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Is it even worth trying Propranlol now?

Posted , 10 users are following.

mudskippa
mudskippa

Hi all, Fellow Dizzy here. I got vertigo a few years ago, which resolved to the point of being able to work again in 4 months - I just gradually upped my activity and I felt pretty normal after 9 months (except for occasional weird tinnitus and ear pressure changes I never had before).

So in October 2014, woah massive vertigo spins again, These lasted a week and since then I have been stuck with constant imbalance, exhaustion, dropping things etc.

In around Jan 2015, my coordintaion was so bad, slurred speech etc, I got an MRI of the cerrbellum, which was clear.

So far, no-one seems to really know what's wrong. One neurologist suggested maybe MAV and put me on Amytriptiline (Elevil) which made me twice as dizzy and sick. It was like 3 weeks of hell. So I had to come off it. Now, they're suggesting I try Propranolol.

Thing is, it's all guesswork. No one has diagnosed me with anything (or no two people say the same thing). I've only had a Calorics test and the hospital that was done at is so poor, they never even gave me the results.

So currently I have 24/7 imbalance - it never goes, though it's worse if I need to concentrate, and walking outside often makes me feel I might keel over. Only occasional 'vertigo spins' now. I wake up every morning with my head feeling like a cannonball and if I do too much (like answering a few emails or trying to read or think lol) then by evening I have crushing headaches.

I can not work. My brain is so screwed I can take 2 hours to write an email sometimes (I used to write for a living). I still stumble with speech. I'm exhuasted all the time, I've tried Cawthorne Cooksey and my other half tries to take me for a walk every couple of days, as far as I can manage (sometimes 5 minutes, sometimes 20, always holding onto his arm).

I feel like I'm trying all I can but the hospitals are so slow and I feel very much alone. I've been sick nearly 10 months this time and been given only 3 appointments (and paid for a private MRI myself).

Is there even any point in trying Propranolol (which I'm told might not even work for 3 months if at all, and if I even did have MAV, which we stil don't know if I have!).

After my last ENT appointment, I asked if they'd refer me to a neuro-otologist as they seem to be much better at understanding balance problems and the ENT consultant said "but you don't need to see a neurologist. Your MRI was ok." They've sent me instead an appointment to see someone in audio-vestibular medicine. In November. Sigh.

I'm so sorry for the rant, but I'm at the end of my tether, and I'm generally a patient, sunny person. But it's getting ridiculous now and I don't know where to turn to.

Many thanks for listening and any advice. (Ps I'm 35, Female)

1 like, 50 replies

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  • laurence76206
    laurence76206 mudskippa

    Posted

    Sorry about my earlier spelling errors I obviously meant to say socialise, concentration, present etc (it;s this illness that affects my thought processes and typing!)
    • mudskippa
      mudskippa laurence76206

      Posted

      I have to re-read every sentence I write at the moment (and I'm still not sure they make sense lol).
    • laurence76206
      laurence76206 mudskippa

      Posted

      I usually do but I still miss stuff.  I also get this tingling/muzzy feeling around my head but have been told this could be anxiety?  I have undergone CBT but only really found the breathing and relaxation exercises helpful that were in the CD I was given.  When you say to do 15 minutes of deep breathing is this the 7/11 or is it a variety.  I find it difficult to do more than 2-3 minutes.  I will need to do some of this prior to the tests later today!

      I will let you know how my balance tests go.

      Best wishes

      Laurence

    • mudskippa
      mudskippa laurence76206

      Posted

      Yep 7/11 is good. But there's all sorts. Square breathing etc. Have a google. Just use whatever works for you, and don't worry if you can't do it for ages. It all helps, and the longer you practice, the better you get.

      The trick is to get the diaphragm involved to let your body know it's time to calm down. I used to practice by putting by hand on my diagphragm so I could make sure I was making the belly move enough. I'll keeep my fingers crossed for your tests (and also my eyes a little this afternoon, lol).

  • jonAustralia
    jonAustralia mudskippa

    Posted

    What to say to make you feel a little better? Do your eyes seem to dart around at times, one especially? Being in day 4 of my second attack in two years I am improving greatly each day but still look like a drunk if I walk outside, so I don't. Two years ago in my first (and last) attack, two specialist Physios in a Geelong Hospital did the eye check/head throw back procedure for about 8 minutes and although for a few minutes afterwards you feel unwell, it did markedly help. I have read that diet can also contribute to OUR condition, have you looked into that? Do you or did you have a virus just before your recent case? Sorry for all of the questions, but knowing what you are going through, I would like to help in any way. Thank God you have an understanding partner. I am a bachelor and it does make matters somewhat worse. Hoping I have caused some glimmer, fond regards, Jon
    • mudskippa
      mudskippa jonAustralia

      Posted

      I love how supportive everyone is on here. Thanks for trying to make me feel better Jon biggrin My eyes seem to bump, you know like when you're a kid learning to read and have to follow your finger along the words, so you don't lose where you were in the line - it's like that!

      My first attack followed a really bad case of sinusitis, but weirdly this one just happened out of nowhere. I didn't even have a cold.

      There are two sides to the supportive partner thing. It is great to have one, but you do have the added burden of the 'guilts' esecially if you've been sick a long time. I keep saying 'sorry' to him because i'm ill and we can't go out much, I can rarely cook for him anymore etc.

      I'm weird like that even though i know it's not my fault I can't do those things, I wish I could and I feel it's not fair on him that his life has also been limited because of my illness. So I need to say sorry every few weeks! 

    • jonAustralia
      jonAustralia mudskippa

      Posted

      Just what you don't need but very understandable how you feel like that, but "in sickness and in health .." love will stop him from feeling that way and given time, I hope that you can both catch up on those missed events. So, I am not addressing the anxiety side as I have been on anti depressants since my wife left 5 years ago and I think that they have stopped me feeling anxious,well actually I know that they have. Perhaps a targeted medication will help as mine is tailor made and I am down to 5 mgs a day of a drug that they use on schizophrenics using 70 mgs a day, so you can see that my dose is a very low dose but works, for me. The eye treatment involves sitting on your bed with your man sitting by your side and from a 15 degree angle pulling your head down onto the pillow swiftly (take it easy) don't want to make matters worse. This hd the affect on me that you would expect, that is woah and my eyes jiggled around like a clowns, but doing it around half a dozen times is actually training your brain to react to sudden movements and, once again in my case, enabled me to look around without feeling dizzy. I'm sure that a better description is provided by Mr Google :-). So:

      1) keep saying sorry of it makes you feel better, but I'm sure he no longer needs to hear it quite so often

      2) Investigate the eyes de-SENTISIZING method on Google

      3) ask your Dr about the tablets that I am on for stress

      Good luck, and certainly know that we share your fears and pain and wish you a speedy recovery.

      Jon

    • mudskippa
      mudskippa jonAustralia

      Posted

      Thanks Jon, Most days I'm not stressed out (thank you Buddhism!) but I'm human too and there are days that get to me. And you, and everyone on this thread has helped cheer me up and on through one of those times.

      By the way do you think going on the Waltzers would help me acheive #2 on your list. Gosh I miss the Waltzers - if you've never had the delight, it's a British fairground round that spins you round in a ridiculously fun way that makes your eyes goggle and your legs all jellylike...but then you want another go straight after wink Much more fun than vertigo for sure (cos the dizziness wears off!)

  • kate47167
    kate47167 mudskippa

    Posted

    Hi re meds my consultant offers

    Propanol he wrote to Mr Dr and suggested I had 24 heart monitor and blood pressure to make sure it will suit me he suggested it as I get racey heart a lot and migraines but guess what Dr wont do it as its all " anxiety" so will have to get it done privately will ask my consultant to refer me.

    I have cipralex for anxiety but only 5mg as it makes my heart race to much

    • mudskippa
      mudskippa kate47167

      Posted

      How ridiculous, A consultant suggested this and the Dr declined?!

      I have had a couple of terrible Drs before (dismisssive, don't care, in their own arrogant world etc).

      After an ENT wrote to my usual Doc and 'strongly recommended' that I see a neurologist, I called the Dr up a couple of weeks later and asked if she'd referred me. She hadn't. I asked her to get the consultant's letter out (which I also had a copy of) and read it again. She was like "Oh, yeah. Maybe I didn't read that bit." and then referred me. Geez! She never would have if I hadn't called!

      But to straight out refuse you, Kate, when a consultant actually laid out instructions to make sure it'llbe a good fit as well, that's so poor!

      I don't blame you for going private. And maybe think about chanign Drs. We have a few at our local practice, and it's a real mixed bag. Luckily, over the past 6 months, I've found two very nice ones who are sympathetic, do what they say they will, and actually participate in proper discussion with you over treatment. Blessings in a long illness like this.

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