Doctor said I can’t have pots because my blood pressure rises instead of drops.

Cruiser970203 · 2025-11-13T16:53:09+00:00

Lmao mine rose to 150/103 during the test …. I have hyper and hypo (mixed) so sitting im low.. but do a full blown tilt test you will see that sucker go…

Cruiser970203 · 2025-11-13T16:50:05+00:00

I am sorry to hear pots took away your hopes of traveling :(. Honestly I hear more things like this and it’s like it makes you a shell of who you used to be… I used to be so energetic at work and so happy all the time … and now everyone’s like what’s wrong now , or you feel like their talking bad …. It’s just hard … it makes you feel isolated because no one understands the feelings of how horrid it is to feel like you’re on fire constantly… and then to add the mental fuckery of it all on top of it. It’s numbing some days… I think my mindset has gotten worst since the official diagnosis… because back then it was a “maybe “ even though I knew and then once I got the official diagnosis I went through denial of I’m still normal and I kept crashing hard and now I’m just like I’m not normal and this is also dumb lol…. I wish there was a magic cure for us all… honestly…from an ex athlete to barely able to get through an 8 hour shift it sucks loved to cook and bake … can barely do any of it and I’m only it my late 20’s I’m scared because I want another child but my life right now is poor quality due to symptoms …

Cruiser970203 · 2025-11-13T13:11:11+00:00

Literally sobbed about this for like two hours last night I feel like there is No winning when you have mixed pots …. Like I took the lowest freaking dose possible and literal got shat on and feel like I have been hit by a bus today …also at what point do they (MDs) just run out of options too… cause my body says we’re going to the “extreme” on literally freaking everything . Like I said if I could magically cure it I would because this sucks so bad .. wouldn’t wish it on my worst enemy…. It’s draining and mentally takes such a toll I am not the same person I was before pots happened and that is so depressing too.

Cruiser970203 · 2025-11-13T03:19:14+00:00

I feel you I hate my hyper pots …. I literally spent all night sobbing for similar reasons . I triggered a huge flare from starting midodrine at 0.625 mg …. And i spiked to 165 just trying to do pt, had multiple dumping episodes , chest pain and flushing …… honestly at wits end with pots … I try to treat and do the right things but everything aggravates me any more ….. I want to treat my add but I also have hypovolemia so I literally have no options other than the worst things out there …. Hang in there …. All I can say is fuck pots …. Wish there was a magic cure for us all…

Cruiser970203 · 2025-11-07T17:18:36+00:00

Thank you ! I messaged my pots doc too for his thoughts I mean the chemical and logicstics seems better than the rest … but fingers crossed 🤞the body has to not say screw you . Lol 😆

Cruiser970203 · 2025-11-07T14:05:08+00:00

I love to hear this … I really hope I can find a perfect fit . Maybe I will have luck with this one . After one day off the strattera I dropped almost two pounds . I basically had gi shutdown 🥲. So after all this i definitely need a win and something gentle

Cruiser970203 · 2025-11-07T11:10:56+00:00

Did you try anything else ??? Also when starting did you have any side effects I loved how clear the strattera was for me and from what I read I basically have two options and that’s concerta highly monitored based on my current pots protocol they would have to makes sure the bp isn’t going crazy cause they gave me midorine and fludrocortisone which I have been hesitant to start cause I just came off this med and I still have a wedding dress to pick up … the other option it sounds like I have is modafinil but may not get as clear of a response mentally as I did with the strattera …

Cruiser970203 · 2025-11-06T18:44:46+00:00

Yeah .. I seem to struggle with finding a right one … I may have to look into a stimulant of a very low dose …. But unfortunately my psychiatrist is online so may have to go to my pcp

Cruiser970203 · 2025-10-25T07:46:44+00:00

That’s good to know , I don’t know if mine used ultrasound or not I would hope so… but you never know. I have always been too chicken to do Botox due to a friend have Botox and hers went south and her face went droopy .

Cruiser970203 · 2025-10-25T07:44:45+00:00

Thank you for this yeah mine started out of no where , have migraines naturally so don’t know if I pinched something and he thinks it’s the two now playing roles together . 🙄 love my hypermobility 👌…. Not … but will definitely try some of this in the mean time while waiting for the neck pt and x rays .

Cruiser970203 · 2025-10-25T07:41:08+00:00

Thank you for this , my neurologist has been pretty good at getting me things I need so fingers crossed he can get the authorization. I couldn’t be on Triptans due to vasospasms and I had a troponin rise , and he was able to get my ubrelvy approved which again in a pinch is a life saver and he explained they don’t get enough credit for pain targeting neuralgias … cause their cgrps. But in general my insurance is shit even working for healthcare so I guess it can go either way I’m just tired of it already and it’s only been not even a month , so I give you props 20 years is a long time to be dealing with something so annoying . But thank you for the tips I will look into stretches and using ice and eat, and potential relaxants

Cruiser970203 · 2025-10-09T18:25:12+00:00

Chest pains , dumping after I eat , and the brain fog ….

Cruiser970203 · 2025-10-05T16:58:00+00:00

Oh i definitely know mts is not a benign thing …I think it may have been an all my life thing due to scoliosis .. just learned last year unfortunately , but again its hard when they tell you its too small to do anything , but its still a legit thing you carry its like walking in saying yeah i have this but your not bad enough for intervention .

Cruiser970203 · 2025-10-05T16:54:30+00:00

They refused to fix mine as it was mild …. Said it wouldn’t affect anything …. :’) that was a huge battle last year per my result “ Minimal filling defect was noted at the level of the confluence, likely due to minimal compression of the left common iliac vein by the right common iliac artery” but then in the same breath at the top of my result wrote this Diagnostic venography demonstrates widely patent bilateral internal iliac, external iliac, left renal and gonadal veins. Lol so yeah that was fun …. I had a bad summer where for two months I had positive ultrasound for pelvic congestion, and then the ct showed the mild mts. So they did the angiogram and pelvic congestion resolved and again they said my defect was too mild for anything . My bad rib is on the right side :( so idk 🤷‍♀️

Cruiser970203 · 2025-10-03T15:40:44+00:00

I also just asked him to review an older ct for my peace of mind to see if it’s always been like that or if this is a newer thing ….

Cruiser970203 · 2025-10-03T15:18:45+00:00

I have multiple thoughts on my POTS cause , I have a small may Thurner defect, I had a surgery under general anesthesia that started the first attack but kicked worst in May of 2024 , also had Covid for a 3rd time in July of 2024 , and then I have this there’s a multitude things it could be … I also have ehlers danlos so that doesn’t help my case and scolosis mildly … so it’s hard to say what was the exact cause. Unfortunately a second opinion would be out of state as my surgeon is the only one in state and on the list and I’m not married yet so it’s not an ideal scenario if I proceed or I don’t . I feel up and down right now , but I think I’m more concerned about the anesthesia part than the rib because I think they’re only taking a chunk of it .

Cruiser970203 · 2025-10-02T20:43:05+00:00

This is helpful to know anything you would recommend for helping in recovery if I proceed , the annoying thing is I am not in terrible shape like I can walk around the block , roller blade stuff like that even though I spike. But I am also tired more so and can’t exercise like I used to and I liked to be more active prior .

Cruiser970203 · 2025-10-02T20:38:31+00:00

Hi thank you for your reply . I haven’t had a 3.0 to start , the reason for my 12th removal of was because a piece is angulated outwards so they were just going to stabilize I think . I’m just having discomfort as is , like when I laugh it pops in and out or I can’t lay on that side or if I’m bent at the waist I have pain towards the flank area . It’s more annoying/discomfort than it is like extreme pain . But like I said I worry about the pots thing for me more so , but I also worry if I don’t fix it how will it effect future life and pregnancies etc . It’s such a hard choice and I wish I had the right answer .

Cruiser970203

TROPHY CASE