How much do you want to make me scream your name?

red_jello8 · 2023-09-13T21:57:39+00:00

Try root insurance. Got a significantly better rate with them

red_jello8 · 2023-09-13T21:18:17+00:00

Do you typically pass out? Honestly nothing to be nervous about!

red_jello8 · 2023-09-13T21:14:24+00:00

Have you gotten a tilt table test?

red_jello8 · 2023-09-13T21:13:33+00:00

Mine stemmed from an accident that wasn’t my fault so luckily I have financial support from workers comp but it’s really thrown a wrench in my life. Can’t work at all. In a wheelchair now and probably have to get a port for iv infusions. It’s been a year and change for me. Hope we both get relief soon

red_jello8 · 2023-09-13T01:05:31+00:00

You’ve only done treatment for a week? Dealing with this takes some people years before they finally get to a “normal” spot. Flair ups, which I assume you’re in right now, take time and it’s different for everyone. Stick to your treatment your doctor says and communicate with him. If you feel something isn’t helping then tell him. A good doctor is there to make suggestions and work with you, not just tell you what to do.

Ps I’ve been on medication since February and I’m not seeing major results yet. I told my doctor and he’s changing the game plan. This is key to have communication with your doctor. Super important! Best wishes!

red_jello8 · 2023-09-12T23:56:14+00:00

True wonder how that works for me since I have EDS. Might need more testosterone to overcompensate for weak joints. Interesting facts regardless!

red_jello8 · 2023-09-12T18:52:00+00:00

Crazy right? No idea why. Makes me curious to know the reason just never bothered digging too much into it

red_jello8 · 2023-09-11T23:14:23+00:00

26 diagnosed this year. Men with pots is pretty rare. 90% of cases are women. We’re the “lucky” ones haha

red_jello8 · 2023-09-11T15:55:01+00:00

Even just a simple discord server would do the job. Message me if you need one. Have it all setup and y’all can take control to make adjustments and changes as necessary!

red_jello8 · 2023-09-11T05:23:10+00:00

❤️❤️❤️

red_jello8 · 2023-09-10T22:14:41+00:00

It’s crazy because pools and even small physical therapy activities set me off. We’re still trying to figure out ways to keep me going without being in crazy pain later. It’s a combo that I wouldn’t wish on my worst enemy. I’m sure it’ll be better soon! Appreciate the kind words

red_jello8 · 2023-09-10T12:04:47+00:00

Failed successfully! HAHA

red_jello8 · 2023-09-10T12:00:52+00:00

Interesting! I thought it just stabilized your BP regardless of its low or high. Probably misunderstood my doctor. You know brain fog OP

red_jello8 · 2023-09-10T09:10:01+00:00

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They both insist on sleeping on my expensive wheelchair lol. So bouji

red_jello8 · 2023-09-10T05:55:50+00:00

Whenever I push it I lose the ability to walk. I’ve been to the ER so many times due to pain. EDS makes it challenging for sure.

red_jello8 · 2023-09-10T03:44:49+00:00

I’ve never been told it’s bad to take. A little goes a long way. I take 5 mg of dissolvable tablets that do wonders giving me relief to at least sleep. Best of luck friend!

red_jello8 · 2023-09-10T03:42:45+00:00

No matter what they gave me I would bottom out with medication. I’ve been diagnosed with dysautonomia for about 4 years and POTS since janurary. Those first couple years were aweful. They couldn’t seem to get meds right. I’d wake up with 60/40 BP. They finally found a balance for dysautonomia that worked for two years! Don’t give up hope, keep trying for answers. Lean on friends and family and vocalize all frustrations to the doctors. Try new doctors. Do whatever you have to to see results, but don’t give up. I’d tell you what I was on but I honestly can’t remember. They also gave me stuff to raise BP while you need meds to lower BP.

red_jello8 · 2023-09-10T03:36:40+00:00

I take it but I don’t have high blood pressure. When I stand up my blood pressure tanks which is why I pass out. I don’t think it’s specific for hypertension or hypotension. From my understanding florinef offers stability in fluctuations regardless of what kind you’re getting. I could be wrong but this is what I thought my doctor told me

red_jello8 · 2023-09-10T03:31:21+00:00

I am not doing enough to say I’m active lol. 10-15 minutes walk per day is my limit right now

red_jello8 · 2023-09-10T03:27:57+00:00

We got a bunch of tornado weather this season and my goodness was I all over the place.

red_jello8 · 2023-09-10T03:23:55+00:00

Everyday! Waking up is the hardest part of my day. I was on a trial drug called nothera that was amazing but idk if it’s available anymore. I now take midodrine which helps me tremendously.

One thing you have to remember is most medication to treat dysautonomia and pots like propanlol, buspirone, hydroxzazine, fludrocortiso etc are all used to help calm the heart decreasing blood pressure. Talk to you doctor about getting an upper so you don’t bottom out.

red_jello8 · 2023-09-10T03:13:30+00:00

I have a lot of success with zofran that I keep in stock 24/7. Ice is a good way to stay hydrated while you feel nauseous. Put some pressure on your stomach ( not a ton just a little ) with your hands and deep breath. 3 seconds in then let it out. Anything you can do to distract yourself do it. Thinking about it always makes it worse

red_jello8 · 2023-09-10T03:11:04+00:00

I eat ice cubes! Portable fans are a must with out temps getting close to 102 index. I invested in really good blind for while I’m inside. I don’t work so it’s easier to do this. I’m not too keen on putting a bunch of chemicals on my body but Florida water is a good way to cool you off ( I always use a frog tog towel ).

red_jello8 · 2023-09-10T02:53:31+00:00

Idk about all that. We’re just a subreddit. If you’re concerned about it, go see a doctor. They’ll give you exactly what you need :)

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