Maisie87

Oh gosh I just saw both of these replies.

Esoskis: Thank you for putting some ideas in my head I hadn't thought of! I am seeing my doctor in two days so will talk to him about all of this.

Corina: I had no idea that many airports have this option. Thank you so much for bringing this to my attention! And that's a bummer you weren't able to get your meds as needed. I know POTS is a pain and we are.. well... high maintenance

Thanks!

hi POTSIES!

I haven't flown out of the country since I was diagnosed 6 years ago. I have a trip planned to Europe for a wedding, and plan to get fluids before the flight but am not sure how to get fluids for the return flight. Have any of you dealt with this? I'm afraid to fly without fluids ...

Thanks so much. Any advice is appreciated

Thanks to all of you.. I really appreciate it. Several of you have suggested getting IV fluids before the flight. Is this easy to do? Do I need a prescription or referral ?

THANKS!

Hi all, hope you are doing well!

~I have a trip planned to Europe (live in GA) which involves an 8 hour flight. Should I cancel the trip?~

I'm hoping you guys can share with me your flying experiences. I know air travel is rough for POTSies, but how rough?

I've had POTS since 2009, have flown on 2 and 3 hours flights a couple of times but nothing longer. My experience was unpleasant, but I bounced back a couple of hours after landing.

Thanks tons

Yup! My symptoms came on after getting vaccinations before a trip to Africa. Don't know which one did it, as I received about 6 in one day (stupid of me).

Aside from the electrolyte issues ....... any number of reasons would have me getting to another physician to get answers. A person who is perpetually nauseated -- who on occasion will have the nausea then progress to vomitting up food taken in.......needs to be evaluated. I'm happy that you have been scoped to rule out strictures.....did you also have a swallow study to see what the food does when it's in your esophagus? Did you have spasms? Anyway vomitting can stimulate the vagus nerve I believe and that stimulation of the vagus nerve can cause dizziness......or a vaso-vagal response where you feel faint. I've only known this to be of temporary effect however and not a lingering pre-syncope for a couple of days time. The blood pressure can dip and leave you feeling lightheaded momentarily. I'd get a full workup from a primary care doctor with labs, urinalysis -- the works......

Thanks!

thanks potsgirl* I would think that was it too except i don't throw up very much at all. . not to be graphic but really just a few bites-

something about the bending over and pressure in my head, that feeling lasts for days.. like i've been lifting too much weight or something.. ya know that feeling?

oh and I've asked my doctor about it, he says he doesn't know... that's usually the answer I get from him..

pleease any thoughts. thanks!

I hope all of you are feeling descent today*

AlthoughI've improved over the last several months, indigestion and nausea are still major problems for me. Not often, but sometimes, like today, I'll eat a meal and it will come back up after 5-10 minutes (sorry this is gross!!). I've had endoscopies and mobility testing- everythings fine i just get nauseous..

My question is: After I vomit, I will feel extra dizzy for the next two days..? Why is this? It scares me. I always think I've done something harmful to my body or something. I just want to understand why I'm dizzy after getting sick... ANY comments will be appreciated*

happy 4th

xo

Maisie

I'm sitting at home and felt a huge wave of dizziness and ringing in my ears, rapid heart rate.. you know.. all the POTS feelings- and it was out of no where! Then about 10 minutes later, skies turned black, it began to poor, thunder, lighting cracking..

This has happened to me several times now- a spell before a storm. Anyone else experience this before weather changes??? kinda freaks me out...

thanks!

Maisie

wow im sorry, I wonder why..

haha. not standing up- noted. thanks

personal question..

I've been wondering if it's safe for POTS patients to sex- I don't know if it's too much for the body..

I know some of us, like myself, are so weak we can barely brush our teeth.. . so having sex is out of the question.

I asked my doctor about it and he kept saying, "all you need to be worrying about is getting better".. yea hello! I know. I'm just curious.

Just wondering if any of your doctors have commented on this at all..

Maisie

One of my friend's just got diagnosed with Sjorgen's (sp.?). Her main complaints for so long were constant yeast infections, dry eyes, and extreme thirst.

Perhaps the yeast infections are part of the the syndrome? Hope you find some answers.

for your enjoyment

! O I misread the #3 about the hand**

my hand definitely turns blue and cold-bulging veins

1. Mine are unusually large during an episode and sometimes slightly different sizes.

2. Head feels terrible when I lean forward- throbbing/pulsating/dizzy

3. hands are white and cold after being in that position for 5 min.

KeXia,

I'm so sorry you are going through **** right now. To be honest, this *****. .. Seems like life's kicking you while you're down.

I read your post a few times- and have been thinking about your situation since yesterday.

One positive, in my opinion, is that this man is out of your life. Came at a bad time, but Erik is right- you deserve better.

Something WILL give, I promise. This WILL change. I know the concept of "accepting" your situation seems impossible to swallow, I'm still working on that myself.

I think tearose wrote some wonderful things. I can't imagine how hard it would be to be in your situation and try to find the good and the love around you.

Even though it's been broken, leave your heart open. The love, compassion and support from your parents and us on this forum will pour in and fill you up. Stay open and receptive. You have it in you.

my heart goes out to you

Maisie

good point..

Yes, infections, particularly sinus infections, can cause BP to rise.

Julie,

I will be calling around to find a doctor who is familiar with CM. Thank you. And thanks for letting me know about

Maxine- I'll send her a message.

I googled post trauma CM like you said. . I think you may be onto something. You are right, it is definitely worth investigating.

So within the next couple weeks (hopefully) I'll have an appointment for Chiari Malformation and an appointment with an endocrinologist to test me for malfuction of my adrenals/pituitary. Hopefully some answers coming soon. . I used to try not to get my hopes up, but why not! My hopes are totally up**!

Thanks Julie. How is Mack doing? How are you feeling?

Hope to meet you soon

Maisie

Julie,I have been reading about Chiari Malformation. What kind of doctor diagnosis this?

masumeh I found your story about recovery. Interesting and very encouraging*

Reading all of your posts has been very validating for me. Thanks.

I'm glad to know others are searching, too.

This post is NOT in any way trivializing the POTS, at all. Just the opposite.

ok POTS is a syndrome. The term "syndrome" refers to the compilation of symptoms, a description of how a person feels. It is used when a group of characteristics run together but the cause has not yet been found.. or the pathophysiology should I say.

There is a common denomenator among all of us. There is an underlying cause to this. I'm writing this post because I've just seen so many doctors say "it's just POTS", and tell me I'm silly for searching for reasons or causes. silly. .? They don't even know what causes POTS, it is certainly too soon to say there is no cure.

POTS isn't what's wrong, it's how we feel.

anyone else feel this way?

Maisie

thanks for listening to me rant. hope you all are feeling up to par today

p.s. I know there are some amazing doctors out there searching and searching for answers. bless them.

lissy,

I'm so glad you posted this! I was just trying to explain last night to my brother that I feel like I'm watching my life from a bird's eye view. It is scary for me too. I don't really know why it happens- perhaps it's a side effect of lexapro- perhaps it's because I'm isolated 8 hours out of the day by myself (solitary confinement!!) until my mom gets home from work.. I don't know. Just know you aren't alone.

It's daily for me too

feel better

Maisie

gomindy,

My blood pressure drops while lying down as well. Seems it should be the opposite doesn't it.. My blood pressure also rises a bit soon after I sit or attempt to stand. I can't stand long enough to see what happens after a few minutes- to see if it will level out or not.

My only diagnosis right now is POTS, but I'm going to see an endocrinologist next week to test for adrenal failure. We will see..

you're not alone

Maisie

Hi Julie,

I have a friend that went throught this a couple of years ago. I don't remember him saying if there was an odor or not.

He went to a dermatologist- the derm. said he had a rare condition (not dangerous from what I understand) called Chromhidrosis where the sweat glands produce a pigmented compound called lipfuscin. Chromhidrosis, from how he explained it to me, usually effects the apocrine glands, which are responsible for body odor. Sometimes certain medications can cause this to happen.

This is through the grapevine I know- but hopefully it's accurate and can lead to some answers.

Mack's case sounds a lot like my friend's.

have you checked with a dermatologist?

xo

Maisie