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#121

Hi
Hope you don’t have a cervical rib or an elongated C7 transverse process. Avoid every action with your hands for a week, including driving and see if you are better. If so it could be thoracic Outlet syndrome. Please see my Facebook page albums "Gracy Kalath " and I have posted a lot of medical information on it. May be helpful.


#122

Here is some medical informationon Vertigo / dizziness

https://m.facebook.com/photo.php?fbid=1552786221464142&id=100001983376674&set=a.1542825705793527.1073741828.100001983376674&source=48&tn=EH-R


#123

I believe you mentioned this before to me in this same thread. I’ll ask my neurologist about it when he sees me. Avoiding every action with my hands for a week doesn’t seem feasible especially when I’m the only person taking care of myself while living alone.
Like I said tho, I’ll ask my neurologist when I see him again in roughly late Feb - March.


#124

The question is would a neurologist be well informed and knowledgable about this? I typed in thoracic outlet syndrome and my city and looks like the physicians are almost all chiropractors and physical therapy group.


#125

I would like to give this a go but i have to drive, work and cook which is impossible for me to not use my arms.


#126

@Young_Lee

I hear ya. I think the neurologist may know. If you’ve done all the testing and my symptoms (mine was abnormal for my left ear via testing and the March in place walk also made him say yes to VM) geared towards VM. I know certain foods effect me too. If I’m too tired as well. Also the tension headaches with the weather / pressure change.
Oh and I read your reply, do you feel unhealthy with your weight or are you toned / muscular with that size? Everyone carries weight differently. I’m 223 stocky and on the BMI chart I’m supposed to be 160. I want to lose another 23 lbs.

Gracy, what were your symptoms for this thoracic outlet syndrome? You’re spamming everyone’s posts about it and saying check your facebook of which I, personally, am not too keen on clicking links, but what were your symptoms with it? I’ve been told mine are classic MAV/VM.


#127

I believe im skinny. I can see my rib bones now. I use to be toned before i stopped working out which i need to get back on it since im still paying for my gym membership.


#128

Ah, that’s too bad :frowning: I wonder if you can get away with eating something where you’ll gain weight. Aren’t you on any prescription meds? I heard some help with weight gain.


#129

It’s probably due to the fact that im not eating that much. I do make my own food to work and eat the same stuff everyday over and over. I’m on duiretics right now which makes me go to the loo alot and i am drinking around 2 to 2.5 liters of water.

This is what i take to work. About 1 to 1.5 cup of brown rice, 2 egg whites, 1 cup of veggies, 7 sweet potato fries, half of turkey of breast, either half of frozen dinner tortillini or frozen lasana and 7 lays chips and hand full of multi grain cereal. I take 3 16.9 floz water bottles as well and have 1 cup of ginger tea after my first meal at 10am.

For dinner, half cup of brown rice, half of egg white, some more chips and multi grain cereal and half of the other piece of the tortillini or lasagna, another 1 cup of ginger tea and i call it a night around 6:30 pm and dont eat again until 10 am the next day.


#130

I am heartened by how much the symptoms described are like mine, as well as the period of misdiagnosis. It makes me realize I’m truly not alone.

My symptoms started July 5, 2017 when I went home for lunch. I have since had to leave my day job ad what gidlabu said about anxiety is absolutely correct. Since leaving the stressful IT job and taking up my fiction writing full-time, I find my symptoms still suck horribly, but the removal of the day job stress makes them more tolerable.

It is only recently I found a doctor who could diagnose me and I went through Physical Therapy, MRIs, VNG, etc., as well. Having a place like this helps a lot because I find support to be crucial.

The good news for me was that, even though I had to leave my career, my old company’s long-term disability didn’t care that I quit and they are covering me in the interim, which also removes some anxiety.

Definitely try to keep your chin up and remember this one thing: This disorder is not killing you. If you have that thought locked firmly in your mind, if you truly realize that this isn’t the end of your life, I think you’ll do better because it removes the “Fight Or Flight” piece from the scenario.

Best of luck to all of you.


#131

Strangely, I used “Sleep Phones” that wrap around my head in a sweat band with little flat speakers inside to listen to audiobooks when I go to bed at night. I find that the distraction is actually helpful and listening to a story tends to get me focused on something besides the tinnitus in my left ear. It makes sense that, when you remove other sounds and block the use of your sense of sight, that you would perceive an increase in symptoms because you’re less distracted.

I also get relief when I am in a moving vehicle, just like you. When I get out, life isn’t great, but while in motion, I’m the best it ever is. In the early going, I of often felt like I would start spinning at any moment, though it never actually came.

I haven’t noticed changes with the weather. I have woken in the middle of the night feeling like the bed had suddenly shifted, setting off my fight or flight reaction, but that was mainly in the early going.

I’m wondering, did you have any episodes of vertigo preceding your consistent symptoms? I had a morning when I woke up and was spinning in bed. I’d had this before and turning over stopped it, but this time, I spun on both sides and had to get up. That was the only occurrence of the true spins in this whole 7-months fiasco, but it predated the MAV symptoms by three days, which haven’t stopped since they started.


#132

Vertigo /dizziness /disequillibrium, oscillopsia (jumpy vision ) , grinding /roaring feeling in left year, tinnitus on and off both ears, hear the pulsation in the ears when symptoms were worse, or after walking on a treadmill for over 10 mins at 2.8km/hr, twitching of the lower eye lids (more on left) when the symptoms lasted for over 2 years . My nystagmus was rotational in nature and lasted anywhere from 3-7 seconds. My symptoms were worse if I lie down on left and I would find myself having more symptoms if I found myself waking up on my left side or sitting in a slouched position or kept my head turned to the left (anytime ). Thanks for asking, it all makes sense now and all that happened because I was cutting off my blood supply to my posterior circulation. Forgot to mention that they diagnosed me originally with barotrauma in 1994,; superior oblique myokymia in 2024; 2014 neuritis/ vestibular loss(I do have 25% vestibular loss), 2015 vestibular paroxymia(VP) in New York (vestibular nerve compression, 2016 ? VP in Chicago Dizziness clinic, middle of 2016 they referred me to neuovascular surgery. Came back home as I couldn’t afford treatment any further in US but here they didn’t accept the referral as they did not think it is the correct referral. I have been pushed around by Stupid Canadian health care for too long and that is why I am trying to help as many as I can, not to spam the group. I also lost my nursing license because of the disability. I took my post graduation for nothing. Hope there won’t be another Gracy


#133

That food regiment is strictly work out oriented. All protein and minimal calories wasted. Try upping the starch some more since you’re dropping weight and becoming bones. Give the body a bit more than it needs. I’d say more brown rice and more sweet potato. I’m not a nutrionist or a dietician but that’d be my suggestion since you’re still losing with what you’re currently consuming.

Ps… Tortellini and lasagna? How? I can’t even touch those or I’ll get dizzy :frowning:


#134

I also believe it’s cause my left ear is weak so blocking my eyes heightens issues. It’s just strange cause in Canada in the dark I was okay.

I was fine this morning until the evening, I felt a bit off today in the car around 6pm. It was at a stop light and thought I was going to get vertigo since I was getting the something’s going to happen feeling and some slight rocking in my mind and visually because I finally once again consumed a BK burger and fries. Unsure if it was from sodium hell after not having that crap for a week and half or so, or they slipped some possible onion traces or because I took too long to finally eat. I’m unsure. After the light I went in the grocery store and it felt like the ground was trying to tilt. Frustrated me. I got what I wanted and left within 10-15 mins. It cooled down when I got home.

It’s funny you say that 3rd paragraph cause I was just thinking about that very recently. I too have grown out of that phase of waking in the middle of the night pacing around in the dark to make sure I’m sane and that my world isn’t tilting.

I’ve had this since May 2017, I grew out of the waking up around Nov-Dec 2017 or so (I think). I’d be safer to say Dec 2017.
However, I do not sleep on my left side at all or I will wake up in the morning slightly dizzy already AND inner ear fullness in my left ear, starting the day poorly. To your question, I’ve never had full vertigo while laying my bed since the first incident of the day this occurred. I’ve had tilting kind of side to side (which also has stopped now too. I need to make a list of changes since then!!) but not spinning.


#135

Thank you. I will try your suggeation and upping those a bit. I had a burger yesterday which immediately made me anxious with slight more head pressure which is weird because i spoil myself on the weekend with burger king and i did not feel that.

Amy’s tortellini and lasagna(gluten and dairy free version) was on spiininggirls safe freezer food section. I only eat half of either one during the day and eat the other half for dinner. Its low in sodium so try it out.


#136

Sounds good then :slight_smile: Hmmm… I may try it. Not big on lasagna though. Tortellini tho. Yum!

What was in the burger? Did it have onions or pickles? I can safely get away with fast food burgers with American cheese, lettuce, ketchup, mustard, burger patty and the bun.


#137

Yesterdays burger had just lettuce but it was from a local burger joint. The bk ones, i usually get with no cheese and onions and i was fine with pickles on it as well.


#138

Big update in this post, but first a question…
My vitamin D is low and my doctor says I need a prescription vitamin D pill once a week. I haven’t found out the name yet, but has Vitamin D pill form messed anyone up? (I ask because I’m sensitive to everything now)

On 1/22/2018 - Went to IKEA
Went to IKEA (florescent light hell) after a good 15-20 minutes I started to get the migraine rumbles, tipsy turvy, ear started to hurt, walking felt like I was walking into holes that I didn’t know were there. Felt clammy / very cool on my head. I felt like I was sudden to get vertigo. Got out of the store and felt a bit of relief, but had slight migraine rumbles after as I walked to my car and as I got in my car just sitting there I started to feel like I was sinking into the ground / magnetic pulling into the ground. The sinking feeling stopped as I started to drive. I got migraine rumbles while driving home too for a good 30-40 mins or so. Felt like they kept going from front to back in my brain in random spots of my head.
Looked into purchasing migraine lens as of this day.
By night time it got worse. I felt the anxious feeling. Felt like I was starting to somewhat front flip but didn’t get the full feeling of it. I was even sensitive to my living room lighting as if it was causing a headache/strain. As I got in bed around 1ish my left ear started to fade out as if I was going up in an airplane where the valsalva maneuver unblocks it, but I tried yawning to unblock and it didn’t work. I started to get more anxious. I finally fell asleep.

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Theraspecs (US) WearOver Theraspecs (US)
More relevant eyewear here

On 1/29/2018
333pm to 410pm - Went back to IKEA
Wore my migraine glasses that I purchased (Theraspecs), migraine rumbles after the first 7 mins of being in the store, those lasted all of 5~ mins or so, Then also some slight ear pain which (I notice if I’m becoming symptomatic). I got a bit clammy … made it through the whole store and got stuck in line under many florescent lights for 10 minutes and was okay, just clammy. While driving home I felt some migraine rumbles 30 mins later very slight tho like a very dull headache pain quickly, not long last lasting. All in all, I think the glasses helped me mitigate full migraine issues.

On 2/3/2018 late evening into 2 am
I was going to watch my buddy play overnight softball and he warned me before going into the outdoor tent saying he hates how his ears pop going into the building. I walked in after he did and I felt a hard pressure pop in my left ear from the door going into the outdoor / indoor tent from the pressure. Felt a little imbalance like the ground was uneven right after walking in as I stood there which felt like that for a good 35-45 mins, I sat down the majority of the time. Migraine rumbles started about maybe 15 mins later after walking in for about 30 mins or so maybe an hour every so often. I did have some ear pinching too (both ears, I notice this when my symptoms kick up), but no clamminess on my forehead. The openness, the net and the bright lights I think is what may have made me feel a bit off for most of it. I’m sure the pop wasn’t helpful either. I had fun tho and I was fine by the end of it. It was from 12a-220a. When I left through the door again it was a slight dull pop this time, once again just my left ear. Also, after having left I didn’t get any migraine after rumbles. I did however feel a bit off maybe 15 mins after when I went through a drive-thru for food for a good 5 seconds. It made me think am I going to feel like a push-pull feeling cause it was apart of the odd combo of feelings I’d get. The feel off + push-pull in car. It was supposed to rain this evening too. As of 3:19 am, I felt some left ear pinching, but no headache or any other oddities and 4 mins later I started to feel like both ears were leaking. The leaking feeling has been occurring again the past couple or nights or so, or just this evening and yesterday evening I noticed it.


#139

It did not help me a lot. I was on some 50,000mg dose for 6 weeks. I had a mild headache after i took it, even hard to say it was from the Vitamin D considering i always feel off in some way :slight_smile:

Good luck, i heard vitamin D helps reduce migraines.


#140

@GetBetter
Thanks for that input! Mine is due to low vitamin D so I need to raise it (had my full physical last week). I’m concerned I’ll get vertigo or a really bad headache or just … the unknown when I take it.
My triglycerides are very high too so I need to get more strict on my diet and finally add exercise.