The Vestibular Migraine Community
Please read our welcome post and user support wiki!

My journey


#21

sounds like a good theory to me but its still a pain in the jacksy :grinning: I can remember being in Ibiza having only 16hrs sleep the whole week and dancing and drinking the night away (the drinking was constant a full 7 days) and MAV never played up once my MAV seems to play up when I start chilling out and not when im being MAV unfriendly (not like ive ever really been MAV friendly because I hate it )


#22

Well think how lucky you were. In fact knowing what you’ve been through you must have felt the luckiest, happiest person in the room. Which must have made the experience even more fantastic.


#23

Hi everyone,are you still taking the Ami?
I have depression/anxiety and verstibular migraines. I have tried effexor but I had constant headaches terrible withdrawal and just now one day on 6mg of amitriptyline and I can’t stay awake today and complete mess emotionally so I’m having a massive panic attack about continuing. Did you get this with Ami? Did it go away or stay? I’ve also read I would need something like 50mg to help with depression so confused why dr would think such a low dose would do anything. Confused about all these drugs and dr is not concerned about side effects.


#24

Don’t worry, drowsiness decreases the longer you are on it.

Yes I’m still on it at only 20mg daily and doing quite well. Have almost no anxiety now.

It’s basically eliminated the migraines and I’m at a point where I have almost no imbalance. I still get the occasional light vertigo in mornings when in bed but not significant.

6mg is a tiny dose, relax. My therapist calls my 20mg dose level ‘homeopathic’ :joy:

MAV doses tend to be 20-30mg but can be more based on need. So presumably he will have you titrating up? You usually up the dose once a month until you get to the desired level. You may not need 50mg. See how you go. I started from 10mg with no issue except the usual side effects like dry mouth and the odd vivid dream. Yes 6mg seems very cautious. The dry mouth goes away.

Another way of countering the depression is to see a psychotherapist who is an expert in dealing with chronic, preferably vestibular, patients. I found it very effective.

Try to be optimistic that you will find a med that will help you. Also the underlying condition can improve. It will get better!

Best of luck,

James


#25

Hi James thank you so much for your response I really appreciate it. Did you get the drowsiness at the start as well as the dry mouth?
I’m so glad I found this support I feel like no one really understands just how debilitating these episodes can be.
That’s great news i was given 25mg tablets of Ami and told to take half but I guess after the bad withdrawal from the effexor I am just so anxious about it and then after such a tiny dose I was sooo drowsy today. I got really stressed which of course doesn’t help my head (such an awful cycle). Anyway Your response has given me the courage to keep trying the Ami and then maybe after a few days I’ll try just half a tablet which would be 12.5mg however if I tolerate that I might get the 10mg tablets instead which would be better to go up with I think if I can.
Who knows I just want to feel well and enjoy my life.

I’ve never heard of a psychotherapist I have seen a psychologist but they don’t prescribe medication and keep sending me back to the Gp and I saw a neautologist who diagnosed me and put me on topamax then which worked great for my head but I had the trouble finding words numbness and tingling in my feet. I would have stayed on that had i not wanted to extend my family. Im really hoping this is the one that helps thank you for your support
Kristy


#26

Hi Kirsty,

I’m told Amitriptyline is a much easier drug all round to any of the SSRI’s especially with regards to withdrawal.
Yes drowsiness decreases a lot once you are used to it. I take it at 8:30pm each night but some take it earlier in the evening depending on how early they need to get up. Please don’t drive in the evening after you take it though.

You may find success with the drug and that may help in itself to help calm your anxiety. With calming you may find the depression improves too.

This drug has an amazing long track record so be positive.

Yes maybe 10mg pills could be better to begin with at least. Many find optimal relief at 20mg. This is usually a ‘window’ so there is often an effective maximum. I found a lot more relief at 20mg than 10mg so do try to titrate up.
Nowadays the only annoying side effect is constipation. Just make sure you have a healthy fruit and veg heavy diet.

Best of luck and keep us posted!

James


#27

Hi James
Well that’s good news I will look into getting the 10mg ones but until i get in to the dr might have to keep breaking these ones but will definitely look at trying to get to about 20mg. How long do you think you should try a med before knowing if it’s helping or not?
I think I might be taking it too late too as I have early risers so I might bring it forward to about 8:30pm and see if that helps, I’m home with the kids in bed so no driving but thanks for the heads up. Thank you again will definately keep you posted.
Kristy [quote=“turnitaround, post:26, topic:12548, full:true”]
Hi Kirsty,

I’m told Amitriptyline is a much easier drug all round to any of the SSRI’s especially with regards to withdrawal.
Yes drowsiness decreases a lot once you are used to it. I take it at 8:30pm each night but some take it earlier in the evening depending on how early they need to get up. Please don’t drive in the evening after you take it though.

You may find success with the drug and that may help in itself to help calm your anxiety. With calming you may find the depression improves too.

This drug has an amazing long track record so be positive.

Yes maybe 10mg pills could be better to begin with at least. Many find optimal relief at 20mg. This is usually a ‘window’ so there is often an effective maximum. I found a lot more relief at 20mg than 10mg so do try to titrate up.
Nowadays the only annoying side effect is constipation. Just make sure you have a healthy fruit and veg heavy diet.

Best of luck and keep us posted!

James
[/quote]


#28

You need to get up to a meaningful dose before you quit it. I think with Ami that’s 10mg or more. The slower you titrate up the longer that will take you. I started on 10mg and 1 month later I upped to 20mg at which I remain. Simple. I saw benefits within a week of taking it.


#29

Ok that makes sense do you think half a tablet being 12.5mg would be ok or is that small a difference from 10 too much? I was thinking of trying that tonight for a few weeks Then go back to dr to to get the 10mg so I can take 2 to get to the 20 stage does that sound like how I should do it or would you suggest getting the 10 straight away instead. I appreciate your help
Thank you
Kristy


#30

That would be fine. Don’t get spooked by any side effects. They mostly wear off


#31

Thank you so much, I feel more confident to keep going and give it a good go :blush:


#32

Hi James
I have question about Tinnitus and ear pain. Did it improve after you started to use Ami? My worse symptoms are Tinnitus, ear pain and fullness, I got much better with dizziness and visual sencetivity after using 10 mg of Noretriptiline, but Tinnitus still the same. Sometimes I feel like my jaw getting swallow and I feed ear and jaw pain


#33

No improvement to tinnitus in short term. General improvement over time but suspect that’s habituation and a slight lessening of the condition itself (eg no longer get a huge increase in tinnitus when bending down or over). Pulsatile tinnitus is much less bad but still happens occasionally. In any case tinnitus is overall significantly more tolerable but in no way fully better and still triggers anxiety from time to time. It’s slipped more into the background but I still get bouts when it dominates my attention and I get concerned with it. It’s often worse for a while after meals but not always. I still get increased tinnitus often when crunching my food. My neurologist says many patients find the tinnitus disappears eventually. Bring that on!

Ear pain goes in phases for me. Currently I have virtually none. I can’t recall any fullness feelings. If I had it was a long time ago. I still have slightly dulled hearing though in affected ear. That’s been pretty much constant and I’ve never had a big drops nor a return to normality.

Jaw: I developed TMJ about a year ago. Perhaps stress triggered or related who knows. That is MUCH better these days but I still get the odd jaw click. No jaw pain anymore.

Weirdly it’s balance that has been showing a positive trend lately. I’ve had some really good weeks recently with the odd relapse but those have been less bad than before. Yesterday for example: by lunchtime I felt virtually normal and went for a long walk with zero issues: was very comfortable walking.

Vertigo is also far less pronounced. No major attacks since December and lesser mini spins. I don’t bother to double pillow anymore, haven’t for a while. The condition still wakes me up sometimes but I usually get a good sleep these days.

It’s very important to find a good distraction. Some work or hobby. Good book or video game.

Stick with the Nort now that you are on it. It’s also got a great rep for this and as you know is a very similar drug. I have no plans to change mine for the foreseeable future. I’m still at 20mg nightly. I eat everything and drink coffee (max two a day). I still very rarely have alcohol.


#34

Thank you so much for your detailed response. I dedided as well to increase Nort to 20 mg. Before I was trying muscle relaxant because of really bad spasm of my neck and shoulder muscle at affected side ( actually I got Tinnitus and Hyperacusis when my neck muscles contracted due to non stop dizziness) Ear pain get little bit better but I was so lethargic on this “relaxing” medicine that could hardly move. I was like zombie not able to do a thing. But for tinnitus good blood dirculstion is very important so I stopped using muscle relaxant and instead trying to do relaxation exersises instead. I also have this condition almost 2 years but still not diagnosed as VM or CSD, actually for almost a year my condition was diagnosed as labirintitus.
I really hope that I will be better on 20 mg of Nort and cross my fingers that my ear pain and Bad Guys Tinnitus and Hyperacusis says buy forever:)
thank you again and have a great spring day.
Galyna


#35

All these symptoms are horrible. If your experience of Nort is like mine the neck will relax because it helps brain balance use of ears and eyes. Too much dependence on eyes causes the neck stiffness.

Good luck and keep us posted Galyna!

James


#36

I’ve been taking amitriptyline for a good few days now… I’m probably being very impatient, but how long does it take until I start to feel some of the positive effects of this med?!


#37

Hey Zoe, I noticed a difference almost immediately - about 4 days!

The thing that it did for me was it seems to disconnect the ear and the eye - I noticed much less eye strain at the computer and was able to use it for far longer … also felt less dizzy in general … this effect was even more helpful once I’d got to 20mg. At 30mg I got more dizzy, so have stayed at 20mg since. I still get some bad breakthrough symptoms occasionally, mostly imbalance, nausea and I still get infrequent vertigo attacks and some fairly regular ‘mini sways’ when sat, but overall its had a hugely beneficial impact.


#38

Thank you! Hoping and praying that I start to feel better soon!


#39

Zoe, you will absolutely find something that will make you feel better. Ami is one of the better drugs if you can tolerate it. It won’t cure you but you will function again!


#40

Thanks a lot. I as m on 20 mg now, it’s already 10 days, but still almost every day u have side face numbness, ear ache , sometimes really bad , neck pain. This morning I woke up almost normal after s good sleep, but in couple hours - numbness, pain, hyperacusis. I read on this forum that got done people it help to take smaller dose to make symptoms go away ( if lucky) and then come back. What do you think? So SD I got me a 0,5 of clonazepam is working sometimes. My neurologist ( by the way he think I have anxiety and depression but not MAV ) think it’s not good idea because forming a habit but I decided to do what my body tells me, at least with one dose of clonazepam I can function somehow. Also went to osteopath, she found Two shifted vertebra, lobe pressure, a lot of neck issues. Try to figure :frowning:
Thanks
And have s good Easter