Still dizzy after 6 months, getting desperate now 😪

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I'm a 35 year old lady who is at the end of her tether.

I had a flu bug back in March, since then I've been having horrendous dizzyness and vertigo. It's worse around my period, when I basically don't get out of bed but I also have good days where I just feel a little bit drunk and uncoordinated- does anyone else have this?

The GP initially said it was labyrinthitis but after much pushing I was referred to ENT who have basically cleared me of any ENT problem after vestibular testing. I've had an MRI scan (still waiting the results, but no news is good news). I've now also seen a neurologist who diagnosed me with central stimulation syndrome- but according to google this doesn't exist.

I've been on amytriptaline for the last few months with little improvement but the neuro has asked me to increase the dose, which I'm doing.

I've been off work since March as driving is difficult, and sitting at a computer is impossible when I'm in my worst phase. Work are obviously keen for me to return to work but I don't see how I can when I know I'm going to be too ill to even get out of bed for at least 2 weeks of every month.

All of this leaves me exhausted and at my worst sleeping for 20 hours a day!

Sorry for the long post, but I'm rapidly loosing the will to live 😪

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9 Replies

  • Posted

    Hi may. I was diagnosed with migraine with vertigo which I also find is worse around my monthly cycle. Also was given amitriptyline to take which made no difference but I've just been given cinnarizine to try its 15mg but told to take half tablet 3 times a day. Maybe ask to try a different tablet. My doc gave me this as its more of a motion sickness tablet which he couldn't understand why I wasn't given this from my ENT doc

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  • Posted


    I got back off holiday about 5 weeks ago , ever since I have been suffering with really bad head ache dizzy feeling sick and bad neck it's hard to swallow & I loose slight feeling in my left arm and leg , I'm so fed up with it I have been to the doctors 5 times I have blood test ect all came back clear sad , I'm taking my self to a&e today


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  • Posted

    It sounds like migraine associated vertigo.

    Do you have any hearing loss or food triggers?

    Go back to a neurologist/neurotologist and get different medication smile everyone responds differently to medication and you need to find the one that works best for you smile

    It will get better! smile

    Feel free to PM me if you need to vent or chat, we are all in this together.

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  • Posted

    Could this be the result of a non-resolved sinusitus? Google 'sinusitis' and 'L. Sakei', which is a strain of bacteria. It could be a disbiosis in your sinuses. I experienced similar symptoms (episodes of extreme dizziness and light headedness) after having a cold. Apparently people with chronic sinusitis often miss the L. Sakei bacteria in their sinus cavities. If this is the case, you should be able to cure yourself in a matter of days. I used home made kimchi to reintroduce L. Sakei back into my sinuses. All at your own risk though. Good luck.

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  • Posted

    Thanks everyone. The neuro seemed sure it wasn't migraine associated vertigo- this was suggested by ENT tho. I've got to carry on with the amytriptaline until I get my dose up to 50mg (on 30 atm). Does anyone know how long I should give it at this dos before asking for an alternative drug?

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  • Posted

    Hi it sounds like you have migraine associated vertigo which I have.  Your neuro should have known this.  There are meds you can try which will hopefully help get rid of it but it can be a long process.  Most GPs and ENTs dont know anything about it but a neuro should, thats disgusting.  If you look on migraine dot com it will explain in more detail and also there is a facebook website called VESTIBULAR MIGRAINE PROFESSIONAL and MAV SUPPORT.  Both sites are brilliant and should help you a great deal.
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