frustrated newbie

I was diagnosed with Meniere's last September, after 3 months of what can only be described as pure hell. I had a 3 month remission and am now back in the hole again - going on 6 weeks solid now. I could really use some advise and thoughts on this.

Here's my story:

Last April, my dog jumped and hit me square in the jaw. Busted my lip. He was just excited, goofy guy. I wound up with some pain in an upper molar that had given me trouble a few years prior. I ignored it, assuming it was just bruised, but then developed a very hard bump above the tooth. Went to the dentist who said it was time for a root canal. To make a long story short, it took 4 root canals, and apicoectomy, and about 4 rounds of antibiotics to get rid of the abscess. This went from May- July. I just had the temp crown put on in January and the permanent crown in February.

Sometime in May, I went to the store and while I was there, started feeling hot and just sick. I assumed it was low blood sugar (not a typical issue for me), so I grabbed a candy bar, paid for my stuff, and left. I was actually fine by the time I got to my car.

Sometime in the middle of June, I was at work, and at the end of the day, while one of the docs was talking to me, both of my ears plugged up and I couldn't hear anything other than a humming sound. I have issues with some sort of allergen at work every summer - I think it may be mold. I was fine as soon as I left the building.

About a week later, on 6/20, I had my first vertigo episode. I had gone grocery shopping and it happened when I got home. It lasted about 20 minutes and I was mostly okay after.

At some point either before or after this, I really can't remember, I started having pain in both of my ears. I assumed it was an ear infection, was put on a Z Pack, and figured it'd go away.

Only it didn't. The pain got worse, like I was being stabbed in both of my ears with frozen knives, and the vertigo (spinning type) continued daily. Not one day passed that I didnt' have a problem. I started to get triggered by lights - mostly florescent lights- and computer screens.

I went to the doc several times, was told it was lab, and to carry on. After an excruciating headache that came with one of the bouts of vertigo (I still think the antibiotic I was on at the time triggered it - my heart rate was through the roof, my PCP thought it was migraine. I do have a history of migraine. He started me on Topamax 50 mg for 1 week, then 100 mg. I got worse on the 100 mg. He changed to Depakote. I couldn't eat. He changed to Elavil. It did nothing I can think of, good or bad.

In the meantime, I went to an ENT who did all the usual tests , which all came back normal. He said nothing was wrong with me.

My PCP did an MRI. Normal. He took blood. Normal. He sent me to a neuro who said I don't have migraines.

I eventually wound up with a neuro-otologist. He said Meniere's. Low sodium diet, diuretic. I was on the mend quickly. This was last September.

During all of the attacks, NOTHING helped. Valium and Meclizine didn't touch it.

I still had some issues after starting the diet and the diuretic, but nothing major. I could live with it. I could work, go to PetSmart adoptions (I do rescue work also), I could run, I could walk my 6 dogs... I just felt a little off here and there, but Valium helped.

By November, I was perfect, Like nothing had ever happened. I was taking Valium daily (4mg). Life was perfect.

In January, I got worried about taking the Valium daily. I started to taper myself off by 1 mg every 3-4 weeks (was the plan). I forgot to take it one night and my head didn't fall off, so I figured it was no big deal to just quit taking it. That was 1/16.

Allergy season had started, so I also started back on my Allegra, which I had stopped taking sometime last fall.

On 1/25, I had my first dizzy day in months. It wasn't awful, but was bad enough to affect my concentration and mood. I refused to take the Valium. It was a windy day, so I just figured it was the weather.

I was fine until 1/31, when I had a couple of "mini-spins" that lasted seconds each.

I was fine until 2/4, when I started getting dizzy and nauseated if I leaned forward. I started becoming more sensitive to lights again, too. But no major attacks. I called the doc, who said it was probably the chaotic weather, give it time, it'll settle down.

By 2/6, I was having the pain in my ears again. I started back on the Valium.

By 2/9, I wasn't making much improvement, but wasn't getting worse, so I called the doc. He said come in. Started me on Decadron to "reset my ears."

Oh, boy, was that a mistake. Instead of getting better or just staying the same, I got WORSE.

Every day, about 2 hours after taking the med, I'd feel like I was on a boat. I called the doc, he said quit taking it. So I did. And it has not stopped since.

I got tubes in my ears on 2/23 and started with the Meniett on 2/24. It's been almost a month now. NOTHING. I thought it was helping initially, and my husband seems to think I've made some progress, but I don't see it.


Last Tuesday, I woke up with a headache. I wasn't on a boat and it was fabulous. Around 2, the headache started getting worse. By 4, I had one heck of a headache and the worst boat feeling I've had since this started. I left work. The headache and boat stayed. (Imagine being on a trampoline, on a boat, during a hurricane) I called my PCP, who said, again, migraine. He agrees with Meniere's too, but thinks it's both. He gave me 2 Sumavel shots to take. The headache went away and I woke up the morning after the best I've felt in 6 weeks. Then there was a flash on the tv, and the boat came right back. I got about 2 hours of relief. I called him back and told him and he started me on Effexor. Guess what? IT GAVE ME A MIGRAINE. Yup. Go figure. I'm starting to think God needs me not well for some reason.

I was started on Robulin yesterday. It seemed to help yesterday - took me from a 10 to a 3. Today? Nothing. Nothing. Nothing. Not a help at all.


I am now horrendously sensitive to lights. Even sitting under a ceiling fan will throw me off. I am on a boat every single day. I get periods of relief, but it comes back. I have tracked everything I can think of.... humidity, temp, air pressure, pollen count, rain or sun, food, meds... nothing. No clear trigger. Some days I wake up okay, just to wind up on a boat later. I'm still on the diuretic. I still do the low sodium. I also take Buspar for anxiety, which has worsened with all of this. I have missed a lot of work because I can't sit in front of the computer all day without getting sick. I've been trying to stay as active as I can, but haven't had a real run in 6 weeks. I haven't been able to walk my dogs. I haven't been able to go to PetSmart or to the shelter. I'm just so frustrated and sad and just SAD. I want my life back and it seems it's not going to be happening. My boss even said yesterday he's starting to wonder if I'll be able to continue to work. Fantastic.

I don't do any drugs. I don't drink. AT ALL. I do smoke. I take Buspar, Valium Robulin, and Midamor. I take antihistamines every now and then ( I started wondering if I was getting too dried out, so I have a stash of every antihistamine there is to try) I was taking Dymista for allergies, but felt like the dizziness was getting worse with it, thought maybe it was the steroid, so switched to Astepro. No real difference. I cut out the Asmanex for now, because it's also a steroid.

I drink a small glass (4 ounces) of green tea each morning. That's my only caffeine source. I haven't been eating chocolate in weeks. I've been adhering to the migraine diet, although I did eat a handful of peanuts yesterday afternoon, about 2 hours before I got back on the boat. Ugh. I already have so many dietary restrictions.

So. Thoughts? Comments? Any hope for me?