Amitriptyline:11 weeks in

Hi everyone
I have worked my way up to 40 mg of amitriptyline over 11 weeks. The first symptoms that improved was the heavy head sensation, cross eyed sensation, inside out head feeling and then the wierd visual distrubances and the visual vertigo started to improve including objects vibrating in my peripheral vision, not being able to watch television or drive. I have been ill for 4.5 years. My initial diagnosis was uncompensated labs, so I did VRT for 18 months and eventually went back to work part-time but when I tried to combine work with exercise and in combination with coming off cipralex (lexapro) my brain went crazy and I developed migraine symptoms and became house bound again at 32 years old. My physio said the crash was not normal and referred me to prof Luxon who did all the test which showed I had MAV not labs. I have a history of severe migraine with aura and not one of the 3 ENTs consultants I saw over 3 years including an audiovestibular consultant asked me if I had a history of migraine. Prof Luxon was furious!!! I have now got my head around the diagnosis thanks to this site and the staff at the LH and B clinic in London. I started seeing improvements after 4/5 weeks and when I reached a dose of 30/40 mg of ami. I am still very sensitive to head and eye movements and have visual vertigo but I seem to be going in the right direction with the help of the drugs. However, unlike lots of you I was told that my visual vertigo and imbalance associated with head movemnts would only improve significantly with VRT. VRT helped me in the past but its positive effects were wiped out by monthly chronic migraine which effected my eyes. I was wondering whether any of you have been told the same thing about VRT. Lots of people seem to have got better without VRT but I know this isn’t possible for me. Also, I was wondering whether other people have experienced an increase in anxiety after increasing the ami dose. I feel great for a few days on the new dose and after 10 or so days I get really bad anxiety apart from that I think it is an amazing drug. I must say this site has been such a huge help. I used to use the dizzy times site and I remember Scott from there. I am the girl in the NHS labs video and now I feel like I fake as it wasnt labs all along!! Tom (the audiologist who gives advice) from dizzytimes even suggested to me 4 years ago that I may have MAV and I was really rude to him!-oh dear!!!

Becks X

Is there anyone else here who has been told VRT is the only way the brain will recalibrate once the drugs have calmed the brain down?

— Begin quote from “Becks”

Is there anyone else here who has been told VRT is the only way the brain will recalibrate once the drugs have calmed the brain down?

— End quote

I was told to do VRT by my ENT doc, but as he wasn’t sure what my diagnosis was, it was more of a “try something, 'cause doing nothing isn’t working”. I’ve been doing them, seeing some improvement, but I’m not sure that I can attribute the improvements to VRT… :? Sometimes I get waaaaay too depressed thinking about all this sh*t!
Cat

Hi Becks,

I’m thinking about all things VRT at the moment and wondering how you got along in this department? I had forgotten this post.

You and me both with the uncompensated labs thing. I thought that for nearly 2 years!

Thanks! :slight_smile:

I was doing VRT under the nurolgy hospital but im stopping. Done it for 2years but as i keep having the attacks i go back to the beginning after each attack :confused:
I was told that for VRT to be effective u have to get the attacks under control to give your system time to reset …i have severe vertigo every 35 days for 5 days at a time

That was happening to me for a while. VRT was great for a while, then the attacks came back and even got as frequent as one every two days. You have to eliminate the migraines first so you have a stable platform for rehab.

Amitriptyline (only 10mg daily) has more or less eliminated the worst acute attacks and practically all of the visual vertigo. Now I’m back on VRT.

I’m considering upping the dose as discussed with doctor if the worst symptoms return.

I agree with Becks: great drug. Started working for me after only 3 days.

Hi Guys I don’t think VRT is useful because it is a matter of calming down our nerves though medicine or supplements - the nerve firing rate. It’s not the issue of retraining the brain to compensate for some loss really. Just my two cents. Best, Liv

The migraine control definitely is the biggest factor for sure. I’m mainly doing the VRT because its also recommended to help reduce residual dizziness.

Hi
Thanks for all the info.
I tried Amiltriptaline and it worked great for a while then stopped.upped the dose and it just stopped working.
I tried most things …start of another attack today …never fuc*ing ends…trying not to let it depress me again but its very hard
Take care
X

Oh goodness, sorry to hear but don’t give up …how long did it work for sarahat? Did you have some other stress introduced, like returning to work that could explain the attacks returning? Follow up with your neuro and try some other meds if amitriptyline is not working for you.

NB I found increasing my dose of amitriptyline made a bigger improvement to my balance than VRT. That’s not to say VRT isn’t having some benefit also.

Hi
Amiltripaline worked for around a year at 10mg i had one attack in a year which was a massive improvement. Gradually the attacks came back more frequently and more intense worked up to 40mg …tried this for 6months no improvement in attack frequency.
Im not sure if ive got worse as ive got older and more hormones are playing up or what it is :confused:
Ive discovered no connection with stress ,food or eternal factors like work.if im having a attack and don’t sleep its harder to handle ( i turn in my sleep and wake up vomiting and spinning , keeps me awake :confused:)
Im making a huge effort to get out more when im well and live my life. I was becoming a bit too anxious about going anywhere (but work) in case i got ill .
I have decided that i cant control the physical symptoms but do have power over what it does to me mentally. .I’m working.on that. …
Taking high dose vit b for 4 months as suggested by the nurology hospital …watch this space!
Take care xx

Gosh … sounds really trying … absolutely the best of luck with the trial and post back on progress!

Trying is a good expression for MAV
Trying this drug
Trying that diet
Trying VRT
Trying not to lose hope
Trying not to get depressed

That’s been me for 14 years !
Oestrogen cream after the B2 trail yippee!

1 Like

I hear you!

hahaha yes I totally empathize. MAV is so messed up - but it makes every day more ‘interesting’ I suppose!!

Hi Scott,

Sorry to hijack an old thread, but I’m just curious.

Do you think it is possible to have both labs and MAV?
Or do you think that labs symptoms are actually MAV symptoms?

I have had disequilibrium, unilateral hearing loss and tinnitus for 10 years, then 12 months ago MAV hit, but both ‘uncompensated labs’ and migraines were diagnosed in the same consultation a month ago.

VEMP, VNG, VHIT all showed damage to left inner ear. MRI showed enhancement too.
It’s only when I mentioned other issues like sound and motion sensitivities that the neurologist said Migraines could be the main issue for me.

He told me to do VRT, which was very difficult to do with MAV symptoms, and seems to make things worse. I have since stopped.

I’ve just started on Topamax and it’s wreaking havoc on everything (to be expected), but I think my psychiatrist wants to add in Amitriptyline this week, so maybe as a vestibular suppressant that could help the ‘labs’ brain adjust to the ‘migraine’ meds.

Or would the migraine mechanism always struggle, because the labs is always under some stress, and VRT would be needed to improve this?

Just my thoughts

Hi all,
I’ve just started on amitriptyline, after six years of being told there was nothing wrong with my ears, other than a sudden hearing loss and vrt was the best method to rehabilitate my brain as it was confused, which was why I was dizzy, sick, confused and falling over lots.
VRT didn’t help and so far the amitriptyline has had little effect, other than I sleep better.
Just wondering if people found VRT helped after they’d got to a dose of amitriptyline which helped there symptoms or not? I’m at 30mg at present, but moving up to 40mg next week. Luckily, other than a dry mouth I’ve had none of the side effects others suffer from.
Kate

Amitriptyline helped me a lot more than VRT did. I’ve also found time to be a healer, I’m far from well again, but definitely improving if at a glacial pace. My therapeutic optimal level is 20mg - 30mg makes me more dizzy, not less. I’m able to use the computer all day now and watch TV with no issues. Good luck with your experience of this med. btw, I no longer get dry mouth.

Thanks for that. I’m really hoping it makes a change in the way I feel

Hi everyone,

After a very long diagnosis period (10 months) I was finally diagnosed with MAV from a top neurologist. He put me on 10mg of Amitriptyline to start with, I had no results. Then I upped it too 25mg … that did nothing. After 6 months I went up to 50mg and finally I saw results from my migraines and vertigo. I also started 180mg of Verapamil which has boosted my results even more and I’m now about 90% better. For a long period I was getting 2 migraines a day with vertigo symptoms. Head numbness, difficulty walking, shuddering eyesight at times - it was a real nasty period of my life.
But rest assured, the drugs do work and do help stop the migraines eventually, you just have to find the right mixture of medication!

Thanks

P.S: VRT does not work, do not do it. MAV is caused by migraine only, VRT will make it worse.

1 Like