New to mvertigo.org

Hi all,

I have recently been diagnosed with silent migrainous vertigo (upgraded from a diagnosis of Meniere’s Disease). I have never heard of it before but have been reading this forum and thought it time to introduce myself.

For 2 years I’ve had permanent dizziness, vertigo (especially at girlie time), wierd crosseyed vision where I can’t focus on anything, nausea constant tinnitus and hearing loss. I’ve recently started a course of amitriptilyne 10mg and so far (touchwood) it seems to be behaving itself. I’m glad I’ve found a group of people who share the same crazy symptoms and understand what it’s like to live with it and thanks for the FAQ as it gave me the information to adequatley explain to people exactly what this is.

I will say though I found it fascinating on reading through the archives that MV/MAV shares co-morbidity with both fibromyalgia and IBS. I have both of these and MV is my latest diagnosis and I’ve posted on my FM site to see if any others there have MV/MAV so it will be interesting to see if there are any replies.

Anyway,

Best wishes

Marie

Hi, Marie. I’m sure glad you found a med right off that works for you; others have had far more of a hunt.

With the fibromyalgia diagnosis, did you follow particular dietary guidelines?

Hi Marie,

Welcome to mvertigo and really glad you found the FAQ helpful. I’m interested in your hearing loss because that is not so common but definitely happens with this junk. You may have ventured over to the Meniere’s talk forums at some stage … it really makes me wonder just how many over there have MAV and have been wasting their time trying to treat MM for which there is little treatment, and maybe that’s because thye aren’t treating migraine. Imagine if all someone needed was 40 mg of nortiptyline and trigger avoidance to end 10 years of suffering?

The fibro/ IBS thing is definitely another strange phenomenon with this. I have thought many times I had fibro going on but it’s probably just migraine. The IBS is a constant now for me as well … and then there’s the lack of stamina I have for endurance exercise. It’s like having chronic fatigue but it’s not. Crazy.

Scott

Hi Scott and David,

Thanks for replying. Sorry it’s taken me so long to reply. Yes the Ami works on my dizziness and vision wonderfully but still have the awful tinnitus and hearing loss. I have ENT this month so will be discussing that with him. I aslo have hearing therapy and will be looking at sign language and lip reading classes to help me cope.

It’s interesting what you say about not tolertaing exercise as that is a huge thing for fibromyalgics as well and one I know well! And you may be interested to hear that alot of people think that fibromyalgia and CFS/ME may be two sides of the same coin, ie same illness. It is known that alot of people are currently not being diagnosed properly and certainly here in the UK they are looking to change the diagnosing criteria according to Fibromyalgia UK as people may be falling through the cracks.

I did ask on the UK Fibromyalgia forum if any one else had been diagnosed with this and no one has but there are quite a few on there who suffer bouts of vertigo and have been given serc and told to go away and try it (this is what mostly happens with fibromyalgics - everything is down to your FM!). Most says it works but only after a long time which is what I find - can take 5-6 days to kick in. Some are going to speak to their GP’s about Migrainous Vertigo and see what comes of that. You may find the UK forum useful for finding out about symptoms of FM etc. When I was diagnosed there wasn’t much known and it’s only been through talking to each other that we’ve found out things that we thought were just us (like the dentist always going on at you for your bleeding gums) may be part of fibro and the symptomology is expanding.

As far as food for FM goes it tends to differ from person to person (much like MV) but the staples are no green pepper (contains a chemical which is a pain enhancer although red, yellow and orange are ok), no caffeine (includes chocolate), no alcohol, stay away from processed foods, no msg or chemicals that they stick in food, no sweetners, no white flour or gluten, limited or no sugar (again sugar is pain enhancer), citrus fruit and avoiding yeast products for candida (which again usually is with fibro). There is some debate about red meat. Some sites and people tell you to avoid it, some say it’s ok. I just have it and keep it to a minimum. We also have to watch our nightshades (potatoes, tomatoes, peppers) as they can trigger a flare but this is not the same for everyone.

For me it works as most fibromyalgics are on a horrendous number and strength of pills and I only occasionally require regular paracetamol to help. I group it with relaxation and getting the right amount of sleep and knowing where my limits are. Which is why I find this MV so frustrating because with fibro I’ve learned over the past 6 years what sets it off and what controls it but nothing other than Ami works for this and I get really, really angry about it. I have found caffeine not so great but already knew that.

Anyway it’s nice to have found people who find this equally frustrating. I’ll keep you informed of the hearing loss or as I call it Pain in the Rear - Ccan’t even watch TV without headphones!

Best wishes and many thanks

Marie

Hi Marie
I have chronic fatigue syndrome, fibromyalgia and MAV. I had migraine with aura from the age of 13 (I’m now 45)until 10 years ago when I began to become dizzy every day. After contracting what the GP thinks was a virus in Jan '08 I was given the 3 diagnoses by 3 different specialists (neurologist, rheumatologist and neurotologist). The only foods I avoid from a fibro point of view are sugar and wheat asthey seem to exacerbate the pain and fatigue. I follow the migraine diet but have recently allowed myself chocolate in small quantities! I take Dosulepin (tri cyclic anti -depressant) in a low dose of 22.5mg which has helped both the fibro and MAV. I didn’t work or drive for a year but now work three days per week and swim 4 days. VRT has also helped and I feel I’m continuing to improve albeit slowly. I definately think the 3 are linked and maybe all part of the same thing. Who knows…
Sian

Hi Sian,

It’s great to find someone that has all three and I think you’re right when you say they maybe linked. I’m so sorry you’ve suffered for so long. I’m so sorry that any of us have suffered with this at all. I’ve had chronic fibromyalgia for a long time now and I would take one of my worst fibro days over this MV anytime and my worst fibro days are really bad. I’ve even said that to more than one doctor and they looked shocked at me.

I too work part time (27 hours per week but wish it was ALOT less) but there is no way I could drive so well done and congrats to you! I’m sure if you keep going you will improve and life will get better for you. I find working hard with all this very hard and I have a whole host of other physical ‘obstacles’ as well (if i was a horse they’d have put me down by now!) and feel that this MV will be the thing that will end my sort of career eventually in the next few years, but knowing that there are other people out there with MV/MAV makes it alot easier as I now don’t feel so alone. Still frustrated and angry about it but don’t feel so alone.

Gentle hugs

Marie xx

Hi again Marie
If it’s any consolation, I never thought I was going to work or drive ever again! But with various lifestyle changes, medication and also the Expert Patient Programme things have improved. It hasn’t been easy but if you can pace yourself and accept this is a new way of life it will become more manageable. Before I was diagnosed I worked full time and had a very active, probably overly busy life but now I appreciate the small things I may have taken for granted in the past. I also think all my symptoms escalated at a time of perimenopause (sorry boys!) and now the symptoms are easing it may be the hormones are getting back under control. Fingers crossed!
Try to Keep your chin up Marie and absorb the wisdom and support this fantastic forum has to offer.
Sian

Hi Sian,
What is the Expert Patient Programme ?

Hi Dizzychick
The EPP is a free six week group programme consisting of a two and half hour session each week. It is for anyone with a long term health condition to help them understand how to manage aspects of their condition such as pain, fatigue, diet, exercise, stress and relaxation. The programme is usually held in a GP surgery or community centre and the sessions are facilitated by someone who has been on the course and then undergone facilitator training. Health providers are keen on it as it encourages self help and knowledge but it can also be seen as a cop out by the NHS!If you contact your GP surgery they should be able to tell you where and when the next one is if you are interested in joining, otherwise I think the EPP website will give you a local contact name and number. The group I was with wasn’t big - 10 people - and it got me out of the house and in contact with others. It also encourages an alternative way of viewing your health/ ill health.
Sian