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#114

Interesting. Stay off it at least until after your trip to Canada, maybe longer. Then if you do ever decide to try it again, try it for just one day and then wait several days to see what happens.

I think I said this before about magnesium making someone more dizzy (was that you?) - if the supplements can affect dizziness, then they can probably affect it in either a positive or a negative way. Maybe you just happen to be one of the people who are affected in the negative way.

And because I’ve read that New England’s going to get hit by winter storms over the next few days, I thought you’d like to know that we had to turn on the air conditioner again down here because it’s been so warm. :slight_smile:


#115

@Manatee
Will do and yeah, the magnesium pill made me have extreme vertigo. It was horrendous! I was driving at the time too to level things out and even then it felt like the car was going to flip. I had to tell myself my car was level with the ground multiple times and this feeling will pass. It was late at night on a desolate highway. The feeling of the extreme vertigo lasted 10-15 mins or so. That night was a 3 and a half hour drive with a nauseous feeling for about 2 and a half - 3 hours. It was bad!
Unfortunately I have a very sensitive brain now :frowning:
Still waiting for a call back from my neurologist and it’s been about 4 days since I called the office to ask for him to call me back or discuss the prescription medicine avenue.

Haha you’re the worst! It’s getting so frigid here! Saw some brief flakes here today already. I’m sure the drive up to Canada will be interesting. I’ll continually check in.


#116

Space _cadet, cervical x-ray can rule out cervical rib elongated C7 transverse process


#117

An Update.

I stopped the CoQ like I said on about Dec 19, 2017. I started to get back to my baseline of some imbalance at night and some tension headaches. I drove upto Canada on Dec 23, 2017. It was an 8 hour drive, was supposed to be 6 hours but the snowstorm was immense, but I made it. I wasn’t feeling symptomatic at all. I noticed by Christmas Eve Dec 24, 2017 I got only 1 cluster headache during the day and after that I didn’t get anymore since then. I was actually able to walk around in complete darkness without stumbling too and no sense of unstableness. I felt free and felt good. I even helped my cousin shovel his long driveway on Christmas Day. For about 2 weeks since driving back home I had no tension headaches at all and no imbalance (besides 2 nights cause I was pushing my brain all day for 2 days), and no tinnitus!!!
I was symptom free for 2 weeks!! I felt like I partially had my life back and I could work a regular job.

THEN! January 5th, 2018 I had an eye appt and they wanted to dilate my eyes. I knew right away this may cause issues, especially due to sensitivity to medicines, and it did, they even used the smallest dose possible. I’ve been having tension headaches again every day and some slight imbalance towards the evenings. It was really bad the first 2-3 days. I actually went for a 5 1/2 to 6 hour drive the day it occurred cause I felt very nauseous (thought I was going to vomit) after they did it and I kept feeling the whooshing back and forth feeling. I had some hope… I would like to get better again back to how I felt for those 2 weeks and better. I don’t want to pull the trigger on trying any prescription meds yet, cause I saw how I was for those 2 weeks with only vitamin B2 400 mg a day and I felt supreme.
My birthday just passed too in the beginning of January. I’m 32 years old now.

I’m still unemployed on unemployment searching for jobs and still living alone with no girlfriend in sight. It’s always me just trying to take care of myself. Immediate family doesn’t want to hear about my symptoms either, so I feel this board is the only place I have for ears and words of helpful advice or even just being there to empathize sincerely. I’m glad this forum exists and that you people are so supportive. Thanks again.


#118

Wow. So for those two weeks, you were on Vitamin B2 but no other drugs or supplements? What about your diet? Had you been avoiding any particular foods or drinks? You felt good while you were out of town, then still felt good after you returned home. Were you doing anything different after you returned home from what you would have normally been doing?

I’m just trying to see whether you can figure out anything that you might have done that could have caused the 2-week “good spell.”

Try not to worry about not having a girlfriend. I know it’s hard but I was single and lived alone until I was 47 years old. During that time I got involved in groups and activities, volunteered, and made a bunch of friends that I did things with. I gave the whole Internet dating thing a good try (back when it was new). I finally gave that up after I started catching myself during bad dates (and almost all of them were bad dates) wishing that I was home alone doing anything besides being on the bad date. :slight_smile: I ended up learning to be comfortable with myself and able to entertain myself when I needed to. I still remember the first couple of times that I went to a movie by myself. I felt really weird about that. Then, after I had done it a few times, I realized that sometimes I preferred to go to certain movies alone because then I didn’t have to be worried about whether the other person was enjoying the movie, didn’t have to put up with someone trying to whisper things to me during the movie, etc. And I also noticed that no one cared if I was at a movie by myself, and that there were actually other people there by themselves, too.

AL


#119

@Manatee
My apologies for the delay in response.

I was not doing anything different, not even exercising. I was just abiding strictly to my migraine diet that I’ve uploaded before. My sleep schedule was smoother too, up at 10 am, sleep by 2ish. I did have one slight discomfort incident on New Year’s Eve at a buddy’s house because of the very bright LED’s in his house, but I just went off to a bit of a dimmer room and he then turned down the LEDs in the other room to help me. Nice guy!

I take the Vitamin B2 400mg every morning.
I don’t drink any fruit juices, soda or coffee!!
I try to avoid florescent lights at all costs too to keep the migraine rumbles minimal.
I still watch tv for a period of the day and play video games for prob 3-4 hours. I noticed if prolonged on the video games then I start to get a bit imbalance.
As noted the heavy induced 2 days of pushing my brain (video games) made me imbalanced even when I was feeling really good.
I have not had any alcohol since Aug 2017. I use one headphone (in-ear bud) in my good ear for video games all the time for chatting with friends/family on the Xbox, but I always kind of keep it slightly not fully pushed in so pressure isn’t created in the ear. Going for car rides almost every other day to get out of the house and to visit my parents and dog.
I had still been eating junk food (McDonald’s, Burger King, Wendy’s). American cheese burger with no pickles and no onions, and small fry. Kicks up the tinnitus a bit I’ve noticed (sodium hell) and slight inner ear pressure on my left ear. Day to day I eat cereal, (Frosted Mini Wheats and Honey Nut Cheerios), and the junk food, and when not the junk food I’m making turkey burgers from ground turkey into patties, sometimes with curry spice added and sometimes plain. I’ll cut up a tomato and add that. I’ll eat it with potato bread but I’ve been reducing the bread intake so I can trim my gut a bit more. (It’s helping, I’m down about 22-23 lbs since August). Yes, that’s without exercise and just better food choices or well, McDonald’s isn’t really better food choices but still, I’m trimming lol. I eat apples before bed or if I don’t want to eat cereal or oatmeal or having to make a meal. I also eat green beans, broccoli and sweet potato with my dinner when I end up cooking the turkey patties. For dessert I have vanilla ice cream in a wafer cone which is tasty. Oh! and I drink LOTS of water. I usually consume 100+ ounces of water a day. I wasn’t doing much else different then and I was feeling great. I showered every day too! My bestfriend thinks my brain / ear was simply healing.

Unfortunately, I’m back to skipping showers again some days. Tension headaches kick up and my tinnitus has leveled up some too. The weather has been all over the place too which hasn’t helped the situation. I haven’t had McDonald’s in a week or so now too cause I’m trying to reduce the sodium intake.
However, on a somewhat bright side, I found a recipe for cheesecake with limited ingredients that I know I can consume (one is questionable - vanilla extract even though it’s in ice cream I consume), and an apple pie recipe which I know I can have as well. I plan on making the cheesecake today and sharing it with my favorite brother.

My cousin in Canada had a nice atmosphere at his place, no noise and very zen feel, even with the Himalayan salt lamp in some rooms. I’m currently purchasing 4 Himalayan salt lamps and hoping that might help with the situation some even if for the zen feel.

Yesterday I had the migraine rumbles from florescent lights at the doctor’s office and then the grocery store for a prolonged period looking for ingredients and the after effects I can only explain feel as if you have the flu (clammy, sweaty, lethargic and headache). So, as of today, I’m looking into tinted glasses specifically due to florescent lights. TheraSpecs is the company I’m looking into. I’ll give them a chance and see how that goes.

(NB from admin: these images link to products members have found helpful and at the same time help fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)

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

To acknowledge your point on dating… ahh, that grief haha. I’m perfectly content going places myself. I do it a lot, mostly restaurants.
I specifically miss the affection, hand holding, someone to reminisce with and adventures to share together.
It just seems that much harder doing everything yourself with no support. Worrying about a place to live by yourself, no other form of income coming in from a significant other, no support if you fall or get hurt. I understand by reading some testimonials from people here that some spouses are not truly supportive and some even kind of even question it at all. But, those are my concerns I’ve listed. I appreciate you sharing your sentiments!
Fun fact - Last movie I went to by myself was Bourne.


#120

I’m down 25lb as well but I’m starting to think i’m malnourished. I’m a 5’6 dood that use to weigh 145lb before all of this and i’m down to 120lb.


#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: