yuliya

My first pregnancy was horrible (high blood pressure, diabetes and swelling, felt horrible) the second pregnancy was a complete opposite (supper low blood pressure, no swelling, no diabetes, felt great).

A few times a month I get random numbness in parts of my body, mostly on the right side. Yesterday the right side of my face was numb and today my right foot/toes are numb and tingly. I have also had it in my right fingers, but not this episode. It almost feels like my foot is not lifting up high enough when I walk, its not dragging but feels close to it. Any one else get this and what could it be?

Thanks

Well said, Sue!

Sometimes I feel crazy too (during more vulnerable moments) and other times it is all crystal clear - I have a "rare" condition and there aren't many Dr's equipped to deal with it. I know this is not a figment of my imagination, but sometimes feel so beaten down (by the symptoms, the lack of medical understanding, by my limitations) it's hard to cope with emotionally. Thank God for this group.

I'm so glad I am not alone in this feeling. Today has been a horrible day and days like this make me want to give up on life all together as horrible as that sounds. Of course this in not an option, I have two wonderful kids to raise and take care of and have to push on. Thank you everyone that responded really made me feel better.

Have you ever felt like even after you had a positive tilt test and always feel bad that maybe its all in your head? When your doctor continues to doubt your sick even if the test say you are it makes you wonder. Sometimes I feel like giving up looking for an answer and think maybe it is in my head, but if it is why do I feel so bad. Some days are so hard.

1. your blood pressure does not need to rise or fall to diagnose POTS. My blood pressure stay relatively the same.

2. My pulse goes up a lot of times but not every time. I have good days and bad days.

3. I have not noticed any difference after eating again. again there are days that my pulse races all day and others when it somewhat normal.

4. Yes. I have days of dizziness and feel horrible but it doesn't show on measuring stats.

5. I have insomnia and take medicen for it. I attribute it to adrenaline surges and palpitation.

6. GI issues can be caused by a lot of different things, and some people with POTS have no issues with GI.

7. Tachycardia over 200 would probably be considered worrisome and on top of that it would matter on the kind of tachycardia.

hope that helps, just going off my own symptoms not an expert at all.

there should be a way to find out on the states licencing board of physicians. Its public information.

Also I forgot to mention I have extreme thirst from it. I feel like I can never get enough to drink.

I just started Florinef one a day, and the only difference I see is lowered blood pressure and headaches. I am thinking about going off of it because of the headaches. It feels like my temples are going to burst yet my blood pressure is lower then before.

Yuliya

Very good to know, I have always wondered. I was under the impression that all they do was supplements and natural healing. Totally opened a new line of thinking for me. Thank you.

Actually my pupils have been weird lately. One stays much bigger then the other and people have noticed it. The doctor has no clue why and neither do I .

also I wanted to mention that I am super sensitive to dilation drops. I stay dilated for 2 day and have sever tachycardia from it.

Actually my pupils have been weird lately. One stays much bigger then the other and people have noticed it. The doctor has no clue why and neither do I .

My report say "suspect atypical chord insertion on the ventricular surface of the anterior leaflet" "Trace tricuspid regurgitation noted" My doctor never mention this and said everything is normal.

Any one have any clue.

Thanks,

Yuliya

Yes it seems that dr.grubb has helped my dr with a lot new medications to try but took away my hope of mito testing. Lol. My dr was all for it at first. I'm very disappointed but at least I have tons of new meds to try. I still feel very strongly about the mito and hopefully I can change his mind.

I would just like to know how many have been diagnosed with both Mito and POTS? I wanted to get tested for Mito but after my Dr. talked to Dr.Grubb he decided it was too rare to bother testing for it. Any one have any suggestion to get him to change his mind? I really think mine is connected since my POTS didn't start out with a virus or injury (had it since I was a kid), and since my symptoms are getting worse I hoped a diagnosis of mito might lead to better treatment.

Thanks for any advise and suggestions.

Yuliya

This is scary any advice,

I'm just hanging out at 90 pounds.

I have paranoia and OCD about it.

I'm scared.

Okay I've always been thin.

My high school weight was 92.

I've hung out around 90-100's all my life but felt good.

I have a very small frame and am about 5'2".

I think what scared me was the weakness I felt with the POTS.

I am not feeling as much of that but I'm not trying to do very much either.

Is there any way I can gain weight?

I am drinking an ensure at least a day and eating little bites all day.

I have a feeling I have a very high metabolism because most days I'm getting at least 1000 calories but I'm not really gaining.

Any advice at all?

Last month had blood work and that was normal.

Just slightly low hemoglobin which is normal for me.

1000 calories is way to low for anyone, you need to be getting at least 2,000 to gain weight especially if you have a high metabolism.

That is good to hear. Propranonol made me feel about 30% better so I'm hoping this has similar effects! I will let you know.

Good luck! Wishing you the best let me know how it works out.

I have had POTS all my life. When I got the shot as a teenager I had pretty bad reaction to it. I had 30lb weight gain not related to food or exercise. Also had a period for a year straight. I don't know if it was POTS related or not, but since then I stay away from hormones as a rule.

Im on Metoprolol xl 25 mg. I started out on 12.5mg. So far its fine, I have noticed it decreased my palpitations by half, lowered my heart rate about 10 beats, and no side effects yet. I have been on it for about a month.

My symptoms get worse during my period. I am completely wiped out and sick.

I am so frustrated!! I have had pots for most of my life but was only diagnosed in 2008. I think it took so long because I also have mitral valve prolapse, CFS and Fibrbomyalgia and there was so much overlap in symptoms. Anyway I have been on BB and midodrine since then and was managing the daily dizziness, near-syncope etc. I could walk reasonable distances, like the mall, although slowly. Then suddenly last february I began having severe episodes of shortness of breath and chest pain/squeezing follwed by syncope whenever I exerted myself even a little. I often feel ike I am being strangled from inside my chest....my heart pounds in my throat and head too. I can't catch my breath and often have coughing fits. I become so debilitated that I need a wheelchair even to get to my bathroom. It takes me weeks or even months to get back to being able to walk even in walmart leaning on a cart. I get so pale I look dead and so lethargic I can barely speak. Every time its been bad enough that my hubby thinks I'm having a heart attack he takes me to the ER and other than a slightly elevated cardiac enzyme and some episodes of tachy, they can't seem to figure out why. Admittedly they don't really look hard...xray and bloodwork and then they always send me home to follow up with my doc.

The best explanation I get is that my heart is not getting enough blood flow which makes sense but why all of the sudden and why in such severe episodes? I finally got to see my pots specialist today after waiting a YEAR because of him cancelling so many appointments and his answer was that my heart wasn't getting enough blood flow because of the blood pooling in vessels in my legs. But this explanation isn't satisfactory in this case for several reasons...

1. I already knew I had that problem which is why I am on midodrine (even though he's never done venous testing on me)

2. these episodes never happened before and nothing has changed

3. the epsiodes can happen while laying down and especially while walking which is when venous return is supposed to be best due to the muscle motion helping squeeze the blood back up

4. my blood pressure is not usually low during these episodes (sometimes its high)

He suggests that I just need to exercise to strenghten my legs but I can barely stand up half the time and even if I could exercise, thats what I WAS doing when these episodes started. I only stopped exercising AFTER I became debilitated. He didn't listen to a word I said....

I don't know whats going on with me and no doctor will help....they just pass the buck.... I feel like I am going to die of a heart attack before they figure out that I'm not over-exaggerating how severe and debilitating these episodes are.

Anyone have this happen to them or know whats going on?

I have had pots all my life as well, and my episodes didn't become bad until this year and one of the reasons I finally got diagnosed. My symptoms became just like you have explained, and I finally was able to get a diagnosis, but not a treatment plan that works yet. POTS can get worse, and better. Sorry I can't really help with advise, all I wanted to say is I have the same exact symptoms as you and know how you feel.

Thanks everyone for your suggestions.

Wow, 8 miles, thats amazing. I can't walk around for longer then 10 min. without getting dizzy. thats wonderful!

What is the specialty of the doctor that treats you for your chronic fatigue?

My doctor has suggested exercise to help with my symptoms but I am unable to do much because of the fatigue and dizziness. What are you able to do for exercise?

for all of you POTS out there...do you or did you suffer from fertility problems. my husband and i have been trying for two years...i know i need to see a fertility expert, but i am just curious if i am in this boat alone. any tips?

I have had POTS all my life (diagnosed January 2011), I didn't have any fertility issues, but it could very well be related to your POTS.