u/amutoph

Just left theater 6 with 2 bug bites on my ass cheek.
I do NOT want to jump directly to bed bugs but…they’re in a straight line, small red welts, itchy…
I threw everything I was wearing into the washer and dryer. I tried to call the theater but was met with an endless list of menu options and the one I picked said it was unavailable. I’m not trying to get anyone in trouble I’m just paranoid bc I’ve dealt with these suckers before.

Anyone else? Just me? Ok, maybe a mosquito or two got me under my clothes while I was watching a movie, right? Hahaha

Just have no one to share my happiness with. I’m in Maryland but making the trip up to Boston next year. Hoping to have Dr. Donahue do both sides if I need it. Right side will go first. I’m scared! I didn’t respond well to Botox at allll but the daily pain I’m in is worth a try at a fix.

Side note, the team that coordinates for Dr. Donahue, the nurse coordinators, are extremely pleasant. I had some issues getting my records over and they helped me every step of the way.

I’ve never been so excited to see a doctor before lol.

Would love to hear about your experience.

Hello! For background I am already diagnosed with bilateral nTOS and I do have a non blocking blood clot on my LEFT side. All confirmed via Doppler. Nerve study normal. Unremarkable neck MRI. Right side way more symptomatic though!

The vascular surgeon I see is ready to take a rib out. But for months now (it started before but got massively worse after my first scalene Botox injection, I’m pursuing surgery but getting a 2nd opinion first) I’ve been experiencing burning pain from down my neck, into my right collarbone, and down my shoulder into my arm and wrist. Nothing in PT seems to be helping this!!

Basically just wondering if there’s anything I can do or ask my doctor for in the meantime before I travel to see a thoracic specialist. I really want to be sure before I get this surgery but also am told my case isn’t urgent. The pain is just overwhelming my life and I really want relief while I wait to see the next doctor.

Thank you!

Hi I have bilateral nTOS and I’m very close to considering surgery because the burning pain under my collarbones I just can’t live with anymore. I got Botox in my right scalenes in March and the pain has amplified greatly since. The Botox is wearing off by now but the pain remains. My vascular says surgery still may have success for me. But I’m confused. Can someone explain how if Botox didn’t work, why surgery would?
Thank you.

I was using a cervical neck pillow from Amazon…been dealing with one sided thumping in my right ear on and off for months. I started using my old pillow again and I hadn’t had a bout in a long time, until last week when I went back to the cervical neck pillow and guess what returned a few days into it? right sided PT!!!
Just a heads up to anyone dealing with this…it could be compression related.

I keep waking up with dead arms like completely asleep to the point I have to kinda flail around to get them straight and then sit there for a few mins until I regain feeling and can go back to sleep. I filmed my sleep last night to see if I can figure out what I’m doing to cause this and I’m rolling onto my stomach and sleeping on my arms.
How do I stop this? I already sleep with pillows on either side but I guess I just roll and push them away. Any suggestions would appreciate, I’m in so much pain during the day and really don’t know if surgery will help because scalene Botox did not go well at all. Vascular surgeon says he can estimate for me there’s a 60% chance it’ll bring relief. I have a non occlusive blood clot on the left side so I’d rather not get another one because of how I’m sleeping.

I thought I was experiencing pulsitile tinnitus but it’s not in tune with my heartbeat so now I’m told it’s my inner ear muscles spasming. I’ve been an ear rumbler my whole life and constantly am clicking my ears/opening and closing the tubes like 80% of my day, I think by now it’s either a tic (I don’t have Tourette’s but I can’t think of anything else) or I’m doing it to equalize pressure in my head.
Someone told me to check this sub out so here to ask if you ear rumblers experience pain in your ears or have an issue with constantly clicking them without wanting to. I saw an ENT twice first one thought I was crazy but then told me she could hear the clicking just didn’t know what to do about it and 2nd ENT said I had perfect ears. So I don’t know what else to do now. Thank you

So I get this thumping feeling in my right ear/neck occasionally, it at some points lasted weeks at a time and disappeared and now comes back in the mornings or when I yawn. By the time I saw a doctor who asked if it was in tune with my heartbeat it was gone so I never got to check at that time. She did order an MRA that ruled out any vascular abnormalities.
Well the thumping came back this morning and I finally got to confirm the thumping is NOT in tune with my heartbeat.
So…Google says it’s still tinnitus, but not pulsatile tinnitus, and could even be my inner ear muscle spasming?
Does anyone have any guidance on this or similar experience?

I moved last weekend and my shoulder has been burning since so I saw a PT and she suggested torn labrum/labeal tear of right shoulder. I wasn’t doing super intense lifting because I already have diagnosed thoracic outlet syndrome. I now have to see orthopedics and get imaging. The pain is awful.

Has anyone with hEDS dealt with this? Because to me, this is a clue that I need to bring with me to my new rheumatologist.

I’ve been trying for months to get in with a new rheumatologist, I was exploring connective tissue disorders with my previous rheumatologist and she refused to check me for hEDS, and kept saying I had fibromyalgia, I just don’t think that’s what I have, I at least want to be evaluated. I have lots of hEDS symptoms, I’ve had 6 other providers tell me to get checked for it. My records are sent to Johns Hopkins but they just haven’t called me to schedule, I’ll be calling them later today! Any specific providers there please recommend.

Going to be on a couple flights over 6 hours the next few months and I’m wondering if the standard neck pillows cut it or if I need one of the fancier ones? I already have trouble sleeping in my own bed, needing a cervical neck pillow and only able to sleep on my back…I feel like I need something that doesn’t let my neck drop too much to either side.

Looking for recs for hEDS specifically.

Thank you!

What’s next? My entire arm falls off? Guys, I’m so exhausted. Ok lemme give context. Diagnosed with bilateral TOS by a top specialist in April. Nerve block about 10% improvement. Botox is when it all went downhill, got Botox in my right scalene may 18th and have been experiencing shoulder pain and back pain since, but was told to wait for Botox to kick in.
Last weekend I moved and had to do some heavy lifting.
Today I just saw a PT because my shoulder has been burning since last weekend and she thinks I tore my labrum. Now, I may not need imaging if it starts to improve in a few weeks but I’m wondering was this caused by the Botox? Like, did my other muscles overcompensate now that my right scalenes are blocked? I wasn’t told about any complications like this from Botox so I’m just trying to understand if the two are connected. I have sent a message to the vascular surgeon but it’s been a few days and I just found out about the labrum so I’m coming here to vent and just seek maybe some guidance or support. Thank you all!

I’m officially one month since my scalene Botox and my pain has been significantly worse since.
I’m just worried because my vascular surgeon said if I respond well to Botox then I would respond well to surgery but he didn’t really explain what happens if I don’t respond well…
I have aTOS and early vTOS. I’m in the US, seeing one of the top TOS specialists. Thank you.

I saw a neurologist today for a bunch of things but I mentioned my one sided what I think is PT but she ordered an MRA to rule out an aneurysm. I’ve been wondering if what I’m experiencing is even PT bc it’s not my heartbeat bc sometimes it triple beats and my heart doesn’t do that and I also feel it lower in my neck area sometimes. It used to be every day for weeks but now it’s when I wake up and yawn.
Anyways she kinda scared me so wondering if anyone else thought it was PT and it ended up being something else?
Thank you!

I said “it’s almost as if we had a viral worldwide pandemic a few years ago” and she chuckled.

But seriously, if you’re out there struggling with MCAS, you are not alone, and I hope the spike in cases means a spike in research and understanding.

I struggled since 2019 with intense GI symptoms and a rash that would flare horribly and disappear by the time my doctor appts would come. I put up with a lot without seeking treatment bc I kinda gaslit myself into thinking it was anxiety…sensitive skin…my diet…anything but an actual medical issue right?
I’ve had so many GI work ups, colonoscopies, all led to nothing. But the moment I started taking antihistamines? No more vomiting. And since starting cromolyn? I’m finishing meals, I’m getting a bit of my life back…
I know it’s a long road ahead of me, and all of us, but finding just a shred of relief from this has been huge for me!

Hi! I asked a bit ago about traveling with Cromolyn, I am aware I can bring a separate bag along as well as my carryon on a flight. I need to take 12 of those foil packs with me though so I’m wondering if anyone has any bag recommendations or links. It doesn’t need to specifically be for medicine because I can label it as a med bag or something so it’s obvious. Just needs to be large enough for one box of Cromolyn. Also needs to fit my Zyrtec and famotidine :)
Thank you in advance!!

Anyone else?
I got Botox in my right anterior and middle scalenes on 5/18, so it hasn’t been even a month yet, I know this means the Botox hasn’t fully kicked in, I just wanted to know if anyone else had this Botox because ever since the injection I’ve been experiencing new burning pains in my shoulder and arm, I told my vascular surgeon and they said to wait for Botox to kick in. I’m just worried this means I won’t qualify for surgery if I don’t respond well to the Botox. I hate this syndrome!

I feel quite abnormal when I decide to always spend my 1 hour lunch break either in my car or grabbing food somewhere. Everyone else packs food and eats at their desk. I just want some alone time…it’s a beautiful midpoint/break that splits my day up…when I work through lunch or eat at my desk, I feel extra exhausted by the end of the day.
Here’s to everyone that spends their lunch alone in their cars just for some peace and quiet 🤫🤫

Hi there I’m getting an iron infusion on Friday it’ll be my first one, because of my suspected MCAS they are giving me some Pepcid and steroids through the IV prior to the infusion. I’m unsure what to expect so wanted to hear about anyone’s experience with this and if it helped and the timeline for you. Thanks!

I have aTOS and early signs of vTOS.

I’ve had ear pain for years but every ENT work up has resulted in nothing.
I woke up with it in my right ear about 3 weeks ago. It lasted throughout the morning but stopped shortly after.
This Monday (5/18) I woke up with my right ear feeling completely clogged. I flushed it the best I could and since then the pulsatile tinnitus/heartbeat in my ear/neck has been super prominent. It happens whenever I blink, move, or bend down.

I reached out to the vascular surgeon I see at Johns Hopkins and he said in my case pulsatile tinnitus is very non specific so I don’t know what else to do for relief.

I’m in with a new ENT June 2nd.

Anyone else with similar issues or story?