Undiagnosed & struggling. VN, migraine, MS? Can anyone help?

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Previous history...

- age 30

- before this illness was active and healthy, enjoyed running, mountain biking, camping etc.

- stroke in 2012 was due to a clot passing ASD in heart - closed through leg using amplatzer device

- anxiety at stressful times in life, otherwise ok

- tremor (diagnosed as benign at age 13)

4 months ago...

In work had sudden onset of vertigo, the floor dropped away from me, everything started swaying like on a boat, I felt like I was being pulled backwards. 

I lay down for an hour then went home, felt a heavy cloud in my head and very slumped with brain fog. I tried to type some words on my computer and they came out mirror image backwards. I was confused talking to people and wanted to disconnect from everything. I had the same vertigo sensations for a few days but not as strong, I continued to work.

A few days after I was working at home and had another sudden attack, I was terrified that I was having a stroke. I lay on the bed and felt like I was falling, the feelings were extreme and I started having a panic attack. I rang my mum for help, we got an urgent appointment at GPs who said it's probably labyrinthitis, (I had nystagmus) and prescribed Prochloperazine and to come back in a few days if it didn't help.

It didn't seem to help, I was like this for the next 3 weeks. Could barely lift my head, extreme fatigue and lots of sleeping, couldn't look at a screen without movement and nausea sensations. I would try to get out of the house but sometimes would be too scared. I made it across the road to sit in the park, the movement of the water on the pond made my symptoms worse but I liked the feeling of space compared to being inside. When climbing 2 x flights of stairs to get back into my flat I would be so exhausted i'd need to sleep in the hallway on the floor once i got in the door as I could go no further I felt like I was so heavy like made from lead.

Returned to GP who referred me to urgent TIA clinic. Had in depth discussion plus extensive tests ordered. Checked heart was still closed, 5 day tracker for atrial fibrilation, blood tests, MRI wait was 8 weeks. Was treated as a possible posterior circulation stroke and put on clopidogrel for prevention and propanolol again as had got very anxious and stressed

I gradually improved from this acute stage but it felt like i had to learn how to do everything again and go through the nausea and vertigo with everything new. Shops were awful I felt like the aisles were closing in on me, floor dropping away, lights too bright etc. I could manage a bit better at home and needed to make money again so started a phased return to work. Could only manage an hour or two on a screen a day. First weeks back in office very difficult, I felt drunk and like I was floating around. Talking to people difficult and would slur my words or get imbalanced and walk into things a lot.

As the vertigo feelings have faded they have become more episodic than constant - and are definitely made worse by stress or travel. I have also developed some other symptoms which come and go but pretty much happen every day:

- feeling of swaying, poor balance, walk into things

- extreme fatigue

- insomnia, wake up too early, restless legs

- tingling/crawling sensation across lips and face which sometimes spreads to scalp

- numbness in end of fingers or feeling like i have flour on them (this has been present for a year)

- shivering, chills and goosebumps even when the room is warm

- yawning every few seconds (would last an hour so then go away) left with tight chest feeling

- clumsiness & coordination problems

- slurred speech

- confusion & can't concentrate or think clearly

- dull headache

- brain fog

- tremor worse when having a bad spell

- sensitivity to light 

I also have constant feeling of heaviness throughout my body, I feel like i am twice the weight of what I am. I struggle climbing stairs because of this. I feel drunk and like I am floating around. Psychologically I am very anxious by all of this and I am feeling depressed as my life has little quality anymore. I can't enjoy my family properly, or activities I used to do, I am upset easily and probably not very nice to be around. I am just about surviving in work as luckily I was good at my job and I can get through a days work in around 3 hours then spend the rest of it resting my eyes without anyone noticing trying to save my energy to get home.

The hardest part is I still don't have any diagnosis and I am now 4 months down the line. Some results are below:

-no atrial fibrilation

-blood tests show nothing relating to stroke or clotting disorders

-heart rate drops to less than 40bpm so recommended i stop the propanolol

-MRI shows no tumor and no evidence of new stroke

-MRI shows my old stroke from 2012

-MRI also shows another area of damage that was present in 2012 (i wasnt aware of until this MRI) they report as possible ischemic or demylineation but they assume ischaemic due to other evidence of stroke

- no other demylineation showing

-vitamin B12 levels low - dropped from 190 to 160 during the past 4 months -

The GP/stroke team opinions i've had:

- if it was vestibular neuritis or labyrinthitis it would have been gone by now

- they are sending me for another blood test for B12 but GP says this is 'not that low'

- they don't think its stroke from test results so far

- otherwise they seem completely puzzled!

I am now waiting another 1.5 months to see a neurologist and i am struggling to cope with each day.

I think these are the things that are still not ruled out:

Vestibuar neuritis - I have read stories that VN can last into a chronic phase - could it still be put down to that along with anxiety thrown in? I asked if i should be referred to ENT but they said it doesn't add up to that

Basilar/brainstem migraine - i think a lot adds up to this 

MS - I'm really scared about this due to how some feelings are quite constant, was this my first relapse?

Please please can anybody help me with advice or reassurance?


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6 Replies

  • Posted

    Hi Kerrie,

    I have a lot of the same symptoms that you have listed, and this is my second bout of dealing with this. The first time was Feb. 2015, started similarly with bouts of true vertigo, and then tapered into the chronic symptoms for about 4 months. This first bout only really went away after I started taking zoloft, I refused to take it initally, until I read some studies about hyperanxious tendencies and how they can develop into CSD/PPPD. Basically because I was so anxious my body wasn't able to adjust to it's new balance disturbance. I can't say for sure that the zoloft is what did it for me, or if it was time, but after about 10 days on the meds I felt significantly better. I was on them for a year total, and it was night and day different.

    I've been sick again since the first week of November this year, and am currently waiting on a balance test at an ENT this coming Monday, have a follow up with a neurologist on the 19th. I'm not on any meds right now, but if I don't get better soon I might need to start them again, as the panic attacks are coming back now. I had never had panic attacks/uncontrollable anxiety prior to the dizziness. I would ask your GP about Vestibular Rehab mixed with maybe using an SSRI like zoloft. Some of the symptoms your'e having sound more like anxiety that was caused by your balance problems. It's worth looking into at least, best of luck. Please keep me posted with what you find out, I think it's really important to hear success stories on here, as everyone is just scared all the time of what will happen.

    Question, do you notice any dizziness that is worse when you close your eyes? It is currently my most disturbing symptom, it seems like I get vertigo really bad when I'm sitting/laying down with my eyes closed.



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    • Posted

      HI Colin,

      Thank you for taking the time to respond, i've never used any forums like this and feel like i've been so alone with these symtpoms. Even the most caring family and friends can't understand it.

      Your message has given me some hope, maybe I did have a vestibular problem and I definitely think my anxiety around these symptoms could have developed other things.

      I had never even heard of CSD/PPPD so this is a great pointer. I have just started to read about it and a lot of it makes sense. I feel kind of ok at home in a safe environment but I do have triggers that can make everything kick off. Shops, crowds, meeting new people, work issues etc and I feel like I did right at the start of the illness but with a heaviness like i can't carry myself. 

      Yes closing my eyes I almost fall over or walking in the dark is much harder, I guess I am probably relying on my sight so much if my balance inside is not right - if sight is taken away I think everything is much harder.

      Lying down or sitting however I don't get much feeling, a little bit of swaying but otherwise calm. It is more when I am trying to navigate my way around the world.

      Let me know how this bout for you goes, if you do decide to go back on the zoloft and whether it resolves things again.

      Good luck and hope you feel better soon!


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    • Posted

      Hi Kerrie,

      Will do. I've only just started using this forum as well, as I think one of the worst things about these issues are how isolated you can feel, since most people can't actually SEE anything wrong with you, they tend to blow it off.

      All of us dealing with these problems know just how debilitating they are though. I'll be sure to let you know if I end up on the Zoloft again, and how it works for me. The main reason I got off last time, was that I had gained a little weight I didn't want, and I was getting frequent headaches. I'd take both of those in a heartbeat to feel balanced/normal again.

      I think it's important to know that anxious people, or people who at least have anxious tendencies seem to be affected more so, and for longer than other people. The annoying thing that my family/friends don't understand, is that it's not as simple as "breathe deeply and calm yourself down". It's chronic symptoms made worse by a panic attack, not episodic symptoms from a panic attack.

      Keep me posted on your progress, I hope you get better soon.



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  • Posted

    With your history of stroke, and two sudden episodes of vertigo, together with other symptoms (clumsiness & coordination problems- slurred speech), it does indeed sound like a central cause.  I am therefore surprised that the MRI did not show anything new.

    I advise staying on the neurology path.

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

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  • Posted


    It really sounds like VN to me. I had it for 2 years. The more anxious you are, the longer it lasts.

    I'm sorry you're suffering. It is a nasty illness. It WILL go away but you need to help yourself. Two very important things you MUST do:

    Vestibular rehab (exercises to retrain your brain) These must be given by a qualified therapist in vestibular problems. Also, try a mild antidepressant just for a while to calm your nerves.

    These helped me tremendously.

    Good luck!

    PS: My 2nd bout with VN lasted 4 months. I knew how to treat my problems.

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  • Posted

    Hi Kerrie,

    Aside from symptoms that could be related to a central cause, as Eleftherio points out, much of your case sounds like VN.

    I am in a similar boat, four months in, but working hard to recover. Vestibular rehab is crucial and is immensely helpful! Stay with it and take it slow, if you do begin.

    By the way, I absolutely relate to the computer sentiment. It's tough! Impressed that you are still at work. Props to that.

    Keep us posted. Best!

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