Anoj

well, that sucks, gosh! hope you feel better soon

i cannot tolerate many antibiotics. for some reason they make my brain turn to "mush." i feel incredibly disoriented and dizzy. it scares me the thought of taking any at all. i'm glad u can tolerate them.

if you can get the shots without epinephrine, i would highly recommend that. not sure if you need to be sedated for this procedure, but the less meds i'm given, the better. i've had reactions to crowns, i can see why you'd be worried. keep us posted.

The culture was negative.

^ good point. And all the docs were like, strep is so easy to kill!

I agree with Rich. I also question the symptoms this improves. Seems logical that if heart rate is your biggest problem, exercise may be a better option than for someone else whose symptoms aren't all heart-rate related. For example, neuropathies, cerebral hypoperfusion, low blood volume, Etc. (I didn't read all of the report).

I got a copy of Levine's protocol from a well-meaning doctor. I can't even get into the target HR zone for the workout! I do work out, though, in a lower HR zone. The last thing I need is a doctor telling me I'm not getting better becs I'm not working out hard enough. One of my doctors now says go swimming. Apparently the recumbent bike isn't good enough. No matter what I do, it's not good enough. What Rich said about being in the best shape of his life resonates. What do hear doctors want from us? Exercise as a cure just gives them excuses to tell us it's our fault we aren't getting better. At least, where I live.

EVERY doctor I have seen in my state thinks this is the be-all end-all solution to my problems. I have had three renewals of a 3-month physical therapy contract, plus exercising on my own on and off for the past 5 years. Yes, exercise helps me to feel better sometimes, but it hasn't cured me by any means. My biggest problem is sensations in my brain. I suspect I have some sort of problem with the blood vessels over-tightening, or some other problem up there. It's definitely a brain thing. Idk how exercise will change what's going on in my brain. That would be nice, though. Is there any research that shows exercise changes the brain's ability to regulate blood vessels or volume?

I don't discourage anyone from exercising. It's a great thing if you can tolerate it.

For anyone curious, I ended up not taking any more antibiotics. I just could not tolerate them. My glands and throat eventually got better, but it took almost 2 months. None of he doctors I've seen acknowledged the effects of the antibiotics. They wanted to blame it on the steroid, although I know that wasn't it.

I am now having chest pain that doctor suspects is inflammation due to the previous strep. He says it's not serious and to take Aleve.

Can I ask how much this costs for so much testing, even with insurance? I have insurance, but this sounds like it could go into the thousands. PM me if you'd like. Thanks!

Woah. We need to catch up. I actually had just sent you a PM.

What do you do if you can't tolerate the antibiotics though ? I am having what feels like nervous system issues with every one I take. I have had 6 prescriptions. Also, the last one had made me so dizzy I feel like I'm in a full-blown relapse now.

Btw, my throat is not sore anymore, but my glands and sinuses are swollen.

I could not tolerate the clindamycin. Felt like I was dying. I saw another doc who said to get off all antibiotics for now. Rapid strep was negative, but he did a culture. I'm not sure what's going to come back, but I'm very concerned about not being able to tolerate any of these antibiotics. I could not even white-knuckle it, even with sedatives.

Yeah, of course when I went back today, the rapid test was negative. What kind of doc would I go to for the proper tests? An ENT?

I have 2 scripts. One for Amoxycillin and one for Clindamyacin. I'm debating which one to take. The doc told me to just white knuckle it with the side effects and gave me some Xanax.

So here I am on the third week of strep throat. The problem is, it won't go away, and, of course, every antibiotic I take severely messes me up dysautonomia-wise.

The first course got rid of most of the infection, but then it came back.

The second antibiotic, after taking 2 pills, made me feel "crazy," like a zombie, and like I wanted to jump off a bridge.

The third antibiotic made me also feel like a zombie, but then I got burning/prickly/tingling sensations in my legs, burning feeling in my chest and profuse sweating and agitation.

The side effects have been worse than having strep. I am afraid to take anything. Would you keep trying drugs and push through the side effects? Even if it feels like it's going to break your brain?

I don't know what to do at this point. I've had 2 shots of Rocephin, and it's barely touching the strep, and with each shot, I get dizzier. It's to the point now that it's hard to walk without symptoms.

I've been working from home and taking some sick time, but at some point, this may end up in an FMLA situation. I'm worried that I'm going to end up out of work or in the hospital.

Any insight? I'm in a bad way.

Anyone know of this is safe to take from a heart perspective ? I've been reading if you have heart problems it's not good. I've always had normal EKGs but I do take a beta and get tachy so I didn't know if this would be considered a true heart problem.

What does it mean when you have OI with high norepi levels but not the classic tachycardia ?

I'm having an issue where I tolerate a very narrow dosage. I had a spell about a year ago and for some reason could no longer tolerate the dose I was on, which was only 2.5. I started cutting the pills in half at 1.25 mg and felt good. I've been at that dosage for a while now, and every time I either try to go back up to 2.5 (feels like my head is squeezing) or down (feels like there is zero blood flow in my brain), I get all messed up.

The other day, new doc told me to get off of it completely because I was on such a small dose it wouldn't matter, anyway. Well, I'm on Day 2 of weaning off of my 1.25 dosage, and I feel AWFUL. I can hardly think or hold my head up. I'm going to give it a few more days and maybe get back on if things don't improve. He almost kind of laughed at me, like, haha, 1.25 can't possibly be doing anything for you. But, most of my symptoms are in my head/brain. It seems like any med that messes with the vasoconstriction or dilation in my brain totally screws me up.

Has anyone else had this extreme sensitivity to Midodrine dosing? Or any other drugs for that matter that squeeze or dilate ...

anyone have any more experiences with this? I just got a script for it. I think it's a little weird to be taking it with a beta. Is that unusual?

Also, the doctor told me it helps some POTS patients with fatigue. I thought that was a little odd.

I've also read that you're not supposed to do the salt/water thing with hyper.

I'm just wondering when or how enough exercise will be enough for them. I'm trying to determine whether their expectations are off or whether I'm just being a grump. I keep starting over at Square One with all of these dudes.

Well, yesterday I was kind of excited, and I slept on it, woke up this morning feeling kinda mad, tbh.

The new guy has a clue. Goes by American Autonomic Society guidelines, studied at an autonomic center, etc. I showed him the results of my last tilt, and he pretty much dismissed them and wants to do his own, even though the last tilt I had seemed to go by the same protocol (blood testing of catecholamines). He also gave me Dr. Levine's protocol, which I know is a bit controversial.

I'm frustrated because this is the 4th guy I've seen who has basically given me the same or similar protocol, and I haven't really gotten better past the progress I made the first couple of years. And each doc acts like I haven't done enough, or haven't done things the "right" way, and if I just do it their way, I will get better.

I have signed up for prescription exercise in the past at a facility (renewed 3 times for a total of 9 months) and had a personal trainer, and that wasn't enough for one doc. The next doc wanted me to swim. (I don't have a pool.) Another doc wanted me to see HIS trainer specifically, who didn't give me exercises that were much different than what I had been doing before. Now, we have the Levine protocol.

It just seems that every doc wants me to do exercise as a primary treatment. Don't get me wrong - I don't think exercise is BAD. And, I would very much like to do it because at this point I am very out of shape. But, I'm frustrated that whatever efforts I make just doesn't seem to be good enough for these docs. And, what they want me to do is so demanding that I'm not sure how I'll even be able to complete it. I also suspect that I could legit have chronic fatigue, and I'm worried that if I do something too strenuous it will set me back.

I am working 32 hours a week and struggling to get out of bed in the mornings. I don't get home until 7 p.m. most nights. The kind of commitment it would take for me to do exercise of this nature would pretty much kill any other time I have in life. I don't know how I could even maintain a job while doing all this, much less care for my household and family, from the standpoint of time and stamina. If I didn't have a job and taking care of myself were a full-time job, sure. Would be nice to get disability and just spend the rest of my life taking care of myself, but then I wouldn't be disabled, would I?

I'm also a bit ticked that he wants to do the tests all over again. When I asked him what tests he wanted to do, the answer was "autonomic." I asked his nurse practitioner the same question and to give me more specifics - she said she would write it down for me, left the room and came back, and on the piece of paper was written "autonomic testing." LOL Come on!!!! Earlier, she had even said something to the effect of, "you're a smart, young woman, I'm sure you can do good research." And she couldn't even tell me what tests they would be using, as if I wouldn't be asking her! haha.

On one hand, I do think this guy is better than the last guy who saw me. This guy seems like he's willing to "own" me and my situation, which is something I need in my state, since there aren't many options here at all. I'm just struggling with wanting to comply. I don't want to go through another tilt, and I guess that's my biggest hesitation. (NOT FUN, as you all know!) When I asked him why I had to redo the tests if the treatment would be the same, he kind of said it would help with more specific medications.

Meanwhile, he told me to add 3 tsp of salt to my food throughout the day, elevate the bed, wear Spanks for abdominal compression (he said they don't have to be full-length compression), and tbh, I have never done any of these things.

I asked why I would have to add salt when my tilt showed hypertension, and he said it would make me thirsty and want to drink more. I found this statement to be suspicious. I'm also concerned about adverse long-term health effects of eating so much salt. I already eat as much of it as I want, I can't imagine adding more.

I almost feel like, if I'm going to do these tests again I might as well go to a place like Vandy or something?

Most of my symptoms are in my head, they have never been with my heart, so I don't think I have classic POTS. I have a lot of trouble switching medications. It takes a loooong time for my brain to adjust/readjust, and it's one of my chief complaints. I feel "weird" in the head when I change anything. When I try explaining that to doctors, they don't get it, but I don't know what other terminology to use.

He also prescribed Losartan, which I think I might go ahead and try.

What do you guys think?

What if you have OI that is less specified and not POTS?

^ agree with above statement about NO EPI. it is written on my chart.

i went to the dentist a few weeks ago and had a problem. the "stimulation" from one of the drills did me in. it felt like my entire skull was vibrating. i made them take my BP, and it was elevated. they had to stop the procedure, and i had to go back a few weeks later, and they finished successfully. they asked me if i had anxiety. *eyeroll*

Anoj - do you mind if I ask how long you've had between your three tilt tests?

I had one tilt table test in the spring of 2014, and then full autonomic testing (valsalva, QSART, breathing) with another tilt in the fall of 2014. So two total in the past year and a half. But now, the doc who performed last year's autonomic testing is asking to re-do all autonomic testing (including HUT) even though I don't feel like much has changed. So if I agree to do another one, I'll have had 3 HUTs & two autonomic tests in a 1.5 year time frame....

i have only had 2 since 2010. the first one was a waste of time. the doc didn't know what he was doing and even gave me nitroglycerine. the second one was much more thorough. i've found a new doctor who wants to redo everything becs he claims the doc i had before wasn't trustworthy.

it sounds like you are going through excessive testing to me, but i'm not a doctor!

tbh, i'm not really thrilled to be doing this again, especially since the treatment will probably be the same.

I'm getting ready to have my 5th in 9 years. This one will be the most comprehensive I've ever had, measuring cerebral circulation and peripheral resistance among the usual things measured. Mine is scheduled for mid-November.

that's cool that you're getting something so thorough. i'm really not sure how much mine entails becs my doc did not explain everything to me. when i asked which autonomic tests he was doing, his nurse wrote "autonomic testing" on a sheet of paper. pffft. i know he will measure catecholamines, but that's about it. (and i've already had that type done before).

I'm about to do my 3rd one. (New doc). Yuk.