Angelika_23

Just wondering. After I fainted (after my TTT) the other day, when I came around, they tried to sit me up but I felt so awful, and my face and hands were tingling. It was such a strange feeling. I had to lie down again, and I was SOOOO sleepy, I couldn't keep my eyes open.

Now I remember having that tingling sensation before... I think I get it right after I collapse or faint. I don't have to go unconscious to get it, just have to hit the floor.

Angela

Sophia3,

I have finally gotten hold of the nurse practitioner for the cardio and asked her for a copy of my results. She was rather reluctant to agree to it. (???) I also told her I am very symptomatic again. She says no one can do anything for me until the neuro tests are done. (sigh) I feel like an orphan caught between neuro and cardio. No one wants to take resonsibility for my care. Both of them actually stated that if I am feeling poorly, I should go to the ER. No way am I going to the ER. I am not feeling that poorly. It's not an emergency.

BTW, I had two veins give up while they were trying to take blood from me. They are spectacular in their bruising. One is actually a very dark purple, almost black. How long does it take the bruises to go away? I have one on each arm, and it probably looks like my husband abuses me.

Thanks,

Angela

doctorguest,

I will have to get that information, I do not have it. I already put in a call to them, I wanted to let them know how I am feeling today, but they did not call me back. Seeing as it's 7:00 now, I doubt they will call me back today.

When/If they do call me back, I will get that information.

Thanks for the information, Maxine. I hope you get yours figured out, too.

Thanks,

Angela

doctorguest,

I was told that my bp did not really fluctuate at all, and my HR stayed at about 120 most of the time while I was tilted. It went to 152 for a few seconds, but didn't stay there.

That's all the details I know.

The odd thing about me is, I have never fainted or collapsed unless I have been walking or climbing stairs. I told them that if they added a stairstepper to the test, I would give them the faint, and probably within seconds.

The neuro's office called back, they have ordered a sleep deprived EEG, an MRI of my brain, lots of labs, including a 3 hour fasting glucose test? and some x-rays. Sounds fun, huh?

Thanks everyone,

Angela

I am so frustrated! Just got my follow up call from the neuro's office, they wanted to know why I had the TTT. I told them because the EP Cardiologist ordered it. They also didn't understand why I am seeing an EP Cardiologist. I told them that the EP sent me to see them, that they were "sharing" me for a while. I had spoken with the neuro about this, she was fine with it, but she's out of town right now and I guess she didn't write it down. She had also known I was having the TTT yesterday. Guess she didn't write that down either.

I am shaky and slightly tachycardic still today. I asked the neuro people about work tomorrow. They said to talk to the ER. I told them the ER told me to talk to neuro. Then they tell me the neuro is out of the office... If I am feeling poorly tomorrow, and I'm sure I won't be back to what I was pre-tilt, then I have to have a note for my boss if I miss work.

I am starting to feel like we are never going to get this sorted out.

Angela

Hello All,

I had my tilt table test today. My results were negative. The doctor only held my afternoon meds today, so he says that my prior medication may have skewed the results.

The odd thing is, AFTER the test, I was walking out of the testing room and I fainted and hit my head and shoulder on the wall. What is up with that? Negative test results, then I faint AFTER the test?

They sent me to the ER. I did not want to go, but felt so bad I didn't argue too much. I sat in the ER for six hours. I got a head CT, a finger stick and an EKG. They did not give me fluids. (I hadn't had anything to eat or drink since dinner the night before, so I was pretty dehydrated). They released me and told me that I needed to call the neurologist in the morning.

My husband thinks they sent me to the ER because I hit my head on the wall and they were covering themselves, not because of the actual fainting.

I don't understand what is going on with me.

Angela

No, I see another doc, soon to be three docs. I have a pulmonary doc, now a cardiologist and soon to be a neurologist.

I am hoping I don't have to go to see Dr. Grubb. That's a long drive and I have no one to take me.

Angela

Hello,

Well, my appointment was okay! The doctor did not agree nor disagree with my POTS diagnosis. He wants me to see another neuro, and wants to do a Tilt Table Test and then go from there.

I did not have a TTT before, my other doc did not do one. I am terrified of doing this test.

He cancelled my CPX test for the time being.

He said depending on what the TTT results show, and the neuro stuff, I may be going to see Dr. Grubb.

And yes, today was a good day. I was so afraid he would say "You look fine, you are allright". I am so tired of hearing that lately. But he didn't.

Angela

Hello there,

I have acid reflux, and my doc put me on 20 mg Protonix. I do well on it. I like the fact I don't have to wait an hour before eating anything after I take it like I had to with Nexium.

Two of my children have reflux too, one takes Protonix, the other takes Zantac. They seem to do okay.

Good Luck!

Angela

Hi Dawn,

I wear the waist hight 30 mmHg, and I remember the first time I tried to put them on. My husband hid, too.

I turn mine inside out, get them over my heels, then get them over my calves, then pull them the rest of the way up. I don't use gloves.

When I take them off, I leave them inside out and wash them and hang them that way. Then they are ready the next morning's battle.

A tip I got off this site, that I found helpful, was to use the spray deodorant on the bottoms of my feet. That helps keep my feet from sweating so much while I am wearing the hose.

They aren't really that bad, except you don't get a tan on your legs. At all. When I went around my husband's family in my bathing suit, they all said they needed sunglasses to look at my VERY white legs.

Hope this has been helpful,

Angela

Hi,

I take Zyrtec every day. I used to take Zyrtec-D until they discovered I had POTS and now I'm on plain old Zyrtec. I don't have any noticeable side-effects. I do notice if I don't take it though. My allergies get bad.

Good luck!

Angela

Sophia3 PFT means Pulmonary Function Test Thank you, I do have a lot on my plate, but now I have some hope that someone might be able to help me and that means so much!

I am kind of worried about this test, I couldn't get through the PFT, this sounds much more physically exerting than the PFT was...

Thank you everyone for your kind words and advice!

Angela

I have been referred to a new doctor at University Hospital. This doctor professes to be familiar with POTS. I am soooo looking forward to getting another opinion of my diagnosis and treatment. Should I get my hopes up? I think I would just cry if I got there and he said he couldn't help me.

My symptoms are all over the place. I have good days and I have bad days. No rhyme or reason for what makes a day good vs. bad. My luck, I'll get there on a good day. Oh well. Even on good days, all I have to do is stand up and my heart rate skyrockets.

Thanks for letting me rant,

Angela

I am scheduled for a CPX test on August first.

Someone told me it is like a PFT, but you also have to ride a bike with increasing amounts of resistance. Since a PFT can send me to the ER, I am wondering what this test might do to me...

If anyone has any insight, I would love to hear it.

Thanks,

Angela

My neurologist appointment was pretty much a bust. But he did confirm that I do have Chiari I Malformation. He told me it doesn't mean anything, it won't affect anything.

??? Why is it diagnosed if it causes no problems? I am so confused.

Can someone lend me some insight on this? I would surely appreciate it.

Thanks,

Angela

Well, my "almost" worst fears were realized.

The only productive thing that came out of this was that I definitely have Chiari I malformation. I will start a separate post for this as I want to ask more questions about it.

He basically said he didn't know why I was there, he couldn't help me, the only thing anyone can do is control the tachycardia, I have to just live with the rest.

I'm pretty down tonight.

Angela

Hello there,

Yes, I have the same problem. I have had all the asthma tests and they have come back normal, even though I end up in the ER after them. The doctors are blaming the breathing "problems" on "my condition".

It seems to go with the territory.

Sorry not much help,

Angela

Donna,

I am sorry you are feeling so poorly. Sending good vibes your way. Hopefully you can find a doctor who can help you.

Hang in there,

Angela

Hello,

I am going to see a neurologist tomorrow. He saw me three years ago, but only to do an EMG test (which I later found out showed a slight delay in my left side...) I never saw him again, or even remembered him when I got the referral to see him.

I am quite nervous about going after seeing all the problems others are having with neuros lately. I half expect him to jump on the "I'm just depressed and need counseling and medication" bandwagon.

Hopefully I don't get nervous enough to make my POTS act up more. Or maybe I do?

Angela

Hello,

I get that, no one knows what it is. Mine doesn't come at any specific time, though. It doesn't matter if I'm sitting, standing, laying down. I do know that NOTHING helps it except rest. I have tried Ibuprofen, Ibuprofen 800, Tylenol, etc.

Do you get the knife jabbing pain right beside your shoulder blade in back?

My cardio says there is nothing wrong with my heart, so he is not sure why I am having the pain. My closest guess is that it is my body telling me that I need to rest, that I have overdone it.

Not much help, sorry.

Angela

Yay for you! I am so happy to hear your good news!

Angela

You know, I thought the same thing that night... What if I just "forget" to tell them I have POTS? It was a hospital I hadn't ever been to (kinda scary) and they wouldn't have known from previous records. Would the results of my visit been the same? Or would they have admitted me? Interesting to ponder, and glad I am not the only one who thinks like that.

Thanks for the post,

Angela

Hi Linda,

I am sorry you are having such a terrible time. It sounds like we are in the same boat.

I don't know why some doctors have to act like that. I know there must be good ones out there. I will pray that you find one. You are not loony, and it's okay to vent.

Try to keep your spirits up,

Angela

Thank you everyone, I really appreciate you. I am really feeling pretty alone now, if I didn't have this place to come to I don't know what I would do.

My pulm doc called me, he is going to try to locate an EP doc in his hosp that is familiar with POTS and that can maybe help me. He said his secretary should call me tomorrow with a tentative appointment date. I really needed good news today, and that phone call was a relief to me.

I tried to go to work today, had to do a two hour training session and it set me off again. Apparently, just talking for an extended period of time (even while sitting down) is exhausting to me and causes symptoms.

Thanks for all the advice!

Angela

Hello,

Does anyone know if Florinef can cause you to be tachycardic? I mean, more than usual? Just wondering because I took it today, and about an hour later I felt my HR take off. I feel better now, but it was pretty bad there for a while. I tried laying down, but I kept feeling my heart thumping. I hate it when that happens.

I called my doc from pulm, and asked him to get me a referral for another doc to help me with POTS. I want to get a second opinion on my current treatment, and if something else might be going on as well. My next appointment with my current doc is four months out, and that's just too long while I am so symptomatic (I think). I have been off work two days now. Since I can't walk very far without my legs giving, I just don't know what to do. I don't understand this at all.

I went to see my PCP, and he told me he doesn't believe in POTS, that I am clinically depressed and need medication and counselling.

This has been a very bad day.

Angela