My Bizarre Vertigo and Truncal Ataxia

Hi everyone, I am writing to this forum to get some guidance from others who are suffering similar symptoms as me.

I hope that someone can please read my story and at least make me feel a little better about my whole situation at the moment!

Since August last year, I Have been suffering vertigo every two to three months. I have vertigo and then for four to five days after the initial vertigo attack, I am very dizzy, my head feels like its in a different position to what it actually is and I have a lot of difficulty walking and very unbalanced. I sometimes have more than one vertigo attack in the four to five day period. It is quite debilitating, and I can’t go to work or function normally.

I have been to my GP who has referred me to an ENT, however I cannot get in to see her until the 7th January 2013. Anyway, Monday night this past week, I went to bed at about 10PM, spent the next half hour trying to sleep and at 10:30PM had a Vertigo attack (one of the worst I’ve had). I spent the night having difficulty sleeping, my head spinning everytime I rolled over. WHen I woke in the morning, I got up to go to work, however fell straight out of bed, unable to walk without falling. My mum took me straight to the emergency room where I waited five hours before being eventually admitted.

The emergency doctor thought the best option would be to give me some stemetil, and to continue to take this whenever I felt the vertigo, however, a physiotherapist came and saw me, performed the Halpike movement (Which showed nothing). They then tried to walk me and deemed me unsafe to go home as I couldn’t walk without falling and veering to the right. I was then visited by another doctor on the neurology team who checked all my reflexes etc, said my reflexes were fine and wanted me to have an MRI, she needed to wait for the Head Neurologist to give permission for me to have the MRI done. They said I had truncal ataxia. I was visited by another on the neurology team the following day, who was quite interested in my family history of vestibular disorders.

(My grandmother and her brother both had Menieres DIsease, and my mother has tinnitus, vertigo and hearing loss. Mum has had the Caloric test which shows that she has 68% bilateral weakness in her left ear, therefore, her left ear is only working 32%).

The three neurologists I had seen had told me that once I had had the MRI, if it was clear that I should then go home once able to safely walk and that I should see an ENT. The physiotherapists during my hospital stay helped me to retrain my balance and each neourologist (all three, agreed I should visit an ENT).

On my second day in hospital, I was visited by the head neurologist, who spent less than 8 minutes with me, he cut me off when I explained my symptoms, didn’t care about the family history and told me that if I had a clear MRI, he would give me migraine treatment and I could go. I was really upset, because he didn’t listen! I was further visited by the others on the neurology team, who had told me that my MRI was clear and that they thought it would be best to see an ENT. One of the neuros said that while the head neurologist thought it was migraine, she believed that I could keep migraine in mind for in the future if an ENT appointment doesn’t show anyway. She didn’t believe it was necessary at the moment to persue the migraine theory until other ENT conditions were ruled out. This neuro referred me to an ENT. (I was unable to walk properly at the point, but with the assistance of my family, the neuro agreed I could go home with an ENT appointment which would be traiged. (This was yesterday). Anyway, minutes before I was thinking I would go home, the rude, abrupt head neurologist comes in the room, tells me its migraine, I’m not going to an ENT and he’ll give me migraine medication. HE told me the Physio is wrong, I don’t have nystagmus (even though I have occasionally had nystagmus in the past and I know that I had it when I looked to the right when I saw the physio). The rude doctor left the room. He very rudely said “So what??” When I mentioned the family history, I was devastated that someone who had spent less than ten minutes with me during my whole hospital stay was telling me that I wasn’t seeing an ENT. Isn’t it my right to see one if I desire to rule anything else out!

The Pharmacist then came to see me to inform my of my new drugs. She was concerned however, that the rude, head neuro hadn’t looked at the drugs I was currently on, because she believed my current antidepressents and the medication he prescribed for migraine shouldnt be given together. She advised me to see my GP regarding this once discharged from hospital.

So that was the previous four days of my life, its been so stressful and painful, I am home but I am still having difficulty walking. I am upset that the head Neurologist beleives I shouldnt see an ENT and that I have migraine. I am happy to accept a diagnosis of Migraine, however, I want to see an ENT! Because of his advice to not see an ENT, I am afraid that my appointment with the ENT may be triaged and I may not get in for months. And because its the weekend and it all arrives via snail mail - I have no idea when any of my appointments are and I can’t see my GP until Monday…

So my questions for you all:

I have every right to see an ENT if I want, don’t I? Four out of five doctors beleive that I should.

If it is MAV, can an ENT help with any treatments? Is it still worth seeing an ENT?

Am I doing the right thing by not starting this medication that the doctor who spent less than ten minutes during my hospital stay, with me has prescribed? The Pharmacist was genuinely concerned regarding the medication mix, and I would prefer to not start treatment until an ENT has seen me.

My mum has had the Caloric test, is this a test that would be worth having?

I am feeling quite depressed at the moment - I am sure those of you who suffer from these types of illnesses understand that it is very upsetting and depressing. I probably have other questions but can’t think of them at the moment. I really appreciate those who have taken the time to read this. I really appreciate it. I really want to feel better!

Thank you,
Krista from Queensland Australia.

Hello Krista - welcome to our forum but so very sorry to read about your stressful time with the docs. It is not unusual for many people on this forum to have similar experiences with medicos when feeling so desperate and dizzy. It seems some docs have no professional skills when dealing with patients, especially when they have difficulty in giving a diagnosis!
Their advice to see an ENT was to have the various ear tests to rule out any vestibular problems. If you can’t get to see an ENT till Jan 2013 (surely you wouldn’t have to wait that long) - then I would suggest that as one of the neurologists diagnosed MAV it seems sensible to work with your GP & try some of the migraine preventatives while you are waiting for an appt.
Depending on what anti depressant you’re on at the moment, there are other meds to try alongside your present one. The pharmacist was quite right to be concerned as there are preventative migraine drugs which shouldn’t be taken together.
If you can, look on the site here & find the article written by Dr Watson, consultant neurologist at Prince of Wales Hospital, Sydney which was published in MedicineToday so your GP may be familiar with it. It has a list of the preventative drugs you can try. Anyway, take a copy along to give your GP. The link is:
I went through hell trying to get a diagnosis with symptoms very similar to yours & saw many rude docs so I can empathise with you in your battle to find a way out of the dizzy hell you’re experiencing at the moment.
Read as much as you can on this site - there is an excellent post titled ‘Advice to Newbies’ written by Elisha who has been through many dizzy & stressful times but is now on the way to recovery. Keep us posted on your journey.
Regards Barb 8)

Thanks Barb for your advice. I am hoping that when I see the GP on Monday that they can try and push for me to have an earlier ENT appointment. The ENT appt for the 7th Jan 13 was with a private ENT, I am hoping that once my referral goes through with the Public System, that I may be able to get into another ENT Clinic earlier as an outpatient.

I was so upset when the doctor who said it was MAV said he would refuse to refer me to an ENT, it was the last thing I needed when all I really want is to see an ENT… I was relieved when another doctor referred me to an ENT, but was so upset by the rudeness of the Head Neuro who spent less than ten minutes with me over my four day hospital stay and said he would not refer. (especially when four other doctors said I should see ENT).

I will definitely look at the links you have provided and take them to my GP. I feel that it is hard to find a doctor who agrees with the other doctors… They all seem to have different advice which is very confusing when you are very confused. I’m going to wait until Monday when I see the GP before I go on the migraine medication. I am currently on Pritiq (desvenlafaxine). The pharmacist was concerned that the pristiq and the Sandomigran would give me an eventual build up of Serotonin - when I was on a higher dosage of Pristiq, I suffered badly with night sweats and the pharmacist said I shouldn’t mix the two, therefore seek advice from GP. (Everyone else in the hospital acknowledged that the rude doctor, was indeed rude, and didn’t listen to a word I said about anything).

This time last week I was a normal 22 year old (with the occasional vertigo attack and ataxia) and now I’m an absolute mess.

The physio is referring me to a Vestibular Clinic to learn some exercises… They said they shouild be able to get me in to learn some of these exercises before the ENT appt… Should I do these exercises, or can they make it worse?

Thanks again, krista

Hi Krista
If you do have mav then vestibular rehab before you are stabilised on meds can actually make you worse and if it does, it’s a good indicator that you do have mav. I know from bitter experience! Before I had any diagnosis I went to a neuro physio because my balance was bad. She gave me eye exercises to do - concentrating on an ‘x’ a few metres away. I was told to move my head from side to side gazing at the cross and to do this five times a day. She told me I would feel dizzy for a while but it would help my balance. Well, I did the exercise four times the next day and boy, was she right I felt far, far worse & so sick & dizzier which didn’t stop. I remember that everything I looked at seemed to be moving for days after. I don’t want to worry you but, as you’ve found out, not many docs/physios etc actually understand what mav is. Later on I found a neuro physio who specialises in balance & dizziness problems who knew quite a lot about mav. Her opinion was that VRT exercises rarely help with mav, even after being stablised on meds. She concentrated on giving me confidence to do everyday tasks that we normally take for granted - like just walking round my house & keeping my balance, how to walk (heels down first, legs wide). It felt silly but did work. Looking down at things but not moving head down, move eyes to focus on where I wanted to walk before turning my body, etc. If this is the sort of vrt your physio meant then yes, it can help but give the head moving ones a wide berth!
Let us know how you get on with your GP appt.

Thanks Barb for your message. I will definitely let you know how I go with the GP. I will be calling the Medical Practice as early as possible tomorrow to get in as soon as I can tomorrow.

I’m still very ataxic, but with some exercise I am getting better, I am taking stemetil three times a day… Which works but makes me drowsy…
Being home and away from the hospital has allowed me to think things through clearly. At the moment my plan is this:

-Try and get the GP to push for me to have an earlier ENT appointment.

  • Discuss the conflict the five doctors were having with my diagnosis (four which believed it to be vestibular, one who thought MAV)
  • Discuss MAV Treatment before starting the medication…

Hopefully I can get into the ENT ASAP, and then start having relevant tests to rule out other vestibular issues.

Barb, I am hoping that the vestibular physio will be able to focus more on helping me to balance doing daily tasks… When I was in the hospital, the physio who saw me did some balance training to help me find my centre and focus on that… I am hoping the Physio can help me with that. THe physio did warn me that if it is MAV the eye and head movements would make it worse.

Will update tomorrow after GP appt.
Thanks again for your support and advice… It is nice to write this sort of thing out to make it clear in my head… (if you know what I mean :slight_smile: )

Hi Barb, went to the GP this morning… Had a lot of difficulty walking into and out of the practice, very dizzy. He has called a private ENT and has gotten me an appointment for next Tuesday 28th Aug… He has given me serc to try as stemetil didn’t work very well, and he has advised that he feels it is best that I try the serc, see the ENT and then have relevant tests etc, and to start the sandomigrain if other causes have been ruled out… This dizziness is awful, and I feel so trapped not being able to walk properly… Hoping the serc may help, or that it may pass. Thanks again for your advice and help. Krista

Good news Krista, especially as you have a clear path to follow and not too long a wait to see he ENT. If the serc doesn’t work either maybe ask your doc for a scrip for valium (or another benzo). Not a long term solution but if you find yourself getting very anxious because of balance issues it can definitely help calm things down. When you have the ear tests done though you need to be med free for three days prior. (Don’t know if this applies to Serc). I take .5mg of Ativan when necessary.

Hi Barb, Update on my situation… I have seen the ENT and I have had the Caloric test (with ice water and no reaction with anything else) and I am very glad that I have seen the ENT and not taken the advice of the rude Neurologist! It turns out that my left inner ear is completely dead and not functioning at all. My right inner ear is also damaged but not as severely. I am now seeing a Vestibular Physio which is helping and I am taking treatment from there… Looks like its most likely not MAV and is actually a severely damaged inner ear! Thanks for your advice when I needed it the most :slight_smile: Krista

Hello Krista
I do hope you are able to get treatment for your damaged ears - let us know if/when you get some relief from the dizziness.
Has this also affected your hearing? I would imagine so. Good luck with the vestibular therapy.