Vestibular Therapy -- Should I Keep This Up?!

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Hi -

I began demonstrating symptoms of a vestibular disorder about 3 years ago. After months of no answers and progressively worsening symptoms, I found an ENT who pointed me to a vestibular rehab therapist. After weeks of VRT, I finally began to feel normal again. From then until now, I have had bouts of symptoms (usually triggered by exhaustion/stress), but have been able to sleep off these symptoms within 2/3 days. About a week ago, I began to have a serious flare up of symptoms - and this time I can tell that I will not be able to sleep these off. Here's a general timeline and list of my symptoms:

- At first, I started to feel like I was on a magic carpet ride whenever I closed my eyes.

- Around this time, I began feeling like my upper body was being gently pushed forward by a wave. 

- After 3 days of these symptoms, I saw my therapist. She gave me exercises. For the past couple mornings, I have woken up feeling a little better and then getting worse and worse as the week progresses

- Today, I had the terribly familiar feeling of being pulled down to the ground by my lower back. It's really a horrible feeling.

I know that for many of us, VRT makes symptoms worse before they get better. My therapist is away on vacation for the next week, and I'm wondering if I should continue with the exercises she gave me. I just really really don't want them to get worse. Have any of you experienced a similar progression of symptoms? Would you keep up your therapy if your symptoms continued to get so much worse? I don't want to OVER over compensate. Any advice would be MUCH appreciated. It's hard to stay positive with vestibular issues, to say the least.

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  • Posted

    I should add that sometimes it feels like I'm being pulled in different directions, sometimes up and sometimes to the side.

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  • Posted

    Hi Olivia, how we suffer?

    After many posts on this site, I now live with symptoms similar to yours but just mainly unable to walk in a straight line, occasional swooning (especially when my girlfriend walks by) and stress and exhaustion as daily companions; but I am much better than I was over two years ago. Initial bout some 18 months ago, completely cured itself after 3 months. Back again Last June 2015, and returned with a vengeance back to my description above. I have some meaningful steps to improve and walk daily up Hills for around 10 - 18 kilometres, which definitely helps but a little dangerous on the Hills due to close proximity traffic. My firm belief is that most of us start with some form of virus, infection or just flu like symptoms. This I have studied ad nauseum, but may now have the possibility of a (dare I say it?) CURE. I shall know the results by September and am working with a highly and respected Queensland Pharmacist who took a seperate interest in the cause many years ago. My Pharmacist, who is in his forties, owns and runs several brand name normal Pharmacies in Queensland and New South Wales and also has a qualification in what they call Compound Prescriptions. No more until I start as a receiver of this compound which is designed to completely rid my body of all virus/viral activity; I shall post my results when I get back from a holiday month in Malaysia pursuing my love of long distance running. Til then, keep exercising Olivia, I don't know about your specific regime, but exercise in general, reduce all salt intake and know that the symptoms will reduce. Big hugs as they don't hurt either, Jonathon

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    • Posted

      Hi Jonathan,

      I'm really interested in your post...I live in northern NSW-

      i struggle everyday - I believe excercising is the only way out and pushing forward. Swimming and water aerobics I find give me the most relief as well as yoga. I've done lots of VRT - I can't say if it was the help that got me walking straight most of the time. My problem isn't walking it's the out of body, disconnected, rocking, etc. I'm interested if your compound chemist does come up with help. 

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  • Posted

    Any hearing issues? Tinnitus or reduced hearing? I am asking regarding vestibular migraine or even atypical menieres.

    I agree with other poster. Reduce sodium, and look up migraine diet. I've eliminated caffeine, red wine, all processed prepackaged food, citrus, nuts, aged cheese, soy, and chocolate. I felt this way, but I'm better now. I still have bad days, especially if I've cheated on diet or not slept well.

    Research MAV on Internet to see if it fits. Especially if you have a personal or family history of migraine.

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    • Posted

      Hi DizzyLizzy,

      So sodium is a big contributer to the symptoms? I've been having vestibular imbalance too. I dont consume a lot of sodiun rich foods but occasionally maybe I'll eat some salted nuts. Maybe this explains why it flared up last week ( I was snacking on salted peanuts at work a lot). Do you find there any foods that help it as well?

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    • Posted

      Kyle,

      Sodium CAN be a problem if the inner ear is involved- hydrops, meniere's, atypical meniere's.  For MAV or migraine vertigo, I have not seen salt recommended to be avoided, just the typical migraine diet I've read online, which can be very restrictive.  Many of the migraine dietary triggers are also no-no's for inner ear/meniere's as well- like caffeine, preservatives, msg, and for some, alcohol.

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    • Posted

      I haven't found foods that "help", but avoiding the "bad" foods help.  I definitely have migraine and some degree of migraine related dizziness, but I also MAY have atypical Meniere's or cochlear hydrops. Limiting migraine triggers that I can helps, as does sodium in my case.  It really depends on what is the source of your dizziness.  You need a firm diagnosis first.

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    • Posted

      Hi DizzyLizzy,

      I was initially diagnosed with hydrops out on a low sodium duet and diuretic (tried 2 different kinds) for 5 months but it didn't help my main and basically only complaint; wooziness "dizziness" (no spinning) when I move like walking, working in the kitchen, doing house chores, and at work, etc. although I've gotten used to the grocery stores I think by sheer habituation! Need to get food, lol, I have no hearing loss or major tinnitus or eat fullness. Do you have eat fullness, hearing loss, loud roaring tinnitus? Are you taking a diuretic?

      My doctor now thinks it's migraines with a dizzy and anxiety component. I should preface, I've had very fast vertigo spinning spells before that lasted anywhere from 10-30 minutes?? Not sure how long exactly. I think I've hit anxiety since I've felt this way fur almost a year.

      I've had two Ecog tests to check fur inner ear fluid and the first one was abnormal so hence the initial hydrops disgnosus. I was having a hard the believing it plus the Ecog tracings were awful I have no idea how the audiologist coukd of read it objectively. So three months later I requested another one an it some out normal and the tracings were text book.

      So needkess to say I feel ice wasted time getting the proper treatment sad

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    • Posted

      i was diagnosed with migraine with vertigo, which I believe was an accurate diagnosis.  I had one sided facial pain/pressure, tearing of the eye and clogged nose (like a cluster headache, without the intense pain) and constant tinnitus in left ear (same side as headache)- these were attacks, not constant, then vertigo developed.  I was treated with Propranolol as a migraine preventative and got better.

      Then 6mos later, I had a profound sudden sensoneural hearing loss that returned in 72hrs with high dose prednisone.  No vertigo at that time.  VNG was normal except for some vague central findings.  TWO mris are clear.  I then would get dizzy attacks with no face/head pain, and loud high pitch tinnitus (it increases).  Triggers are similar to migraine- weather, foods.  I did try the diuretics, but didn't like them, so i basically went low sodium.  I am doing pretty good except in the rainy season and when I cheat on diet.  So that is why the MAYBE atypical meniere's diagnosis.  I am to return to ENT at Stanford if i start getting the major vertigo, and they will inject my ear with steroids.

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  • Posted

    hi Olivia 

    Yes, it's hard to stay positive!

    Now 2 years 24/7 and my only relief is sleeping.

    My thoughts are the more positive we can be the better life we can have.

    i know I'm not getting out of my situation. (I had a surgery go wrong.)

    with 100% vestibular loss and deaf on one side. I have VM and MdDS 

    I'm currently travelling around Europe . It's soooo difficult but I want my life back. I've had to spend a lot of time in hotel rooms but - there are moments where I can go out - I grab those moments and smile. - I have to admit I do have a very supportive husband.

    It has taken until now to be positive, I cried for the first 6 months- unable to do anything- the crying became less and less - as acceptance starts to happen.

    When I'm in a difficult situation (walking down a busy street) I isolate myself into a imaginary bubble, like no one can enter my space, this helps me to handle the world. Sounds crazy I know but I couldn't have believed anybody could have to live like this. 

     

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  • Posted

    I have had issues very much like yours.  I feel fine, then the bouncing and dipping and dizziness come back, and it feels like I have lost weeks of progress.  This frequently happens when my therapist adds new exercises or changes how I do them. It seems like my body wants to fight me when I make any progress.  When my symptoms get worse, my therapist has me stop for 1-2 days, then start back up with my exercises, but at a slower pace and shorter time, then gradually increase the exercises. She said my symptoms should not worsen for more than 15 minutes, and if they do get worse I need to slow down my exercises. I sometimes want to quit, but my therapist keeps saying if I got to a point where I was feeling good, I can get there again.  There is nothing easy about retraining your brain and vestibular system. My therapist said it is usually a six week program, but I am on week 12, and still have a long way to go.  Good luck and don't give up hope that there is a normal life in the future for us!

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  • Posted

    Hi again Olivia, et al. The question I usually ask of all fellow sufferers, is, "did this start with some form of flu like symptom?" Many I have noticed say that they had a sinus, ear ache, flu, bad headaches, stomach illness, the list goes on, but it is why my latest research is leading me towards thinking that some deeply based virus is lurking within me. Ordinary anti-biotics were given to me when I first called the ambulance two and a half years ago (yes the symptoms were so bad as to think that I was dying) and after 3 days in ER (thank you Geelong Hospital caring professionals) I did feel better but had to use a walking frame around the hospital, how distressing and embarrassing for this long distance runner! Anyways, as previously advised Olivia, I am seeing my Dr on Monday morning to ask him to issue a script that addresses deep seated Virai; to be continued and until then, know that we fellow sufferers, support you in spirit, you are not alone and, unless you get run down by a car as I recently nearly did, you will not die from this awful condition. Hugs, Jon

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  • Posted

    Hi ,

    I was recently diagnosed with benign paroxysmal positional vertigo and can sympathize with everyone with this terrible feeling. I was very interested by 3jonAustralia's question in regards did it start with flu like symptoms? My answer is yes as i was quite ill with what i thought was a cold. Fever , feeling nauseous and just generally unwell. After a few days from diagnosis (trip to hospital at 3 in the morning thinking / fearing the worst ,first bout of severe vertigo) symptoms have started to relax but still feeling nauseous cant help but think that there is some relation between the two.

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  • Posted

    Thank you Frank for being another contributor who started the vertigo/hearing/headache related symptom by having some flu like episode.

    As an I.T. systems specialist who converts all things interesting into statistical data, I was surprised some time ago to make the connection between sufferers of most on this site. That is that the initial bout seemed to arrive without warning, but did follow an earlier illness. Mine was so devastating that I called an Ambulance. I awoke early one morning and thought that there was some kind of earthquake as the room suddenly moved dramatically. I made it to the floor and crawled to the bathroom where I spent the next 3 hours just vomitting. I then crawled to the deadlocked front door and just managed to open it and the security screen door, I didn't care if someone came in and murdered me at that stage, I felt so bad that it would have almost been a blessing. Ambulance arrived and lovely young paramedic lady said "Oh yes, we've had lots like you this week, it's Vertigo"; she was almost right but that really only covered the symptoms, certainly not the cause and that I believe happened some week before when I had a serious bout of flu. So, enough of reliving that event thank you very much, I fully recovered after 3 months and moved on, or so I thought. Similar event (Flu and Vertigo vomitting"happened again 18 months later and that was July 2015 and I still have difficulty with walking in a straight line, well that's not quite right, I simply cannot walk in a straight line which makes my long distance running just that little bit more spectacular every 10 metres or so, But I just don't look back anymore to see if someone has seen me :-). As mentioned I am seeing my GP on Monday (25/7/16) to prescribe the list of vitamins given to me by my Pharmacist and will update my post then and perhaps start a new POST that shall simply advise my progress and hopefully relief for us all; that is my fervent prayer. Hugs to all, Jonathon in Townsville, Far North Queensland, where the weather is always lovely.

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