I found a hopeful post

I hope it’s ok to post something from another site. I found the below on dizzytimes.com. I haven’t looked at this site for months, as I prefer our site. But, I came across this today and thought it was a nice positive post. The drug combo was also interesting:

"I posted once a couple of months ago to introduce myself. Quick story: I’m a physician who got dizzy 3 mos after having 1st baby but got better, then got very dizzy/vertigo 3 mos after having 2nd baby, life came to screeching halt. Diagnosed with bilateral vestibular loss but didn’t get better with time or VRT. Massive photophobia, phonophobia, all the MAV stuff, had been on disability for about 6 months.

Then I went to my third neurologist as my last ditch effort to try something new. I started a combo Librium/Amitriptyline pill and (about a week later) 5 mg/day Lexapro. I was skeptical b/c I had already tried nortriptyline and verapamil with no improvement. I felt better within days and continued to improve. I still have days that aren’t as good, but the heavy head, throbbing, pressure, bad dizzies and vertigo are gone. Recently, I’ve been easing back into work and will return full time next month. I went to the movies last weekend (can you believe it?!), go to the grocery store, play with my kids, etc. Before, I barely left the house and hadn’t driven in months. I was never depressed or anxious when leaving the house because I figured “what’s the worst that can happen?” I just was really sick.

Whatever med works for you, I recommend a no fear attitude with this (with the notable exception of driving, etc - doing something that can actually kill you and others). When this started, I had a bad vertigo attack when I was on a busy city highway with my baby in the backseat. Now if I hear that Carrie Underwood song “Jesus, take the wheel” I start crying (and I’m not even religious). I feel like I used up my luck getting out of that one, so I am very careful about driving on bad days.

I just stopped the Lexapro b/c I didn’t think it was doing anything positive. I’m going to add Effexor to see if I can get additional improvement.

I still have bilateral vestibular hypofunction, but that mostly manifests as bad balance. I don’t walk across dark rooms and can’t do a lot of things with my eyes closed. I’m continuing VRT for that. I found out it was the MAV that was killing me. I can now read all day, be on the computer for hours, and no longer am adjusting the brightness on my TV or drawing the curtains. I also bought a great pair of Oakley polarized sunglasses to cut down on glare when outside. I still don’t eat aged cheese or MSG b/c I haven’t been able to rule out that those are triggers for me. I do drink a little caffeine and eat chocolate, nuts, and fresh-baked breads. We don’t buy many packaged foods. I get the good American cheese from the deli counter and use that in my portion of casseroles, homemade pizzas. Maybe later I’ll try cheese, but I don’t want to mess up a good thing right now.

I know this is a rambling post, but I’m so happy to have my life back. I’ve been doing 95% better for about two months and am very optimistic about the future. We had a great time celebrating my baby’s first birthday. I felt like we were also celebrating returning to normal as a family."

It makes me hopeful! Thanks for sharing. My doctor decided to go the amitrip route and up my dose to 50mg this week. I’m keeping my fingers crossed!
Sarah

good luck to you, Sarah. Do you live in US or Europe? It seems like in US docs give Nortriptyline, rather than Amitriptyline.

Thanks for pointing it out Lisa. Interesting story. I asked her if she could post her success over here too. Here’s the original thread:

http://community.dizzytimes.com/topic/14843-ive-got-my-life-back/

Scott

— Begin quote from “MAVLisa”

good luck to you, Sarah. Do you live in US or Europe? It seems like in US docs give Nortriptyline, rather than Amitriptyline.

— End quote

Thank you! I live in Chicago. This was a medication I was on (25mg) when I went to see Dr. Hain that was rx’d to me be a different doctor. He too seemed surprised that I was taking it. When I mentioned to his medical assistant that I thought the low dose might have helped a little (now I’m not sure if it was that or just some time off of work) she recommend upping the dose to 50mg to see if it makes a difference. We will see!

Thank you for the positive post. Has this medication been mentioned before? Is it hard to obtain in the US?

Sal

That is encouraging. I too had good success with nortriptyline in the past. What is it about pregnancy/childbirth that triggers MAV? I have seen numerous posts of women giving birth and within months MAV develops. There has to be some connection.

— Begin quote from “Sally”

Thank you for the positive post. Has this medication been mentioned before? Is it hard to obtain in the US?

Sal

— End quote

I’ve had no trouble getting it through my local pharmacy. I think it’s generic. The brand name is Elavil and that is not available in the US, however I have no idea why.

Sarah

Hi all,
Elavil (amitryptiline) is absolutely available in the US. In fact many neuro-otologists (I know not Dr. Rauch as he prefers nortryptiline) and neurologists do prescribe it as first line treatment for MAV. Depending on who our docs are and their preferences, experience, and comfort level with each med is how they choose to prescribe for not only our condition but all conditions. There are just so many damn meds out there that work similarly. Plus, don’t forget the drug reps that are constantly barraging docs and pushing their meds on them:-)
Lisa

— Begin quote from “MAVNY”

Hi all,
Elavil (amitryptiline) is absolutely available in the US. In fact many neuro-otologists (I know not Dr. Rauch as he prefers nortryptiline) and neurologists do prescribe it as first line treatment for MAV. Depending on who our docs are and their preferences, experience, and comfort level with each med is how they choose to prescribe for not only our condition but all conditions. There are just so many damn meds out there that work similarly. Plus, don’t forget the drug reps that are constantly barraging docs and pushing their meds on them:-)
Lisa

— End quote

Lisa,
Do you know what the difference is between amitryptiline and nortryptiline?
Sarah

Both Ami and Nor are in the same class of meds called tricylics and have similar mechanisms of action. They are traditionally used as anti-depressants. Ami has been FDA approved for migraine prophlaxis whereas Nor has not received this stamp of approval. This is probably why so many docs prescribe this as first line migraine treatment. Both have similar side effects, but some docs feel that Nor has less sedation than Ami which may make it better tolerated for some. That’s really the long and short of it in my opinion. If Ami works for you, there is probably no reason to swith to Nor.

lisa

I guess I was asking about Limbitrol which she said she was taking. I found it was a combo of librium and ami. After a terrible benzo withdrawal from very low doses of ativan and klonopin which stopped working, I am leary to try librium. But then again if it worked… how long would it last/?

Sally