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Advice Needed Please

#1

Hi All.
Need some advice regarding my symptoms.
All started last summer when I felt cramps in my lower calves, my legs ache sometimes when I just stand up. There are times when im walking and my legs dont feel right, almost like they are not mine. Im am very fit and go to the gym so it does not add up.
Then in the autumn, I noticed that my balance wasn’t right, I don’t fall over but I know its not like it used to be. A few weeks later I started getting light headed just bending down or getting up and a couple of weeks after that just walking around. No ceiling spinning but just general wooziness.
Went to doctors, had 3 sets of blood tests, all ok, blood pressure good, went to see a neuro ,past all the tests and had a mri of my brain and that came back totally clear. He said it could be a migraine, he never mentioned vestibular though. He prescribed Proponolol but nothing changed. That was January.
My doctors cant diagnose me or say its just stress or anxiety.
Then I came across VM by searching for light headedness symptoms on the net.
Am currently waiting to be seen by ENT, already this year ive had a couple of incidents where I get vertigo feelings, like im swaying from side to side, only for a few minutes. When I put the washing out, the bending up and down makes me feel, just not right, almost spaced out.
I tried yoga when the docs mentioned stress but as soon as I put my head to the floor I feel nausea and really dizziness so sit down.
Do these symptoms sound like either VM or PPPD.
Thanks.

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#2

Welcome to the board, caspa.

Sounds like typical MAV to me, however, we’re not qualified to diagnose here, just give our opinion, so it’s a bit tough when people ask for exactly that!

But if you search this site you will see your symptoms described over … and over.

I would avoid yoga, personally. There seems to be a physical element to MAV. Tai Chi is probably a better bet, imho.

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#3

Hi and welcome. What a tight-lipped neuro. I met those. Tried contacting him and adking if he thought vestibular migraine? Worth a call I’d say. As Propranolol is classical migraine and VM preventative treatment doesn’t give a clue but puts you on right road.

As @turnitaround says we are all sufferers not doctors so cannt diagnose however, and I’ve fifteen years experience, sounds like VM to me too

Oh, that sounds just like me. It’s most definitely a balance issue if not VM that one,

Please enlighten further cos I take Propranolol. How much for how long? Two crucial questions. Propranolol works at tortoise speed on occasions. Does nothing, good or bad quickly but it can and does work.

As @turnitaround unless you’ve always done yoga, don’t start now. At your stage I’d have had exactly same reaction. Welcome to the gang! Helen

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#4

Hi @caspa, Welcome!
I agree with Helen and James above, all sounds very familiar sadly.
Do you have access to a Otoneurologist by chance? They seem to take the neurology aspect as well as the vestibular aspect of these types of conditions and make the pieces of the puzzle fit. I had no luck with my ENT, but many others have… just depends on exposure and education I assume. Please keep us updated!

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#5

Welcome to the group,as others have echoed you have some classic VM symptoms but we dont diagnose here, just give support. VM or anything to do with balance really is a long journey, but once you have a diagnosis you are confident in, following a plan of attack will get you relief. If its VM or many other balance issues, is there a cure, no, but theres way to live with the issues and have an enjoyable life. We are your biggest cheerleaders here, welcome again

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#6

I tried Proponolol for 1 month, 1 tablet a day 80 mg and nothing happened. I didn’t have any side effects.

My gp keeps saying its anxiety and put me on sertraline instead.

Thanks for the advice

#7

Thanks for the info.

I have noticed that one of the consultants at the hospital that I am going to is a specialist in neurotology so will try and speak to him.

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#8

Will keep you all updated and thanks for all the advice.

I probably wont get seen for 2 months, the NHS!!, so is there anything I should do in between…exercises, I have seen some on youtube ie head turning while walking, catching balls, eye movement.

Thanks again.

#9

Be very careful with exercises. If pegging out washing affects you, avoid it. Try not to allow yourself to get stiff in movement by keeping your head immobile but avoid head turning as an exercise. Avoid head movements that don’t also involve moving your eyes. One thing most MAVers find difficult to head turning to converse, move chairs into circle or face to avoid. Ask the consultant’s advice. If he wants you to do vestibular rehab therapy, he’ll say so and you need a knowledgeable therapist to guide you, and in UK they are slightly rarer than hens teeth. Best exercise is walking outside somewhere safe and quiet in terms of traffic (people and cars) which can interfere with peripheral vision (visual vertigo) and increase dizziness. Avoid extremes, kneel not bend and don’t look up,at planes for now.

Not surprised. To treat MAV, Propranolol works slow. Propranolol also works for anxiety. Performers take it, just hours before performances too. Amitriptyline can work within a month but experts reckon up to 4 months for most and then that’s four months from an effective dose. 80mg is manufacturers minimum dose for migraine prevention. Some take double that. Some recommend 240mg, Helen

#10

Welcome @caspa - sorry that you are having a bad time with balance etc - you have found the right place to be for support. My problems started last year in April and I have made some improvements, but as @Onandon03 has said everything works at a snails pace and there doesn’t seem to be a quick fix. I saw a neuro-otologist and was lucky enough to find a medication that suited me (Pizotifen). Everyone is different and all though we have many common symptoms what works for one person doesn’t always suit others.
Do let us know how you get on. Jan :slightly_smiling_face: