Maisie87

I'm glad you posted this question! and take the thread where you'd like**

I've wondered about that too.. neither of my parents had POTS and my brother and I do..

I don't know what I will do about children either.

Welcome!!

I read your personal information and am going to go out and buy your book this weekend. (I'm serious)

You are an inspiration.

You said your son goes to Auburn.. are you from around the southeast?

So glad you joined, I'm kinda new, too.

see you around*

Maisie

Potsgirl is right. Numbers don't mean much accross the board- if 95/65 is low for you, that could be contributing to your dizziness. 95/65 is high for me, and I would probably feel better if mine were what yours is.

How long have you been on the beta-blocker? Sometimes lowered blood pressure is a side effect of beta-blockers.

As far as the seasons, I did feel better in the summer eventhough I couldn't go outside. Maybe it's something to do with the barometric pressure..? Each person is different.

And to answer your questions, you are not alone. I also experience mysterious vertigo episodes that seem to come completely out of the blue. They leave me bedridden until they pass after about 3 or 4 days.

You said you are new to this, .. new to the forum or newly diagnosed?

Have you experienced a flair up like this before?

Maisie

Janey I get this, too. Exactly as you described.

I'm trying to schedule a sleep study to figure out what's going on. I get bradycardia when I sleep as well, just recently. Bu this has been happening to be everynight for the past two weeks.. strange. And I don't know why positions matter but I do better on my left side.

You're not alone.

Please post again if you get a sleep study done, and I'll message you when I finally get mine done, because, from your description, our problems just might be similar.,

Maisie

wow this is interesting, glad I was wrong. thanks for replying

wow had no idea so many others feel this way too! Thanks for replying

and

dream sweetly everyone

Maisie

First of all, Ethansmom, congratulations on your 3rd! I'm sorry you are having a set back, but I think you are right. From what I've learned from you all on this forum is there are ups and downs, and we just have to be prepared to deal with it either way.

I'm not really fretting over this, just interested in your thoughts on the subject. And yes you're right, I won't be

making any sort of decisions any time soon... I know I have YEARS before that

Thanks so much

Maisie

I'm only 22 and am not planning on having children in the next decade.. if ever.

But from what I've heard, pregnancy will most likely cause a full fledge relapse in POTS (especially since pregnancy alone can cause POTS..). I'm using the word "relapse" assuming I will improve over the next several years.

Do any of you know if this is true?

I'm in a wheelchair or the bed at all times.. I won't do this again.** no way

I'm not particularly worried or concerned about this, just very interested in your thoughts.. ideas.. comments?

Sincerely hope you are all having good days today.

Maisie

Hi Lissy

I know the floating feeling you are talking about.

My BP did the same thing once. I was feeling terrible, racing heart, dizzy as ever and I was thinking, What's going on?! So I took my BP and HR- BP was 140/90 and HR was 130. This is extremely out of the ordinary for me. My average blood pressure is about 89/49. Really low.

I wasn't on any medication when this happened, I have no idea why it happened..

If you get anxious or panicky all of the sudden, it can cause a temporary abnormal spike in blood pressure. Perhaps you got nervous when you stood up and felt funny like you were floating?

I'm no doctor, but I don't think the fludro will make you worse because from what I understand, it only raises and regulates your baseline BP. A slight increase in your baseline BP would probably alleviate some of your daily symptoms. But again.. not a doctor.

How long have you been taking fludro, or have you started..?

Yesss. After even a crumb of gluten or an ounce of dairy, I will be out for the count for at least three days.

I also tried bioidentical hormones (mine was progesterone) and felt like I took a xanax and drank NiQuil for dessert. I never had these reactions before POTS. I would eat a loaf of bread for dinner three years ago, but all of the sudden I'm gluten intolerant. ThANK YOU pots

I just try my best to avoid any triggers that I'm aware of. Every now and then I'll find a new one.. it's a process.

You're not alone, I promise.

hmm. that's frusterating- trying to fix one symptom and you get a new one.

..I'm gonna try some licorice root today and see how it affects me. I've had some in my cabinet for a month now and was thinking about trying it anyway.

I'll post in the morning and let you know. here it goes...!

Maisie

Erika,

I watched that episode too!!! It definitely hit home with me, too. Not like it did you though, I'm not a parent. I can only imagine how that episode would penetrate you like it did.

I've also thought to myself, if I knew my life would be like this forever.. what's the point. They are fleeting thoughts, but still present in my worst moments.

I think the young son said that because he heard his father actually wish to die outloud.

I'm 22 now, but from the perspective of a child who's had an ill parent for several years, not a bone in my body ever wished my Mom wasn't around. She was still my Mom- I still needed her and wanted her there, no matter how ill.

Though your kids may show frusteration, it's at your illness not you. They know you are the same person and soul as you were before your illness.

Sorry if this is too much.. I just know how it feels to have a sick parent. My Mom always felt like a burden- I hated it. She was ill, .. and her guilt, though understandable, served no purpose.

I hope this helps in any way..

Maisie

Elfie,

Yessss. I do stutter (if the words even come out) and shake when I'm having a bad episode. I get really frusterated because I feel like there is a blockage btw. my brain and the rest of my body. I'll also get a lot of head twitching and my hands and fingers begin to constrict on their own... like I'm sqeezing an invisible stress ball. My only diagnosis is POTS- and I've been tested for everything under the sun.

Tremors and speach problems (most often slurring of words) are symptoms of POTS.

If this is a new symptom for you, check with your doc. just to be sure.

Hope you find some answers and relief,

Maisie

good idea.. maybe I'll try baby food. Thanks *

Amen tearose. validated.

nice vivid description of your experience too! glad you're feeling back to normal now.

I avoid large meals, too. My breakfast was more like a small snack.. don't know why I fainted. I've been trying to get in touch with my doctor but he went to China for a week (??). So I'm just trying anything to find some answers. Just dreading eating again! Thanks for your responses

no everything is the same.. no new variables

I've been posting almsot a question a day lately. (still new with POTs diagnosis, still learning.. *)

So this morning I woke up, scooted down stairs and ate breakfast. About 10-20 mintues later, I'm staggering, slowly come to my knees and eventually the floor. Slow faint I guess. I came to quickly, but still feel like I'm going to faint again...

I didn't eat anything out of the ordinary- I'm gluten free and dairy free...

Anybody??thanks

Maisie

From what I've heard and read, adequate sleep is important for POTS patients. But after a night (Example-last night) of little sleep, I am completely spent. I mean, not just tired.. like all of my symptoms peak in severity and rear their heads at once. It usually takes me a few days to get back on track.

guess I found one of my triggers. note to self: sleep.

sound familiar to anyone? Why is it that being just a tad sleep deprived sends some into a tail spin?

Maisie

Bella,

I'm not sure why licorice is having this effect on you- but is it making you feel better physically?

Hi Anna,

I don't have it as bad as your son, but I do wake up sick every morning.

As soon as I wake up, I'm curled up in a ball holding my stomach. I start having cramps and racing heart and cold sweats. I run (crawl fast) to the toilet and do my business... it's not complete diarrhea, but I always have to go. Also, I rarely vomit but am hanging over the toilet or trash can thinking I'm about to.

Is your son's accompanied by tachycardia? How old is your son?

I asked my doctor about it and he said it's just nerves. I DON'T believe that your son's episodes are merely nerves. I'm sorry I don't have any answers but just wanted him to know he's not alone.

Best wishes to you both

Maisie

I believe it means Mass Cell Activation Disorder

anyone please correct me if I'm wrong.*

thanks daisy, yes it is frusterating. Sorry you are dealing with it too, but thanks for sharing. It helps.

this should answer most of your questions.

good luck

http://www.mayoclinic.org/ehlers-danlos-syndrome/

Wow.. very interesting. I have a hiatal hernia as well!

I remember trying to describe to my doctor (pre-POTS diagnosis) that I feel like my blood supply is cut off after I eat. I was asking him if it's possible that my abdomenal artery is compromised by something pressing on it.

He of course, just laughed it off and dismissed my naive 22 yr old theory. ..

What you are saying seems to make sense. At least in some POTS patients if not all.

Looking forward to read others' posts on this. Thanks for posting!

bon' apettit

Maisie