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Stizzy's Dizzies

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: Sept 2019
Number & duration of acute phase(s): Too many to count some last 1 day; some 3 days
Any suspicious physical event/trauma leading up to dizziness: Serious ear infection 2015
Start of chronic phase: ??
Age at chronic onset: 37
Started medication: May 2020
Stopped medication: currently still on
Number & type of consultants seen to date: 1 Neurologist & 1 ENT
Diagnoses received (one I’m “running with” first): Migraine with brainstem aura and ocular migraines
Medications used successfully for MAV: Meclizine +low dose of Diazepam *currently on 50mg Topamax
Failed medications for MAV: Advil Migraine
Non-pharmalogical treatment tried which helped: none
Non-pharmalogical treatment tried which didn’t seem to help : none
Dietary triggers identified: working on this
Any hearing loss in either ear: Left ear
Persistent or intermittent tinnitus and character: left ear is a torture chamber
Other chronic conditions I’m suffering from: I don’t suffer from the chronic; I quite enjoy it :wink:
Medication I’m taking for other conditions: Omeprazole
Any personal history of migraines: yes, but not realized until recently
Any family history of migraines: yes, maternal side
Any history of ear problems: yes
How did friends, family, and doctors react to your symptoms?: Everyone is very supportive and helpful. My husband is desperate to help. I’m very lucky.

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get)
What’s Ongoing: (what symptoms you still get) vertigo, perpetual motion, light aura, ear problems
My Worse Day Now: (description of the worst day you get now)
Usually begins with excessive yawning, pressure/fullness/ringing ears, color change (light aura) blue/pink are my 2 main colors, then the dizziness set in, the boat starts rocking, at this point I have to “play dead” this entails lying perfectly still until the worst of the feeling passes. It comes in waves so I can come around for a minute or two, but then I’ll start floating away again and I’ll go back under. This can last any where from 1-3 days. I have a cane to get up to go to the bathroom when I can manage to actually be upright. My husband usually sets up an old twin mattress by the bathroom with everything I need within arms reach.

Rough History

(a bulleted timeline of your history from very first symptoms. Don’t make it too long, a “page” is enough. This is more freeform)

  • It all began when …I had a bowl of miso soup and sat back down on the couch. Started get a weird feeling like I was going to pass out…it kept coming in waves like I had eaten magic mushrooms (wet, floaty, slow motion, color aura), but I hadn’t. I knew I was in trouble.
  • The first thing I did …I called my husband, he was at work. He told me to lay down so I did. He called 911 and the paramedics came. They did not understand why I was playing dead, decided it was a “panic attack” and left. I went to the VA ER the next morning and they suspected Menieres (sp?) and put my head in the car alarm machine…worst day ever.

Start of Journal

Today I …had a pretty good day. The world went orange (this is a new color for me) before lunch but I knew I was feeling funny when I woke up, the top of my neck at the base of my skull hurt…that’s usually a bad sign for me. After lunch, I’m feeling much better. Still the underlying floating feeling, but it’s what it is. I’ve learned to live with alot of the symptom, hopefully one day, none of us will have to.

4 Likes

Hi, and welcome Um, sounds like we have staggered to different bathrooms together a few times :grinning::grin: if you get my drift. Know that feeling so well. You may well find my PD quite familiar. Good luck with your journey.

Fermented is the keyword here. Big trigger. Worth keeping in mind. You sound like a candidate for a John Hopkins Diet sheet. Helen

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Today is… colorfully crappy. Wanted to mow the lawn, but when I opened the door and looked at the sky, it was purple. Bad sign. My eyes started watering immediately so just nope. I’m allergic to the grass anyway; it’s only asking for trouble to go out and battle the many outside triggers…I’m a fighter, I love a battle, but I have a balance test on Monday so alot of helpful meds (anti-histimines/Meclizine) are off the table for 48 hrs so…shut the door on that.
Decided to take a shower, the white walls are pink…Strike 2. Familiar pain in the back of my head… slowly creeping to my ears, sends the left on off the register, makes my temple muscles so tight like I’ve clenched them all day…more eye watering, no. I’m not crying. Yet.
So, just a bust. I hate it when this happens because now I’m just sitting here with earbuds listening to true crime stories as low volume as possible, dark room, eyes closed, wishing the pain would just…float away with my balloon head, but it stays. The kids know mom’s sick, be quite, they come with sweet hugs and glasses of water, my cane.
Just one year ago, I was a strong woman…now I just feel like the shell of that woman.
Tomorrow tho… there is always tomorrow :metal::stuck_out_tongue_closed_eyes:

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I know now​:cry: when they first suspected Menieres, I went on the low sodium, no MSG diet for a month. I quit smoking 3 yrs ago and after I did I found out that I LOVE Japanese, Chinese, and Korean food and have since been trying to make up for all the years of not eating it. I looked at that Dr like "What do you mean no kimchi? No soy sauce? Nope. Come on husband. This man is obviously the devil!":joy:
The diet is something we are working on tho…and I will defo look into the John Hopkins diet.
Thank you also for your thoughts on the histamine post as well.

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Oh dear you will find the John Hopkins Diet a real struggle then. As a person who quit chocolate and oranges for ever at about 12 years of age I sympathize. As the doctors are so fond of saying ‘we are where we are’. True but how frustrating eh. When it comes down to it it can be purple skies and light sensitivity and foreign foods or ?? … Who knows but might be worth a trial.

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Sunday was the monster that I knew was under the bed, just waiting for my dizzy head. Thankfully it passed around midnight after I let the hot water beat on the back of my head for an hour in the shower…it was that or amputate 🤷
I’m glad I felt good for the balance test tho! I ab.so.lutely loved the Dr. that did my test. He was patient, kind and knowledgeable. He also spent the last 20mins of our appt doing what the neurologist should have done, which was explain migraine with aura (he even questioned that diagnosis), he also told me it was irresponsible of the neurologist to tell me my MRI was “clean” because there are white matter foci and he didn’t have a comparative MRI to put on top to match up; he said that is what makes an MRI “clean” is no change when you compare. I go back July 14 for my comparative.
He also said something I really needed to hear and that’s “What’s happening to you is very real.” I know it is, but I think it’s important to hear it from a medical professional. In this process, I have felt brushed off. The Drs comment that I’m healthy, young, my tests are normal, and it seems almost dismissive sometimes. This man was not and I wish there were a hundred more like him out there for us! He said he couldn’t diagnose me, but to call before my ENT appt because he wants to talk to her before I go… I’m very hopeful.
I’ve noticed the Topamax has significantly stopped helping as I’m back to taking Meclizine (sometimes even a Diazepam) multiple times a day to stay upright, and headaches almost daily, makes it hard to stay positive. I will probably head over to the recovery stories for some motivation :revolving_hearts:
I can’t give up tho…I miss myself too much.
I wish you all healthy days, and hope the dizzies stay away!!

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Very interesting post Stizzy, very interesting indeed. Questions though … Which doctor was this? A neuro, a radiologist or some other … He cannot diagnose? Did he say why?.. Comparative MRI … He is going to take another of your brain so he has two to compare? Have I hit upon the right idea? … Not heard anybody in UK say that but here you are very lucky to get one yet alone two and that’s even paying yourself, state medicine won’t always cover one. ‘white matter’ my understanding is we all have a certain amount of that. Very common in migraineurs apparently and in older people and in people with certain conditions for example MS though reassuring they can tell the difference quite simply. Here when they say ‘clean’ or ‘clear’ what they mean is no nasties (brain tumours, etc) nothing relevant to the condition under discussion. Maybe it would be different where you are.

How you established the Topamax has stopped working please? You have only been taking it a while. Did you have to stop prior to balance testing? No preventative will control all symptoms all the time initially if ever and particularly not with extensive exposure to triggers thrown in in form of balance testing. I would suspect it’s just a blip. Or could be a reaction to the MRI experience? I spent 8 days flat on my back unable to stand after mine. It wasn’t so much the MRI in itself. I had a long car journey there in very bright light too preceded by a very early rise, had to be up at 4.00am to get there on time. Just threw balance into turmoil.

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Aug 21st and all is well!! I have been away with vacation and getting kids back to school!
The 4th of July was my last big spinning out of control episode. Unfortunately, it lasted a week. It came on with an aura I’ve never had before…on the 2nd, my left leg went all buzzing and I fell down as I tried to step out on it. When I tried to tell my husband that I couldn’t feel my leg, my words came out… wrong, weird like " imma noga neg". The next day brought alot of light aura, sparkles and colors, black blobs. Then the 4th the vertigo laid me out, it was the most intense it’s been. The Cosmic Rollercoaster. That lasted 3 days before I could stand up and walk on my own, another 2 before I could get around with my cane.
I had my follow up MRI the Tues after, now I have a comparative that they can say shows no change. The thing that happened after that tho is new also. I started getting this other headache in my left temple, it comes on fast and it’s a sharp pain…almost like a when a blood vessel pops (like a vericose vein). When it happens I have to lay down and go to sleep, the headache isn’t so terrible, but the fatigue is instant. Very strange. The dreams that come on with this headache are very intense, and very real. I hate them. I usually don’t sleep well, I have PTSD from my time in the Navy (I was in the OEF war theater for over a year) so the fact that I can instantly fall asleep during the day, stay asleep, and have dreams that I remember is not normal for me. At. All.
The neurologist says it’s a common with basilar migraines 🤷 I have to trust him as I’m just learning.
I’m on an elimination diet…no coffee=no fun, no kimchi, no miso, no marijuana…who have I become :sob: but, seriously, I’d do anything to make this stop.
They upped my Topamax, I’m noticing my aura symptoms are back down (the internal buzzing, light aura) and now on the migraine cocktail of magnesium, B2, etc. The neurologist is trying to get me on Ajovy, but he says the VA probably won’t approve it because it’s too expensive.
I’m just grateful to have a few answers and a direction to go to look for answers.
I hope you are all well, and I’m glad to be back around…not around in circles :wink:

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Had a small episode on the 24th…I had vertigo when I went to bed; I kept feeling like I was falling backward thru the bed even tho I was already laying down. I ended up sleeping in the recliner. The spins lasted til lunch; I started feeling better after a big nap. I had a big big headache after. The headaches are new for me…I thought it was strange when I was first diagnosed with migraines because I never really had “headaches” but now I have them daily…all day long. No matter what I take, can’t shake them.
Still working on food/environmental triggers. I’ve went as far as starting to only drinking room temp water to see if ice cold was causing the headaches. I said I’d try anything 🤷.
I’m going to go look around for some headache cures…my sassy neurologist isn’t much help in this area as he tells me the headaches are normal and prescribed me naproxen…I laugh in the face of naproxen!!
Not too loud tho…and maybe turn out the lights :shushing_face: Hope you guys are having a good day !

MAV just morphs. Dizziness to Vertigo of vice versa. Then often the constant dizziness will stop only to be replaced by Chronic Daily Headache. As I said previously we seem to share most MAV experiences you and I. I had those type of Vestibular attacks for about a decade then other what I would now consider ‘migraine’ typical symptoms (light and sound sensitivity, read head pressure, ear pressure) gradually added in. The rear head pressure, deemed ‘migraine equivalent’ by a neurologist, became permanent about the same time the dizziness became chronic, 24/7, and lasted several years. Eventually the other migrainey symptoms joined in later. Please don’t leave your condition to become totally chronic. Get back to your medical provider and discuss increasing the Topiramate, adding in Amitriptyline or Propranolol both of which are great for the headache aspect and please do it soon. It must be so much easier to get under control whilst your system still retains the ability to reset itself.

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Yep, I’m increasing the Topamax 25g weekly until I’m 150mg daily. Almost there now. I don’t get back to the neuro until December. I do not want to become chronic so I appreciate your concern, thank you.

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hi, just a quick thought. Propranolol is used for migraines, and I can say that my headaches stopped almost right away, but it is also being studied for PTSD, so I thought it might help you with both.
Hope you feel better soon.