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

Musings and Sometimes Funny Stories

Summary

Just to begin, my name is Emily. I was born in 1973, which makes me 46 as of the time of this writing. I’m a Caucasian woman of the short, round, blond, blue eyed variety. I’ve lived all over the US but have called Washington State home since 2003. I live in Puget Sound.

First acute balance issues: Balance was already on the way out with dizziness since my 20s. I first started Vestibular Rehab Therapy in 2018 to deal with disabling visual vertigo that meant 15 minutes of screen time resulted in intense nausea, vertigo and fatigue that took days to recover from. The truly acute phase began with a week long, rolling brain stem aura whopper of a migraine in September 2017. The ER IV cocktail brought the pain down but my vestibular system never recovered. VRT and medication have improved that greatly. I now have little practical limits to screen time if I observe proper MAV lifestyle hygiene.

Number & duration of acute phase(s): I’ve had chronic symptoms for 20+ years. A mildly acute phase started in 2015 and lasted to spring 2017. A truly acute and disabling phase started in September 2017 and is on-going.

Any suspicious physical event/trauma leading up to dizziness: No.

Start of chronic phase: I have never known life without some MAV symptoms. It became most evident in my early 20s. It became disabling in September 2017.

Age at chronic onset: 20

Started medication: January 2018

Stopped medication: N/A

Number & type of consultants seen to date: 2 neurologists, 1 ENT, 1 neuro-ophthalmologist, 1 audiologist, 1 VRT physical therapist, 1 atlas orthogonal chiropractor, 1 Rolfing massage therapist, 2 general practitioners, 1 homeopath, 1 counselor

Diagnoses received: Vestibular Migraine, Brainstem Migraine, Visual Snow Syndrome, Vestibular Paroxysmia

Medications used successfully for MAV: Venlafaxine though I discontinued when it became clear that was the source of both suicidal ideation and my increasingly bad blood results (from weight gain and the nature of the drug with respect to glucose metabolism). I’m currently trialing a very low dose of Propranolol which I use as a direct replacement for my prior beta blocker. Rescue drugs of choice are Fioricet, Compazine, Meclizine and cannabis.

Failed medications for MAV: Topirimate which made me feel and look like I was dying of radioactive poisoning, Amitriptyline which gave me high blood glucose and exacerbated other co-morbid conditions.

Non-pharmalogical treatment tried which helped: Nutritional ketosis, regular exercise, Petadolex, Dolovent

Non-pharmalogical treatment tried which didn’t seem to help: various herbs and supplements

Dietary triggers identified: Caffeine

Any hearing loss in either ear: Right ear, in the high Hertz ranges from botched surgery

Persistent or intermittent tinnitus and character: Intermittent left; high pitched, continuous whine on the right since March 2017.

Other chronic conditions I’m suffering from: PCOS, Endometriosis, TMJD, Eustachian Tube Dysfunction, Atlas Subluxation, Hypothyroid, High Blood Pressure, Metabolic Syndrome, impaired kidney function, major pelvic and lower abdominal surgical adhesions and Pelvic Symphysis Disorder, Neuropathy, bunions (see my graph below which I created to shorten intake appointments)

Medication I’m taking for other conditions: Levothyroxine, spironolactone

Any personal history of migraines: Yes, starting in 2014 on a chronic basis.

Any family history of migraines: Both parents though Mom only had it once or twice.

Any history of ear problems: Eustachian tube disorder and I imploded the left ear drum on a flight descent when I was a teenager (my personal standard for intolerable pain). I had ear tubes placed March 2016.

How did friends, family, and doctors react to your symptoms? That’s what therapists are for.

Ok, that’s the basics. Later I’ll muse. Or be amusing.

5 Likes

I find it crazy that most of us not only share the MAV diagnosis but other chronic conditions as well, I’m 30 and so far share with you the pcos and endometriosis …sometimes I joke and say I’m a 90 year old lady trapped in a body of a 30 year old one

4 Likes

My theory is that a lot of this is on the same stretch of genetic code. That doesn’t make it less of a bitch, though. I feel you there.

2 Likes

This is neither a musing, nor meant to be amusing, though sometimes I just am.

It’s a detox update. Today marks the beginning of my third week off Effexor after a rash decision to go off cold turkey (US for quit without tapering). Failing to refill an Rx was an easy excuse.

Read my other post Thoughts from the Dark Side for the whys.

I’d been on 37.5 mg XR for maybe 13 months.

The first week off was the hardest. All the Effexor withdrawal symptoms are basically my experience of MAV amplified.

Withdrawal symptoms from coming off venlafaxine include brain shivers, agitation, anxiety, confusion, mania, mood swings, anorexia, impaired coordination, dizziness, fatigue, lethargy, headaches, night tremors, tremor, sensory disturbances, electric shock-like sensations, vomiting, vertigo, sweating, diarrhea, dry mouth, involuntary muscle twitches, hypersomnia (drowsiness), hypomania, depression, vision problems and weight gain.

The worst were these brain spasms that came with booming sounds and pain and the feeling of an electric current running thru my brain for maybe a week. That all went away and was replaced by a mild MAV dizzy and some painful classic migraines without much aura except for my most common symptoms of neuropathy, mania and some interesting verbal stuff. It’s hard to talk when your brain is going a million miles an hour, feels like a beehive and your face and tongue are numb. That’s not entirely Effexor withdrawal, that’s my usual brain stem aura issues - only just the really mild ones. I’m sure some of the others with BAM here can attest to the varied and crazy stuff a truly ripping brain stem aura migraine can do. I’m ADHD of the attention deficit type, so mania is kinda baked in anyway. MAV blew the lid off that.

I’m now in a pretty good space. Before I quit Effexor I’d wake up ok, take Effexor and then nose dive. For the last few months I’ve felt like Effexor was doing the exact opposite of what it was supposed to do. I felt much better without it.

I used to have a huge Vitamin D deficiency. I was on massive doses of Rx Vitamin D for about a year. After a while, I filled the well. Now I take a regular over the counter supplement at a moderate dose just to keep the well topped off. I’m kind of wondering if that can be true of serotonin, too. In the end Effexor felt like an overdose. I just started feeling worse all the time, weight ballooned and I started getting really dangerous thoughts.

Baseline can take a long time to find as neuron ends regrow and serotonin falls. I don’t know when or what level of MAV that will represent. I’m not well, especially as another migraine is blowing in like a storm front, but I’m definitely better than I was. I’m happy, optimistic in a cautious sort of way.

And, for the first time in a year, I have a healthy fasting glucose and measurable ketones in my blood. Plus, yesterday, I lifted weights and went for a jog. Finally I don’t feel like I’m carrying a heavy load. Even with the Effexor weight gain I feel lighter in body and spirit.

4 Likes

So great to hear Emily :slight_smile: I didn’t realise the Effexor was making you worse I thought it was helping ??

I am so happy you are in a much better place now

1 Like

It was helping, for about 11 months. Then it stopped helping and eventually made things worse. Though, these daily classic migraines since I quit Effexor are suggesting I ought to start thinking next steps.

What’s happened with the Propranolol? Helen

I’m only at 60 for the past 5 weeks. I see my GP Wednesday. She doesn’t know MAV. I guess it’s time I visited my neurologist. She doesn’t really know MAV, either. I’m generally the one who tells her what treatment protocol I want to try next.

1 Like

If only you could put a ‘1’ in front of that 60 might just be ‘bye, bye’ classic migraines if I’m anything to go by, providing we, you and me, accept my vertigo attacks are migraine equivalents as the Migraine specialist neurologist I saw told me. Wonder if your other conditions would accept that much more. Helen

1 Like

I do think you’re a migraineur, with or without headaches. Migraine is a disturbance in the central nervous system that affects any part the CNS controls. I’ve had many, many migraines that don’t necessarily involve headache but they do have a smattering of the many aura symptoms.

I looked up propranolol. I think my various other issues will be ok. The only study I could find linking it with the word diabetes was to say that sometimes it brings down glucose. That would be fine. It doesn’t appear to be any more dangerous to my kidneys than any other drug I could substitute. Same for liver function, which has at times been sketchy for me. Too many drugs for too many things for too much time.

I’ve been monitoring my BP and pulse. I miss the metronome qualities of athenolol. My pulse liked to sit at about 49 but I could get it to rise into the cardio zone easily. Now it’s at 60 and I have trouble getting it over 130 even when running. My BP is just fine, so I think I’m good to titrate up.

So sorry Emily , so is it more headaches now than dizziness ?:grimacing:

Don’t be sorry, this is MAV-light. The dizzies are fleeting for the most part. I rode my bike twice this weekend and was fine. I had trouble at the dog park walking around in super thick wood chip mulch. The wood chips were visually noisy. I would have been fine if I could have done the eyes to the horizon thing, but it’s a dog park. :poop:

The worst thing at this point is the mania. My brain gets to flying too fast to keep track of the ground or much of anything going on around me. That sensation tends to make me dizzy. And my eyes are blurry. The headaches are alternating with the mania. So, sometimes I’m buzzed past coherence, sometimes I’m totally fine, and sometimes there’s an ice pick sticking out of my eye. I like the totally fine really well, but I’ll take the pain. Pain focuses my mind and lets me think. Which is good for a busy Monday.

Great news. Yep, it certainly knocks the pulse. Mine was 51 last time I took it. Ages ago I did read a paper saying Propranolol actually did good positive things for osteoporosis. Might prove a bonus. I just hope you have as much success as me with containing the acute attacks. And, who knows, one day you might even be able to put those Theraspecs on Ebay. Helen

2 Likes

This would be a musing.

We MAVericks are tough. We’re warriors. That occurred to me today while at my latest God this is painful; I sure hope it holds until next week physical therapy visit. We have to be so damned tough to just get through and function.

Ok, so I brought a lot of today’s enjoyable all over pain on myself. The mental exhaustion is just as much a part of my penance for the fun. The visual snow set on blizzard is sort of pissing me off.

I had fun, a whole big Memorial Day weekend full of fun. Up here in the Pacific Northwest, we refer to a certain species of male as the Northwest Action Figure. He’s tall. He’s fit. He’s muscular. He’s tan. And he’s ready for whatever nature throws at him. Don’t marry that dude. Mine is a transplant from Florida, but a NW Action Figure all the same. My love for that man, or more specifically, my penchant for watching the back of him get ever smaller as he advances up the trail or across the water, is probably the reason I was successful in VRT. I just never stopped following my man around - on his motorcycle, on a bicycle, up a trail, on snowshoes, in kayaks. Where Kevin goes, Emily follows - really slowly.

Saturday was NW rainy. We took a 9 hour car ride to fill in the ‘here there be dragons’ part of the map near Lake Cushman on the Olympic Peninsula. It was a Meclizine, Compazine, let’s take a lot of breaks from the car and then an abrupt nap sort of trip. I was surprised my neck held up. Pretty, though.

Sunday we biked 14 miles/22.5 km up a rail to trail on the incline in a strong headwind up to a nearby town for brunch, then biked home (so 28 miles/45 km round trip). Stupid wind shifted and was in our faces both ways. That’s kind of common for this valley. It’s a mid-day shift that must have something or other to do with the Pacific Ocean. Mostly I was ok. MAV doesn’t love strenuous activity, and that last three miles north was tough. I guess I maybe could have broken my 16/8 fast a bit early and put some fuel of any kind in my system before attempting that slog. But I’m mule stubborn, so of course I didn’t. No food, but I looked really cute in my new skort. Even a middle aged fat chick gets attention bike riding in a skirt. :wink: The worst bit is a portion of the trail that’s heavily rutted with a lot of cracks with weeds growing out of them. Doing that with my usual MAV 2D technicolor vision with hallucination extras was a bit harrowing. It’s a lot like running full out through a surrealist obstacle course. 17 miles an hour (27.4 Km/hour) and the aforementioned large swaths of naked skin provided just enough fear based adrenaline to keep me from completely losing track of the ground. But marshmallow floor while on a boat is a strange place to go biking.

Then yesterday we went hiking up to Teneriffe Falls above the North Bend valley. That was really tough. I’m used to hiking, or I was before Effexor gave me 26 extra pounds (11.8 kg). I’m not used to hiking without much of anything in the MAV prophylactic arsenal in my system. Yesterday was the first day I really missed Effexor. And I missed it bad. This trail isn’t too long - just 5.6 miles (9 km) round trip. And the gain isn’t as huge as some we do (1,585 feet/483 meters). But the last 850 feet/259 meters of gain comes in the last 0.9 miles (1.49 km) via 22 switchbacks. So, it’s a bit steep. I did break my fast just a tiny bit early, though well into the hike. (Slow learner.) The hard part of that one was the scree fields and rock gardens. Marshmallow floor where the ground actually is moving, as sharp rocks shift under your feet next to steep vertical drops ending in more rocks. In dappled sunlight with a lot of folks walking up the trail towards you and down the trail coming fast behind. MAV hated that. Meclizine failed to keep my x/y axis from swinging wildly. Compazine held it together, but by then I’d lost feeling in my hands and couldn’t hold on to my walking stick. Really no idea where the ground actually was at any given moment. Fortunately, while I did roll both ankles enough times to lose count, I failed to kill myself or end up bloody and bruised. So, successful hike. Kind of wished I’d remembered I was drugged to my teeth before inhaling the beer and then waiting a half hour for the food to arrive. Another abrupt nap on the car ride home. My husband seems to be ok with my total lack of ability to be good company. Your brain gets so tired using the executive function for something that should be autonomic. Add a few sedatives and well… Here’s some more PNW eye candy.

tenerrife%20falls

My PT asked how we’ll ever work on the issues I came in for if we’re always playing catch up from my adventures. I told her I’ll work harder, to pay for more visits, because I’m sure as hell not stopping adventuring. I live in God’s playground. MAV may be along for the ride, but I’m firmly in the driver’s seat. (Except on the car ride home where Kevin’s driving and I’m having a hard won snooze.) We MAVericks are warriors!

6 Likes

@flutters I want to be like you when I grow up …adventures??? Getting to the freaking grocery store is my only adventure now these days, you are truly a warrior

3 Likes

I’ve had those times when the grocery store was overwhelming, as was ordering groceries online. Just keep pushing forward. Know your boundaries. Exceed them a little bit. Take back more of your life. Be like a glacier - push forward slowly, inexorably. Pull back when you’re over your limit, but then come back for more later. Never go over 20% worse than you felt when you started. (I totally let pride ruin that rule yesterday, by the way.)

2 Likes

I agree with @Diana21… I admire you so much @flutters!
The landscape is absolutely intoxicating there, just stunning!
We are indeed warriors Emily, stronger than we ever knew we could or would have to be. You’re an inspiration my friend! :sparkling_heart:

5 Likes

Honest to God, I’m just following my NW Action Figure around. I refuse to be left home doing nothing but navel gazing and cursing MAV. MAV can come along and curse at me. I’m still going.

4 Likes

Love this :point_up::star_struck:

2 Likes

I’m liking this personal diary concept. I guess I needed some place to just openly ponder. Thanks, James (@turnitaround).

It’s 9:30 am in Puget Sound and I’m at my desk waiting for MAV to let up and let me think. That’s an everyday thing. I’ve sucked at mornings my whole life. But then, I’ve had MAV and PCOS my whole life. I tell all my clients if they want someone smart and professional, they’ll have to wait to call me until after 10 am. Today, that’s clearly gonna be more like 11 am or noon. Visual snow, visual vertigo, numb hands, stupid mind - good start for a long workday doing tough mental work on a keyboard.

The 16/8 intermittent fast I’ve been at for a week and a half or so isn’t helping with the morning problem. If I ignore hunger it will go away, my glucose will figure itself out and I’ll be fine in a few hours. I’ll just keep reminding myself of that while I drink my black decaf coffee and hope for some Pavlovian response to a stimulant that’s no longer there. Not that it matters. Like a lot of ADHD folks, I react the opposite to stimulants. Too much caffeine always makes me groggy and tired. It must be a mental thing that makes me miss the caffeine.

So, I guess I meant to write a detox update. The original thought that steered me here has evaporated. Ah, MAV, keeps me guessing. PCOS is so boringly consistent in its treatment of me. We tolerate each other like bad neighbors. MAV likes to barge right in and ply me with vexations.

That said, I’m actually doing pretty well lately. Well, once morning has gone away and my biochemical factories get rolling for the day. Today marks the end of the fourth week since I quit Effexor. All of the Effexor withdrawal symptoms are gone. I felt some pre-migraine mania yesterday, but it was mild and so was the later headache. I got it to go away with some moderate exercise. No more brain zaps. My digestion seems to be in a better place than its been in years. Even the daily classic migraines are mostly gone. MAV is mine to keep, but it’s been really mild this month. Don’t know where baseline is, but the free fall to get there hasn’t been so bad so far.

The best thing is that I’m no longer feeling out of control and desperate. One big cry this month, but it was cathartic and necessary. (I’d had a really bad day, all this stuff had been building for months and my sweet, totally not meaning to hurt my feelings NW Action Figure suggested a pragmatic solution for losing weight after I’d just quit Effexor for that very reason. I completely lost my shit at him. That turned out to be a very good thing. I’m usually so private about things, he wasn’t aware of where I’d been emotionally. I think maybe I tell you guys - the whole English speaking MAV world - more than I say verbally. This forum is both anonymous, and not, which for an introverted person like me is a real blessing. A whole lot goes on under the surface of my deep waters.) Otherwise, no sudden crying jags for no reason. No tears right below the surface. No suicidal thoughts. No feeling like I’m caught in a whirlpool. I’d been swirling that drain for months. This newly restored sense of control and stability has been just huge for me psychologically. I can be pragmatic about MAV. I can follow the protocol. I can be optimistic and sanguine and accepting. But I just can’t handle feeling like nothing I do makes a difference. Effexor made me feel trapped in the end - caged and helpless, totally vulnerable to self-harming thoughts and out of control weight gain that was killing me. Now I feel like I have agency again.

If you’re wondering why I’d add another layer to my morning disaster routine with Intermittent Fasting, the reason is I finally have a sense of control. I’m no longer starving all the time or craving carbs. I can stick to a ketogenic diet, which gives me a clear mind and makes me feel energetic. Effexor wrecked that. So did Amitriptyline before that. Now, while my blood ketones are too low to be therapeutic, at least they’re measurable. And slowly the scale appears to be going in the right direction. Slowing down a locomotive is hard; getting it to turn around is harder, particularly with PCOS. I think I might actually be going in the right direction for the first time in over a year.

My husband (the lovable NW Action Figure) and I talked about it yesterday. He is built like a greyhound - sleek and muscular. (Yum. After 30 years I still find him attractive.) I’m built like a pug. Short, round. He told me yesterday, and he’s said it many times, that its ok if I want to obsess on my weight provided I have good reason. Aesthetics don’t count. He likes me the way I am, whether that’s a trim little plug of a pug or a round little ball. He cares only that I’m doing everything I can to be healthy - moderate, consistent and frequent exercise and eating in the way that makes me feel best and promotes long term health. He’s such a good man. And he’s right. I’m currently doing intermittent fasting, eating mostly ketogenically and exercising to a level MAV can handle. I don’t expect much in the way of weight loss. That’s always been extremely hard for me given PCOS. But I am feeling really pretty good right now, psychologically and physically. And I finally feel like I’m in control of something - what I eat and when. Effexor took that away. I took it back. And I lost a couple of pounds.

So I guess this is a detox update. Effexor was a miracle until it wasn’t. I’m glad I had it and I’m glad I left it behind.

4 Likes