My 15-yr battle with Meniere's - Migraine Assoc Vertigo - Mitochondrial Disease

My fifteen-year fight with Meniere's Migraine Associated Vertigo? Mitochondrial Disease?

This is a very long post. If you want to get to the IMPORTANT PART without reading about my history, which supports my conclusion, you can go to the end of this post. Then, if applicable, read the rest about how I came to that conclusion.

In 2001, an ENT diagnosed Meniere's based on severe, vomiting vertigo attacks that happened sporadically - about one per month - and lasted about four to eight hours. I was told to cut salt and learn to live with it. That lasted about one and one-half years.

When the vertigo came back in 2004 after a remission, I began having three episodes per week, up to eight hours long with vomiting (then a day to get over, a good day and then another attack day, then a day to get over - wash rinse repeat). I ended up in ER a couple of times for fear of dehydration which can induce ketoacidosis (a really nasty sometimes fatal condition in dehydrated type I insulin dependent diabetics).

During that time, I went to three other ENTs and an otoneurologist (deals with balance/vertigo in the inner ear and how the ear works with the brain - Meniere's specialist among other things). A note to all: Forwarding doctor notes to give history so as not to repeat what has been done to a new doctor is your choice, but I learned not to forward doctor notes to other doctors because, after charging me $200+ for an initial visit, they "concurred" without looking for any other issues or treatments.

I should have realized something was up when I went to an otoneurologist (no longer practicing) because episodes were particularly awful and/or frequent, and he would put on the goggles, etcetera, and tell me that the Meniere's was under control. Then when I had a check up with little or no episodes, he would want to treat the Meniere's more aggressively because, according to his tests, it was then out of control. I had many arguments with him, and he repeatedly told me that I was way too anxious. When you go into a spin driving on a busy highway, or your 14-year-old daughter and a friend have to sit for an hour smelling and hearing you throw up in the front seat of a car until someone can come and get you and take the friend home instead of your home for a sleepover, and you constantly sit near the door and know where all of the exits and restrooms are, avoid social situations so you don't embarrass yourself, and you are afraid to get on a plane or anywhere confined, you would be a little anxious too.

I left him and ended up at a very, very good otoneurologist - John Oas who is now at Ohio State University Medical Center - Gahanna office. He had set up the Balance Clinic at Cleveland Clinic and had been a NASA scientist; the guy has some chops. Look up his YouTube videos to see the work being done on this at OSU Medical Center. He spent an hour with me getting total family and medical history as well as total symptom, disease activity history.

He was the first to even mention migraine associated vertigo, while ruling out other dx's like cancer, a dehiscence (rupture or hole), inner ear malformation, chiairi malformation (a malformation of the brain stem that can mimic Meniere's) and so on (I can't remember all of them).

On this forum, I learned that some got relief from NUCCA chiropractic, some from trigger point therapy, some from a supplement regimen, and some from cutting out wheat. After I started with NUCCA (upper cervical /neck only) chiropractor, the episodes reduced to one per week. After a few months, I added deep tissue massage because I could not find a trigger point specialist. After months of work, including myofascial release (basically breaking up hardened connective tissue to release muscles), the vertigo episodes reduced to once per month. Then I went on a very strict diet (macrobiotic - vegetables, beans, rice basically) and after one month, the episodes stopped. Hallelujiah.

During all of this time, I lost about 80% of hearing in my right ear. And what I do have is fuzzy and distorted, like people talking through wax paper. I also had a great deal of ear fullness or pressure, hyperacusis, recruitment, and tinnitus of all sorts. In the last few years, I have begun to lose hearing in my left ear, but very slowly and not associated with any attacks, and not distorted, and no recruitment, tinnitus, etc.

A yearish after going into remission, I began having a very, very fast nystagmus episode every day that lasted for about 15 seconds, with no vomiting, but it was very difficult to stay vertical or drive. Strobe lighting, like sun through bare trees while driving would set off an attack. I also had some odd, but not particularly disturbing visual issues that the ophthalmologist (I see periodically to check for diabetic retinopathy) could not explain. There was a small circle in the center of my vision that was fuzzy like the focusing indicator in the view finder of a camera. Also when I looked at straight lines like the edge of door, it would be wavy.

This clearly was not Meniere's.

I did not realize it but some meds for blood pressure (Enalapril/Vasotec is an angiotensin-converting-enzyme inhibitor) also mask migraine symptoms. The week before the really brief, intense vertigo attacks started, my GP took me off of Enalapril because of a suspected allergy to it. Once it was out of my system, the brief, intense migraine-induced spins began.

Back to Dr. Oas. He put me on an anti-seizure med for migraine associated vertigo. I have now had TWO veritgo episodes in ELEVEN years: both after taking in too much caffeine (a big migraine trigger), a 15-second one just after going on the anti-seizure med and an extended attack recently DURING a migraine headache. Although Dr. Oas went with the Meniere's dx originally and introduced the migraine associated vertigo dx, he never stopped looking for other possible dx's and underlying issues. He put me on Valacyclovir in case it would provide an answer to a viral issue, and he even rx'd acupunture for relief. But he usually came back to migraine or endolymphatic hydrops (basically same as Meniere's without deterioration of the vestibular system) with mitochondrial disease (which is a very, very serious disease if systemic, but can sometimes cause deterioration in only one part of the body - more so in some parts like ears than others).

I did not go for the extensive vestibular testing (rotating chair) for a very long time for various reasons: I was too sick at first; then as I got better, I did not want for anything to throw me back into another series of vertigo attacks for God knows how long (a year? a lifetime?); and then as the years passed with no spins, there was little reason. But it plagued me, "what if?" So I had one done.

Dr. Oas walked into the room with the results and said, "You don't have Meniere's. With Meniere's, your vestibular function would be highly compromised by now." After 15 years, four ENTs and, by then, TWO OTHER otoneurologists telling me I had Meniere's and to learn to live with it, after all of the attacks and hearing loss and living with it over my head during remissions - I never had Meniere's. WHAT?

A little on migraine headaches: I had them with aura (significant visual disturbance) and vomiting as a teen and they went away for decades. I do not get the headaches often now - maybe once or twice a year, but, because I am a type I insulin dependent diabetic and I throw up for hours and hours, many times until I cannot breathe, I end up in the hospital with dehydration.

About four hours into the last headache, I had an extended vertigo attack. Migraine.

Recently, I researched and found on the website for the National Institute of Health that migraine can cause permanent hearing loss, which few doctors know, even specialists.

With that revelation, it all came together for me:

- intense spinning after going off of the blood pressure med that masks migraines

- eleven year remission on migraine med

- the disconnect with the previous otoneurologist on when "Meniere's" was in/active

- the National Health Institute: migraine can cause permanent hearing loss and, I believe it said the pressure, tinnitus, etc, too.

- migraine in women is known for having an estrogen component and is more active during teen and peri/menopause - bingo

- no significant loss in vestibular function over 15 years which Meniere's causes

- attacks caused by caffeine which two otos said does not cause Meniere's vertigo (not sure about that, but Oas was one of them??) but does exacerbate migraine

- after eleven years in remission, having a vertigo attack DURING a migraine headache

- remission once I went on a restrictive diet that no doubt eliminated all migraine triggers

- even relief from deep tissue massage. Many times migraines have a tension/tense muscle component

NOW THE IMPORTANT PART:

Although I am convinced that this is migraine, never second guess Dr. Oas. Diabetes causes microvasular issues (sugar in the blood causes the red blood cells to stiffen, blowing out/tearing the very, very small vessels that take blood directly into the tissue and cells). I just recently read that diabetic related microvascular issues can cause hearing and inner ear issues because of reduced blood flow. It can even cause mitochondrial destruction from lack of sufficient bloodflow (mitochondria are the energy producers in cells - the energy is needed for the cells to work properly).

Dr. Oas does not deal with migraine only, only inner ear pretty much. He only dx's it and works with migraine associated vertigo. Before I read about diabetes leading to mitochondrial disease in the ear, the very talented neurologist I now see for migraine and I decided not to pursue testing for mitochondrial disease because many of the symptoms weren't present (just a mother with hearing loss in her seventies).

One reason to get mitochondrial disease ruled out if most symptoms are present is because, if it really is genetically present in your family, the children of females (carriers) can get the full blown disease (all children - male and female can get it - only females pass it on). However, you will want to make sure enough symptoms are present to warrant this complicated, multi-step, multi-disciplinary, painful, and sometimes inconclusive testing done. HOWEVER, if enough symptoms are present, you will want to get tested or your daughter(s) before they have children because the full blown, systemic disease is so devastating and potentially (maybe even eventually; I'm not sure) fatal in children. You and your neurologist will have to decide if it is worth it.

If there is diabetic/mitochondrial component involved with me, there is not much I could have done. Type I insulin dependent diabetes over 25 years is bound to do some damage to the body on a microvascular level.

But, if it is migraine, maybe, knowing all of this, I could have gotten the migraine under control with meds back in 2001 and never had PERMANENT HEARING LOSS, or at least some of the hearing loss, and years of agony, lying in bed throwing my guts out, and always wondering when the vertigo would start up again.

If you have vertigo attacks, do not go to an ENT only. In my opinion, they are not as well versed in INNER ear problems and other diseases that can cause damage to the inner ear and cochlea and vestibular and auditory nerves. As early as possible, also go to a neurologist (an otoneurologist, if at all accessible, or better yet an otoneurologist in a research institute). Tell the (oto)neurologist you suspect migraine associated vertigo. And do not leave the office until you have a trial prescription (a couple of months longer than the average time between vertigo attacks) for lamotrigine (After ramping up which you will need to do, I was on 150mg/day - 75 in morning and 75 at night). Now because of the recurrence of nasty migraine headaches, the neurologist put me on 200 per day, 100 morning/100 night). The only side effect of lamotrigine for me is my short term memory is not as good as it was, but few people's are over 50ish. And you will need to ramp up - immediately taking a high dose (I understand epileptics take 250+ mgs/day) can cause serious problems. Take this post with you. Print out the National Institute of Health statement and (small) study regarding permanent hearing loss. And anything you can find on Migraine Associated Vertigo that is applicable.

Also, one last thought. If you and your doctor do find that there is a migraine component, you will want to try to determine what type. MAV "generally" is caused by basilar (low back of the head) migraine. This is important because using standard drugs for migraine like Imitrex can, I understand, cause increased issues with basilar migraines. Instead of Imitrex etc., I have a cocktail I take at the beginning of a headache consisting of Reglan, Benedryl (yeah, who knew - but they even use it in hospitals to treat migraine), an anti-emetic (treat throwing up) like Promethazine, and a pain killer that does not kill the pain like Indocine (basically a high power Aleve or Tylenol), and Tizanidine (muscle relaxant). I may be forgetting something, later I can post the regimen. It is important to get it in early before the vomiting starts.

Get migraine associated vertigo ruled out as soon as you can. Again, maybe I would have my hearing today and would not have had years of agony and a sword hanging over my head.

Best of luck to all of you!!!!

 

Thank you all for your kind posts. i wrote out the entire story, not so much to say "look at me", but just maybe I can help one or even maybe a few people not have to go through what I did needlessly.

 

onehorse - Personally (not a doc), I would not worry about the mitochrondial damage if just diagnosed with type 2 DM, unless it is out of control which hastens everything along rapidly. However, if you become more concerned or meet other symptoms of mitochondrial disease, certainly, see a doc.

I obviously did not fit the migraine pattern at first. I have found that if I listen closely to my body and look at symptoms carefully and triggers, not just with inner ear/migraine, I can usually make adjustments and get better, regardless of what doctors say, e.g. the distortion after working out.

I don't know where you are on your migraine journey, but maybe the anti-seizure med can give the answer or other migraine treatments and lifestyle changes you read about.

The funny thing about inner ear related issues is that they can only open the inner ear after death when the person can no longer consult on what they see. Therefore, they are guessing at most things and adjusting as more symptoms become noticeable. It's a lot like stomach one hundred years ago before wide spread surgical facilities and modern diagnostic equipment: a stomach could be flu, ongoing indigestion, cancer, ulcer and so on, and because they had no way to diagnose, they guessed and sometimes they were wrong.

Best of luck.

 

bytheBay (already jealous - wish I lived by the bay), my right ear had fluctuations and loss in the low tones which are indicative of Meniere's. The fluctuations stopped a long time ago, but I had some recently in the left ear which Dr. Oas said is the brain tricking me and we could never catch them long enough to get an audiogram to prove either way. I am not sure if going on the anti-seizure med did it. Recently, I experienced, not fluctuating hearing loss, but fluctuating distortion. No one could explain, even Dr. Oas, then I read that working out strenuously can cause migraine which in my case would be ear related. Yep, happened every time after I worked out. For me, many times just knowing what is causing something or what is happening is enough. I cut back on working out so strenuously and hydrated more and the distortion minimized and I am not really having it much now.

My hearing has now pretty much flatlined near the profound mark. The hearing in my left ear which took the same low tone route and they thought was going to go into bilateral Meniere's has also flatlined a few decibels above the right ear. I have hearing aids in both ears now. The left works well. The right one pretty much just provides louder distortion, but provides some binaural advantage and alerts me to sound on the right so I can respond. I have to turn it way down in crowds or the distortion overrides any ability to hear in the left ear.

Regarding the tinnitus - hard to tell if it was the anti-seizure med or just 'burn out' or I just learned to compensate for it, the tinnitus is still there but less. Back when things were active, I had severe tinnitus: fuzz, I swear I was listening in on alien communications with multi frequency blip/bloops, a jet engine that made me automatically want to walk crooked to move away from it. Now it is just fuzz, sometimes louder than usual.

 

Here is my onset of migraine headache cocktail for basilar migraine that can't use Imetrex etc.. It is what they used when hospitalized with a four-day migraine:

Toredol - 30 mg - for pain
Reglan - 10 mg - for pain and to move meds and food through stomach faster before beginning to throw up
Benedryl - 12.5 mg (?) - every eight hours - yep, Benedryl lessens migraine pain - look up online forums
Zaneflex - 2 mg - three times per day - with flex in name I am betting muscle relaxant. They gave me an rx
for Tizanidine at home which is a muscle relaxant

I carry the ingredients of the cocktail with me because you do have to start it early.

Also:

If you are in excruciating pain and dehydrating from throwing up, sometimes you can talk them into Delaudid in the ER. It is the most powerful pain drug available and they treat it like a last possible option/ Fort Knox kind of protection against unnecessary use. But at a significant dose, that stuff will give you a religious experience in its ability to stop the excruciating pain. You have to talk them into a significant enough dose though; one ER would only give me a very light dose which did nothing, because they told me it is counter indicated in basilar migraine.

Only suggestions, use your discretion, talk to your doc.

 

one horse - you might want to try lamotrigine/Lamictal before giving up on anti-seizure meds. It is known to be the most effective anti-seizure med in treating migraine and MAV.

 

when I first went on lamotrigine, mine was only vestibular as well. The migraine headaches started up again just in the last few years and were exacerbated by a young, independent 20 something daughter, making some of the same mistakes we did that are cause for alarm and anxiety in a mother . And some other serious life challenges that have ameliorated now.

Although stress can cause a flare up in Meniere's as well, it was obvious looking back that I was in a severely stressful ongoing situation when the attacks came back in 2004 which would bring on Migraine associated vertigo