After lots of tests including balance and hearing tests and an MRI scan last year, I was diagnosed with MRV and take 30mg Nortrtptyline daily. Despite this I still don't feel 'right' and not sure what to do. My consultant discharged me. My main problem is when I'm walking, I can feel that I'm off balance, being pulled to one side (usually the left) and I sometimes fear I'm going to faint or collapse which then causes me to panic and start getting palpitations. I can't think what is causing these sensations. Is there anyone who has similar to mine?
They have suggested this could be my problem , but do feel of balance all the time , I also got such a heavy head and lighting makes me fill of balance , like I'm on a trampoline ,
Hi Carina, i have the same diagnosis alongside BPPV. I am on Nortriptyline 10mgs which has really helped me but my consultant said i need to continue taking the meds possibly for another 9 months until my brain heals.
It may take some time for your brain to adjust to the damaged. He said if i had been diagnosed sooner, rather than the 2 years it took to be diagnosed he could have helped me get better more quickly. I don't know how long it took you to get your diagnosis but it will possibly take time for adjustments. All best wishes.
Hi I'm exactly the same tho still haven't been diagnosed, it's been going on near 4month now, is anyone's problem there all the time? Like everyday, I'm at the end of my tether now still haven't been out on my own, and my holiday is fast approaching 😔 (Wednesday) I have borrowed a wheelchair as iknow I will be unable to walk or worse still stand in ques, I'm really worried as there will be hundreds of people there can't stand crowds makes me feel alot worse yesterday I started to feel really poorly shaking, high temp think I'm getting a bug which has made my off balance and dizziness worse,
You may want to look into vertical hetrophia it is an eye condition.
I had my eyes checked for that on Wednesday, and all fine, even typing this now feel like I'm looking through a cloud if that makes sense
Nortriptyline stopped working for my migraines after a short time (even after increasing the dosage several times), so the doc tried me on a couple different meds. Topiramate worked really well for me. Perhaps talk to your doc about switching meds or increasing your dosage.
When my consultant discharged me she said if my symptoms persisted then I should visit my GP and get my dosage increased but I take so many tablets at the moment for other issues that I'm a bit reluctant to do this but I may have to, will wait a few more months and see. It really knocks my confidence and sometimes feel I don't want to go out anywhere but I still have to hold a full time job and carry on with my life but after all the tests I've had I can't think what else I can do. It has even crossed my mind whether they (the medics) have got it all wrong and even thought what if I have got MS or Parkinsons instead but surely with an MRI scan things like this would have been picked up?
Thanks all for your replies, I feel reassured I'm not alone but I have thought have I got MS or Parkinsons and maybe they've got it all wrong - I just don't know what feeling 'normal' is nowadays. This all started last March (2015) when one evening I just came over all dizzy out of the blue and thought I was going to faint which scared me. I put it down to a one off incident until it started happening regularly so I thought I'd better get my eyes checked as I thought I might have a brain tumour but eyes were fine and nothing sinister had been picked up so then ended up at my GP and tried some vertigo medication and when that didn't work I was then referred to a consultant where I had all my tests done ie balance test, hearing test, blood tests, MRI and I think from the balance test I was diagnosed with MRV. A year on I still don't feel like I did before my very first incident. I find it all a bit baffling.
hi rocksolid went to see Dr. she said there is a slight vertical imbalance........had alot of trouble being fitted for prisms...my glasses have been ordered ...so lets see.........
Do you have it constantly, the off-balance feeling? I do, and have wondered if with MRV, you get them "between" migraines too. Heavy head pulling you to one side, very off-balance, feel like you are walking on a balance beam that's on a trampoline, as you say. Yup, that's me too. I didn't know nortriptyline helped with this... I thought it was just an anxiety medication.
I to was worried I had ms , X
Yes , it's there 24/ 7 , for me , though I have managed to get out on my own , a couple times last week , but it's so hard , I can't stand this feeling of being on a trampoline , everything seems of track ,
Hi Carina,
I have exactly the same symptoms as you. When walking I feel like I am going over to the left and I feel very lightheaded and faint some days with weak jelly legs. I have been diagnosed with VN (14 months agon) but have also been told that I am probably suffering migraine alongside this. My consultant has prescribed Amitriptyline to help with the migraine and tension and stiffness in my neck and shoulders, these will also help with my poor sleep and dizziness. I have started on 10mg per day which will increase over three months to 30mg. Hopefully I will start to feel some improvment but will reserve my judgement until I have been on them for 3 months.
Like you I do wonder on occasions if the diagnosis is correct, it is interesting to hear you mention Parkinson's and MS, my older brother has just been diagnosed with Parkinson's so it is in my family.
Anyway, hope you begin to feel some improvement soon
Best wishes
Laurence
Yes I get these symptoms all the time. I will see how it goes with my nortryptyline medication for the next few months and if I feel the need to go back to my GP then I will do. At first, before being referred, I was put on Stemitil (for vertigo) and then when that didn't work I was put on amitryptyline which didn't work either and gave me horrible side effects (horrible nightmares and difficulty waking up in the mornings, it's a sedative and anti depressant).
Please keep me all updated how you all feel from time to time and how bad your symptoms get and I will do the same. I went for a short walk yesterday and was fine until halfway through the walk I started to feel off balance etc that's why I think sometimes that it's more of a balance issue than migraines but I think one of these days soon I'll make an appointment with my GP or maybe write a letter to the consultant that saw me to air my concerns and see what they say.
i've also thought it could be as simple as a sinus problem as some days I have a pressure on my forehead and feel blocked up but I wouldn't have thought this would give me the symptoms I get. I'll go for another walk later today and will take note of how I feel by the end of the walk and let you know.
This might be something that will get better with time or something we have to live with and manage but I have other health issues too without having to cope with this one :-(
I'm not sure how MS would be diagnosed but I would have thought an MRI head scan (which I've had) would pick up something on or in the brain which would point to MS but thankfully nothing was was picked up and mentioned.
At present I'm debating going into town as I need lots of things for the children for holiday, iknow if I walk through the shops with my husband I will panic and need to sit on the floor it's that bad 😔 I have borrowed a wheelchair for holiday I'm only 32 so feel a bit silly x
I will look into this thanks. I had an Optimap done yesterday at my opticians and a visual fields test done and the optician will go over my tests and give me a call in the week. The Optimap test I have to pay £25 for but apparently it is a very thorough test to see the eyes in detail and the back of the eyes and they can see more than the standard eye test that's done.
Hi , I also was told to take amitriptyline , do you take them just at night