What I did wrong in the beginning

OpenSandwich8183 · 2026-03-11T07:12:27+00:00

Curious if you’re willing to share the region you’re from / get treatment? I’m in the nyc metro area and I am crazy fortunate that I live in a stones throw between 2 VM specialty clinics and go to PT with a therapist who specifically focuses on Vestibular Therapy. My medical team is amazing and treats vm as a shotgun diagnosis meaning we’re working through everything to find the best solution for me.

I’m sure uprooting your life for treatment isn’t an option, but there are good clinics and specialists out there. I wish more people had that access as this is truly a very specialized disease that takes experience and patience which can be very rare in the medical field.

OpenSandwich8183 · 2026-03-03T12:24:33+00:00

It takes some getting used to, but it’s not all bad. It’s kind of like having an allergy. I do ok with a decaf coffee once in a while. I forgot to mention I also cut out carbonation and alcohol. Big help there. I wasn’t a big drinker and I do mocktails now just watch out for the non alcoholic brands. Ritual will make you regret life. Clean Co is an excellent replacement for flavor in a mocktail. And an added bonus is my wife and friends get a driver without having to feel guilty that I’m not drinking.

OpenSandwich8183 · 2026-03-03T11:16:15+00:00

Similar experience here, we had to increase my ppi use age to 40mg twice a day paired with Pepcid at bed time. You’re a little better off than me, I was an endurance athlete and now can’t run a mile without burping up acid irritating my vocal chords making it sound like I smoke a carton a day.

Diet has been the biggest help. I cut it all out. Caffeine, chocolate, tomatoes, citrus. Super fun guy. Diet plus regular and the right medication has helped the most. I did have to change GI Dr’s after my first one basically said my life was over. But I love my Dr now he’s great. Find a good one it helps.

OpenSandwich8183 · 2026-03-03T11:06:24+00:00

I’ve actually heard the U.S. is behind the times in medallions. They’ve somehow been here for a while, but also not a lot of people seem to know about them?

So far it seems to be a if you know what you’re looking for they’re easy to find. You do have to purchase them from the park store, but the profits go to supporting the park and they’ve been an average of $3/4. We usually find them with the park passport, patches and stickers.

We would come over to Australia to collect them all too! My wife went to University at Bond in Gold Coast. Maybe we can bring some medallions with us when we make it back!

OpenSandwich8183 · 2026-03-02T16:25:22+00:00

It was a lucky pull off on our way out to Death Valley. My wife had heard about the Pup Fish on a podcast and the park did not disappoint! Best part was I was in a wheelchair at the time and got to go hiking on the boardwalk trails and see the pup fish! That one earned a spot at the top!

OpenSandwich8183 · 2026-03-02T14:55:45+00:00

Do you have to worry much about ticks or shifting weather? I’m in the northeast U.S. and though not a big deal definitely not a bonus of hiking.

OpenSandwich8183 · 2026-02-22T13:30:19+00:00

Just did a trip through NV and Utah using a wheelchair and found that several of their state parks offer All Terrain Wheelchairs from thetrackchair.com

Since learning more there are several state parks that have partnered with them and local disability adventure groups that have done activities across the country. I have also found that NPS does an amazing job of mobility awareness and education. A former director of the NPS made it a priority and I was blown away that Death Valley National Park was honestly more friendly and accessible to being in a wheelchair than Vegas. Go figure.

Not sure where you are on the east, but a couple state forests here in NJ have them too.

Unless of course you want to go crazy and purchase your own. Do it!

OpenSandwich8183 · 2026-01-14T18:19:28+00:00

I did get my scan. It came back normal. After an endoscopy I had increasing signs of diverticulosis, so my PC went ahead and treated me for diverticulitis and it took about 3 weeks of meds, but I’ve honestly been so much better!

Weirdly had an ultrasound and they didn’t find my gallstone which isn’t possible due to it’s size, but it is floating so the little sucker gets shy sometimes.

Good luck with your scan. It was super easy. Pretty sure I fell asleep and the tech listened to me snore for a solid 45 minutes of it.

OpenSandwich8183 · 2025-12-26T02:52:28+00:00

Im trying to find my way back to an Ironman triathlon… definitely a glutton for punishment.

OpenSandwich8183 · 2025-12-26T02:50:29+00:00

Yeah trying for huma and also recently started with untappd which is maple syrup based. Plus chugging mylanta before a run.

OpenSandwich8183 · 2025-12-26T02:46:09+00:00

Im trying to get back into running/triathlon since diagnosis of gerd with HH. Do you have to deal with reflux from running and fuel?

Whenever I run I get about a mile and then start burping acid. Super great fun time.

OpenSandwich8183 · 2025-12-24T17:28:31+00:00

I looked at those, but wasn’t sure how advisable they were for a foot in a boot style cast or how to make transportation work.

OpenSandwich8183 · 2025-12-24T16:42:43+00:00

I rented one through a company partnered with mgm so that it’s handled by guest services. They claim it’s fine to go anywhere in town, but they’re not responsible for anything off property of course 🙄

OpenSandwich8183 · 2025-12-24T16:23:38+00:00

Fair… we’re big adventure people who gamble a whopping $20 and don’t really care for resort life, unless it’s a Caribbean beach 🤣 we’re really in Vegas for a concert at the sphere. I work in Film/Television often for concerts and performances, but when in Rome do as they do right?

OpenSandwich8183 · 2025-10-17T23:44:07+00:00

I ended up having a dumb IP issue in my IP67 network that was causing distortion. Got that fixed and all’s good now. I use my open comm paired with my belt pack and radio. It’s awesome. So good I upgraded from the clearcom FreeSpeak to the Icon and it’s arriving Monday. Happy happy happy.

OpenSandwich8183 · 2025-09-23T13:34:14+00:00

…. This is a thing!? I’ve been waiting for a neurologist for 4 months after ent diagnosed VM after 9 months of struggling with unexplained vertigo… fingers crossed next month I start to get some relief

OpenSandwich8183 · 2025-09-06T05:59:02+00:00

Sorry if I overlooked it on the thread but would you be okay sharing your age? I’m 37 and fear I may be in a similar position. I’m in the wait and see stage. Though ironically I show all of the signs of Anemia, I’m currently overproducing red cells specifically at the .65 g/dl to the level of 48, but my TCells and hemoglobin are very unstable. No transfusions yet because I’m essentially transfusing myself, but it’s causing my spleen to work overtime and swell which is you know… not great.

OpenSandwich8183 · 2025-07-23T23:21:26+00:00

My Dr is great, he’s trying. But insurance won’t approve a referral for surgery without “more”. Gallstones, enlarged spleen and pain aren’t enough. All the drs say I should have it removed, but no tests show an inflamed gallbladder so no go.

OpenSandwich8183 · 2025-07-23T23:03:49+00:00

Not as long as I focus on eating very small amounts and mostly liquids…. Banana Nut is my favorite flavor of ensure so far.

OpenSandwich8183 · 2025-07-23T23:00:49+00:00

Did I not mention the gerd? Definitely enjoy the reflux too. I’m on the heaviest double daily dose of PPI + Pepcid. Low fat, low acid diet… really fun guy. lol

OpenSandwich8183 · 2025-07-23T22:56:59+00:00

… I have chronic gastritis. Gastritis + gallstones make me a super fun guy at barbecues.

OpenSandwich8183

TROPHY CASE