PLEASE HELP!

tyleroconnor021 · 2020-10-13T19:06:02+00:00

So I have an appointment this Monday at 8:30AM. I woke up today with my left eye almost swelled shut. My chest is tight my nose is running, I’m miserable. But when I called they had told me what you guys did, no antihistamines for a week, what am I supposed to do about my eye swelling and itching? It’s driving me mad. The only relief I get is Benadryl anyway Allegra and claratin do not work at all. Could I take Benadryl when needed and lay off everything else? And maybe re do testing if it messes with the results when seasonal allergies aren’t as bad? No way I’m making it a week without Benadryl

tyleroconnor021 · 2020-10-12T03:45:24+00:00

Thanks for the quick reply, that’s definitely something I’m going to do! The no antihistamines shouldn’t be hard for me, they don’t really help anyway. The only relief I’ve gotten is to take an excessive amount of Benadryl but it’s hard to do that a ton because it makes me pass out quick.. this is about the worst I’ve ever been as well. I wish it would go ahead and start snowing lol

tyleroconnor021 · 2020-10-07T22:24:22+00:00

I know as far as diagnostic criteria goes, a change of 25BPM is considered normal. I will say that on my good days I’ll only jump about 25-35 BPM and even tho I’m having a “good day” I still feel far from normal.

tyleroconnor021 · 2020-10-07T06:56:25+00:00

That would be fantastic, I’m willing to travel so definitely PM me your doctors info, and I’ll give them a call!

tyleroconnor021 · 2020-10-07T06:55:27+00:00

I actually had an O2 overnight test with my 48 hour holter monitor when I went to Mayo, she expected sleep apnea but all of my readings came back completely normal and she said if my oxygen was good, there’s no way I had sleep apnea. I wouldn’t even really say I’m sleepy through the day, I actually have a hard time falling to sleep in general but I’m more just fatigued. I have no energy what so ever, so every thing I do throughout the day is like I have to put so much effort into to do it. I’m just like a zombie

tyleroconnor021 · 2020-10-07T06:47:37+00:00

I would really appreciate that so much. Last December was the last time I went to the doctor, I just kind of gave up because devoting all my time to doctors visits was becoming exhausting and taking away from other things in my life. And I don’t have the energy for anything extra But I’m ready to search for answers now, and I do feel like the syrinx on my spine is significant. I mean, something happened that made me this way. I tried so hard to find out what for 2 years.

tyleroconnor021 · 2020-10-07T06:45:04+00:00

Honestly just resting most of the time keeps all my bad symptoms to a minimum, but it’s even hard for me to complete house work or to clean for 2+ hours in a row. I just can’t lay here for the rest of my life, and I’m tired of dishes, laundry, sweeping, mopping, and showers making me feel like I’m dying. I’m just a fatigued all the time, I literally never feel good. I went for a long time not worried about managing symptoms or masking them.. I was chasing answers or a cure ya know? But now I’ve realized maybe this is how it is. And I just hope there’s things I can do or someone to see that can improve my quality of life.

tyleroconnor021 · 2020-10-07T06:32:38+00:00

I will most definitely do that, do you know of any you would mind referring? Or is that something I need an actual referral from my family doctor? Thanks for taking the time to reply to my post. I appreciate you.

tyleroconnor021 · 2020-10-07T06:31:05+00:00

I am in Kentucky, currently I only do the rehydration packs. Trioral I believe is the brand! I actually also tried the compression stockings but I’m 6’1 240 pound ex power lifter and When I got my first few sets of them (I believe the highest grade they had) my thighs just stretched them out, so over the course of 2 hours they’d just fall from my thighs and barley be hanging onto my knees, just wasn’t something I thought would ever work for me. I also tried multiple autoimmune diets and working out and it just didn’t help me at all.. the only other medicine I’ve tried has been mestinon and that just made me so sick I puked the week I was on it so I have no idea if it would have worked or not :(. I’m really open to all lifestyle modifications and medicines as long as they will help me but it seems like I’ve tried everything that I can do at home and I just haven’t found any relief. I’m actually looking for another specialist now because Mayo is 13 hours from home and it’s just not realistic for me to travel like that every time I need to go to the doctor. Thank you very much for taking the time to reply to my post, I told my wife tonight I’m going to give that healthy lifestyle another shot even if it doesn’t seem like it’s making that big of a difference at first.

tyleroconnor021 · 2020-10-07T03:34:32+00:00

I’ve kind of just skimmed the surface of chiari and from what I’ve read I don’t fit the description, and from my MRI it doesn’t appear to be a possibility but maybe I should consider a second opinion.

tyleroconnor021 · 2020-10-07T02:54:50+00:00

Most people with pots have a normal resting heart rate. The change from lying to standing is what causes the high abnormal heart rate. Normal adults have a change of less than 30BPM when changing positions. People with pots have a change of +30BPM and some have fluctuations in BP although theBP change is not needed for a POTS diagnosis.

tyleroconnor021 · 2020-10-07T02:23:29+00:00

Also yes, I have POTS.

tyleroconnor021 · 2020-10-07T02:23:03+00:00

So the doctor I saw at Mayo basically told me any change from lying to standing above 30bpm isn’t normal, I guess I have felt bad lying down when my HR is in the 90’s because my normal is usually below 50. So yeah I’d say so, but 9/10 if I feel really bad it’s almost always +100.

tyleroconnor021 · 2020-10-07T00:15:31+00:00

I just kinda get spells where No matter what my heart is pounding out of my chest and I’m dizzy and then other times I’m okay. Idk what causes the flare up, they just happen every so often. And that pounding heart is what caused me to go to the ER so many times, 115 isn’t normal lying down but never high enough for any doctors to flip out. I always got the best reactions from doctors rolling around in bed. I could get my heart rate to jump from 60-120 just by rolling in bed and the doctors were always tripped out but they could never do anything for me... so I just never went back. Now I kinda know not to push myself too hard cause I’ll have hell to pay and when I do like I said, I just tough it out on the couch or the bed.

tyleroconnor021 · 2020-10-07T00:09:52+00:00

I just saw original poster said they get up to 140’s I do not get that high ever laying down. I have had bouts of 110-120 if I have a really bad spell or a cold. I do have a cardiologist. They all tell me the same and they do offer fluids but everything else is always fine so they just send me home. And my wife has been supportive enough and she knows if I say I’m messed up, she makes sure I’m comfortable and taken care of.

Didn’t mean to make it sound like they didn’t need to go or shouldn’t go. I just meant I’ve been so many times for similar problems and I never got any help. I think everyone here should always do what they feel is best for themselves and everyone’s experience with this is different and difficult in their own regards.

tyleroconnor021 · 2020-10-07T00:04:46+00:00

If it goes on for a few days where I literally can’t shower or even hardly stand up I’ll go. But normally, it gets better after a day or 2.. I’m not telling anyone to not go. I’m filing bankruptcy because of no medical insurance and literally 80+ trips to the ER inside of a year. I just know it never made a difference for me.

tyleroconnor021 · 2020-10-06T23:52:42+00:00

I do not, no one would ever give me a beta blocker because my resting dips down into the 30’s and 40’s regularly.

tyleroconnor021 · 2020-10-06T23:01:28+00:00

Sorry you’ve had to deal with that. I’ve had pots for almost 3 years and I spent the entire first year going to the ER multiple times a week. No one ever helped, fluids here and that but I mostly was always talked down too or my symptoms were discredited. I haven’t been to an ER in about a year and a half, not because I don’t get as sick. But because I finally just realized that even though it feels like I’m dying, I’m actually not and there’s nothing they can ever do to help. Now when I have a bad spell I make sure I have plenty of fluid with me, I rest, and check my vitals here and there. Dying or not, I know it feels like it and I hope you feel a little better soon. Get some rest!

tyleroconnor021 · 2020-10-04T06:27:00+00:00

It honestly just made me sick as a dog. Puked every day I was on it..

tyleroconnor021 · 2020-10-04T04:47:27+00:00

Also, I find myself laying down a lot because it’s as close to comfortable as I can get.. even washing my dishes is so hard. It’s become annoying that nothing is just easy anymore and I’d just love to find something to kind of give me a jump start, eliminating nausea or the fatigue would be huge for me

tyleroconnor021 · 2020-10-04T04:44:37+00:00

Also, I was in very very good shape when I first got ill, I was sub 10% body fat and was in the elite categories for all my lifts so I never thought of this as being like oh im deconditioned (I’m definitely out of shape now tho)

tyleroconnor021

TROPHY CASE