BPPV because my episodes of vertigo were lasting longer and did not always subside when I lay still, as they usually do with BPPV. I also experienced (and still do) major brain fog, "vision-associated" worsening of vertigo, associated anxiety and depression/panic disorder and a 50 pound weight loss. It is ongoing, but I am hoping that we have finally found a "cause" and can work at getting the underlying factor (migraine) "fixed" and go on from there. During my most recent visit, my vestibular testing showed no evidence of any peripheral or central vestibulopathy as it did two years ago.
Anyway, it seems we're all on the same "search path" and it's essential and wonderful that we can share and learn from each other. Gloria, I hope you can find some answers and relief soon - it's been so long and frustrating for you I know - and you have given encouragement to so many others.
Right now the learning curve for MAV for me is still very steep - I did find out that there is a family history of migraine on my mother's side. Adam, I've heard that you've done lots of research in this area - any more gems to share? I don't actually have the consult report from the oto-neuro yet - I'm looking forward to reading and verifying what I "remember" through the fog, but I do know she said she usually treats MAV successfully with nortriptyline - so I think that's where I'm headed. Any info in this area?
Subs, Scott and Firechick, can I ask what you know about in this area - or can you point me in a direction for more recent info? I know I'm asking a lot, but I have to get all the info I can to get a "feel" for this, since it's not something I really thought of as a possibility before, and I haven't been paying attention like I should have to info in this area.
So thanks once again to all who have shared and hoping that you are "on the right path", as I hope I am... I guess time will tell! Take care all..
~Sheri

Adam:

Thanx for the reply.. I must admit for the 1st time since this happened I have absolute confidence in the diagnosis and what the future brings... No more "what if" statements.... Everything just fits to what he described as I started feeling better with the Zoloft, Centralized Vestibular Dysfunction on my test results were revealed and Vestibular Migraines are a Central Vestibular Disorder. A lot of the other examples the doctor and many people like you have described. I have also felt a lot better since cutting out aspartine and replacing it with splenda and cut out a lot of other triggers. Only thing I still have is morning coffe but I have half decaf.... I will keep you posted....

I have a busy year as my wife is expecting our 1st child in June and now that I am feeling better I want to get a masters degree in MIS which I have not been able to do the last few years


Howie

Thanks for your input Adam. I still can't figure it out because there is absolutely no history of migraines in my family. (I am terribly sorry about your grandmother.) I never even had a headache until after this ear infection. Deep down I feel it has to do with the ear infection but just wonder why my head feels pressure and headache all the time (although it has gotten much better in a year). I wonder if somehow the infection or virus caused damage to the blood vessels somewhere in my head causing migraine; is that possible do you think?

Anyway, I am going to do a search on the information you provided and as you noted I do not have the typical migraine aura. Can a migraine be 24/7?

One last thing, I never suffered from anxiety or depression prior to the onset of this ear/head stuff either.

Thanks so much for taking time to provide some of your input on this nasty subject and I'm glad that you are doing well. - Gloria

Sheri - I really hope you get to the bottom of this too. You seem to have it so much worse than alot of us, but yet you seem to carry the load well. I remember how bad I had brainfog for about 6 month and am very happy that it pretty much went away so I know how awful that must be for you. The good news is that I can say it pretty much went away and so there is a likely chance yours will too. I'm thinking of you and sending you well wishes. - Gloria

Just wanted to point out that normal vestibular testing results do not rule out the inner ear as the cause of the problem (ENGs for example are normal 60% of the time in people with inner ear disease)....

Also someone mentioned (jill??) they were "unsuitable" for VRT.... As long as problem is stable and the function of inner ear isn't fluctuating (ie there is no active infection, recurrent menieres attacks, active Mav) then you recover through compensation - VRT is designed to enable compensation and therefore should be the first point of call as it can help speed up recovery in any scenario (there are studies suggestings it's effective in MAV for clearing up the chronic balance symptoms once the migraines have been brought under control)...

Gloria: To answer your question MAV is a type of migraine... People who suffer various types of migraine can have MAV as one of their symptoms, or it can be the primary type that a person may suffer with.... Nobody is quite sure why some people suddenly start suffering with it, some people have probably got an hereditary predisposition to it, for others it's part of a more general migraine pattern...

This stuff is so crazy. Can compenstation take place without VRT?

Thanks,
Jill

Thanks for the information Benny. Someone put something into perspective for me today and I'm going to stop over obsessing with things. I honestly believe I had an ear injury weather it be from the intial ear infection or the virus I caught again within a week of it. I've noticed improved over a year and I will continue with the vrt as I do believe it is helping. I just wish the other goofy head/ear symptoms with this crazy stuff would go away too. Thanks again. - Gloria

Hi Jill - I do believe someone else (like Subs) has an exact answer for your question, but wanted to point out a few things. I think keeping active (like Firechick) always says has proven to help tremendously; however, I do think that some of the VRT can be formatted to help with specific symptoms for example, the visual vrt exercises help vision problems. Also, Lizzy is a proven case that she got better with keeping busy. She did mention that she did some visual vrt to help with her bouncing vision problems.

I also want to make note of something. Scott mentioned in a post that we need to keep our anxiety under control or this crap can turn it into much more (panic disorder). Lizzy also stated that after researching and going in circles and driving herself crazy with trying to find out what was wrong only caused more grief. She started doing other things and vola she eventually beat this monster. I've noticed a pattern with this in myself and that is, if I wake up and have a day were I start obsessing over this stuff, I feel worse. My head hurts more and I feel more pressure and the tinnitus seems worse. I did that yesterday. I honestly sat with my not***** computer on the couch all day and I mean the whole day obsessing and crying that I am still not well. Today, I forced myself out and although not feeling great, I was much better than yesterday. So what I am trying to say is what Scott and Lizzy said is true. Perhaps time, faith, and patience is the cure to this inner ear stuff.

I hope you are doing ok. Keep your chin up - we'll get there eventually. - Gloria

did any of you who were or are on Zoloft have any bad side effects?

Hi Gloria,

Thanks again for calming me down. You are right, I am obsessed with this thing and I can't seem to let go and just have fun like I used to. I just don't understand how something can last so long. I swear I can feel and hear fluid in my ear (Drs. all say there is no fluid there) and the pressure and pain is driving me crazy along with this lightheaded feeling.

Every Dr. has a different opinion and I do panic about it because I feel like you said going in circles over this thing. I too believe I had an injury to my inner ear and just hope one day it will heal.

You have been a great help to me and I want you to know I really appreciate your kindness. I hope you have a great weekend and feel better soon. Like you said we will get there eventually.

Take Care,
Jill

Hey Gloria,
Thanks once again for using your own example to put things in perspective for others - you're right - obsessing does not necessarily help - I will try to take your advice and relax more, go with the flow and stop trying to "fix" everything. Thanks for saying that I at least sound like I'm dealing with it - that feels good - although I don't think my husband would agree about the patient part - thank goodness I've had him to "share" with in the rough spots. Anyway, life's too short to be miserable trying to figure it all out! Hope you're having a good day today ...
~Sheri

jill: Yeah, compensation occurs without VRT. Infact the majority of people with inner ear dysfunction compensate on their own, some people recover quickly but others only slowly progress, VRT simply speeds that process up (across the board). And most people will show vast improvement with a general regimented wallking and exercise plan, but VRT is designed to specifically challenge the weak areas so it can speed things up.

Thanks Sheri. Of course on my bad days, I can say other words (lol). My husbands dealth with alot in this past year as well; but what I said is true, I do feel better when I don't obsess as much. Easier said than done. I hope you are doing better. I didn't have too bad of a weekend, I just wish it would continue and then this stuff just end, but don't we all?

Take care - Gloria

BennyGibb,

Thank you for the information. It makes me feel a little bit better but what does bother me is I have no idea what I really have. I've had MRI, MRA and a CAT Scan of the sinus and one of the inner ear to rule out anything bad. Nothing showed up and I'm thankful for that but I still want to know what it is.

I worry about this so much because most complain of being dizzy but I have dizziness, pain and pressure in my right ear. I wonder if the pain and pressure need to go away before I can reach compensation?

Thanks,
Jill

Hi Jill,

Just wanted to chime in with what Benny said as I walked the whole year even in the beginning of this 1 -2 miles a day and up to three in the fall. I really believe it contributed to my decrease in both dizziness and vision. (still have just blips of it but can live with those symptoms.) I didn't start any kind of VRT until August and think Benny is right in that it just moves things along especially the vision for me as that is what I concentrated on the most. I can't say that I don't think the klonepin didn't help some because I did notice a slight improvement within three weeks of the first time I took it and then again about three weeks after my Neurotogist increased it slightly.

Just wanted to mention that I don't think the pain and fullness has to go away to compensate and become less dizzy as I have proved that and the few other recoveries said their dizzies went away before stuff like pressure and pain. I honestly can't explain the burning pain as you and I are the only ones who talk about that, but I still get it as well as the fullness and pressure in my whole head and both ears, but my dizziness and vision has improved starting in the month of December. I would have to say my vision is worse than my dizzies now as the dizziness is just about gone. My vision is just slightly off and nothing like it was all year. In case you didn't read it or remember, I asked Lizzie33 about this and she said her vision and ear fullness was last to go for her so I do believe the off dizzy feeling can go before the pain and pressure.

I do agree it is rough not knowing what is causing it as I don't either but just hope it burns itself out one day. I drove myself nuts last Thursday sitting on the couch depressed, head full of pressure and headache and just researched and researched all day until I got a very nice little message from Howie who put things into perspective for me about my obsessing and you know what, Friday I didn't do that and the weekend I didn't do that and felt much better so I can't help thinking that at this point, we are causing some of our anguish. (Thanks Howie - you gave me the boost I needed to get through that rough day.)

Take care and relax :wave: - Gloria

Gloria,

Thanks again for your reassurance. I tell myself everyday that I'm not going to be obsessed with this and I continue to do it over and over again. I really need to take your advise and try to relax. We will get over this someday. Thanks again and take care.

Jill

Hi Jill,

I'm afraid it is easier said than done as I have my days in the week or even moments in the day that I obsess.

All we can do is live minute by minute and hopefully by sharing our experience with each other it helps us get through it.

Have a good night - Gloria