Quite a few do visit numerous specialists but more generally looking for a different and hopefully ‘better’ diagnosis being MAV is a waste paper basket dx for all the people they cannot account for by other means. One good reason to try several is sometimes one can be lucky enough to find one who is prepared to manage you through by regular consultations and feedback. That is a great advantage but not widely available in many places.
Personally I have never found one that meets your spec. Gave up looking long ago. It was 12 years before I got a diagnosis, all in my PD. Once one has that either way it’s trial n error, even the migraine specialist I later saw said so. Of course much easier if they are prepared to manage your case throughout.
Yes I saw a few presentations Teixido gave, seems like at least he understands the difficulty in treating these types of vestibular disorders.
I can’t imagine what it must have been like to go undiagnosed for 12 years. I read some of your earlier posts about what you have experienced and my heart goes out to you. I’m hoping that you are more in the recovery phase now (understanding there can always be changes in symptoms that need to be addressed).
Recovery stage? Um maybe going that way. Just had major attack, first for over five years and now end of week three getting back to my medicated baseline slowly. I suspect my hormones may have just fell right off the end of the cliff at last or something similar and that reminds me. Could you be menopausal, peri menopausal or something similar? Can have huge influence.
Oh Helen (sorry finally got a handle on names vs usernames), so sorry to hear that you had a recent attack. What are you taking now to feel better? Are you able to work?
Yes I wonder if hormones have a lot to do with what is going on because I “usually” only have migraines around the time of my period. Ive had the one-off migraine here and there with some weather changes but usually not that bad.
I just turned 40 this year, my cycles are all pretty regular, not sure if perimenopause would be a driving factor for this dizziness episode?
Do you know of anyone who has had success going back on birth control pills for preventative migraine management? I have been off of them for a long time as I was worried about being over 35 and having the migraine risk factor for clots, etc.
My main concern is I can’t seem to get out of this hyper-excitability phase since November. I am ok lying down or sitting up but when I walk around for a while I get a tension headache right over my eyes, feel unstable, and the brain fog/ difficulty concentrating sets in. I almost feel like I could deal with the first 2 issues and press on but the brain fog is the worst - scary and exhausting .
Neuro-otologists waiting rooms aren’t full of middle aged ladies without good reason. I’d lay money hormones are involved. Forty, you well be beginning to experience some unusual (to the MAV that is, not you) fluctuations. If that is the case it’s the start of the roller coaster ride I suspect. Your catamenial migraine experience kind of clinches it in my mind. I remember quitting the contraceptive pill after 35 for same reasons on doctors advice. Again do check out through the Search facility using any key words to research all the experiences people have with The Pill. It’s not straightforward. Some find improvements with the Coil, many find it makes it all worse. It’s all trial n error and I can’t do it justice here in summary. Seek it out. Once one hits these hyper-excitability episodes they can be very persistent. Best to get on to some treatment plan as soon as possible. There’s only one thing more difficult to live with and more difficult to settle than episodic MAV and that’s chronic 24/7 MAV. The one tends to lead to the other.
Thank you so much for the information. I’m actually terrified that I won’t be able to snap out of this dizziness state when I move around. I thought I was taking the right avenues by getting scans to make sure there wasn’t a bleed, tumor, etc but was not started on any real treatment plan with meds until the last week or so. I hope it’s not too late to get out of this MAC cycle (been persistent for 2 months). I guess I’m sort of lucky that I don’t have any of these symptoms when I’m stationary. The difficulty/ delay with med treatment has been with trying to rule out any other underlying issues plus one nurse practitioner wanted me to start a med that i did not think I could tolerate with the heart rate issues. Praying for relief
I posted on here a few days ago, I know this is not a diagnostic forum, but I want to make sure I’m asking my docs the right questions and going to the right specialists (neuro vs ENT, etc). I am still uncertain if I have MAV or not.
I wake up feeling totally fine and when I’m sitting I feel pretty good too. I never have any headaches dizziness, light sensitivity, etc while doing either of those.
When I start to walk for about 5 minutes or so I get this increasingly dull pain in my forehead, feel unsteady on my feet (have never fallen),and have some difficulty concentrating (having fuzzy sort of thinking, almost feel water-logged).
I have menstrual migraines since puberty, but never had any dizziness, vertigo, etc with them and realize symptoms can change as a result of age.
Right now neuro says I have MAV, and ENT agrees but I’m just not 100% sure. Whenever I wake up I hear/ feel a light crackling in my face, almost like fluid is moving around but I’m not congested. I had brain MRI and head CT and paranasal sinuses were “hyper inflated” so nothing to really to go on there.
Does anyone think I should get more imaging of my sinuses? (Like specific CT of that area)? I had a root canal and gum surgery in 2019 to the right upper side of my mouth and I keep wondering is there any way I could have a latent infection?
Sorry for all the questions- just trying to see if anyone else has had only those three symptoms with MAV at any given time - forehead area headaches with walking, unsteadiness, and brain fog. I don’t have any symptoms while lying down or sitting up, it is so strange.
Thank you so much for anyone who could shed some light.
Don’t forget to use search and if I may say might have been worth asking each distinct question in a separate topic if existing topics had not existed. However there is much existing discussion on each.
The first part of your question is covered here in some detail:
Whenever sinuses are mentioned I always think @mav that’s Karen’s username Elizabeth not a reference to the condition! Shuffle through her posts and in case you don’t realise you can access those through putting any username complete with its @ into the Search just as you do with a symptom, say Tinnitus. Blocked Sinuses can cause vertigo certainly. A blocked nose will. Hay fever does me in every Spring. Dentistry can also cause dizziness and unsteadiness. I have a friend who suffered that for weeks much to her surprise.
With MAV you have got to be your own advocate and push. IMO anybody who can find a more specific cause than the MAV umbrella is on to a winner. They may just have hit on something with a treatable cure. The symptoms you do have may be strong indicators of something recognisable however you have to remember MAV changes over time. I have learnt from experience every time I say “I haven’t ever experienced that symptom’. I always add in that little word ‘yet’.
Thank you for all the very helpful information. I am definitely still learning how to post on the forum and whether I should add to my introduction or post a new question in an already established topic (seems like the latter)? I will do so going forward.
James - I will read about blocked sinuses and how that could possibly contribute to my symptoms. I will also read the link that you sent about movement and MAV.
Helen- you are so right on being your own advocate and persevering. I think one of the greatest challenges I’ve faced lately is finding a doctor who will actually listen to me. I trust I will find a better match and find some relief
Whether you pick up and re-run an existing thread or start anew depending on how relevant the archive threads are. When it comes to adding to your Introduction your next step might best be to start your own Personal Diary if you think you intend to post on through your MAV journey. Using the PD format you then add as a new post later updates and changes. You then have to bear in mind your PD is a record recorded chronologically so it makes easier reading for future comers. Any post you make which invites a lot of comments will defeat that objective and therefore are best set up as separate topics or adding to an existing one. I appreciate it is difficult to predict response in advance. My own PD will serve as an example, except particularly early on most posts are far too lengthy. Don’t worry. You will get there. Certainly worth having a look at and a think about the ‘Like’ feature. The little heart symbol. It’s a bit of a courtesy thing.
I wouldn’t obsess too much about which symptoms you don’t have. From all I’ve read people who are able to still jog etc and who feel better running than walking that’s indicative of a peripheral cause. From memory I think that’s how it goes however I suspect, some lack of what might seem more obvious symptoms is purely an indication that your vestibular system is less wound up into overdrive than some other peoples. Could be you are at transition stage from episodic to chronic. I had episodic totally self contained attacks for a decade and more between which Everything was totally normal. Then breakthrough add ins gradually appeared which affected my balance. However apart from during acute attacks I have had no trouble whilst lying down or sitting still. I think MAV comes in several forms. Some people experience a constant rocking sensation and it seems they are more likely to experience that sitting or lying and quite often seem to lose it when exercising. For others, like me, I would be worse on the move. Imbalance/disequilibrium whatever and even walking fast was impossible. These days how good I am on the move relates directly to how symptomatic I am at the time, I was reading only recently, in PT article I think, it’s highly unusual for people to be so badly affected that they need PT in order to learn to sit ie up at table so for non rockers particularly I think people would need to be very symptomatic for it to severely affect their resting posture. I have been personally but from the forum I have concluded that’s quite unusual.
Thank you very much for the information and the more I read and document my own symptoms, the more I realize there is so much variety to symptoms and they can change at any time. I think I have (incorrectly) assumed that I would have more tests/ procedures that would direct me to this diagnosis and then there would be a certain established (uniform) format as to how to treat. I know I went through the process of ruling certain issues out with MRIs and head CTs, but still feel dissatisfied that there aren’t more definitive tests for this diagnosis. That’s not to say that there aren’t many practitioners that have very systematic approaches (based on studies) and their preferences as to how to treat VMs but it really comes down to the individual and what works best for them based on their own unique biochemistry.
Just learning (very quickly) to be more patient and expect the unexpected. I think that is the hardest part of all of this - not knowing what my body is going to do next when it has functioned pretty well up until now.
It’s difficult to get over the fear/ shock of the unexpected right now. I called up my old therapy group to begin talking to a psychologist again as I know I need more support and have to stop all the “what if’s” and anxiety spin out of control.
Good on you! Great step forward. I’m working on my anxiety too… especially notice it gets bad when I start having bad days. Those unhelpful thoughts creep back and get me in a spin. It’s so hard as you say that when you have been healthy till now, it’s hard to accept this reality. I find myself watching others thinking how easy it is for them. And that was me last September.
Let us know what meds you decide on. I’m always curious to see what’s working and so on. You’re right with no uniform medication protocol. I would have thought the same too. It’s funny how doctors have different patient experiences, which then inform their own methods.
Yes I’m hoping talking to therapist will at least address some of the anxiety issues, which seem to grow every day as I come to terms with how long it may take to find an effective treatment plan.
I can tell you this depakote “burst” has been, shall we say “interesting.” After taking 500 mg (nightly) for 5 days, I didn’t notice much relief with my postural headaches and brain fog. Dizziness has generally dissipated in last few weeks - may be a result of less overall physical activity.
Re: possible depakote issues - over the weekend I noticed some strange hearing symptoms (almost sounded like someone turned up the treble on a radio). I also noticed I was getting these dull headaches at night right before I was supposed to take my next dose. It’s possible I may have worsening symptoms related to VM but just seemed very coincidental that these new issues started after 3 doses of depakote.
I contacted my neuro doc today (MLK holiday here in US yesterday) to ask if I should continue with the next part of this plan (which is to taper off of the depakote; take a pill every other evening).Well he hasn’t gotten back to me and I made a poor judgment call that I will not repeat again (embarrassed to admit this).
I was really annoyed with the extra headaches that I attributed to the depakote. So I didn’t follow the tapering plan religiously. In other words I skipped 2 nights instead of 1 evening as planned. BAD IDEA! As I was lying down feeling terribly today, I looked up the half-life of Depakote ER pills, I really think I made a mistake by not continuing with the tapering plan. I felt pretty horrible this afternoon (different type of dizzy feeling and nauseous - I’ve never had any nausea with any of the VM symptoms). Needless to say I hope I hear from neuro tomorrow and will continue with this tapering plan for the next week.
Good to know for the future. I would never advise anyone to disregard med instructions/ orders unless having a serious reaction. This was just overall stubbornness on my part, and will not be repeated.
You can edit posts by pressing the pencil icon. I’ve changed this one for you as I realise you are tired. Actually There’s no need to head up each post providing you have used the Reply button of the Post you are replying to the recipient automatically receives notification as will all other trackers. As soon as you feel able do try using the robot as James suggested. Probably the easiest way to get to grips with the software.