Hi everyone! Ive been lurking and decided to make my first post

Courtney · June 10, 2020, 1:28am

Well, hi! My name is Courtney, I am 26 years old living in Texas and just about 6 months into this crazy journey! Ive been “tentatively” diagnosed with VM by my ENT, and waiting on my appointment with Dr. Beh in Dallas, TX in October to confirm. I guess I can start with how everything happened, if this is long I am SO sorry. I just have a lot to say

It all started early December 2019, right after my 26th birthday. I went and got dinner one night and just felt so “off”. Lightheaded, pressure in head, derealization. I thought it was just because I was tired and overworked and continued to trudge through the day. By the time the day was over I had a sore throat and a migraine, and by the next day I was super sick. Some kind of virus unknown, not flu, not strep, couldn’t figure out what. I spent a week feeling this way and did a pretty strong course of antibiotics and steroids and started to feel a bit better. Five days after the onset of symptoms was when my life changed as I knew it. I was hanging out in bed and started having the worst anxiety ever. I took .25mg Ativan and tried to rest. About an hour or two later I still couldn’t shake the feeling. I headed to the bathroom and by the time I made it I had to physically hold on to my bathroom vanity as to not float through the ceiling. I thought to myself “This antivan is laced… the pharm messed up my prescription”. I thought I had overdosed. I genuinely though I was going to die. The dizziness didn’t stop. Ever.

The next day I went to work and had another attack, and this time I thought I was suffering from withdrawal to my steroid. I was so dizzy and the derealization was so intense I felt like I was floating… During the next week my symptoms intensified and changed rapidly. I went to my PCP who told me it was migraine (I lol at myself for being so mad at him for saying that now), I went to the hospital twice with complaints of head pressure so bad I couldn’t even stand wearing my glasses, I felt like my head would explode out of my ears, serious sound sensitivity, light sensitivity, nausea, dizziness, lightheadedness, didn’t feel “real”, felt like I was floating, swaying, having surges of adrenaline in my sleep followed by anxiety attacks, fatigue, ringing in ears, stiff neck, neck pain, floaters in my vision, static vision, blurry vision, brain fog, couldn’t focus my eyes, stomach pain, and probably more I can’t remember. My first visit I was told I had a sinus infection (lol) and the other time they kept me for 3 days and tested me for meningitis. I was sent home without an answer. I cried and cried and cried.

The next few months from December to late February were so bad I only left my house for doctors appointments. I had all the same symptoms as listen above, with some new ones as well, including terrible migraines. I saw my PCP 2 more times, he basically told me I was crazy and to go back to work. I saw an ophthalmologist and a neuro-ophthalmologist. I saw a neurologist who did an MRI and CT scan and told me I just had migraines and put me on Depakote, which did help the pain component. I saw my ENT a couple times and he threw out the diagnosis of labyrinthitis and Menieres, both of which he revoked. Saw an audiologist and had a VNG testing, spinny chair, had my hearing tested, the works. My ENT said my results were “beautiful” (even though I snooped and my results showed slight abnormalities in my right eye [if I read it right lol]) He referred me to UT Southwestern, and now I wait to see Dr. Beh

Currently, Im still not working. I went back a total of one day and couldn’t handle it. I was serving at a restaurant before this, and there are just too many lights, sounds, smells, and visual stimulation that I just can’t handle. Some days are better than others, but most days I still only feel maybe 50/60% Im stilhaving constant, 24/7 symptoms with attacks often varying in intensity. I’m not on any medication or supplements at the moment. I am terrified to take anything, even magnesium, for fear it will make things worse. My symptoms have changed and gotten worse/better. I will list those at the bottom of my post! I am so happy to have found such an awesome community on instagram that I can talk to. If it wasn’t for them (and finding this forum) I may not even be here today to type this. Having found others like myself has made me hopeful of my future. If you’ve read this long, well you deserve a white chocolate chip cookie! No, but honestly, thank you so much for taking the time to read this if you have, and I look forward to speaking with each and every one of you!

Symptoms: Swaying, rocking, feels like I am walking on foam, fatigue, legs feel heavy, sleepy eyes, pressure in my head/face/ears/nose, occasional ear pain, ringing in ears, whooshing in left ear, blurry vision, visual snow, neck pain, stiffness in neck, stiffness in head, sore shoulders, sore upper back, internal tremors that come and go with attacks, nausea, light sensitivity, sound sensitivity, occasional odor sensitivity, clumsiness (I say I have the “dropsies” as I drop a lot now), dry mouth especially before attacks, dry eyes especially before attacks, teeth and face feel like they vibrate, trouble focusing eyes, brain fog, word hunger, feeling as if I might faint, derealization as if I dont even exist/life is a dream, anxiety, trouble in stores with fluorescent lights, mental fatigue, imbalance, some joint pain (I have a habit of locking my knees up when I sway), headache/migraine, ataxia, pins and needles… did I miss anything?

Im so excited to connect with you guys!

turnitaround · June 10, 2020, 5:05am

Welcome Courtney! Your symptoms sound extremely familiar. Good luck with finding the right regime and getting on top of the monster! (You can and will do it!)

Onandon03 · June 10, 2020, 9:42am

Some very vibrant descriptions there. Welcome to The Gang. I think, when you eventually land, you will find you are right on target. Many on here will totally relate to your initial post, me included. In fact I could have written it, except I probably wouldn’t have had enough patience. My experience with MAV has been so very similar. We have even followed the same well trodden path in most ways even though I was much older at the start and live the other side of the Pond in the UK. You can read my story in the Personal Diary section if you like when you’ve an hour or two to kill. Good Luck with your journey and btw don’t worry about the right eye anomaly. 5% of the general population have some slight visual difference and I’m not talking about the need for prescription lens. That percentage rises to 20% I think it is amongst migraineurs. There may be some connection with the condition but from my experience it won’t stop you gaining control over the condition in due course.

Courtney · June 10, 2020, 4:11pm

Thank you! I believe i will as well! If anything this has taught me patience because i really thought i’d be healed in a month and back to my normal life

Courtney · June 10, 2020, 10:30pm

One thing this whole situation has taught me is patience! I had none and now i’m slowly learning lol! I do look forward to reading your story, i always have a few hours to kill these days! I’m not so worried about the weird right eye, i didn’t like getting a “tentative” diagnosis. I feel like i shouldn’t accept it as fact until i get a “concrete” diagnosis. I still feel scared wondering if it’s not migraine, and something else entirely. Thanks for taking the time to read and reply :’)

Onandon03 · June 11, 2020, 8:21am

Well don’t hold your breath waiting for that ‘concrete’ diagnosis because with MAV and many other vestibular conditions they don’t exist. It is a diagnosis of exclusion. There are no definite tests. I have had active MAV since 2003 and the nearest I have ever got despite seeing a neuro-otologist, a specialist migraine neurologist, a handful of ENT consultants, several balance therapists of various types, not to mention a similar number of eye specialists, is ‘Probable’ MIgraine Associated Vertigo. Subsequent developments seem to have proved my diagnosis to me. Some doctors will say if the preventatives work it was MAV that you have.

aehailey · June 13, 2020, 3:26am

For the last 5 years I have been trying to describe what I’ve been feeling; this floaty/unreal/not there/dizzy/rocking feeling and you put it perfectly! “Derealization”!!! I’ve been really struggling and feeling like I’m crazy (also been told it was just anxiety) so thank you for sharing your symptoms. It makes me feel not alone.

ander454 · June 13, 2020, 8:06pm

Welcome Courtney! Yes, this is very common, I resisted medications for a long time. If you do decide to try them, just start on a very low dose (lower than doctor recommends) to get used to it and then increase from there.

These were my worst symptoms for sure.

It can be a long road to recovery, but it seems like you are doing all the right things and you’ve definitely found the right group of people!

Onandon03 · June 13, 2020, 9:41pm

Never noticed this bit until I read @ander454’s post with which I heartedly agree. However you really need to conquer that fear because following on from my own experience I strongly suspect as you have already reached the state you are at its very unlikely you will improve without intervention of some kind. A combination maybe of diet, life style changes and most probably medication.

Courtney · June 14, 2020, 11:09pm

I know. I used to not be so afraid of medication, but after all of this started i guess i got super sensitive and medicine just treats me differently. I just got to where i can take some CBD oil at bedtime or when i’m really dizzy to help calm me down. I have some slowmag i should start taking. Maybe i’ll get the courage to do it tomorrow!

Courtney · June 14, 2020, 11:12pm

I took topamax for one day and felt like i died, and did depakote for a few months, but i’ve heard some brutal stuff about the vestibular friendly meds.

The derealization is the worst for me too. Sometimes i don’t even feel dizzy anymore, just the weird fatigue/brain fog. I say i don’t feel dizzy as i lay in bed feeling like ill float away

Courtney · June 14, 2020, 11:13pm

It’s the worst, isn’t it?? I feel so lucky to have find out what it was early on. Sorry you’re dealing with it as well!!

Onandon03 · June 15, 2020, 8:54am

You will always feel better in bed. The worst affected bits of your balance system are virtually in lockdown. I have been hearing recently brain fog and dehydration have strong links and that seemed to make sense with me. Might be worth a try.

Unfortunate you started there. That really is jumping in the deep end. A huge number of people have said the same.

No. Sorry but you are wrong there. Nearly everyone who comes on here is exactly the same. Hypersensitivity to medication is just another symptom of the condition. I often joke two kiddies sweets would make me ill. I once took two Valium for severe back pain, fell back to sleep having just woke up after one full night’s sleep, slept another ten hours so deeply you could have removed my tonsils so sorry but you are just like the rest of us. Though I appreciate that may not be much of a consolation.

Oh and just remember tomorrow never comes. Please don’t imagine it will just get better on its own. You do need to overcome that fear and take some positive steps forwards. Unfortunately untreated there is always the possibility it could get worse like mine did. The quicker you jump on it, the better. Of course you could always try all the other component parts of the treatment package thoroughly first and see if they worked leaving the meds til last.

ander454 · June 15, 2020, 4:22pm

Topamax was my 3rd med which was working well for migraine activity but gave me an awful bout of insomnia. Amitriptyline was my 4th (still on it and well-tolarated) and Emgality was my 5th (still on it and well-tolerated). Med trials are brutal but with patience you can find the right one(s) and make some massive progress. Not to say people can’t completely resolve MAV with diet / lifestyle changes alone, but after a year trying that route (and getting near zero improvement) I knew I wasn’t one of those people.

Courtney · June 19, 2020, 3:52am

I haven’t completely committed to a lifestyle adjustment yet. I was vegan when all of this started, and i started to eat meat and dairy thinking it’s help. I think i’m going to do all the things i’ve read, like cutting out white sugar, cutting out dairy, etc. You’re right, i need to take my health seriously. I definitely don’t want this getting worse. I can’t wait to see the doctor to try medication. Oh! And i’m so sad that medication intolerance is just apart of it, but also glad i’m not alone!

Courtney · June 19, 2020, 3:54am

I’m so not ready to try all the meds but i’m SO SO ready to start feeling better… Or working towards feeling better. I’ll start with the lifestyle stuff u til i can see my specialist in october

Onandon03 · June 19, 2020, 8:53am

I’m in @ander454’s camp all the way on this one. After 12 years of intermittent suffering and then nearly 12 months full on 24/7 dizziness, having tried and failed vision therapy and VRT and being constantly told there was no available treatment once I saw the neuro-otologist and was given a near diagnosis and told to take preventatives I leapt at the chance. I think at that point I would have cheerfully eaten horse manure had I been told it was the way forward. Still to achieve success because drugs trials can prove daunting the patient needs belief and commitment so maybe in a while eh?

Courtney · August 25, 2020, 1:06am

First of all, I want to apologize for formatting as i’m on my phone.

I’m 9 months into VM and have been having mostly decent days, 80-85% or better. My most bothersome symptoms are the derealization and visual disturbances. This past month i’ve switched to a lower estrogen birth control pill from the one i’ve taken for 10 years, same ingredients, just lower doses.

Today was the first day of my cycle, and so have never felt so crummy! I usually have a menstrual headache, and if i’m super lucky i’ll get a full blown pain migraine. Today I have no pain, however the fatigue is INSANE. Like i’m not tired, but my eyes are so tired! Burning, dry, body feels heavy, feel more lightheaded than usual, dizzier than usual, off balance, the works. The increase in fatigue has me genuinely worried because this is how I felt my first couple mo this with VM and i haven’t had a recurrence since March or so.

I know the answer is obviously that yes, this is normal, and that yes, it’s hormone related and yes, I’ll go back to baseline. But i’m extremely nervous and emotional that THIS is my new “new normal”. Really just looking for some kind words. Hope everyone is well today.

Onandon03 · August 25, 2020, 10:10am

Hi Courtney. I suspect your MAV is settling into its own ‘New Normal’ which will mean it plays up more at that time of the month. Many females find that’s the way it goes. It should settle after your period but it’s probably best to expect that is the way it’s evolving. Strong hormonal links this stuff has to be sure. Read up on @nin’s diary and you will see similarities for sure. Check on previous threads here on ‘catamenial’ migraine too. Then check on those migraine triggers again. The Migraine Survival Guide is a good starting place for that. I know it can be hard to accomplish but the more control you can obtain over the nerves and negative emotional stuff the easier symptoms should become. All that can adversely affect hormones in all manner of ways which is why many people end up starting something like Venlafaxine (Effexor). Many find MAV just gets progressively worse and the only way forwards is to make some big changes. There’s a Migraine Diet, life style changes, and all the trigger reduction measures to try and then comes medication. It’s not a cure. To date there isn’t one however it can reduce the symptoms and provide a better quality of life. Maybe now’s the time to reconsider.

Nieto13 · August 25, 2020, 12:28pm

Hi Courtney and welcome. I am a year and 3 months into my chronic phase of VM. At it’s peak I have experienced almost all of your symptoms and others as well. Some diminished over time. One thing is for certain, without meds I would not have improved to my current level. Once you get a diagnosis and a game plan do not be afraid of taking meds. Start with a low dose and increase slowly as even a small increase seems to temporarily increase our symptoms. As for supplements, they don’t seems to increase my symptoms. There is some good advise above about triggers and lifestyle changes. I also found it useful, once able, to slowly expose myself to supermarkets and other bothersome stimuli. You will improve but it takes a lot of time and patients.
Andrew