Hi there, I’m new to the group and was sort of diagnosed with MAV in December after vestibular testing. They said It wasn’t necessary VM, but associated with migraines? Was confused by that diagnosis. I’ve had constant dizziness/anxiety/balance issues/headaches for the past 6 months. I always feel like I’m rocking. I struggle to accept what this is and it’s depressing and very anxiety inducing. It actually started a year ago, was diagnosed with vestibular neuritis, went away for after 2 months, but then came back 4 months later.
I notice the boat feeling is heightened when I sit, like especially on the toilet lol. Is this common? I feel like I feel the “dizziness” or boat feeling In my lower back/tail bone/glutes area sometimes and bending amplifies. Anyone else? Thanks in advance
Welcome to the forum Pete! Sorry to hear you are experiencing dizziness. Yes, I have the same sensation on the toliet, funny you mention that. Yes, bending the lower lumbar / low back area makes it feel more unstable. In fact, my muscles in those areas are actually quite stiff, probably due to the unstable balance feeling. Lots of us on here are “rockers”, including myself and we often feel like walking down the aisle of an airplane or on a boat as you say. It is very difficult to accept, especially when it goes on for so long without a break. Anxiety is a major part of MAV. I have had it for over two years, but I’m getting close to being fully recovered now.
I think it would be helpful for you to read this:
Usually the first thing to try is a proper migraine diet and maybe some supplements like CoQ10, magnesium, butterbur, high dose B2. If you aren’t seeing much results after a couple months, then its probably a good idea to start a preventative medication. Amitriptyline is probably one of the best ones to start with for chronic migraines and it can help with anxiety and sleep as well. Another is Topirimate. But you may need to try several drugs until you find one that is tolerable and is helping. And each drug needs several months trial to see if it works - unfortunately you can’t just take it for a week and make a conclusion that it wasn’t helpful.
With time and patience you will get better. You can see so many people on here that have done it. Even I’m good enough now most days to claim “success”. Good luck and let me know if you have any other questions.
Good mornign and happy Easter everyone!
I am the very same… better when walking than sitting. Sitting in a chair without arms is exceptionally difficult. The toilet too!
This morning in church, sitting crammed into the pew and kneeling are the most difficult for me.
What about lying down? Does anyone get symptoms worse when lying down? Sometimes, it is better to get up and walk about and other times I have to lay down. The fact that it sometimes was better getting up was one of the reasons my first ENT said he didn’t think it was MAV.
The actual act of getting up will often bring on BPPV like vertigo-ey symptoms so I can understand that comment but what did he think it was if not MAV just out of interest. Or didn’t he commit himself? Helen
He didn’t commit himself, just referred me to a Neurologist. He (the first ENT) is a MAV sufferer as well and many of the things I related to him hit home but the fact that I would wake up with vertigo or varying degrees of dizziness or even a headache and some of the time if just got up it would ease off. If I lay back down, it would get worse again. So it isn’t the act of getting up that brought on the symptoms, getting up just helped them lesson sometimes to the point of almost gone. Other times I would get up and things would be worse so I have to lay back down and things settle. It’s weird I know but I’m hoping someone else has the same issue! Dr. Rauch (the ENT my Neuro sent me to) thinks I do have MAV. I’m on vacation right now so haven’t fully started the diet but have dropped some of the items. Unfortunately I am having an attack here but luckily it is one of those where getting up helps and it isn’t a super bad one…
Many of us have an ugly transition period from being horizontal to vertical and vertical to horizontal. My Dr made me do many tests sitting, standing, laying etc while checking my blood pressure since it was a very hard thing to pinpoint. After a year and 4 months of MAV (and being medicated), I now am more of a rocker than the intense vertigo when transitioning from horizontal to vertical.
Thanks so much Erik! Super encouraging to hear. I feel I’ve done things a little backwards as far as treatment, partially because my anxiety and panic disorder was out of this world when this started so doctors didn’t know which illness to focus on. Now that my anxiety is a bit better (although I feel quite depressed still), I feel it is easier now to describe what I’m feeling and then start treating. I just started paleo a few weeks ago but I am planning on modifying it this week to accommodate HYH diet. I also am on a beta blocker for anxiety (it’s been a month) and see no relief yet from migraines but maybe not right dose or I just need more time. I was on Magnesium glycinate for 3-4 months and didn’t notice a difference so maybe I’ll try one of the other ones. Good to hear that things do get better for many people. Thanks again.
I think the betablocker dosage for migraine is quite high compared to what you would take for anxiety. Even then it can take 6 months or more. When I was on a calcium channel blocker I became pretty depressed too, I think both affect adrenal hormones in their own way and this can be difficult for some people. Blood pressure meds are good, but I think Amitriptyline or Topirimate are faster acting in general if you can tolerate them. This is just my opinion based on what I’ve seen from others on here.
Erik you are absolutely spot on there. I think any betablocker/calcium channel blocker probably needs the full four months or more, and being on an effective dose is critical. I ‘wasted’ over a year on too low a dose thanks to a confused GP. They are particularly dose dependent, They can also be extremely effective IMHO. Betablockers do cause depression for sure. Perhaps calcium channel blockers do likewise. Helen
Check the PIL for your particular beta-blocker. It should give you the dosages. It should work very quickly for anxiety. I say this cos stage performers take it soon before performance. With MAV though you have to remember it generates its own anxiety in a cycle so maybe it won’t help that much. The best beta-blocker for migraine prevention is reported to be Propranolol, long established over many years. It’s general practice to tirate slowly up on preventatives to reduce sude effects and a few people do well on very low doses. This is however a bodyweight/mg of drug to take formula that @GetBetter found at the Migraine Summit some find of use. I’m sure he’ll dig it out if we ask nicely. Helen
I have found great relief from eliminating sodium (especially chemical vs say sea salt) and I added dandelion root capsules as a diuretic/anti inflammatory). Wondering if mine is perhaps an atypical meniere’s, although Drs. also thought some type of migraine - and ENT said meniere’s would cause hearing loss and mine tested fine. But lowering my sodium worked wonders for my rocking although I still avoid fluorescent lights when I can and I’m always worse when I’m tired. Just thought I’d share as it helped me get back to at least 80%.
Anything but particularly something as simple as this, is wirth a try. I find bacon, ham etc, all but salty, seems a trigger and bit if dehydration will give my Him Indoors vertigo and he’s not any migraine/balance problems at all. Helen
I had this for many months. I think its worse when you sit leaning forward which is probably common when using the toilet. Try not to lean forward and see if it helps some. When I was doing my vestibular rehab I started doing some of the exercises in a sitting position while leaning forward and I think they have helped some.
I have the boat feeling as well. Like you almost exclusively when sitting still now. Hopefully it won’t get worse for you because it can. I had it for many months while standing and walking around too, but almost never in those positions now… I have problems with a sensation of my right foot dropping while walking that I’ve never been able to get rid of.
One of the things that has really helped me after walking for a while and sitting down and having the boat rocking sensation start. I do an eye exercise that helps me significantly. I will try to explain it:
I keep my head still and pick an object on the left wall about eye level and an object on the right wall about eye level and I move my eyes between the two objects for about 20 to 25 repetitions. Then I do similar vertically on the top and bottom of a wall… Not sure how it helps me but it seems to…
The other thing that has helped me a lot was taking dairy out of my diet. I’m not sure if its some sort of migraine trigger or if I have an allergy to one of the dairy proteins (whey or cassien). After taking dairy out of my diet for 2 weeks and reintroducing milk or yogurt I would notice the vertigo got noticeably worse after eating so I’ve had to remove it from my diet. It’s not easy to replace the protein from dairy but I’ve had significant improvement with this dietary change and a simple eye exercise after sitting down. My walking still isn’t normal but I’ve gotten a lot better and I’m not taking any medicine.
I’m familiar with these symptoms. especially when I first got this condition as the day would go on some of the symptoms would get less and at night when I lay down the symptoms would get worse. The change of position in the morning is a change again that’s difficult. I think its the mind adjusting its compensation.
I sometimes wake up with terrible vertigo in the middle of the night. The eye exercises I mentioned in my previous post help me to settle that stuff down again… Maybe it would help you as well…