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Nortriptyline and MAV

Posted , 6 users are following.

patty818
patty818

Hi and Happy New Year 

I have some questions for anyone with MAV/VM.  Ive had this fir 2.5 yrs.  I’ve tried a few meds and the newest is nortriptyline 10mgs fur about 3.5 weeks.  My sensations of this disorder are feeling like I’m floating in a raft on small waves moving up and down, leaning feeling, twirling like I’m on a fair ride about to spin but don’t, when looking at things like standing in my kitchen it looks like the room is moving like when you look at the horizon in a boat, 95% ofvthis I feel when sitting, walking and standing still, when I lay down it’s better.  I feel these sensations through my entire body not just in the head. I also get headaches, neck pain, shoukder right ness all these are better with the propranolol I take twice a day.  First I’m curious if your taking nortriptyline when you first started did your dizziness get worse for a few days or weeks?  How ofwten did you increase the dose until you finally got to the right dose?  With each increase did your sensations intensify?  I feel mine intensified for a week when I started this.  Did you have days here and there when you first started that where in but then it came back on some days?  How long where you on this before you started to see a difference?  I’ve been 3 weeks and have had a few days of better but then get hit again with bad, so I’m wondering does this take 8-12 weeks before it really dies anything?  I don’t know when to increase my doc didn’t explain it all and I’ve never done this before.  Any help would be appreciated 

0 likes, 13 replies

13 Replies

  • Rboro1
    Rboro1 patty818

    Posted

    Hi I have been diagnosed with the same. I’ve been put on amitriptyline and I’m currently on 20mg.   I believe the two drugs are very similar and my symptoms did exactly what you have said.  We’re really bad the first few days then levelled off. I’m still rocking on the boat but like you not too bad when lying down.  
    • patty818
      patty818 Rboro1

      Posted

      Are you still having dizziness? I do but its not everyday, I get a day off then a day on of dizziness it’s strange.  I do notice I have episodes of dizziness for an hour or more then it’s gone for a few hours. It seems to change since starting.  
  • Rboro1
    Rboro1 patty818

    Posted

    I’ve been constantly dizzy (rocking sensation) for the past 5 weeks.  Was only diagnosed with it 3 weeks ago.  I was going to ask how long you have had the rocking sensation for?
    • patty818
      patty818 Rboro1

      Posted

      I had the rocking swaying feeling for about a year when it first started. I’ve had this now for 2 1/2 years and I believe I have it in 2010 two 2012 and then it just went into a remission and he came back with a vengeance in 2015.  My  sensations have changed during the course of this disorder, I’ve had rocking and swaying, Bobby and up-and-down, now I have a feeling like I’m on a raft floating up-and-down waves, leaning to the right feeling, dropping like on an elevator, falling forward and backward feelings along with headaches, neck pain,   Shoulder pain and tightness, nausea, can’t stand loud noises, Smell things that aren’t really there, concentration problems memory problems.
    • biliarydyskines
      biliarydyskines patty818

      Posted

      can you please let me know how old are you? Do you have any other health issues like gastritis,gallbladder related or any indigestion issues?
    • patty818
      patty818 biliarydyskines

      Posted

      I don’t have any stomach or gallbladder issues.  I’m 55 yrs old.  Why do you ask? 
    • biliarydyskines
      biliarydyskines patty818

      Posted

      i'm 36 years old, i started getting dizziness  when i run in t  severe digestion issues. I also have gastritis and gallstones.my b12 was so low. I also did a MRI brain scan to rule out any other issues related to brain. If you are good with digestion and B12, then atleast we can rule out , this is not associated with the digestive issue.

  • kathryn1977
    kathryn1977 patty818

    Posted

    Hi Patty.

    Sorry to hear you so poorly. I just wanted to see if I could help you.

    I have had dizziness for over 2 years. I was first diagnosed with labrynthitis, which went after a week bed bound and so sick. It then came back about a month later and was diagnosed with vertigo, which came and went on and off for months, then ended up in a&e as was so ill with it and it had affected my right side of my body they thought I had had a stroke as couldn't use my right arm or leg. Had MRI scan and CT scan and was put under a neurologist. They diagnosed me with vestibular migraines and put me on prochlorperazine which did absolutely nothing for me at all. I really didn't think they knew what they were talking about as didn't get headaches at all with the dizziness so didn't understand where they were getting migraines from. After carrying on for past few months suffering as nothing is changing and GP said they can't help me anymore so referred me back to an ENT consultant at hospital. And finally after 2 years they have sorted me out. He has put me on amitriptyline which I was worried about taking as are anti depressants and I'm not depressed but I will try anything to stop this dizziness and horrible feeling. OMG these tablets are like a miracle cure. I feel so much better, dizziness has completely gone. I am only on 10mg of these and consultant told me after 3 weeks to go upto 20mg but I'm not going to as there are big side effects to these tablets and I do feel quite tired and they give you a dry mouth and so if at 10mg I am feeling amazing why put it up and have bigger side affects. I am happy as I am. Do you live in the UK? Sorry for the ranting but wanted to give you my story as well. Hope I have helped a little. Xx

    • biliarydyskines
      biliarydyskines kathryn1977

      Posted

      good to hear that medicine is helping you . did they find the root cause for your problems? do you have any other health issues ,especially how is your digestion ?
    • patty818
      patty818 kathryn1977

      Posted

      Hi Kathryn:

      Thank you for sharing your story.  I'm so glad they finally were able to help you and the ami worked.  The nortriptyline is in the same family as the ami,just has less side effects than ami.  I tried ami and it worked the first day but I had bad side effects on the lowest dose, so I had to stop them.  My ent neuro doctor offered the nort to me right away but  the side effects from the ami freaked me out so I didn't try the nort until last month after trying some other meds. I got so fed up the constance of this dizziness that I just didn't care anymore about the side effects.  But after 4 weeks I'm still having dizziness but I feel fine so I guess so far no bad effects from it.  I have talk to a few people on this med and have told me they still had dizziness to until they got to the dose they needed but its a slow process when it comes to increasing doses since most of us with MAV are med sensative.  I'll be seeing my doc next week and most likely will increase.  I live in Florida and some of the meds you have in the UK we don't have here.   

    • kathryn1977
      kathryn1977 biliarydyskines

      Posted

      My neurologist and ENT consultant are adamant i have vestibular migraines.

      And no i have no digestive issues but have read others that suffer with stomach issues so think there is relevance.

      Kath x

    • kathryn1977
      kathryn1977 patty818

      Posted

      Aww I'm sorry to hear that my tablets didn't work for you. I have to say I was really worried about starting taking anti depressants as don't feel depressed but they have literally saved my life. Living with this condition for two years it was making me quite depressed and down so with them stopping my dizziness and also i feel so much better in myself taking them I couldn't be happier. The side effects are nothing compared to what I was suffering with.

      Thank you for listening and I hope you can find resolution and your doctors can help you.

      Kath xx

    • EastCoast
      EastCoast biliarydyskines

      Posted

      Hi, I was originally told I had gallstones. Had digestion issues, etc. then a month later hit with dizziness. Now headaches, neck pain, and dizziness. I’ve had it about a year. Do you want to talk more?
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