Sleep in sitting position

Hi. I’m new to this forum and not sure what I’m doing.
I’m 60years old and have had bad headaches for about 40years. Five years ago I woke up one morning and was so dizzy I couldn’t stand up. I was taken to hospital by ambulance, given some injections and sent home.
I saw several ENT specialists and eventually an audiology physician. I had all sorts of tests :blood tests MRI scan and the caloric ENG tests. I had no reaction whatsoever to the water in the ear test (even at ice cold temperatures) and was told that my vestibular system (on both sides) wasn’t working and would never work again.
I was extremely distressed, cried many times a day and seriously thought I couldn’t go on any longer. Only my lovely husband and family kept me going.
I have been dizzy 24/7for the last five years.i also have neck pain & stiffness, facial pain and a constant headache.
A couple of months ago they redid the water in the ear test and my vestibular system now was working ok. ( they must have done the first test wrong!).
I have now been diagnosed with MAV and am on noretriptyline. I am slightly better but still constantly dizzy.
One thing that puzzles me is that if ever I am falling asleep in a sitting position then just at the point of sleep I am woken by a short but intense attack of spinning vertigo which leaves me very shaky. Is this a common occurrence with MAVers?

It’s a really terrible illness that only if you suffer from it can you truly understand.

My sympathies to all sufferers

Hello Dizzyanne,
Welcome and so glad you have managed to find this forum - you’ll have lots of support here after all your struggles. I was shocked to read that you have been trying to deal with this for five years & told you’d be like it for the rest of your life. Thank goodness you have a loving family to support you!
Now you’ve found our website you’ll be able to access loads of info and have hope again that you’ll find a med to keep the MAV under control.
Unfortunately, your story is not that rare here - many of us have taken years to actually get a diagnosis & eventually start on the trials to find a med that suits. I haven’t experienced the spinning vertigo when sitting but we all have many unusual & wierd symptoms with this condition. For a long time I felt I was constantly falling when I was lying down - pretty scary!
What dose of Nori are you on? Hopefully, your vertigo will stop as you increase your med.

Welcome Anne,

 I just feel so much, for you, and all you have gone through. Finally, you had the right diagnosis and Nortriptyline.  I'm curious what dose they put you on.   I hope that you find some relief soon.  
 I started having vertigo attacks when I was about 60yrs. old.  Serious ones where I was thrown to the floor and vommited.  In between attacks, I got migraine headaches and I took Imetrex which made the headache go away. This went on for a few years, until they got more frequent and I went to a specialist and got my MAV diagnosis.  I was put on Verapamil and still am on it, Nortriptyline and Paxil.  All three.  I am about 80 % better now, BUT, the drugs have side effects that are wearing hard on me.  The biggest one is constipation.  I let it get out of control, and now I am really in a bad place today and thinking of going to the emergency room, if things don't get better tonight or tomorrow.  So, word of advice, keep psyllium husk or Miralax around and walk alot, if you are on these strong drugs.  Also, next side effect is weight gain.  I have gained about 15 lbs in I started all this last Nov. I think my appetite is huge, and they say it's from the drugs, but don't know for sure.  I need to watch everything I eat and walk alot, which I haven't been doing faithfully. Sometimes, the side effects can cause more grief than the MAV, once it gets under control, which mine is, mostly. 
 I was told that it's rare for ladies our age to get this.  Most of the gals here on the forum are just younguns.  lol  So, I was surprised when you said you were in your 60's.  I'm 67 now.  I never had a headache all my life, and no vertigo, but I was prone to getting sea sick on planes and boats.  
 Well, Anne, just wanted to say hello, and welcome. Look for the best specialist you can find, not just any ordinary Dr, as most of them don't really "believe" in MAV.  I found that hard to believe, but it's what I have heard and read here on the forum. Good luck and let us know how you are doing with the Nortriptyline.  I started out very low  5mg. as I am med. sensitive, and am now on 7.5mg ( I had the pills made at a compounding pharmacy). What does are you on.   Best wishes,   Meredith

Hi Meredith, thanks so much for your reply and advice.
Hope your side effects (constipation) are sorted out and you are feeling much better.
I am on 40mg of nortriptyline and have already started to put a bit of weight on. Can’t win can you?
Glad to hear you’re 80% better . Hope you continue to improve.
Best wishes

Hi Barb, thanks for your reply and concern.
It’s really lovely to have concern &understanding from other members of the forum.
Am on 40mg. of Nori and ,at the minute, side effects not too bad ,(other than weight gain)
Is your MAV under control?
Best wishes

Hi Anne
I’m reluctant to say my MAV is ‘under control’ but admit that I can get on with my life which I’m very thankful for. Mav hit in Nov 2010 - took me a year to get proper help, understanding & treatment from Dr Granot in Sydney. I found this forum in May 2010 & asked my local doc (who had no idea what was causing my dizziness, etc.) to trial a few meds. Nortrip was the only one that helped a bit. I got up to 50mg but had to stop because of s/e (racing heart) but others here have found it very helpful. BTW I’m 73 yrs old!
Dr Granot put me on Prothiaden (Dothep - another tricyclic) which has helped - I got up to 100mg & then had a relapse (moving house - took months to sell) & pushed the Dothep up to 125mg which, although helping the migraines & balance probs made me ‘zombie like’ & bad constipation! I’m fortunate I can contact Dr Granot by phone/email to get advice which was to reduce the meds back to 100mg. I’ve had a bad fortnight with migraines/balance probs but think things are gradually settling down. It’s a ‘balancing act’ getting the right med at a dose our bodies can cope with! BTW I’m 73 yrs old (migraines most of my life but never dizzy before).

Have you considered reducing the Verapamil and seeing whether that helps the constipation (you could always go back up if it doesn’t make a difference). I take Osmalax (similar to Miralax) but need to supplement it with S-Pellegrino (magnesium).
So reducing the Dothep & adding the S-Pellegrino has helped me so far.

Thanks for the advice. I could probably reduce Verapamil easily. Dr. Hain once told me that he doesn’t think Verapamil does any good for anyone past 120mg. I don’t know if that’s true or not, as many people are on much high doses and are happy with it. I probably don’t need 180mg. I think I will try your suggestion, Barb.
The drug that is really getting to me, is the Nori. I hate it. Makes me feel like my tummy is distended, swollen, bloated, like the skin might rip, after eating even a small amount. I would swear I have a blockage somewhere, but I read that Nortryptyline can cause those s.e. I also have gained so much weight now. I am titrating off Nori, starting 2.5mg per week. I am on a very low dose , but that drug has really affected me and changed by body shape and my appetite . I need to get off it and find something else that does NOT cause this misery of discomfort in my stomach and weight gain.
Hope you are feeling well, Barb. Thanks again for the suggestion. Meredith

Hi Meredith
Your s/e sound awful - can you get advice from your doc & have a different med ready to try? Some meds you can start while titrating off the nori. Dothep doesn’t have those effects on me at the smaller dose but have an idea that it’s not available in the US. Good luck with your trial.

Hi Anne
Hope nori doesn’t affect you like it has with Meredith - she is on a much smaller dose than you so your body may be able to cope better. It’s such a pain (literally) finding meds to suit but thank goodness there are many to trial so we don’t give up hope.

— Begin quote from “Dizzyanne”

One thing that puzzles me is that if ever I am falling asleep in a sitting position then just at the point of sleep I am woken by a short but intense attack of spinning vertigo which leaves me very shaky. Is this a common occurrence with MAVers?

— End quote

Hi Dizzyanne, I wouldn’t say this happens to me often but I have certainly experienced it from time to time. I’m around your age and I too have woken up at times so dizzy that I couldn’t stand, couldn’t even lift my head off the pillow. And there have been times I have had to sleep sitting upright too. Strange that sometimes I can’t sit up and at others I can’t lie down! That’s MAV - totally irrational and unpredictable. I guess I should be used to it all by now but such episodes can still leave me shaky and anxious. Not to mention the frustration they engender at having to put my life on hold for a while. Ugh!!!

Hope you continue to improve. Best wishes


Thanks Brenda, this MAV business is certainly very debilitating and frustrating.

How long have you been suffering? Is your MAV more or less under control?

I ,honestly, can’t see a time where I won’t be dizzy 24/7. and that is a terrible thought.

best wishes


Hi there Anne, I had my first vertigo attack at 19 years old when I was away at college. I’ve just turned 60, so it’s been a long road! I would say my MAV is more under control now than ever before but it’s always lurking. I’ve just learnt to live with it, using diet and lifestyle measures, not having had much success with meds.

It’s very hard I know to take one day at a time and not wonder what the future holds and if you’ll ever be free of that awful dizzy feeling, it really can get to you. I can only say from my own experience that black days have given way to grey ones and sometimes even to much brighter ones. It’s so up and down and unpredictable but I have learnt to talk myself into being hopeful for better times when I’m having a bad episode by reminding myself that I’ve been stuck there before, totally depressed thinking I’d be in that place forever, but that I came through and I will again. Sometimes I still have trouble believing it but I say it anyway! And I do think it helps. Just my way.

Wishing you better times ahead…


Hi Brenda,

Wow you’ve been dizzy for a long time. ( only 5yrs for me)

You seem to have such a positive outlook . It’s a good philosophy to go one day at a time. I think we can only cope by doing this. Really bad times will always be replaced by not so bad times and we must enjoy our lives despite this MAV thing.
Thanks for your advice. It’s really appreciated!
Take care