Pots Symptoms Worsening...

[poppetkazutaka]

So the up and down symptoms are getting worse. Meaning me sitting up and going tachy. Me getting up and sitting down, getting up and sitting down, and getting dizzy sick. And me trying to take a shower without hitting the wall or floor are getting worse. They were getting worse when I was on the propranolol 120 x 2 a day, and the doctor changed me to lobetalol 100 x 2 a day and the other symptoms (chest pain, headache, dizzy all the time) got better, but the POTSiness has steadily still gotten worse.

Does this mean I need more or less medicine? Or do I need a different medicine? Or am I simply spiralling and need to get used to it? Cause I can. I actually had a kick in the shower this morning. I was laughing the entire time, though my mom thought I was nuts. I mean, what else can you do when you can't wash yourself without smacking into the wall? XD

Any help is appreciated!

EDIT: Actually, I've just realized something, too. They were steadily getting worse again when I was getting better from the infection...do you think it could be immunological?

[arizona girl]

poppet, need more info from you. What infection are you talking about and what is happening with your BP and HR when you are getting dizzy and tachy. What are all your meds you are taking daily?

I always check my BP/HR right when I wake up while still supine, then after I've been up a while and/or when I'm symptomatic.

Heat is one of the things that triggers me, so hot water in the shower or bath can bring on symptoms, even with meds on board. I always have to lay down or sit for a while when I do hot water. However an infection and meds for an infection can also flare symptoms.

Also labetalol has stopped my huge swings when I take it, but if I don't take on time I start swinging again. Some days I have to take it 3 times a day, some days just 2. Even though the swings have stopped I still feel very fatigued, which is a side effect from what I understand. Also I've had more sinus pressure type headaches, which bring on an occasional big sneeze, since I've been on it.

I'll try to help you figure it out, if I can.

[poppetkazutaka]

poppet, need more info from you. What infection are you talking about and what is happening with your BP and HR when you are getting dizzy and tachy. What are all your meds you are taking daily?

I always check my BP/HR right when I wake up while still supine, then after I've been up a while and/or when I'm symptomatic.

Heat is one of the things that triggers me, so hot water in the shower or bath can bring on symptoms, even with meds on board. I always have to lay down or sit for a while when I do hot water. However an infection and meds for an infection can also flare symptoms.

Also labetalol has stopped my huge swings when I take it, but if I don't take on time I start swinging again. Some days I have to take it 3 times a day, some days just 2. Even though the swings have stopped I still feel very fatigued, which is a side effect from what I understand. Also I've had more sinus pressure type headaches, which bring on an occasional big sneeze, since I've been on it.

I'll try to help you figure it out, if I can.

Currently infection free after being sick with a sinus infection for seven months. I was on antibiotics off an on, but no longer. Last course was a 10 day Z-pak that started on the 28th of December (take 5 pills that last 10 days) but the symptoms were before that. I had sinus surgery on the 9th of December, and was on an antibiotic then (the C one I can't remember the name of) for ten days. Then was free for a week.

We only recently found some mold in our home in the air filter my Dad has been neglecting to change and in the water bottles my mom keeps around the house. My room is mold free but apparently though my mom cleans a lot the rest of the house has some issues... We've found them and fixed them. I'm hoping that helps me. But the symptoms are still there and don't seem to have followed the antibiotics or the infections. So I don't think that's it.

I can't check my BP because I don't have a machine and they're too expensive ($50 for a cheap one here). For my meds, check my sig. :3 I can't take the labetalol like that, it's a set dose. I get tachy with the up down as mentioned previously, meaning when I sit in a chair and then get up, go back and then sit, then get up and then sit. Or if I'm out and am looking at something on a shelf, kneel down, get up, kneel down, get up, then I'm going to crash. I get dizzy in the shower because of the heat, yes, but I don't have the time for a bath in the morning. I used to not have those problems before. They've been getting worse. Last night I was laying half-reclined on pillows with the laptop and looking at cute pictures and putting text with them when I noticed I was feeling a little sick. Headachy, tummy sick, and my chest hurt. I was jumpy and panicy for no reason.

Took my pulse, 90+ and rising. I stimulated the vagus thingie by breath holding (I've done that for years because I've always had rythym issues with my heart) and skipped myself. Then I beat back at 72. So I don't know what that was about. I had been resting for about two hours and hadn't moved when that had suddenly come on.

Is that enough information? :3

[runningshoe]

Are you salt loading and taking any florinef? That and betablockers are the key for me. But I do have good weeks and then bad flares that I can't seem to control 100%. When I have a bad episode I can usually get back on track with lots of fluid and salt.

[poppetkazutaka]

Are you salt loading and taking any florinef? That and betablockers are the key for me. But I do have good weeks and then bad flares that I can't seem to control 100%. When I have a bad episode I can usually get back on track with lots of fluid and salt.

I eat a salty diet because my inability to keep water in well without lots of salt with it, and I've never been offered florinef and probably wouldn't take it due to the side effects. I did the 24 hour catch both ways (the two kinds) and my adrenals are fine, so they didn't find anything wrong there.

I don't think it's an episode since it's a steady decline that's inline with the medicine changing from one to another. Propranolol not working...stopping the propranolol and starting the lobetalol and having the old meds work out of the system while the new meds work in.

[poppetkazutaka]

Anybody want to answer this? Up or down in the meds since I have an appointment next week and it's real hard to get in to see my primary?

[arizona girl]

Currently infection free after being sick with a sinus infection for seven months. I was on antibiotics off an on, but no longer. Last course was a 10 day Z-pak that started on the 28th of December (take 5 pills that last 10 days) but the symptoms were before that. I had sinus surgery on the 9th of December, and was on an antibiotic then (the C one I can't remember the name of) for ten days. Then was free for a week.

We only recently found some mold in our home in the air filter my Dad has been neglecting to change and in the water bottles my mom keeps around the house. My room is mold free but apparently though my mom cleans a lot the rest of the house has some issues... We've found them and fixed them. I'm hoping that helps me. But the symptoms are still there and don't seem to have followed the antibiotics or the infections. So I don't think that's it.

I can't check my BP because I don't have a machine and they're too expensive ($50 for a cheap one here). For my meds, check my sig. :3 I can't take the labetalol like that, it's a set dose. I get tachy with the up down as mentioned previously, meaning when I sit in a chair and then get up, go back and then sit, then get up and then sit. Or if I'm out and am looking at something on a shelf, kneel down, get up, kneel down, get up, then I'm going to crash. I get dizzy in the shower because of the heat, yes, but I don't have the time for a bath in the morning. I used to not have those problems before. They've been getting worse. Last night I was laying half-reclined on pillows with the laptop and looking at cute pictures and putting text with them when I noticed I was feeling a little sick. Headachy, tummy sick, and my chest hurt. I was jumpy and panicy for no reason.

Took my pulse, 90+ and rising. I stimulated the vagus thingie by breath holding (I've done that for years because I've always had rythym issues with my heart) and skipped myself. Then I beat back at 72. So I don't know what that was about. I had been resting for about two hours and hadn't moved when that had suddenly come on.

Is that enough information? :3

Well you really need to figure out how to come up with the money to buy a blood pressure cuff, I know Costco has them in the $30 range. Without being able to monitor your HR/BP in your own environment it is going to be really hard to tirate the dosage strengths and your medications. You also need to look at interactions between your medications. Drug digest.org can give you some idea how your different meds and supplements work together, but it doesn't tell everything because everyone reacts different to meds.

Why are you taking burdock root it is a diruretic, makes you pee, which is counter to what salt loading is doing for retention of fluids. As far as the dizzyness, that usually means low blood pressure, especially with the heat of the shower. Perhaps your topirmate also lowers BP and with the labetalol it is bringing you too low. What is the topirmate for?

Another question before you started meds, where you mainly getting hypertensive when standing, mainly hypotensive, mainly tachy or a combination. Also how do you know what was happening if you didn't have a BP machine to tell you what was happening. Why do you think you are hyperandregenic? Have you had a Tilt table test done yet?

All these questions, testing and monitoring tools are necessary to figure out what's going on with you. I had to fly up to see Dr. Grubb in Toledo, he gets many of the hard cases. It appears I am hyperadregenic due to small fiber neuropathy diagnosed by skin biopsy. My BP and HR go up when I stand and talk, I get syncope with a trigger, which is why Grubb put me on labetalol. I go both ways and labetalol does both as well. With hyper form of this your adrenaline spikes when you stand. I have yet to confirm that and will be doing the test to see what is happening with my adrenal hormones next week. If I have a huge jump from supine to standing. Then that will confirm it, even though we are already treating it. Well that's the best I can do for now.

[poppetkazutaka]

The burdock root is for constipation. It's the only thing that works that isn't a painful bowel stimulant that causes me to writhe in pain. I only take it when I've waited for more than five days to use the bathroom, because it takes the water and forces it to be used to lubricate my intestines for a movement. They tend to get inflammed because when I try to go all I can get out are 'ribbons'. I have had a colonoscopy and they found nothing.

The topiramate is for mood swings. I am manic depressive by genetics. I stay happy\panic manic if I don't take the topiramate, and would have a heart attack if not on it. I have to have it, I can't not take it. The other medicines I've been on do not work. Wellbutrin, Zoloft, and there was one other one in line with those I have tried. They didn't work in the long term and actually made me want to hurt myself and I attempted suicide.

Before the medicine I would get up and move around a lot, then go sit down and do some work, then I would get up to do more work and pass out. Or flush over my face and collapse or go tachy. They put me on meds and after a year I was hypertensive due to the propranolol. Apparently if you're on it long enough it gives you high blood pressure.

I've had two tilts and one was not covered by insurance. The first showed nothing, the second was 'borderline' only because I didn't change enough. I didn't pass out I just got sick, tachy, and dizzy. I am not getting another because of the insurance **** I went through. I don't have a Costco here and I haven't seen any BP monitors in town, so I would have to order one. Hence the expensiveness.

[arizona girl]

Well that is interesting about your digestive problems. I have those issues too, probably due to the the small fiber neuropathy, those fibers effect all your autonomic functions. BP/HR, digestions, mositure production. I'm still working on fixing that problem. Be carefully because if you have ribbon poops (I did too) you can get a rupture. That happened to me of course I had also received injuiries from my seat belt in a bad car accident. I understand about the topirmate. Changing BP meds would be the option there not your topirmate. Just so you don't feel bad, I went thru 9 bp meds before the labetalol. Oh, yes the propran made me go higher too, that is what I was on before the labetalol.

If you were passing out when standing, that is usually low blood pressure and is the more common form of this. The treatment for the low blood pressure form is different then the hypertensive form. You may be getting to low with the labetalol. Again why do you think your hyperandregenic? I was also started on only 50 mg of labetalol and was to work up to 200, well 100 worked enough.

If you are able to get a copy of the actually measurements that were taken during your TTT, not the opinion. You don't have to pass out to have a positive test. Passing out just show you also have syncope. If you had a change in HR of more then 30 points supine to standing that is positive. The same is true if your BP drops. When I had my TTT my BP and HR went up up, was in terrible body pain, then they sprayed the stuff under my tongue I went even higher, spiked and then dropped like a rock and would have gone into assystoli if they hadn't put the table down. That spread sheet they do on you is very telling, you need to read your own numbers.

Okay well now you are just making excuses about spending the money on a BP cuff. I know Target, walmart, walgreens also have cheap machines too. This will be a very useful tool for you, pony up and buy one. Once you get one home start checking first thing while still in bed before you move and then after you've been up a bit and then when ever you feel symptoms. You will be amazed at what your body is doing. Write it down and bring it to your doctor.