Hi everyone, I am so very thankful I found this site because I finally am hearing stories like mine and most importantly, I finally have hope. Like all of you, I have been on this debilitating journey and have seen countless specialists, performed numerous tests etc. finally my neurologist sent me to someone who specializes in this, an Oto-Neurologist and he’s soo good that it took me 3 long months to see him. He is considered one of the best in the country so I am so thankful to have finally seen him. As soon as he gave me a diagnosis, I broke down in tears as he said it can be treated.I have suffered from this for two years now but it became a 24/7 thing in November so I have been on medical leave since and have been living in this hell and trying to also be a great mom to my 4 year old. Anyway, He gave me a couple choices of meds and I went with Tricyclic which is an anti depressant used to treat MAV. First off, I want to find out if anyone has tried this and if so, any success or side affects??? I had a headache all nigh than woke up early extremely nauseous and threw up. It was awful. My stomach is better but headache persists. I hear from some people that the side affects go away but don’t know. I would like to try for a little longer but don’t want to feel like this.
If anyone has taken this specific medicine, please let me know. My glimmer of hope is fading and I would love to hear back.
Hi Mav
Sorry to hear youve been suffering so long. Sounds like you’ve got the right doctor and advice at long last. Tricyclic is the type of drug - there are quite a few different ones so we’d need to have the brand name or the actual drug name prescribed for you. e.g. I’m on a tricyclic called Prothiaden and the drug itself is dothiepin hydrochloride. After trialling about 4 meds last year this one has definitely helped me the most. I trialled another tricyclic called Nortriptyline which has/is helping a lot of others on this forum. Unfortunately, didn’t suit me so made the change.
Good luck and did your doc suggest starting on a low dose & very gradually titrating up? This method helps your body adjust as many of us have discovered.
Barb
The name of the drug is tofranil. I am still learning about the drugs. I have always been against drugs but now willing to try anything so I can have my life back. I am happy to hear stories like yours And see people go back to living life normally. I never even knew this existed as I never had actual headaches with my vertigo symptoms. Do all of you get the headaches? I just want to make sure I’m not the only one that actually didn’t get headaches.
Hi Mary,
The most common meds in the US that are from the tricyclic group of antidepressants are Amitriptyine and Nortriptyline. (actually, Nort is the “active metabolite” of Ami, and therefore has less side effects…in theory). They are some of the first meds to be used for migraine, and other chronic pain maladies.
In any case, nausea is usually common in any drug that increases serotonin…Effexor, the SSRI group (prozac, paxil, celexa etc…) and the Tricylcics all increase serotonin…You can start with a lower dose, make sure you take with food, and/or maybe take at night so you sleep thorugh the nausea? I think most people get used to it as it subsides over time.
Good luck to you!
Kelley
I have had some success with Amitriptyline. While I am on a cocktail mix, I take 125mg of Ami. nightly. This has provided me the greatest amount of relief, however, I am not 100%.
Sarah
I just finished my first week on 25mg every day. Today I have to up my dose to 50 mg, than next week it will be 75mg. I am already noticing some slight improvements. Yesterday, I was actually in Walmart and a few other stores and didn’t feel like I was going to pass out. Stores have been almost impossible for me to walk in. They really increase my symptoms. It was a slight improvement so I’m very happy with that.
The first night I took Tofranil, I did get really nauseous and had a really bad headache for the next 24 hours but every day the nausea seems to improve. I also have been feeling a lot of ear pressure. I am really crossing my fingers that when I up my dose tonight, I won’t throw up or have any other side affects. Are you just starting it or have you been on it for awhile? We’re you just diagnosed? What are your symptoms like? I have vertigo symptoms 24/7, can’t drive or do much and am really praying that this or some drug will work like they have for others. I would love to hear your story.
Its not very exiting (my story) but I guess I should be fortunate I don’t suffer as bad as some on here. It started last June with vertigo/dizzyness/lightheadedness as you describe, I dont get headache with this BTW. Anyway I was fortunate enough to find this forum and get a fairly quick (1year) diag by a good specialist, that was after a little bit of going around the houses with GPs and diags of BPPV, Labrythitus, anxiety etc.
I was put on the MAV diet with some improvement but only about 50 percent with days of total relapse so we thought it was time to try medication. I didn’t go with nortriptyline which is normally the first line of defence for MAVers or amitriptyline as I have tried both of these before for depression and sleep before this MAV started. Amitriptyline gave me too many cognitive effects and chest pains (scary) and the Nort made me angry/on edge/irritable even at low doses. I have been on and off SSRis for 10 years by the way and I don’t tolerate those very well either. So we decided to try one last TCA and I have a script for imiprimine but im too scared to try it ! I will, just need to time it right. Yes stores and fluorescent lights are not good for me. Have you tried the diet ?
No I have not tried the diet. I only learned about this a week ago when I was diagnosed. Before that I didn’t even know MAV existed. I was just suffering without any help. Just countless doctors giving me that perplexed look. I have read about food triggers but not sure about a diet. Where can I find out about that? BTW, I don’t have headaches at all. That is why I am so perplexed. I just don’t get it. I started my double dose the other day of the Imipramine and thankfully no side affects. I don’t tolerate drugs that well either but this one seems ok now that I’m starting to adjust. Well see what happens when I go up to the full dose. One thing I have noticed is my anxiety is a bit better.
Do you have this condition 24/7? Are you able to work or drive? Just curious.
Well if you have any info on the diet, let me know. Also let me know how the imipramine works once you start it.