Hi all
So I was diagnosed with labyrinthitis in 2013 after a horrible first experience of Vertigo, with nausea…
Symptoms I had then were vertigo, nausea, ear pain, tinnitus, floaters in my eyes, light sensitivity, noise sensitivity, anxiety and ear pressure.
It stuck about for about a year, then subsided for about a year, then returned for a few months, went for a few and continued this way and I was clear until Xmas, then the week before Christmas 2016 I relapsed and have been feeling awful since…
My doctor is now saying its Menieres but its been suggested by others that it could be MAV.
I am on 8mg Betahistine 3 times a day at the minute. I also take 2 Ginkgo Biloba and 2 Vitamin B Complex a day.
The last week has to be my lowest point though, and particularly today — I am having neck pain/aching, extreme dizziness (in my.head feels like its spinning not the room), full ears, a weird fullness between my eyes but not actually a headache (no pain) and nausea…even standing to cook the kids tea is making me feel like I might pass out.
I feel horrendous. My work means I wear a headset all day on one ear and I look at screens, it also means I am having head movements up down and sideways for a solid 3/4 hours on my shift…which I seriously doubt is not helping…i tend to feel ok at home but work has been triggering me lately.
I’ve just been refered back to an ENT and am waiting on the appointment.
Just feel horrendous. Is there anything else I can do to try and help myself. I have a 6 year old and 12 year old so laying in bed all day is not an option!
Either way it sounds like ear trouble … Menieres (as per Dr. Hain) is MAV symptoms + progressive hearing loss. I’m diagnosed with MAV but have minor HF frequency loss, but it doesn’t seem to be that progressive (as is typical for Menieres). Have you tried some of the MAV medicines? They can offer fantastic symptom control if you are one of the many lucky ones for whom it gives relief. I can recommend you try Amitriptyline. It’s been a life saver for me.
Check this link:
To be straight though, i’m very sceptical about MAV being a migraine caused condition. Ear trouble is a very big cause of migraines (as Dr. Hain states also!), so I would suggest you think of it that way round, personally, as I find it very difficult to explain 24/7 symptoms are caused by migraines that I don’t get anymore because of successful prophylaxis.
You can also try the supplement and diet route to relief, but other board members are much better to speak on those topics. Those routes are more critical if you are not taking prophylaxis as they seek to reduce your risk of migraine without medication.
I’m sorry you’re going through this. I know how hard it can be! Your symptoms sound exactly like mine. I’ve experienced them all. I feel like I could have easily written your post!
I think the number one thing that has helped me is to try and stay positive. Think of yourself as getting better. Try some anxiety reduction exercises. Get enough rest. Stay really hydrated. Eat healthy. I don’t follow the migraine diet but I do avoid big triggers (chocolate, alcohol, nitrates, msg) Do anything and everything you can to try and improve your general well being. Make sure you take time to care for you. I know that can be hard with children and working.
Have you considered wearing sunglasses at work? I sometimes will use sunglasses when I find that electronic light is really triggering me.
I started seeing a chiropractor for my neck and it’s helped me tremendously.
When I’m feeling extremely bad I take an epsom salt bath and it helps relax me. I’ve even started taking them when I start to feel spinny and it usually helps ward it off. I don’t know why it works but it does for me.
Try and keep the faith that it will get better. It will.
Your extreme neck pain and dizziness issues that accompany it sound a lot like what i have (my doctors are in debate as to whether mine is MAV or chronic dizziness). But I get these episodes (the longest was 2 weeks which I am still slowly recovering from) where the back of my head and neck are in severe pain. A few days I could barely move my neck. And I can feel the dizziness stemming from it. Normally my dizziness isn’t too bad sitting down but while I have this neck stuff it is just as bad sitting down, and the pressure while standing or trying to walk is extreme. That feeling was nauseating to me off and on. I am so glad this last one ended, I didn’t want the feeling to become the new “normal.” I have tried physical therapy for my neck but got worse spinning sensations after 2 months of it. I do need to find a way to increase neck mobility, don’t know how at this moment. I do use a moist, beaded heating pad around my neck which helps a lot.
I am trying to take better care of myself. This latest dizziness bout has been since before Christmas but recently I am getting pressure in the back of my head and neck as if I have slept funny so I know its something happening.
I’m currently taking
3 x 8mg betahistine
2 x 120mg ginkgo biloba
2 x Vitamin B complex
ibuprofen and paracetamol at even intervals
Seems to be helping but I am still having nausea and a weird head. I have found that chocolate seems to make the dizziness worse though so I am avoiding that. I dont drink and I have heard cheese is a no no too. I think I will look into the migraine diet.
I considered seeing a chiropractor about my neck or about getting a neck massage to try and relieve the tension and hoping that helps the migraine that’s not a migraine!
So fed up of this though. Ive had it since 2013 now on and off (thankfully I had almost a year symptom free before it started to perform) so om.hoping to get some form of remission again!