The Migraine Associated Vertigo Community
Read our welcome post, user support wiki & visit our member recommended products page

New here - mav/mdds?

Hello all,

This topic probably have been covered before but let me introduce myself and hopefully I can get some information and support.

I’m male, early 30s and live in Canada. Last year around Sept, I began experiencing floating sensations when lying down. This was after a week of very stressful time at work. The floating sensations and rocking would continue when I sit and stand still. Also suffer from head pressure. However it all alleviates when I drive or when there is passive motion. Few months later, I find that walking feels strange as if I have anchors attached to my legs, a weird gravitational pull towards the ground and I would sometimes ‘bob’ like as if I was walking on a boat. Also my balance is bad but not so much that I fall over.
I had one episode of spinning vertigo prior to this - not sure if it’s related.

Seen my GP and doesn’t know what’s going on. Had an MRI of the brain and IAC - normal.
Done EKG of my heart, echo and 48 hr Holter monitor - within normal limits.
Blood tests for thyroid problems - normal
Had been prescribed Bisoprolol - doesn’t stop the floating but gravitational pull is less, reduces palpitations.

I’ve been searching the symptoms online and it seems to point to MDDS which freaks me out.
I never been on a cruise in my life and the last time I was on a plane was 2 years ago prior to my first episode so it’s probably not motion induced.

I had flashing auras since I was a kid and blind spots. It doesn’t last long more like 30 mins and goes away and then I get a headache afterwards. They don’t happen a lot though.
Not really sensitive to light but I am to sounds. Like if someone slams the door, I “jump”.
I also have mild high frequency hearing loss and tinnitus in one ear.

One family doctor thinks I have anxiety which causes these symptoms. I don’t have anxiety/depression and it’s frustrating that I have to convince people including family members that it isn’t since tests so far has been “normal”.

Sorry for the long post…just been suffering for a year with no real answers.

Will see a neurologist in 2 months’ time due to our wonderful healthcare system… /sarcasm

2 Likes

Welcome bgone. Could be MDDS but also sounds exactly like Vestibular Migraine, which may actually be the same thing. Check out the VM page at VEDA. And take a look at Dr. Timothy Hain’s website. Also, take a long peruse thru our intro wikis. You’re going to find yourself here. Print these things out for your new neurologist. VM is not quite common enough to be understood by most neurologists.

Needing to be here is bad news but you’ve found an incredible resource and an even better community of people who understand you exactly. We wholeheartedly welcome you.

VM is tough, especially at the beginning. Good news though, with meds most of us can get back most of our health and all of us get on with our lives.

Two months seems like a long time, I know. It’s short compared to wait times I’ve had here in the Seattle area. Use your time wisely to learn as much as you can. VM requires us to learn to be patient advocates simply because it’s complicated and not as well known as would be preferable.

Search this site for any and everything you want to know. We’re all here because we have VM or another similar diagnosis. We’re here to help and to share our experiences.

5 Likes

Thanks for the warm welcome. Really tired and frustrated as the symptoms make it difficult for me to sleep since I also feel like I’m ‘moving’.

1 Like

There are several classes of meds that will help. Fatigue is something we all struggle with in the beginning. Unfortunately, the word beginning means a year. This is an endurance race. It’s doable. You will feel better. Getting on the right med takes trial and error but it’s both necessary and worth it.

4 Likes

Welcome, but sorry your here! I have had VM for a year and 9 months with the past 9 being medicated. I’m doing so well comparatively, but one symptom that keeps on keepin on is the perceived motion when I’m lying down. If it’s been an extremely stressful or physically busy day, I rock like crazy. Other times, if I’ve had a good day with little physical or mental stress… I rock very little. I’ve learned to just “go with it” and let my body do whatever recalibrating it needs to do. Try not to let it scare you, the anxiety makes this disorder flare even worse.

4 Likes

Thanks Nae. I get this floating sensation whenever I lie down. I’m not sure if floating is basically the same as rocking or swaying? Nevertheless, I take Valerian supplement if things get too unbearable and it usually works. I’m ‘still’ enough to fall asleep.

I heard some people take Magnesium for sleep and VM. Is it Magnesium Oxide or Magnesium Citrate? Which one?

Take care

1 Like

Your symptoms sound so similar to mine. It sounds like MAV. For me the only thing that has helped me improve is time and medication. I’m on 35mg of Amitriptiline and feeling like its manageable now. Also look into a good masseuse as tight neck muscles can contribute to all of this. Best of luck to you

1 Like

Hello and welcome
This is the desciption i always use to my neurologist when they ask me to say how i feel and define dizziness. O ALWAYS feel like im being pulled to the ground like a magnet…o dont have the rocking or room spinning symptoms just my body being pulled in all directions…its horrid
Jo

1 Like

Sorry to hear that Jo. Did you get a diagnosis from your neurologist?

1 Like

I was diagnosed with Chronic Vestibular Migraine in November 2014…still have issues daily but im getting the correct treatment now to at least help me function. 75mg of Venlafaxine and 37 Botox injections every 3 to four months…its hard struggle but the quicker its treated i believe the more chance you have toget it under control…at least thats how it seems to be on this forum. These guys are amazing they saved my sanity on many occasions
Jo

2 Likes

Hi @ahpbgone!
My specialist recommends specifically “Magnesium Oxide”. I have no idea why that is his chosen type of Magnesium but what I take daily. He recommends 400mg but I take 500mg since it comes in 250mg tablets. That and vitamin B2 (400mg) daily, which he is also adamant about. I’ve never tried valerian but since starting Ami / Nort, it has gotten much better… it’s so strange, sometimes I feel like I rock head to toe, then sometimes side to side. Such a bizarre disorder!

2 Likes

Thanks for the info Nae. I tried 250mg of Magnesium Oxide supplement and it didn’t make a difference. It actually gave me a slight headache…

The past few days have been particular rough especially when trying to sleep. The floating is worse and I feel like I’m sinking when lying down which freaks me out.

Valerian root helps me. Some people call it nature’s valium.

1 Like

I kind of like the sinking feeling. I pretend my mattress is a lot more expensive than it actually was.

3 Likes

I used to get the swimmy head feeling in bed, only had the falling feeling once the first night I took Ami weirdly enough! I didn’t mind it either for some reason although it was weird! :joy:

1 Like

Just FYI guys.

I managed to see a neurologist overseas, explained my symptoms as mentioned above and was diagnosed with Anxiety. He prescribed Xanax and Desvenlafaxine. A benzo and anti-depressant. What a shocker. I don’t exhibit anxiety at all just the false sensation of movement when lying down. He also shrugged off I was having a migraine and hasn’t heard of MDDS. I asked him could it be MDDS? He’s like what is it? …

I don’t know how to feel…seems like bs to me but I just wanted a opinion from one neuro and now my family thinks I have anxiety and depression. WTF

2 Likes

Get another opinion.

If you have a false sense of motion mostly when lying down that is not anxiety! That is positional, therefore there must be a physical element to it.

I could switch that symptom off and on at some phases of my condition by sitting up/lying down.

2 Likes

Hi. Sounds like you need to find a migraine specialist neurologist if you can or a neuro-otologist. MAV isn’t widely known or recognised many places still. Supposedly it’s pretty common unlike MdDS which it seems is much rarer so that’s not surprising. I got diagnosed with ‘anxiety’ first time around too and like you I knew it wasn’t that so looked elsewhere for treatment. Remember though there are no specific drugs for MAV other class of drugs are used ‘off label’ to treat it so you’ll probably still end up taking an antidepressant in low dose or a beta-blocker anyway. Used the way they are to treat MAV they shouldn’t affect your mood or drastically reduce your blood pressure. Desvenlafaxine is, according to Dr Hain, a more expensive version of Venlafaxine (Effexor) which is being used more and more for MAV treatment so may help. You still taking Bisoprolol too? Search on my friend. Search on, Helen

2 Likes

Yep, I agree with James and Helen, find another specialist asap. The diagnosis “anxiety” is not going to help you find the right medication to treat migraine associated vertigo. It will delay your recovery.
Certain specialists diagnose mental health issues out of ignorance about migraine. The fact that your neurologist had never heard of MDDS is alarming.
Migraine is a physical illness with physical triggers – some of those triggers can be mental health related, such as stress, but there are many other kinds of triggers (hormonal, dietary, weather, smells etc.) and the vertigo is the result of a physiological problem.
And yes, anxiety is often a result of MAV. Being dizzy is scary and it takes a lot of time getting used to. But anxiety is a product of MAV, not the cause.

2 Likes

I do not take bisoprolol because it does not help. I forgot to mention I was also prescribed propranolol (Inderal) which I will start taking.

I won’t take benzos because I know it’s highly addictive and the withdrawal symptoms can be hell.

Agree entirely about benzos. Good on you. Here in the UK they don’t get prescribed. Totally out of favour which for your reasons stated I’d say is good idea.

The Bisoprolol doesn’t help. It’s a selective beta blocker. Propranolol which seems tops for MAV amongst beta blockers is non selective. Must be some connection. I’m no medic so don’t ask me what. Not a clue. Goid luck with the propranolol. I take that myself. Just one word of warning. It can be a very slow worker. Mine took months so be warned and be patient. Don’t throw the baby out with the bathwater as they say. You may need to stick with it months. Helen

1 Like