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Constant Vertigo for 5 years

Posted , 11 users are following.

angelique14667
angelique14667

I have been plagued by constant vertigo for the last 5 years. It started one morning I stood up diagonally into my closet doors and took them out. Over the next 6 months I was unable to keep anything down and was constantly is spinning. I had light sensitivity and nausea plaguing me. My doctor at the time kept me on the sea sickness patch thats you are only supposed to be on 2 or 3 days at a time. I was on it for 6 months and developed a highly allergic reaction every time the adhesive was put near my ear because of the extended use. I found another doctor and he prescribed me amitriptyline and it has been a miracle worker. I no longer have to wear the sea sickness patches and while I was at 250 milligrams to combat the inability to keep anything down and the constant spinning I am tired of being dependent on the drug. I am weaning myself down and AM at 50 milligrams as of right now however I would like to be off of it completely. He diagnosed me with migraine induced vertigo where even though I don't always have a migraine when I am nauseous. Because of the amitriptyline I only have one or two bad days a month of vertigo which takes me into bed. My question is if anybody else has been misdiagnosed with my condition. I've been roll out for Menieres disease and any other inner ear problems. I've had multiple cats cans and MRI is to ensure that's not a brain aneurysm or tumor. I've looked online everywhere for the last five years to no avail and am hoping someone has similar experience with vertigo treatment with amitriptyline although it is usually prescribed to someone with severe depression. We have notice that it might be the chemistry in my brain that it might be causing the issue however I am hesitant on completely stopping the amitriptyline to only regrests where I was 5 years ago.

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  • h1954
    h1954 angelique14667

    Posted

    Hi, I was told I had migraine associated vertigo 3 years ago, when all other possible reasons for my symptoms were ruled out, and was put on low dose of amitriptyline as migraine prevention. My symptoms certainly lessened but I don't know if that was the medication or just spontaneous improvement. I stopped the Ami and for 4 years rarely had a problem. But at the end of May the vertigo started again and back on Ami again, waiting to do the rounds of specialists again. I think when you do stop Ami you have to wean off gradually. Good luck
  • jason61983
    jason61983 angelique14667

    Posted

    Hi. I have also been suffering similar symptoms for 1.5 years now. I told the neuro-otologist that I have read that many people have been diagnosed with mav, silent migraine or vestibular migraine. Many months ago he offered me a trial of antidepressants but I said I would have a think and get back to him. I think he offered me amitriptyline or maybe sertraline. I have another appointment with him soon. May I ask what dosage of amitriptyline you are on now ? Did you start off on a lower dosage ? 

    I am very glad you have found some relief after many years of suffering and hope things continue to improve for you.

    Best wishes

    Jason

     

    • angelique14667
      angelique14667 jason61983

      Posted

      Hello, I started off with 25mg but I am vertigo was so severe that I was quickly up to 250mg and stayed there for five years. I recommend staying with a smaller dose because you do build up a resistance to it. And thank you, that information really does help.

      Thank you, Angelique

    • jason61983
      jason61983 angelique14667

      Posted

      Thanks for the info Angelique. I will get on to the nero-otolist when I see him in setpember.

      Best wishes, Jason

  • pauline59158
    pauline59158 angelique14667

    Posted

    If you are taking amitriptyline you should only come off them under medical supervision. They are quite a serious drug and must be managed carefully.

    Also, if the amitriptyline is working, why come off it at all. I would give anything if my dr gave me something that actually works.

    and  Having been kept up all night as the bed and the room span round me, I have yet another appointment with my Dr this evening.

    I have also been ruled out for Menieres and ear problems, but the spinning goes on, along with the tinnitus. (They know what it isn't but NOT WHAT IT IS)

    Pauline

     

    • jason61983
      jason61983 pauline59158

      Posted

      I too am willing to take anything for the long term if it helps me. I am already on lots of medication that I am not completely happy taking but I know I benefit from so I have accepted the negatives in light of the positives of medication.

      I hope you see some improvement soon. Sorry to hear you have had a bad night.

      I too have a form of tinnitus. Hyperacusis tinnitus. Had a few months a lot better but past week I have super sensitive hearing and earache in both ears. I havn't mentioned this to my GP as I know there is nothing they can do and it improved for a few months so I though it was going away and becoming easier to live with. It's when all symptoms hit me at once that I can't cope. I am sure you know the feeling I am sorry to say.

       

    • jason61983
      jason61983 pauline59158

      Posted

      My most recent diagnosis by the neuro-otologist was uncompensated vestibular dysfunction. How vague is that. When I saw the diagnosis in print I had to laugh. A stranger on the street could have deduced that lol.
    • angelique14667
      angelique14667 pauline59158

      Posted

      Hello,

      I too have those symptoms but I'm tired of being subject to the side effects.

      I live in the United States and when I travel I have to take my medication with me everywhere and I would like to be dependent on one less thing as we are moving to Italy. I have cleaned myself off to 25 milligrams but am wondering if anyone else has attempted to do the same.

    • pauline59158
      pauline59158 jason61983

      Posted

      Hello Jason, (this is my 3rd attempt at replying, I keep being dumped from the system. How annoying is that!!)

      I saw a Dr last evening, after a sleepless night and numerous dizzy spells during the day. I wanted to ask if I could increase the betahistine, as it gives me some relief.

      She asked me to carry out some coordination exercises. Touch my nose/her hand  Repeat several times. Walk heel to Toe across the room. Didn't get very far before the dizzies kicked in! She then took my Blood Pressure!!!  Surprise it was really high (220/114) From then on she didn't want to discuss the Vertigo. The BP needed to be controlled first. I tried to explain the exercises probably caused the high reading. Earlier in the day I had taken it and the reading was fairly normal. 

      She gave me prescriptions for an extra BP drug, one that I had previously taken and suffered a reaction! Nevertheless, she wanted me to take it!

      She made an appointment for me to see my regular GP this evening.

      Hopefully, I will get more sense out of him!!

      Against advise, I took an extra betahistine, along with an extra BP tablet (one of my current ones) I slept all night and this morning the BP is down 

      So far no Dizzy spell this morning.

      Regards Pauline

    • jason61983
      jason61983 pauline59158

      Posted

      Glad your feeling a little better today Pauline. Hope the GP gets your blood pressure sorted. I don't think the exercises may have made your blood pressure that high but maybe you were anxiuous not feeling well and about the appointment. Be carefull and only take your BP meds as prescribed.

      Hope you have a good evening

      Regards Jason

    • pauline59158
      pauline59158 jason61983

      Posted

      Thank you Jason,

      I went to see my Dr last evening and he has added a tablet to my Betahistine ( Cinnarizine) to be taken at night. My Blood Pressure was a     little better. He wants to add another drug, but has asked for a blood test to check my heart, before prescribing it. 

      I have also been referred for counselling and I await an assessment call tomorrow.

      Hopefully, something will work, watch this space. 

      It's nice to have sympathetic people to "talk" to 

      Thank You, take care Pauline

    • jason61983
      jason61983 pauline59158

      Posted

      Hi Pauline. Good to chat to people who can understand too. I was taking Cinnarizine for 5 months or more. Give it a go. I noticed no difference on it but took it 3 times a day anyway. I dont want to worry you but it is known in these high doses long term to cause parkinsons. A short while back it was on the news about long term use of some antihistmines and Cinnarizine was one of them. I have researched the studies and most of the evidence comes from studies on the elderly taking Cinarizine so I suppose in older age there would be more chance of these poeple getting parkinsons. If it helps you to take it stick with it but try and see if a lower dose will work for you. Many people take cinnarizine when they have a vertigo attack but don't take it everyday. If it helped me feel better I would still be taking it to be honest. Please don't take me as being negative about cinnarizine as many people swear by it and find it helps them with their vertigo. I feel people should be aware of the negatives as well as the positives of medication so that they can make their own mind up. I still have some cinnarizine left and when I am at my worst I take it for a few days as I am desperate for some relief then.

      Counnselling can be great and I have friends who say they wish they went for counseling years ago as they found it helped them so much.

      Glad your BP has improved. 

      Take care, Jason.

       

    • pauline59158
      pauline59158 jason61983

      Posted

      Thanks Jason, I'm only taking 1 cinnarizine tablet at night, too early to say if it is making a difference.
    • jason61983
      jason61983 pauline59158

      Posted

      I do hope it works for you and gives you some relief. It is sad I know but I know what it's like to have to put all your hope into taking a pill. Make sure you give it a chance and take it for a few weeks.
    • pauline59158
      pauline59158 jason61983

      Posted

      Hello Jason

      Took the Dr's advice looking up at shelves while shopping and  doing all the things that bring on the dizzies and felt pretty ill by the time I got home. 

      Had a pretty bad night, so won't be doing that again, it really isn't worth it.

      Take care

      Pauline

       

    • h1954
      h1954 pauline59158

      Posted

      Hi, Pauline, were you told to take the cinarrizine at night? Reason I ask is that with a half life of 3-4 hours, by the time you get up in the morning there's only going to be about a quarter of it left in your body and it'll be out of your system in 20 hours. Best wishes to you with this horrible illness
    • pauline59158
      pauline59158 h1954

      Posted

      Hello "h"

      I take Betahistine 1 - 3 times a day. The Cinnarizine is a recent addition to get me through the night. So far it's really helping

      Pauline

       

    • h1954
      h1954 pauline59158

      Posted

      Oh, that's good. I'm also on betahistine but fortunately I don't get problems at night, mine are worse in the mornings. All the best, I hope you continue to improve.

      H

    • pauline59158
      pauline59158 h1954

      Posted

      Mine happens when I lay down. I have added an extra pillow, which I don't find very comfortable, but it does appear to be helping, most nights.

      When it does happen, I get up and sit on the settee, all night, as I can't sleep.

      All the best

      Pauline​

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