kalamazoo

That's exactly what I thought, luckily I didn't faint though, which I've never done before but I sure came close. I can't imagine feeling that way for longer than ten minutes.

I've heard a lot about this dr grubb, I think I'm going to have my doctor try and contact him because I definitely think I need a second opinion. And I agree with both of you ladies, I didn't know there needed to be a time frame, sounds kinda fishy.

I will definitely tell my doctor this, he's new to POTs so I sure hope he can't help me as I'm going crazy. Hopefully he will put me on a holter for a few days. And I'm sorry your in phoenix, I used to live in Tucson and the heat made me miserable. I'm in alaska now and the cold is almost as bad!

So my heart rate went from 90 to 140 upon standing while my bp didn't change very much. But since my heart rate didnt stay that way longer than ten minutes the doctor said its inconclusive. What the ****! Anyone had these results? I just want a diagnosis, I'm going crazy.

70 is not a high number for a resting heart rate, even up to 90 is fairly normal. POTS or not.

I've had this for several years. It's from both my POTS and asthma and a little GERD too.

Mine is about 80-100 and then when I'm doing somwthing it jumps to 130-150. My fast heart rate is my most bothersome symptom.

I've tried running, walking fast and even lifting light weights but my heart rate just goes entirely way too fast so I have to stop because I become out of breath. I even become breathless just getting out of bed in the morning from my racing heart when I stand up and forget stairs, they are the devil.

Can I have all the information on him? I'd really like to see him and I'm going to seattle soon. Pretty please!

Doesnanyone else have high plateletes? Mine aren't abnormally high, they're 430 but I'm curious as to what everyone else's levels were.

Has anyone had any luck with this medication? My dr prescribed it because my heart rate was extremely high and my blood pressure was also elevated. I've also got erythromelalgia so I'm a little curious how this will effect it. Doc said it'll either be really good or really bad but that I need to take the chance.

I just wanted to thank Issie and those of you who encouraged me to communicate my feelings and fears with Rob (my hubby). We had a long talk and realized that both of us were just really afraid in our own way. Without going into too much detail, my personal health situation makes sex difficult at best, yet not impossible. But it isn't really the sex that I'm needing, it's the contact and affection. Rob admitted that I seem so frail and ill that the thought of sex often seems out of the question, and because at this point he is my primary caregiver, plus we have SIX children (ages 8-15), and his mom newly placed in a nursing home after a bad fall- she is 78 years old and has uncontrolled diabetes and we just found out, early stages of dementia. Just last week when he went to visit, one of my fears came true- she didn't know who he was for awhile and then she had a sudden burst of anger with him when she did remember him (long story- but she does not understand nor remember why she is in the nursing home, he is an only child and his dad died when he was 13- we tried to care for her but now with the dementia AND the diabetes they have trouble controlling in a medical facility, with 6 kids and my condition- we just realized it wasn't safe to have her with us). That is another huge stress going on. As an only child, he feels so responsible for her and is heart broken that she is so angry at him for putting her in a "home". If I wasn't so ill, we might be able to do it, but for now it just won't work- and he's riddled with guilt.

To make matters worse, he lost his job in December (he was an independent contractor working on a large project with 2 others- he works as a structural steel detailer, meaning basically he does the dimensions for the steel in large projects) He lost his job when I was admitted to Mayo because they had a large deadline coming up and he needed to work 70+ hour weeks for the next 4-6 weeks in order to keep up: with me being at Mayo (an hour from our home), his Mom,and six children at home there was just no way he could devote that time so he was terminated I guess is the word. He was pretty upset because he had devoted so many hours to this project already but really, as I told him, what else could he do? And we knew after my 2 weeks at Mayo I would be going to acute inpatient rehab and getting 12 weeks of IVIG infusions (only received 3 because I went through a very nasty rejection- but that's another story) I was in the inpatient rehab for another 2 weeks and had been in our home hospital for about a week prior to Mayo- so I essentially was hospitalized for almost 5 weeks (from Thanksgiving until New Years).

So we talked and I think we both have a more clear understanding on where we both are. Really, for the most part, sex is not a priority and not really an option most days because of my health- but I need some contact and affection. And he's been afraid to even be too affectionate with me because of my health and what he sees as fragility (I've lost 40 lbs in the last 3 months) and that I will misinterpret him. So talking it out was the best thing, thank you. So seemingly simple but I just hadn't thought of it from his perspective. He has definitely gone through a life changing several months, just as I have as well as the kids.

We are both just mentally and emotionally drained and exhausted. Physically, I've not improved- in fact I've gotten worse from the rejection. We don't know what kind of treatment Mayo has in mind because of my dangerous reaction to IVIG. I go back in late March after all the IVIG is out of my system and they will give us the options then. I think at this point, we are both tired and worried- we need the comfort from one another but both were afraid to seek it out. He never wanted to bring it up with me because he's trying to be strong for me and I felt rejected and humiliated that my husband looked at me as a patient and not a woman (he swears this is not the case)! So I told him that I need to be held and cuddled and he knows that sex is not really what I want or need now and is okay with that. He is also aware now that I still have the "physical" needs of a wife; to be hugged and kissed. And he has the same needs too.

I think both of us are really struggling with our own individual issues and we really need to make an effort to be there emotionally for each other. It's so hard with this condition, because at this point my energy is zero. I'm really struggling with a lot of things, and at the top of the list- WHAT do I do next?? I've lost a lot of faith in the medical community because they don't seem to have any consensus- from doctor to doctor- not just facility- how to deal with these 3 conditions I have (autoimmune deficiency, autonomic neuropathy, and a "connective tissue disorder"-likely EDS but refused to test me because Mayo will not recognize a link between EDS and ANS dysfunction. Not to mention the daily pain and discomfort we all live with daily.

Sorry- I went on quite a bit and got very off topic but thank you for your advice. It made a big difference and we both feel better. I realize how lucky I am to have to have such a supportive husband. Thank you all so much. If you have any advice to offer on any of my other issues, I will happily listen Thank you, thank you- as always- Jen

That's great that you talked to your husband, talking especially involving this type of situation is the best thing. I had a complete breakdown the other night and my boyfriend simply said 'I will always love you and whatever you go through, I'll go through" That's the exact type of thing I needed to hear. A significant other can be the best medicine.

Wow thank you so much for all of thw information, i will definitely be asking my doctor about this. A lot of my symptoms fit thia description. I have a question though, what kind of doctor would diagnose this? I always get confused which specialist to see seeing as i have so many. Also I have another question, what type of specialist diagnosed your POTS?

It's so great that many of you have such supportive spouses! My spouse hung in there for a few years, but couldn't take that I was robbing him of his peak years and couldn't remain faithful. I was too afraid to have sex because it caused palpitations so hard I felt my heart stop and it took my breath away. Kind of kills the mood--especially if you pass out at climax! Embarrassing!

I'm so sorry that happened to you. It hurts so much when the person you love the most cannot be empathetic. The worst part of this illness is the lack of understanding from virtually everyone. I often think that if my husband could feel the way I do for just 15 minutes he would never complain again when I'm "too tired"

Leigh I'm so sorry, some people can be so selfish. It's his loss though!

And gosh making anyone understand is like pulling teeth, its so hard to describe a feeling. Everyone feels love but everyone also describes it differently. This makes explaining something not many people feel even hard to explain. My boyfriend usually just hugs me because he doesn't know what to say. Sometimes its what I need, sonetimes it isnt.

My heart rate is always elevated i feel. Especially when standing and active. I want to start exercising but I'm too scared to even start or know how to begin? Can anyone give me pointers on how to go about exercise. I would really like to get ny heart rate lower and i know i need exercise. Any advice is much appreciated.

My resting HR used to be in the 90-100's UNTIL I began earnestly exercising. It's now around 65 BPM. My disease process was at it's worst when my HR was highest- so exercise was pretty close to impossible at that point. Once I stabilized somewhat (on MCAD meds), I started walking to the bathroom , to the mailbox, to the corner, around the block, etc. Now, I run 4-5 miles every other day.

Deconditioning did not cause my illness; but conditioning has greatly stabilized me.

This is very inspirational, exercising still seems pretty impossible for me at this moment but im waiting to get the okay fron my cardiologist. I noticed you have a pineal Cyst, I too have one and go back in a few months for another MRI to see the size of it. May I ask what ever happened with yours?

And I'm very surprised at such low resting heart rates. I was definetly expecting higher as mine is usually around 100.

On average, what is your resting heart rate?

Wow thats some good useful information I will most definitely be getting myself some of this, Issie!

I love anything natural, thanks for all of the information! Time for me to start adding some of these into my routine. May i ask if you could tell me the dosage of the B complex. I was instructed to not take too much niacin because it promotes flushing which can essentially lead to pooling and worsening of my pooling so I'm curious what the dosage is.

I feel stupid but what is ist and ncs?

Wow thanks everyone for the information! Very informative. this is definitely the best place to find information. It sounds like everyone has mixed reviews, more worse than positive it seems though. i just want my anxiety to go away my heart rate is bad when i have a panic attack, I can't even ask the teacher a question or stand up to say my name because immediately my heart starts throbbing. I have rrad beta blockers are good for panic attacks.

I forget things quite often and have begun mixing up words. I say things like 'door the open' instead of open the door. It happens quite often. There's roughly a 30% blood flow to the brain upon standing depending on the severity of POTS. I'm sure this affects memory.

I'm confused as to what this is or symptoms ? Can someone explain it. I can't find too much online.

I swing between Reynauds & Erythromelalgia. When I am very busy of stressed (even standing!) my hands and feet vasoconstrict. and no blood gets to them. However, after eating, if I sit down- my hands (and feet) turn hot, red, and swollen.

I suspect that you (and I have) small fiber neuropathy- which is often cormorbid with POTS

This is so weird, I'm the exact opposite. My legs and hands pool and when after eating I constrict.

Wow thats interesting Katy, thanks for all of that info and i hope you finally find a true name to your disease!

And that high flow pots, after doing some reseach sounds spot on to the symptoms I'm experiencing. Plus I have erythromelalgia which always complicates things.