Vestibular Migraine

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Vestibular Migraine

Post by janlou on Sat Oct 13, 2012 8:07 pm

Hi just been dx with vestibular migraine....I have never heard of it until now, migraine yes but not vestibular. Any way its been a long hard road to get to this point.....I had dizzyness, sickness vertigo etc, and I have not been able to work since last November!!!! I gave up driving in June this yr, I do not have headaches everyday,but when I do they are awful.
I also have now got stiffness in my neck, arms , hands and legs the pain is chronic, and I am finding it very hard to cope.
Does anyone else suffer like this?, I just want to talk to some one who understands, I am totally boring my family. Crying or Very sad

janlou

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Re: Vestibular Migraine

Post by Katie on Sun Oct 14, 2012 8:12 am

Hi Janlou, I get a wonderful [not] vestibular migarine roughly every six months. Makes the old fashioned classic migraine that reappears 2-3 times a week look so much nicer. Because I do not know -
  • Have you been ref'd to a neurologist who specilises in headache disorders?
    Have you been checked for all the possible neurological/vestibular disorders that mimic this?


What anti-nausua drugs have you been prescribed. Might be worth asking if you could try stemitil buccan [sp] if you have not already.

I use a tricore orthopeadic pillow as it cradles my entire head. When everything is moving and the the least movement of my head is liable to have me throw up it can help me relax a tad as it fully supports my head so I can try and use deep relaxtion stuff to reduce how many knots my muscles try and tie themselves up into. Do not even think of attempting to try to do stairs when like this on your own its not worth the risk.
If its not being too brutish I try and spend sometime downstairs with my family even if all I can do is crawl downstairs and then lie on the sofa.

Thanks to the spiining and being sick drinking can be hard work. You do need to try even if its just water. I gave up and got one of those insulated travel cups with a lid. Keeps cold water cold and warm warm.
Ice packs and heat packs are worth trying for muscle cramps and pain. I use the ice packs on my head for the migraine pain and the heat packs on my shoulders for where the muscles have all locked together from pain.
If you have the possibility of getting grab rails in a shower with a seat and cope with being upright showers played over locked neck muscles can help with some of the muscular pain even if you also need a bucket !

Keep an indepth diary recording how dizzy, how painful and so on each day is as this will help your neuro to help you and keep tabs on your hearing and anything odd or worrying call your neuro clinic and get your neuro or specilist nurse to check you out.

I have a phone upstairs right by my bed - I swear it now has the neurology clinic on speed dial.
I also have a voice operated laptop system. I may not be able to move and feel like death but once the pain gets down a tad I am darn well listening to the radio.

Hang in there and keep working with the neurologists. I do not think there is an answer to make it all go away but it may be possible to come up with something to make life a bit nicer to be in.
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Katie

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Re: Vestibular Migraine

Post by janlou on Sun Oct 14, 2012 9:47 pm

Hi I am not seeing a neuro, it was a ENT consultant who told me I had VM....been prescribed Metopropol and prochlorerazine for sickness. I can cope with headaches, its the pain in my arms, legs and hands. Do you suffer from fatigue?
I am keeping a diary and I also have pins and needles.

Jan

janlou

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Re: Vestibular Migraine

Post by Katie on Mon Oct 15, 2012 12:16 am

Jan - if you saw an ENT and have NOT been refered to see a neurologist go back to your GP and request a ref to a Headache Clinic. I am fairly certain both Migraine Trust and Migraine Action have lists of where such clinics are in various areas.
Migraine is not simply pain in your head, if you have a severe or complex form of the brute you should be under a neuro. Have a look for the BASH guidleines on managing migraine on this forum. Some find it helpful to take a print out of the BASH guidelines to their GPs to help their GPs to sort out the help they need to manage their headaches.
A neuro with an interest in headaches should be able to work out what prevenative drugs may slow the ghastly headaches with vestibular symptoms down. Admittidly that can be trial and error but its easier with a specilist than a GP. Your GP is the specilist for understanding how all the different health needs may interact on each other though.

Fatigue-----hahaha need a new word to describe the bone numbing tiredness. I call it not enough spoons. I get so many spoons per day and once I have used my spoons up you can bet I will not get given any more for that day. I try and choose one thing I need to do and anything else on top is a bonus.
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Re: Vestibular Migraine

Post by janlou on Mon Oct 15, 2012 2:50 am

Thank you I will see my GP, yes I know what you mean about the spoon theory!!!! I was seeing a neuro regarding a mri I had. She did not think much of the scan said it was non specific!!!!

I am so confused as to what really is wrong with me.....!!!! I just worry so much, like how can a ENT consultant say I have VM? Very strange.

Jan x

janlou

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Re: Vestibular Migraine

Post by Katie on Mon Oct 15, 2012 5:06 am

If you have problems with balance you may get seen to an ENT dr. to rule out things like Menieres and similar. Most ENT are aware that some migraine cause problems with the balance centres in the ears and related parts of the brain just as they do sight, sense of touch and so on.
However if you do have migraine with vertigo and its often it is best to be under a neuro who knows a great deal about the forms migraine can take to work with you and your Gp to get the best treatment in your own case.

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Re: Vestibular Migraine

Post by janlou on Mon Oct 15, 2012 5:51 am

Thanks Katie, It has been so awful this pass yr, started with headaches, then dizzyness, sickness, spinning the lot....Now its the pain in my hands, arms and legs.

Will see how things go. x

Jan

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