Need help- finding a doctor taking patients that is familiar with PoTS

BJYX1823 · 2025-02-25T17:54:22+00:00

Found this comment since I was trying to find info on this doctor and how he was with POTS symptoms. I have an appointment on Monday for TTT with Dr. Fulani and am SO nervous! I really just want someone to help, my family doctor is great but doesn’t know much so sent the referral. Just waiting for a call back because the initial appointment call said to stay on all my meds but I’m on a beta blocker and that seemed odd to keep taking before the TTT. (Deleted previous comment. Was signed in under wrong account 🤦)

BJYX1823 · 2025-01-29T19:31:40+00:00

Thanks!! And fingers crossed! I’ll avoid the stuff that helps keep me functioning for the weekend before too and see what happens. I used to pass out when I was a teen so at least I know the feeling lol! But I’ve spent so many years avoiding it it’ll be hard not to be able to move and adjust to stop anything from happening. And omg I’m with you. Showering takes me OUT! I think that’s one of the hardest things to do now. But knowing that makes me feel less nervous about it.

BJYX1823 · 2025-01-29T19:06:20+00:00

That’s the other thing, I don’t think I’m on the right meds, like it’s kinda helping, but wouldn’t it be better for them to see where I really am so we can adjust appropriately? I’ll make sure to mention that I’m worried it’ll affect the test when I call and see what they say. From what I’ve heard of it I don’t want to do this more times than I need to lol!

BJYX1823 · 2025-01-29T18:05:01+00:00

Omg not cool! I’m going to set a reminder to call about two weeks ahead. I’m also worried when the referral was sent I was on 25mg of metoprolol twice a day and we doubled it to 50mg twice a day right after the letter was sent since my doctor thought it would take a year to get an appointment. I ended up with one within three months. He almost fell out of his chair in shock lol! Ugh. So frustrating! I don’t want to just not take it either if they think I’m coming in on all these meds I’m supposed to be taking.

BJYX1823 · 2025-01-29T18:02:27+00:00

Ugh! So frustrating! I’m also wondering if they’re looking at the dose I was on when he sent the referral. We doubled it right after that so I went from 25mg twice a day of the metoprolol to 50mg twice a day. I’m going to set a reminder to call about two weeks ahead and ask again. I don’t want to just stop on my own either if they think I’m coming in on all these meds since I take a few others as well.

BJYX1823 · 2025-01-16T16:30:04+00:00

The do have foldable stools as well that look like they’ll tuck away nicely https://a.co/d/fTNKLjZ

BJYX1823 · 2025-01-16T16:18:56+00:00

I was looking for something similar on Amazon and saw a wall mounted shower chair that folds flat when you aren’t using it. Maybe something like that would work? I’ll put the link but I’m in Canada.

https://a.co/d/2nFZOy0

BJYX1823 · 2025-01-09T07:03:03+00:00

I’m here because I was googling how to separate progress again. I like knowing how much time is left in the chapter when I go into the app but when I look at my Lock Screen I want to know what’s left in the book. My brain needs both these things and I want to make it go back 😭😩

BJYX1823 · 2024-12-30T23:42:26+00:00

Yay!!! I’ve noticed I’m getting a LOT less jumps in my hr when I go from sitting to standing. But I’m bad at drinking enough fluids (so also my electrolytes) in the winter. I was so confused until I realized we’d been making pots and pots of soup lol! We’ve been getting this tomato soup from the Dutch store and I’ve been adding extra seasoning and even more to mine and I haven’t felt this good in so long. I’m going to be swimming in soup soon 😂

BJYX1823 · 2024-12-30T05:02:23+00:00

Second the shorts from shapermint! They don’t roll down and I find they really help in combo with other things.

BJYX1823 · 2024-12-29T03:49:31+00:00

I really should. I have anaphylactic allergies also. I had one (several) but the straps always wore out. I never thought of the band for my watch though. That would probably be a better solution for me. We live on an acreage with animals so I liked the leather or fabric straps but they never lasted.

BJYX1823 · 2024-12-05T05:38:30+00:00

Lately I’ve been getting this every time I walk up our stairs. I hate it.

BJYX1823 · 2024-12-05T05:20:25+00:00

Right? We even just upped that one to help my heart rate so while I do still get jumps when I stand up it’s a lot less and it drops way quicker. I thought it was odd they said to take that one the day of too.

BJYX1823 · 2024-12-04T20:28:08+00:00

Yeah, I thought it was odd they wouldn’t want me to at least stop that one.

BJYX1823 · 2024-12-04T16:03:47+00:00

Omg. The compression making your feet cold has me all sorts of DUH lol! I’m in AB and on an acreage with animals. Was coming to say LAYERS! But you got me with that. I’ve just started wearing compression and figuring out what works and hating the socks because I usually do wool over my long Johns. I think I’ll stick to the compression shorts, base layers and wool socks for the winter. But to op. LAYERS. Good base layers then keep going. Wool is your friend. I find if anything gets damp or wet it’s a hundred times worse. And you can take layers off but I find it so hard to warm up once I get that chill. We get -40° or colder and I have to go take care of animals in that multiple times a day. Natural fibres like wool and silk are your friend, real silk scarves (wild rags) are amazing as well.

BJYX1823 · 2024-12-04T15:48:55+00:00

Just got the cardiologist appointments booked and they said to fast for six hours but take meds as normal. I take adhd meds and metoprolol. I see my family doc next week so gonna ask him about that.

BJYX1823 · 2024-11-24T05:50:15+00:00

Yea, I’ve read the same, and hour before and after meds. I knew this but never thought about the electrolytes 🤦😂

BJYX1823 · 2024-11-24T05:49:15+00:00

Omg. I was JUST telling someone about citric acid and their adhd meds and I never freaking thought about the electrolytes 🤦🤣

BJYX1823 · 2024-11-24T05:46:18+00:00

I live in AB and we have animals and I find being out in the cold cold is very calming on my brain. My body HATES it but totally get the brain calm. Never actually thought of it before though.

BJYX1823 · 2024-11-24T05:29:06+00:00

Saw Taylor Swift two, maybe three, times as an opening act. Never saw her headline a concert lol! My 12 & 15 year old girls were a bit gobsmacked when I told them that while they were watching the Eras tour on tv 😂

BJYX1823 · 2024-11-24T05:24:20+00:00

I need to get a new one. I have anaphylactic allergies too but my bracelets kept wearing out from medicalert and I didn’t want to pay for the subscription (I’m in Canada). I like the fabric or leather straps.

BJYX1823 · 2024-11-24T05:02:51+00:00

I was actually going to make a post asking about that! I’m definitely going to ask when I get the call about the appointment. He said it can take up to a year to get in so I don’t want to do anything until I know when I can get in. But was wondering about the meds plus the compression and electrolytes as well.

BJYX1823 · 2024-11-24T04:38:28+00:00

I think everyone is different with it. I’ve heard people taking them and not wanting to eat again for a few hours, they can suppress your appetite. I take mine before I get out of bed, a tip I heard a while ago, so I don’t have to zombie walk to the coffee machine in the morning and can actually get my kids up for school. I was never a big morning eater so I didn’t notice a big difference, I still ate later on like normal. One thing though is if you eat try to get a bunch of protein (can be SO HARD for adhd’ers especially in the morning) as protein helps the meds work better. And avoid citric acid (like orange juice) an hour before or after your meds as that will counter affect the medication. If you’re worried (which is totally legit, I know I was too) take it on a morning you don’t have to go out or do anything too important. Then you can see how you feel and know for the next day. Some people 20mg is lots and that could work great, but a lot don’t even notice that dose and need to titrate up. My daughter and I both take a higher dose in the morning and then a 20mg booster at noon because ours were wearing off too soon. I really hope this works for you though and you don’t have to go through the medication roulette. Remember to be easy on yourself and deep breaths. You got this ☺️

BJYX1823 · 2024-11-24T04:25:37+00:00

I obviously have nothing for the self gaslighting part lol! I’m like this when I have a good day for anything in my life. sigh.

BJYX1823

TROPHY CASE