Hi Adam,

I wanted to pick your brain a little and get your opinion on something since you seem to be very knowledgeable on both vestibular disorders and migraine.

If someone has an increased gain in their visual vestibular ocular Reflex meaning their eyes are compensating faster than their vestibular system (no nystagmus) and creating some blurriness would you associate that with more of a vestibular problem or migraine or do you think it can be prominent in either cases?

Also, if improvement in this area was made by an individual over time wouldn't that be key it is vestibular and not migraine?


Love to hear your take on this.

Thanks,
Gloria


Also - assuming that hbep may read this since it is migraine related I have a quick question for your too.

I'm curious to know if any of your dizzy tests showed abnormal eye movements in the past specifically when you were originally diagnosed with VN? Also, were any of these test repeated when it was becoming evident that you were a migraineur?

Hope you are doing better hbep.

Great questions Gloria! i am awaiting his response to that as well!:D

Adamw: also......i know i sorta said it in another post....but the docs seem to be leaning toward MAV for me. i just dont understand how i would have this crazy constant jumpy vision (or oscillopsia-if that is really it???) I haven't had my vestibular testing yet, so i am guessing maybe I may have had vestibular injury and now left with MAV and the constant vision problems with some lightheadedness/imbalance????
thanks!

Hi Gloria:

After hearing from you I decided to check on the boards... I was tested 2 times in a year and failed several eye movement tests.. Doctor said that is normal but because the symptoms are so similiar and all the VRt and VN treatment had limited success , he was positive it was MAV and the rest is history

Hi Gloria:

After hearing from you I decided to check on the boards... I was tested 2 times in a year and failed several eye movement tests.. Doctor said that is normal but because the symptoms are so similiar and all the VRt and VN treatment had limited success , he was positive it was MAV and the rest is history

hi howie! if you don't mind my asking, what treatment worked out for you with your MAV?

NEVERMIND....sorry, just read you are on verapamil in the other thread... glad its working, hope the blip ends quickly

Hi Gloria

When I was referring to VVOR in another post I was actually refering to vertical VOR. There was a study in which migraineurs had abnormal vertical VOR gain even during symptom free periods.

I am not really sure of the answer to your question. It's hard stuff - especially when you start matching up symptoms with documented peripheral dysfunction as well. e.g. someone with a badly damaged peripheral vestibular system from migraine (probably vasospasm) might get to 100% or near it within days with the right preventative. Another with no documented peripheral loss (e.g. no abnormal findings on ENG) might struggle to get better.

There really are no easy answers other than just jumping in and trying the meds. I've been through enough of them not to be scared of them anymore, but I do avoid those with ridiculously severe and possibly permanent side effects like methysergide, and the older anticonvulsants (phenyton, carbamazepine etc.). Most migraine drugs are pretty benign and side effects are reversible upon stopping them.

alexi, there is no reason you have to have a vestibular injury to suffer what you are - there are two parts to the vestibular system.. the brain.. and the peripheral vestibular organs. Which is more complex? Having said that, vestibular injury can also be caused by migraine alone - it does not have to be viral. Noone is sure exactly what causes the injury but probably vasospasm or ion channel dysfunction.

Adam

Hi Gloria,

I had a rotary chair test early (ish) on - and yes they did find something minorly abnormal with my eye movements - although can't for the life of me remember what. I have had no further tests since the migraine diagnosis. I never had a caloric. One of the not so bright suggestions by a GP when I first got ill was to have my ears syringed to get wax out. It was after that, that my life turned upside down (almost literally) I had only been minorly spacey and odd before the syringing. After it I was disabled by illness and didn't climb out of that bout of illness for 18 months. Needless to say I wouldn't allow anyone to put water in my ears ever again.

I'm in to my tenth week of relapse, increased my drugs but as I said elsewhere hasn't been the magic bullet yet. Although there has been an improvement - just not enough of one for my liking. I've said it before and I'll say it again, this illness could try the patience of a saint. I've been really depressed on and off with this bout in a way I haven't been before, partly because it has absolutely messed with my cognition in a way that is new and troubling. One thing that I think I've said before but has been extra evident with this relapse is that my tinnitus pretty much doubles in volume when the migraine hits. And as the symptoms have improved slightly the volume has decreased.

I hope you're doing ok Gloria. I so hope you experience some more relief from your symptoms soon. I'm guessing you might be thinking of trying migraine drugs. I take propranonol which has proved the magic bullet in the past. It's a fairly benign drug - and Adam is right, a lot of these drugs can just be ditched if they cause an issue and they are out of your system fairly fast. You just need to make sure you avoid the really horrible ones.

best,

I have an issue with my VOR, per my doctor. When doing VRT's, I have more difficulty with focusing on something and nodding my head up and down or following a target that is moving up and down than I do with left to right.

So from what one of the previous posts here states, this points to migraine? I haven't OFFICIALLY been diagnosed with migraine/MAV, but I'm pretty sure I have it.

If anyone has more information in regards to VOR deficiencies, please post it.

. e.g. someone with a badly damaged peripheral vestibular system from migraine (probably vasospasm) might get to 100% or near it within days with the right preventative. Another with no documented peripheral loss (e.g. no abnormal findings on ENG) might struggle to get better.


Thanks Adam for your input. you made a good point that I did not consider and I suppose the migraine could cause the inner ear damage which would result in the abnormal VOR linking it to vestibular as the cause. Your right, it's hard stuff to figure out. These tests don't really seem to be of use since they can really point to both vestibular and migraine. Why even perform the test? What can they really tell the doctor?





I'm guessing you might be thinking of trying migraine drugs.

Honestly, I'm not sure what is running through my head. Kind of feel like I'd rather take the easy road out and just not wake up tomorrow. I know this cold I have is messing with my mind right now. What brought this question about was I was gathering information for Dr. Brenner who I will be consulting with about my tinnitus using the Jastreboff model. (You must be familar with this TRT as Johnathan Hazell in the UK has a big center to treat tinnitus. He has worked with Dr. Jastreboff in the US to develop this treatment.) It is the only TRT with a high success rate. Anyway, I was reviewing my rotary chair test results which were pretty normal the first time I did it with the exception of some borderline leftward asymmetry. My visual vestibular ocular reflex was abnormal with a little increased gain. In other words, my eyes were compensating a little faster than my vestibular and brain were. When the test was repeated a year later, my result were normal. My eye problems did improve over that years time, but still don't seem to be 100%. I can't quite put my finger on what is wrong, but something is definitely not the same as before my injury.

I suppose I am just trying to arm myself with some more knowledge from other's experiences.

There is no reason I should doubt my current neurologist's theory (he is head of a prestigous migraine institute here) that I sustained damage to my CNS as a result of the allergic reaction to the antibiotic. Evey thing I read about brain injurys, affects the vestibular/auditory system and the prognosis is always the same, 2 - 5 years just as my neurologist told me. He did says he's seen it happen before and he has seen recovery in that time frame too so I am trying not to doubt him. I suppose, like you and everyone else on this board, I am just tired of dealing with never feeling like I did before. I am probably just putting more stress on myself with worrying about stupid little things that I can't change. I suppose I am just getting myself worked up too as I have a busy month and am tired of telling my little boy no to everything. I'm suppose to take him to a birthday party tomorrow and this cold is getting me down. Most people think so what you have a cold, but colds now make me feel so different than in my previously in life.

To be honest, meds scare the heck out of me. I react to everything I take. My neuro thinks that it is best to let it all run it's course and to work on desensatizing my CNS. The antibiotic that started all this, then the whole klonopin ordeal; it is all too much to handle any more symptoms.

I am hoping to make some leadway with my tinnitus by the time I go see my Neurologist in December. I am really hoping that in time I have brought some of these head and ear symptoms on myself with stress, anxiety and depression from the start of this whole head monster. I am hoping that the Dr. I am seeing for the TRT can tell me she has seen some of the other symptoms I have resolve in time with TRT. I suppose in time if I don't show some more improvement after my 3rd year, I will ask about trying a preventative. It just seems like there are a lot of people who have tried them and they don't work for them either. I know it is a trial and error thing, but it seems they have only helped a few of you and then in time like yourself and Howie's a little relapse. My heart broke when Howie told me he was having problems again. I guess getting some relief is better than none.

I have also started biofeedback with a doctor who has a background in migraine. His name is Dr. Joe Perry and he has a website where he has put together some migraine self-help packets that ties in biofeedback. I'm anxious to go to my appointment next week as he mentioned he had a patient who has some sensory overload problems when going into stores too. They have been working on some exercises that seem to be helping her. He couldn't go into detail because of patient confidentiality.

Thanks for sharing some of your information about the rotary chair test (I wonder how valid these test are sometimes). I do hope you continue to see more improvement. I can imagine that the cognitive problems can be a bit much especially when trying to make a living. I have to admit that the cognitive issues have resolved for me for the most part. I just hate the inner ear symtpoms and this heavy-headed feeling I have all the time. Weird thing is, when my headaches are at their worst, my tinnitus seems better, unlike yours. I haven't figured that one out yet. Take care of yourself Hbep. Please let me know when you have a break through in your symptoms.



Thanks for your input Howie. Hope your symptoms settle back down quickly. Congratulations on your promotion too. Way to go!!! You people working with these conditions never fail to amaze me. Although, I still don't know how I got my son to preschool that first year, everything is such a blurr.

Gloria:

I feel better today.. I would not consider this a relapse.. As you may know their is No Cure for MAV. The preventative just manages the symptoms. Thats why you take the preventative. But things like food triggers can give you symptoms from time to time. No different than IBS or a regular headache. Mine happens to be the change of season. My sypmtoms were pretty minimal .. I mean maybe 100% to 95% but while at 100% for 8 months it took me by surprise as I was used to feeling normal

thanks for the well wishes

Thanks Howie....glad you are better today. I think this cold is just really getting to me. I have pain in my ears originating from my sore throat and I think it is just freaking me out. Seems like I have a sore throat every other week too. I suppose it could be stress causing the sore throat. I just feel down as I was really working out over the last couple weeks, practicing relaxation/meditation, really working on strengthing my immune system and bam this cold. I just got over a really bad one the first week of September and now another one. I really hate this time of the year. I have some pulsating in my left ear drum too which is just freaking me out that I have another problem developing now, but don't understand after 3 years now. My husband says it is stress, but just can't see how that would cause my ear drum to thump. Just aggrevated.

Thanks though, I feel a little better now that you seem to be doing better. I have to admit, it got me down a little. You have a good attitude about it so the preventative must be really helping you. I see my headache doctor in December so if the TRT and Biofeedback don't seem to be helping by then (TRT could take months to a couple years to be successful) but if I still feel a wreck, I may bring this all up to the doctor. I'll have to get your doctors information off of you privately. Maybe I should get another doctors input. I can combine the trip one of the times when I head to Philly with follow-up appointments for my TRT.

Take care.....have a great weekend......Gloria

I think the Biofeedback will help your stress and focus which can not hurt. Anxiety and Stress is half the battle... I realize I am doing well so it is easier to stay positive. Despite the Blip I realize this wont be the first or last. The hardest part in the beginging is the not knowing what i have. Now I know there will be ups and downs and with the preventative mostly ups. Just deal wih the blips like any other minor illness. you will be ok and just enjoy eveything as much as you can. My doctor is wonderful but I would commit to one thing and focus on that. You dont want to panic and confuse yourself with different ideas. Just stick to your plan and know you have the other doctor as an alternative. Otherwise you will be second guessing. A lot these issues take time to resolve. It took me 2.5 years to get any closure

Hi Howie,

I suppose if I just had little blips I could adjust and enjoy the better days, but I have symptoms 24/7 non-stop now for years. It is just too much to have this damn pain and the ringing. The pain and pressure is better on half the days, but I still can't stand it even on the better days. Your right, I do need to focus on one thing and try and move forward hoping that it helps with the other symptoms. I am hoping the TRT will help the tinnitus some so that some of that stress is eliviated and maybe the other symtpoms will improve. I guess I feel like big crap from this cold so once again, I am trying to find another out.

The hardest part in the beginging is the not knowing what i have.

My first consult with the doctor for biofeedback said that one of the things he thinks is hindering some of how I feel is that I don't know what the heck happened and that I am suffering from the fact that this interrupted plans in my life and has changed my future plans. Kind of like post-traumatic stress. I don't disagree with him, but at the same time, I had most of these symptoms I suffer from before I became anxious, depressed and stressed. I guess only MORE time will tell.

Take it easy Howie.....:)

Hey Gloria - what do you think about the hormone issue? I'm not sure how old you are, but if you happen to be in the late 30's - early 50's range, you might also be dealing with hormones from hell. If you go onto the menopause board, some of those ladies describe EXACTLY what some of us talk about in here. There is a "list of 35" or something like that, that describes symptoms of perimenopause, and they are exactly what we describe here.

I'm sure you already know that. I was just wondering if you've tried HRT or anything in that way.

Hi Missy,

if you happen to be in the late 30's - early 50's range

No I'm not any where near menapause. Too young for that. My symptoms started after a very severe allergic reaction that I had to an antibiotic after a virus with a possible infection. I was actually diagnosed as having sustained a brain injury from the allergic reaction. To be honest, I don't really notice any changes in my head symtpoms around my monthly time either which makes this all even more bizarre. I have my normal mentrual cramps and backaches but my symptoms in my head don't really change. At times, I even notice my better times are around my cycle.

I had my first child just barely 4 years prior to all this mess and even during pregnancy and after I felt really good. I even did aerobics up into my 8th month of pregnancy whereas now, I have a hard time doing laundry on some days. The inner ear symptoms are what gets me the most.

I do know that your hormones can cause all kinds of problems and I do belive they can make all these problems worse so it wouldn't surprise me if it is stirring up a lot of problems for some of the women on this board.

Thanks for your input.