Angelika_23

My son had his IgE and IgA levels done at his last follow up visit. They tested him when he was very young, and told me he had an IgA deficiency.

His levels this time are Ige - 6, IgA - 704

What does anyone make of these numbers?

Hi, I have this too, and it is due (in my case) to hyperventilation. I don't know what causes me to hyperventilate, but that is what it is for me. It is an awful feeling. I don't get it anymore, now that I am on POTS meds.

Good luck,

Angela

P.S. I understand what you are saying about your situation but speaking in general terms, everyone on this site with POTS has IST----meaning, POTS, by it's nature, is sinus tachycardia and the rate is inappropriate for the activity level of the person thus almost always inappropriate sinus tachycardia for everyone. I just don't want the terminology to confuse some folks on here.

Poohbear,

My heartrate is tachycardic even at rest, which is why I have the diagnosis of inappropriate sinus tachycardia. Take out the postural component, and it isn't POTS anymore.

Angela

Sorry I can't help with your decision, but I too have IST and POTS. I have not had any ablations, my rapid heartrate is pretty controlled with a beta blocker. At least, enough so I can walk around and function some. Any stress, like illness, my period or being tired will make me tachy though.

I wish you luck, and hope you find some answers.

Angela

Are you sure you don't have strep? When I get a sore throat nothing will touch, it is always strep throat. You may want to go to the doctor and have a rapid strep test done. You don't want to let strep throat go.

Feel better,

Angela

I am happy about losing stress, but I am hurt that after 10 years of employment, they can't even mention they are sorry I am leaving, let alone WHY I am leaving. Guess they are too excited about the new girl to consider my feelings.

I am really really down today guys. They just announced my replacement at work today. The email was a glowing recommendation of her, and nothing about why I am leaving, no little "we're sad that Angela won't be with us...". I am really and truly bummed.

Probably people think I am being fired due to attendance issues.

People can be really insensitive. While POTS isn't usually life threatening, it IS life altering. I am finding that most people don't understand that, probably because they can't SEE what is wrong. It is very hurtful when people say things like that, especially when they don't know what they are talking about.

Keep your chin up,

Angela

Just got my doctor notes in the mail from Cleveland. This part was something I didn't hear while I was there.

"The appearance of symptoms post viral meningitis raises the question of an autoimmune ganglionopathy..."

I did a search on here, and on Google, and did not understand them. Can someone dumb it down for me please?

Thanks

Angela

I don't think I'll ever get an answer. But on the off chance I do, I'll be sure to post on this board. of course.

I do not swell at all. Just turn funny colors.

Angela

Firewoman,

The pain is all over. In my calf, in my thigh, in my upper arm. Those are the spots it is commonly in.

No, I have never been on crutches due to the pain, I honestly don't think I could handle walking on them without passing out.

I don't get the drawing up arm thing.

You are the first person I've heard of with similar left sided issues.

Angela

Oh Morgan!

I am so sorry for what you are going through. (((HUGS)))

Angela

No problem

Severe left sided feels like deep muscle pain. In my arms and legs, even in my side and face sometimes. I get headaches on the left side, behind my eye and the base of my skull. The pain in my leg gets so bad I can hardly walk at times. Again, feels muscular.

Is that what you were looking for?

Angela

The QSART and bloodwork all came back fine.

Thanks for asking

No answers for the left sided pain.

Angela

Saw my test results - My HR increased by 78 bpm during the tilt! Wow. I qualified as POTS within the first 60 seconds of the test, but hung on for almost 7 minutes.

Angela

I am on my way out of my job. They need someone who can work 40 hours with no unexpected time off. I have been part time since 2007.

Angela

Hi,

I will soon be going to Cleveland clinic if you don't mind me asking about Insurance stuff? Did you have to pay or deal with medicaid from another state or do you know if they have financial assistants? And how long was the visit just 1 day or longer? Thanks Mae

Hi Mae,

I have private insurance, so I didn't have to deal with Medicaid or anything like that. Sorry I can't be more helpful with that information. Good luck on your trip!

Angela

That seems to still be a mystery.

That's me, a mystery.

The doctor is calling me back on Monday to talk about that some more.

Angela

Dr. Matte called me today very quickly. She said all the bloodwork came back fine, and there was no evidence of neuropathy in any of the testing. She did also say I had a startling increase in HR on the tilt. I am eager to see the test result myself and see what "startling" means...

So I guess it is officially official. I have POTS. Dr. Matte called it Idiopathic POTS. (?)

Angela

Just a thought, are you sure you aren't getting the flu or something on top of your "normal" issues? I know when I get an illness on top of my normal stuff, it sure messes me up good.

Angela

Gary.

I have to echo some others on here about you changing and dropping meds so quickly, and adding supplements on top of them. I understand your frustration, but you may be making things worse by the continuous changes.

I have been diagnosed by one doctor with having the hyperadrenergic form of POTS. I went through some extremely bad times until a new doctor put me on Toprol XL. I had had other beta blockers, and they all made me worse. I was seriously considering not taking the Toprol because I was afraid to, but now I'm glad I did. Aside from some weight gain, I haven't had any side effects. Historically I am extremely sensitive to drugs, and have more bad reactions from them than good.

So I guess what my point is, just because one type of something didn't work, don't discount all types.

I have found if I chug a big glass of water very quickly, it will slow things down for a little bit, enough for me to get some rest. Have you tried that? I wouldn't do it all day long, that could cause more problems, but once or twice a day wouldn't hurt.

I just recently went off my beta blocker prior to testing. It was awful. The adrenaline surges were back. The trembling as well. I didn't sleep one full night, I was a mess. But I kept reminding myself it wasn't going to kill me, even though I was miserable. My friend, who is an RN, has been studying up on this stuff probably for me, and when I'd call her in tears, she'd talk me down, saying I know it's horrible, but it really won't kill you, just hang on and things will get better. So this time, knowing it won't kill me didn't make the symptoms better, but it made my anxiety about them better. I read, watched TV and played on the laptop in bed and tried to make the best of it until it wound down.

Good luck,

Angela

It seems like I can't have just one doctor. And none of them know each other, so they don't really communicate (except to my PCP who thinks I am mental) about me. Plus, some of them disagree... I saw a rheumatologist who thinks I have fibro, but the neuro doesn't think so... I also see an EP cardio. They all like to change meds every time I visit one. I feel like I am stuck in the middle.

How do those of you who see multiple docs deal with this?

Angela

Hello All,

I am back from Cleveland Clinic. I saw Dr. Shields and Dr. Matte. They were both very nice, and LISTENED to me!

They aren't sure I have POTS, but think it is something in the same family? Also, they said something about small fiber neuropathy, but I don't know what that is. I will do a search on it soon.

I had a TTT, a QSART and some breathing tests. I don't have any results. My husband didn't pay close attention to the numbers during the TTT (probably because he doesn't understand what they mean), but he said he thinks he saw my HR in the 160's right before they brought me down. (I was really lightheaded and feeling nauseated). I had to get a lot of bloodwork done too. (7 vials!)

They told me they'd call next week with my results and some recommendations. They said I may have to come back for more testing, depending on what the current tests show.

It was not a fun day, but I will be glad if we get some answers.

Angela

It is a constant sharp ache is the best way I can describe it. Like deep muscle, nothing can touch it. I am also noticing that I can't type as well as I used to, the letters I type with my left hand are often out of place.

I don't have shingles, unless you can have them with no skin markings. I have had them before so I know what to look for.