What do i do?

[Miriam Poorman-Knox]

Sun,

Glad you are feeling better. I checked on line and yes Stanford does have a tilt table. This is the gold standard for diagnosing Pots. Many if not most of us have a heart problem some a murmur, some failure some others. It is good to have the testing done, and to get the tilt table. Otherwise the cardiologists do'n't necessarily know the whole picture. I was treated for heart failure for 2 years prior to my tilt, which my cardiologist didn't think I needed, but was oh so positive.

Also your thyroid imbalance causes increased HR and pulse. My pulse was normally 140bpm for years going to 200 because of my thyroid. Good to have checked. Good luck on your journey. Miriam

[Gena]

Sun,

In reference to your remark about "is the HR supposed to keep going up upon standing" - the answer is no not necessarily. They use a benchmark of an increase of 30 bpm upon standing, but it doesn't have to keep rising after you're standing. Some people have a delayed effect, i.e., HR doesn't go up until after they've been standing several minutes. According to your readings, it looks like yours shot up 30 bpm and then kind of evened out and hovered in the same general area.

Glad to hear you're feeling better.

Gena

[sunisshining]

thanks guys,

i have had my thyroid checked. and it's fine. i've had sooo much checked. i don't really want to ask for a tilt table test because these cardiologists already are annoyed with me. and i don't feel like more tests! grrfffhh!

thanks for all of your replies and for your help! i'm sorry i have so many questions! i just love u all and it's wonderful to feel welcome here! because i know i'm not alone!

keeping u all in my prayers,

sun

[Miriam Poorman-Knox]

Sun,

ASK FOR THE TEST: then your doctor will have to put up or shut up!!!!!!!

forget all the other tests you have (and will) have. Any treating cardio. will find the info helpful. ???Are you afraid of having it done?????? Miriam

[Guest Julia59]

Sun,

I know you are a newer member, and i'm sorry I haven't responded to any of your posts yet. I just wanted to encourage you a bit. I remember when my POTS first went into full swing. I couldn't eat eaither, but I didn't have the nausia you have. I was lucky for that---or shall I say blessed, truly blessed.

A bit of encouragment----it may get bettter with time, as mine did. Symptoms wax and wane, and a lot of times they don't come back as severe as the first time.

POTS is a very fickle disease---as most of us are diagnosed, we don't all share the same symptoms. Slow gut motility can cause things to sit too long in the gut---thus the nausia.

Some folks on here have talked about ginger/ginger root tea as helpful for these type of gut issues. I avoid heavy roughage---raw veggies, raisons, fruit with thick skins, anything that would take longer to digest in a slow moving digestive tract. I still eat fiber like whole wheat---I just make sure there are no seeds. It's important to have fiber----some of us just have to be careful on what kind we eat. Beans are good. My mother has some autonomic neuropathy due to diabetes, she has some slow gut issues due to denervation. She once ate some plums, and two weeks later the skins showed up in---well you know where--

I'm sorry about the rude doctor syndrome---(aka--RDS). It's bad enough having all this go wrong in your body, that last thing you need to add to your list is the RDS-------seeing rude dotors. The POTS in enough.

I'm saying my prayers for you---hoping things turn around for you. I am glad to see you are feeling a bit better. My posting has been slower as my neck issues get worse. I feel a bit selfish, as I post my questions, and NOT post answers to other posts. I read them, but typing is so hard lately.

Julie :0)

[KathyP]

Hi Sunisshining;

I have been reading all of the posts here. WOW!! Urine injection? You are certainly getting alot of information here.

I made a mistake when I first started reading this site for dysautonomia. I'm sorry I wasn't diagnosed with POTS. I talked with my doctor and he told me that I have IST- inappropriate sinus tachycardia. Which is tachycardia while standing for a period of time. I also have vasovagal depressor syndrome. It seems that POTS is the dominating syndrome at this site. I'm sorry if I thought that this was a web forum for all dysautonomias. So listening to everyones input makes it's easy to compare symptoms which seem the same.

It is extremely important to get an exact diagnosis for yourself as soon as possible. Eventhough Dysautonomia is a very complex syndrome it does not mean that everyone that has it has it the same way. There can be so many underlying symptoms of Dysautonomia, such as intestinal colic, acid reflux (can cause nausea), fibromyalgia, chronic fatigue and so on.

Have you been diagnosed with POTS or any other Dysautonomia?? The tilt table test is not only done for POTS. There are several other autonomic dysfunctions it tests for. The first thing you need to do is find a doctor. If a doctor has already diagnosed you, properly, for dysautonomia and refuses to treat you then you need to find another one. Whether it be an Internist, Cardiologist, Endocrinologist or General Practicianer, you need to see a licenced doctor. And the doctor needs to be familiar with Dysautonomia.

You stated that you go to a clinic on campus? If so, is there a doctor there or just nurses and nurse practioners? I'm sorry if I am so gruff here. Your health is at stake. You stating that you are feeling much better because of the IV's only says that you are dehydrated. But, if you can't keep anything down, then there is a definate other issue here.

I know everyone here gives great advice and wants to help. This is a great place for support. But, you should get a physician to care for you. If you are only eating crackers and soda that's not good.

I hope you don't mind my being blunt here. I wish you well and hope you find the proper care that you need. God bless you!!!

KathyP

[sunisshining]

hey kathy,

thanks for your concern. today i actually have been able to hold down tofu, rice, pasta, apple sauce, and banana. and i've had gatorade and some apple juice (diluted, tho).

i have been diagnosed with pots by a cardiologist but no tilt table test. but holters, ekg's, and i've had an echo in the past and am scheduled for another.

my dr. at the health center is actually like the head doctor there and is in charge of it...cause my parents had to call once, upset, when a nurse on the phone told me that i didn't need to see a doctor that soon to start treating my anemia cause iron takes a while to work anyhow....and my blood counts were pretty darn low, according to the dr.'s. and now she takes care of me.

i've been gradually getting better. only had to use the antinausea medicine once todya and only a fourth of it. and yes, my dr. checked me for other stuff and said if i get bad again or get worse, to go back in or call.

But thanks for your concern. but my dr. gave me a prescription for zantac to heal my stomach cause it works faster, she said.

when i went to the clinic on sunday, there was a nurse practitioner, and they gave me an iv so i wouldn't have to go to the hospital (there's the student health center and then there's stanford hospital) and then they had me come back early the next morning to see my doctor and i was there a couple more hours.

i'm also being referred to an internist at stanford hospital/one of the clinics there. apparently there is one dr. in the cardiology dept. who is their expert on pots and stuff and that's who they talked to and who helped them realize i have pots.

sorry - i don't think i was clear enough that i have been better as far as keeping food down and how i'm eating today! yay!

i have been diagnosed with pots but i have also been referred to a neurologist cause they think there may be other issues going on (i don't think so and i've already been to a neurologist at children's hosp who was really helpful), but i will go.

and i did a sleep study...haven't gotten results back. they seem convinced that i have sleep apnea..i'm not so sure, but we'll see what the results say.

thanks for your concern!

God bless you, too!

love lots,

sun

[morgan617]

I think the new thing is calling ans problems orthostatic intolerance, as opposed to so many other names, due to all the overlapping features. Fibro and CFIDS are separate issues, just an overlap with some of us. Many people have fms or cfs without orthostatic problems. I read an article by Dr. Robertson, Don't ask me where too foggy, but he says they are discovering so many overlaps and sx's, that it's become easier to call ans problems OI. So even though it seems to be caused by separate things and there are exact tests for measurements and stuff, OI is the overiding symptom with ans problems. I don't normally say I have pots or anything specific. I do not pass out, but I can't stand for very long. I just become very weak. My tilt was considered negative because I didn't pass out, but the tilt is really great diagnostically for people who do. However, to assume that the tilt is the only way to definitely diagnose ans problems, is to leave those of us who have problems swinging in the breeze. According to the literature at NDRF, it's actually not a large percentage of people who actually do have syncope. I think that with the dump my bp is taking, I may be heading that way, but no one I see doubts I have neurocardiogenic dysregulation. So I just say OI. If you do have syncope sun, it's a good idea to get a tilt table, but it is not the gold standard for all ans problems, so even if it was "negative" that would not mean you weren't sick with some type of ans problem. I think there may be a misconception by some, that unless you faint, you don't have ans dysfunction. I think this sounds a little abrupt for me, but what I am reading on this particular thread is a little worrisome to me. I may well be mis reading it, as it's late, if that's the case, sorry. But not being a fainter doesn't make me a non OI person. I guess I'd better stop now , except to say to Kathy that I was diagnosed with IST too and had ablation and am now on disability. IST is a classic diagnoses given with ans problems. And that was the first posting in a year I've seen for urine shots and swallowing. I think everyone on this site would agree that's way too far out there. morgan

[Laura]

Hi Sun! I wanted to add that I have been diagnosed with POTS and did not have a tilt test done. The doctor didn't feel it was necessary to do one as I had such a positive result from a simple bedside test. (checking pulse laying down, then standing) My blood pressure does not fall, it rises dramatically when I stand as it is trying to force the blood to circulate properly. When my heart beats too fast, it can't pump the blood out effectively, so my BP rises to compensate. I do come close to fainting at times, but not from low BP; from decreased blood perfusion to the brain. ( I should add that I have had every other test under the sun!) So I definately agree with Morgan, Orthostatic Intolerance conditions include alot more than just a dropping BP. It is a general term that encompasses a whole lot of different problems relating to the ANS.

Anyway, I hope you continue to improve, sounds like you are taking good care of yourself considering the situation! Keep it up and good luck with your test!

Laura!