The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

I'm a newbie here. Are these MAV symptoms? And my brief story


#1

Hi, I never heard of MAV until about a month ago. Sorry this is kind of long, but I think it helps to get some context. I really appreciate any input you have, I’m a real newbie with MAV and I’m trying to understand if I may have it and what I can do about it.

Nov 2016 - took 1mg of methylene blue for nootropic purposes. Started to feel panicky a couple hours later. Heart rate shot up to 120 (my resting is like 55). Several bowel movements (no diarrea). Super hot and sweaty. Got no sleep. Next day felt like I had the flu or something. Within a few days started to notice weird head sensations, like swimmy/pulsy stuff, super lightheaded all the time. Every time I ate something the symptoms started again (super panicky and weird head sensations). This went on for about 6 weeks. Night sweats, severe anxiety, panics, went to ER, called an ambulance, etc… Watching TV was not possible for the next 5 months or so as it was way to stimulating. Lost a lot of weight (already skinny) because I had to eat like a rabbit nibbling things here and there. I found that simple bland meals like rice and meat and veggies eventually were okay.
Jan 2016 - Noticed I started to get dizzy periodically, started happening mostly when I was laying down, as I had lots of down time exhausted mentally. Never had real vertigo, nothing ever spins. I just feel uncoordinated with movements and balance is off. Makes me feel like something bad is going to happen, but nothing bad really does. Or, like I’m in one of those bouncy houses all the time.
Feb 2017 - Couldn’t function anymore due to anxiety. Decided to go on SSRI Paxil (as it once helped me before in college days). Anxiety shot through the roof with Paxil, had icy-hot sensation, depersonalization, couldn’t read books to my 1 year old without freaking out looking at the characters.
But it is normal to have increased anxiety on SSRIs for the first few weeks, so I kept going, 3 weeks turned into 6 weeks and by then I was a “little” better with anxiety and did NOT want to try to ramp down on this med after all the hard work I put in. But the dizziness seemed stronger and more constant now. I still felt awful and mildly depressed.
June 2017 - Need to get rid of dizziness, its the number one problem. I hate Paxil side-effects and doctors bucket me as “mr. anxiety”. Started tapering off the medication linearly.
Sept 2017 - After an awful 3 months of torture I was off the med. Brain zaps, panic attacks, etc, been through it all, but I felt it had to be done to remove the “mr. anxiety” stigma. I am now completely drug free. I can hardly believe I went through that.

NOW - And finally coming to now. I am taking 6 weeks off of work to decompress and analyze my situation. I’ve been to the ENT multiple times, this is what we did:

  1. Caloric test - wasn’t able to make it through the test, I threw up. I’ve always been motion sick easily.
  2. VNG - normal
  3. MRI - normal
  4. Spinning Chair test? normal
    They saw nystagamus-like stuff in the VNG but nothing conclusive, I don’t really understand all the tests they did I am working to make sense of them. But basically, the ENT says the cause is “unknown” and I should just do some vestibular rehab - which I am doing, actually the vestibular rehab does help and I continue that. I saw a Neurologist and after some reflex testing he said I was normal and probably the Paxil was just causing dizziness and it may take some time to subside.

My dizziness is getting less (SLOWLY over weeks/months), its really hard to measure, but there are definitely 2-3 hour periods sometimes now where I can barely tell my balance is off. I’ve started a low-tyramine and low-histamine diet, too early to tell if it helps much, but I feel less head pressure and better mood/cognitive function. Exercise is too scary for me, I feel like it starts amping me up again with anxiety. Same with salty/fatty/starchy foods - basically any food that makes me toasty warm and comfortable (sad face). Meditation helps, sometimes Tai Chi is okay but feels weird, I do basic stretching and range of motion. Sleep is not great, I sleep for a few hours and then toss and turn for the rest.

Overall, it was a rough year, but I’m hoping to get closer to root cause now and find some real help. The toughest thing I that I just thought it was all my anxiety, and so did everyone else. But I don’t believe that anymore. I haven’t really ever had much of an anxiety problem. So, it just doesn’t make sense to me. Yeah when my son was born - that was rough, but that was like a 1 on the scale compared to what I’ve been through. Anyways I’ll end it there, thanks for any input you can provide.

Does it sound like MAV? Or just severe neurotransmitter imbalance (which is another thing doctors say)?


#2

Hi, I’ve been viewing posts on this site for some time. Thought I’d give my update.

I do think I have MAV and I’m working with a Neurologist on it. There have been some improvements overall, but still have relapses and baseline symptoms that are slow to fade. I haven’t yet had a “normal” day, although there have been a few that have been close.

Symptoms that are largely gone:
*Motion and Light sensitivity
*Severe anxiety and depression
*poor sleep (thank God)
*Cricopharyngeal spasms (man I hated this for about 9 months, but it was mostly due to a Butterbur supplement -> silent reflux, although severe head pressure can do it too).
*restless legs at night

Current Baseline Symptoms (my normal-ish okay days):
*Head Tightness
*Lightheadedness and Woozy
*Off Balance but still able to do most any activity (did a front handspring the other day!)
*Difficulty feeling effects of breathing in my head, which is an awful symptom to have when breathing is supposed to be the best way to reduce stress and anxiety. I still make my outbreath 50% longer than my inbreath as much as possible during the day, even though I can’t really feel much in my head…
*not really feeling completely human or alive, almost dream-like in a bad way, if that makes any sense
*mild sinus pressure even though my sinuses are clear

Symptoms during bad days:
*Irritible and difficulty thinking, can barely deal with even small amounts of chaos or stress, things feel like they are just moving WAY too fast which causes anxiety and racing thoughts of course
*Strong head pressure that can be painful, but nothing like a classical migraine
*Severe difficulty feeling effects of breathing in my head (like my head and chest is filled with lidocaine or menthol), or I cannot get enough oxygen or something
*Slurring speech and difficulty with sentences, confusion
*Tight neck and back muscles, and deep head muscles around my temples and forehead
*Rocking boat dizziness (frequency about every 10 steps), floaty, moving super slow…
*Hopelessness, crying, depression, anxiety and anger
*poor sleep (with anxiety dreams). I kept telling my counselor “I swear its not my mind, its my brain…”
*weird pulse/pressure sensations in the forehead, behind eyes, and bridge of nose, with strong sinus pressure. Sinuses are always clear though.

What has probably helped over the past year:
*low tyramine diet (this is a big one)
*Accepting things as they are, getting better at handling stress (avoid Cortisol/Adreneline at all costs)
*quitting tobacco and limit 1 coffee per day
*regular exercise (jog 3 miles or weight training) every 1-2 days even during the bad times
*B2 + magnesium + coq10
*vestibular exercises, at this point I make up my own - which ever movements are most difficult I just practice doing them everyday. Currently its standing on one leg with eyes closed or slow Tai Chi stepping. Riding the bus to work is also very good.
*eat cayenne pepper or take a Fisherman’s Friend to reduce head pressure / pain
*massage when I can afford it

What I’m going to try next:
*verapamil per Neurologist advice, low dose (40mg) and increase from there each week to see what happens
*spend more time in a sauna

I find the real key is to tune into the baseline symptoms and watch them slowly get better over weeks/months. If I stray from this baseline, I know I’m doing something wrong. Usually the bad flare ups are when I do not adhere to the strict low tyramine diet or stress gives me some adrenaline/cortisol. Traveling is a double whammy - stress and cannot control diet as well.

I really appreciate being able to get on this forum to see others having very similar problems and symptoms. It’s been a long haul for a lot of us. When it all started for me, I had no idea a migraine was a possibility. I had severe head “pressure”, but with no real pain. People kept asking me if I have headaches and I always said unequivocally “no”. The dizziness didn’t start until about 2 months in of constant head pressure / anxiety. Everyone assumed that I was just having a midlife crises and panic attacks. I was totally bought into the idea that I just lost my mind somehow. Went to counseling and did the whole CBT thing just trying to get into work every day. Tried daily sessions of meditation for months while in severe migraine states, just thinking I need to relax - and yes my mind was relaxed but my body/brain would not follow. Psychiatrist was telling me everything was just psychosomatic. Mom/Dad were telling me it was just a midlife crises and that I might need to reconsider my life and career. Same with my wife. God, it was awful to feel like I was insane rather than suffering from a real neurological/physical problem. Well, its awful anyways, but I’ll leave it there…

Erik


#3

Erik, very glad to see you are making progress and it’s great to hear the forum has been helpful, it was a godsend to me. I dare say it’s probably saved lives.

Thanks for coming back and updating us.

Verapamil has a really good reputation, please let us know how you get on with it!

Yeah, the curse of the ‘invisible illness’.

Because I was off work for a long time and because I used long walks as a key therapy, my skin tone improved, so despite feeling like death I probably improved in superficial appearance in some ways! lol

James


#4

Verapamil is working well, my head pressure/ache is now mild and not debilitating except when I don’t mind my triggers. Still feel kind of numb and pulsy in the forehead and eyes. This heat doesn’t help, currently 82degF in my bedroom! Floaty dizziness is still there but it is less. Rocking dizziness is going away slowly, its pretty mild. Gaze stabilization seems to be helping a lot with dizziness so thanks @dizzy3 @Kell05 for pointing me to those exercises.

It took a while, but I’ve made it to 240mg of Verapamil. Going from 120mg to 240mg came big improvements even though it floored me for a while and made me tired.

Thinking of going up to 360mg to see if I get more improvement. But I also feel like I could just as well stay at 240mg for a while and manage. Any thoughts on increasing? Do you get much improvement by increasing at the higher end?


#5

So, another update. I’m up to 360mg since august. Things are better on average, but I get some relapses here and there that are frustrating. I have had a couple tough headache days lately. Was at the zoo yesterday and felt like a complete zombie. Might have been fighting off a cold. Dizziness is quite mild, I must say. Just some light/sound/motion sensitivity. Dang, if I could just get these headaches to leave…

One thing that has come up is my kidney health on my last metabolic panel. Looks like my BUN (hehe) and BUN/Creatinine ratio are both high. Not dangerously so or anything, but something I need to watch and figure out how to get them down. Anyone have experience with that? @flutters? It looks like Verapamil can do that, although its somewhat rare (1%). I hope I don’t have to come off it now! We’ll see what the Neurologist says. Although I might be ready to reduce it back to 240mg or maybe 120mg.

And now some rant/vent…

My Naturopath has been frustrating me for a few months now (probably mutual) and looks like she is going to change her practice and I will no longer be her patient. I really wish I could find a good GP, so now I’m on the search again… What does “good” mean? One that embraces the vestibular migraine diagnosis and works with my Neurologist to support me. Frustrating how little they try sometimes. I told my Naturopath to sync with the Neurologist about my failing lab results, she had weeks to get a hold of him but failed to do it. I personally got the lab results to the Neurologist today, so will see what he says. Also, my blood pressure varies between 110/70 and 130/85, I check it all the time. Its just a fact of life. But each time I went to see the Naturopath, she’d say, “oh it looks like your blood pressure is low now” or “oh it looks like its high now”. What a load of crap, depends on time of day, how much sleep I got, how much I exercised… etc… Last thing we tried was a gluten free diet. Said I had to wait 8 weeks and NOT try any other supplements. I did it, didn’t notice anything, feels like a waste of 2 months. And then today, at our last appointment she said she doesn’t agree with the vestibular migraine diagnosis! Took me forever to convince her that mag-citrate might be a better option than mag-glycinate (for bowel reasons). We argued about vitamin D supplements when I felt it was giving me pulsating tinnitus! I swear the fish oil she prescribed kept giving me eczema and we argued about that too. She never liked the Verapamil, and couldn’t understand how my blood pressure never dropped… uhg. Whatever, moving forward… Just ate two pieces of wheat toast with butter and it was bliss…

I don’t know if this is a bad habit or something, but I generally put up with a lot of crap before I give up working with someone. I guess I want to ensure that I’m not missing anything and give professionals the benefit of the doubt. I don’t want to fall trap into thinking I’m always smarter than all the doctors, or that I know everything because I use google! I’ve always liked Naturopaths because they listen more than regular GPs and think outside the box. They also tend to throw less drugs at me to solve things that could have been solved by things like Nettie Pots and the like.

Unfortunately Naturopaths also often become anti-drug and and too natural-dogmatic about how to solve problems, unable to work with normal docs, or have some sort of inferiority complex with them or something like that. The thing I liked about her though was that she didn’t go down the rabbit hole like other naturopaths. She didn’t give me homeopathy supplements and stuff like that, she was still science-based. And she was really trying. I think she was just frustrated that she couldn’t help me much. I think its time for me to go back to a standard GP for a while. Probably I’ll bounce between regular GPs and Naturopaths the rest of my life…

K, i’m done. Gosh, sort of like a breakup or something, but you know how it is when you put so much time in with a doctor to solve something and in then end seems just like a waste of time and everyone is frustrated.


#6

Hi Erik,

Rant accepted. My neuorologist is an RN. My GP is a PA. I gave up on the naturopath (same reasoning) and MDs (opposite reasoning). I’d say go with the ARNP route. They listen. They are open to a wide range of things. Best of both worlds. My GP quit the practice and they won’t tell me where she went. I just had her trained up, too. :frowning:

I’m supposed to go in today for another kidney blood test when I take Corbin in for his flu shot. Last one was good (June). One before that was horrific (March). The one in January was good enough to let me get contrast MRA. The one in September 2017 before that was not alarming, but not good. Mine is medication related, but maybe other things, too. Ramped up my water intake drastically to get that March diagnosis (Stage 3 chronic kidney disease and why aren’t you in dialysis) down to June’s just fine. I was supposed to go in and get another test in September. I didn’t. (Now hum, ‘she hides like a child but she’s always a woman to me…’). I pulled the salt down, too. I took a break from one of my more egregious meds, but added it back in because I need it. I don’t know really how to fix it, hence the hiding and pretending if I don’t get it checked, it won’t be a big deal. Sorry. Unfailingly human this one.

Em


#7

Neurologist says my BUN/creatinine is fine (slightly elevated). Likely just mild dehydration. Makes the most sense, I really don’t drink much extra fluids at all, feel like drinking extra water gives me more headaches. Whew! I feel better I don’t have to quit the Verapamil.


#8

That’s great!


#9

good rant, and glad you can keep using verapamil. I had a horrible headache today (still lingering) and I realized being dizzy is not as bad as the headache…


#10

Maybe fluid gives you headaches because it’s throwing your homeostasis off. Try adding in some electrolytes.


#11

Yeah, I definitely feel better with salt, maybe just add a bit of salt + fruit with the water or something like that.


#12

Ouch! Hope it subsides soon. I’m doing better today after some exercise, sort of hung over from my zombie headache at the zoo yesterday…


#13

Broth, miso and whole milk are good choices.


#14

My chiroprator who also has a masters degree in nutrition, suggested Pink Himalayan sea salt. I take a pinch every morning in my large travel glass of ice water, and add to it throughout the day. I do think there’s some benefit, She believes it helps balance electrolytes.


#15

I did that just a bit too much. Get a kidney function test to make sure you’re not too salty.


#16

Be careful with that, especially if your doctor is suggesting a diuretic.

No point taking a diuretic whilst also salt loading?

But we’re getting off topic here.


#17

Well I decided to try Topiramate in addition to my current 360mg of Verapamil. :grimacing:

First week at 5mg with slight improvement in symptoms and no bad side effects.
Started this second week at 10mg, still getting some improvements, but not noticing any bad side effects.

All good stuff so far! It also seems to really help stabilize my mood and stop my racing and jagged anxious thoughts. I actually feel quite a bit smarter on it so far which surprised me (-: It reminds me a bit like getting on an antidepressant I guess - feel a bit off, like too calm or numb or something. Anyways I think my goal is to get to 25mg and stay there for a while. I have a feeling that may be enough to finally get near 100%.


#18

goes to illustrate the point one man’s poison is another man’s elixir when it comes to MAV meds


#19

Erik I wish you great success!


#20

Great to hear that you are having success with this so far. Also, good for you for taking action when you didn’t feel things were satisfactory, even though you’d had improvement. It is fantastic that you haven’t had troublesome side effects. I hope things only get better.