bttrflyamby1981

This post made me cry...not really in a bad way.

It does give me hope Tessa and I'm so happy that you finally have your answers!

Well the beginning of them anyhow.

Let us know how your TTT goes.

Sending you the best

Amber

I'm not feeling too hot so I check my b/p and pulse,

My b/p is ok (Just a little low for my normal)

11:36 am 107/66 bpm 68 sitting

11:40 am 104/53 bpm 60 standing

11:42 am 112/82 bpm 104 standing

So my blood pressure didn't change a whole lot but my pulse did....

Is this consisitant with POTS?

Thanks guys

Happy birthday

That's great Tessa, it's nice to have more then one option.

Your legs turning red could be "blood pooling".

I hope you find answers, and find them soon.

It's too stressful to have to wait!

I have no idea what they will do, or if this new Dr will

have any idea what to do with me? I'm really afraid to do that

one test again though...it was very scary and painful!

Best of luck to you!!

Yes I did have the stress test done, both actually and I couldn't complete either one.

Of course nothing showed on paper how I was feeling with the first one ( I almost fainted) and with the second one my blood pressure was getting too low? They never did tell me what it was.

The second one made me feel like I was going to die, I started crying towards the end cause it was just sooo bad. It gave me a killer migraine!

I have a folder now that I take with me. I have all the info I looked up all printed up and waiting to help me with my memory. I have my symptoms highlighted so it's helpful for both the Dr and myself. I also have been keeping track of my blood pressure and pulse and typed it all up so they can see what the readings are like in my "everyday" environment.

I also asked for copies of my file so I have them ready just in case. (It's helped me understand things going on with my body)

Just things you might want to think about. I wish I would have done them sooner.

Best wishes

Tessa,

You have been given very good adive by these ladies. I just wanted to let you know I'm in the same boat and I understand how nervous you are about your Dr even understanding you. I'm seeing a new doc on the 14th. I hope yours on the 9th will in fact understand and get you that TTT.

I had a TTT, but it was normal (good day) So now I'm needing to do it again.

Good luck!

Mine does this too..it's so confusing isn't it. (((HUGS)))

I don't even have to walk for it to do this either. Is yours just when you walk?

Sorry I'm late!!

I'm sorry your having these troubles. I know how painful it is when you THOUGHT someone was a friend when they turned out to be nothing at all. (((HUGS)))

Try to find and talk to people who DO understand. That's all you can do really. She of all people should understand, but since she so conveniently forgot, get that negativity out of your life!! You need support, not an insensitive friend.

thanks for responding....

I only tried the midodrine one day..lol I would be willing to try it again, I'm a bit scared to but maybe it will be different this time around.

The Dr that prescribed me the Florinef is treating me for the symptoms that I have, but I'm in the process of changing Dr's. I'm getting conflicting treatment where I am right now, so I need to find someone else. I'm praying this new doc will know about POTS or at least seriously consider it as a diagnose for me.

My blood pressure hasn't really seemed to go up too much with the Florienf,so I myself wonder if they will raise the dose.

From what I understand, the Midodrine will lower your heart rate while increasing your blood pressure? Cause that's what I notice I need the most. I do on occasion have a lower heart rate with higher blood pressure though?

I'm just all over the place at times!!

Thanks again

oops..haha

I'll have to remember that.

I was told to take anti nausea meds like dramamine(sp?). It helps when my migraines make me vomit.

I'm on Florinef 0.1 mg once a day.....but I had one Dr tell me to get off it (said my b/p reading where normal) The Dr who prescribed it for me says my p/b is not normal. I've been on it for almost 30 days now and my blood pressure still seems a bit low, but some days I do have normal readings.

Today is one of those days that it's a bit low......79/62, 88/66, 97/68, my "normal" is around 112/77.

When I first started the med, it gave me very bad pressure in my head and would trigger my migraines.

After about 3 weeks the symptoms seemed to be better, but now after another week it seems my migraines are in full motion!

Now I get migraines anyway, so I'm pretty confused.

I have to wait until the 14th instead of the 6th now.......uhg! So while I'm waiting I feel like crud and am very frustrated!

For me I get symptomatic right away....then I will feel ok then bam I feel cruddy again. It changes from day to day, even the time of day. I feel worse first thing in the morning.

Happy Happy Birthday!!

Nolie,

You described me!!

My husband makes fun of me cause I can't turn around in the seat to check on the kids, and I can't read while the car is moving. You don't want me in the back seat!!

I get pretty dizzy in the shower as well. I havn't fainted in all this though, even though I feel like I'm going to.

That is great news!! Such a relief!!

I'm sure the nurse didn't get creeped out, lol She probably is used to people being greatful.

At least I would like to think more people whould be thankful.

my "thought" would be yes, I wouldn't be surprised to hear it affected the metabolism. And if not the illness, then the meds would do it. I know the BB can cause you to gain weight anyway.

I know there is a lot of people who have a hard time gaining weight, so this brings up a good point.

Just wanted to show you some support too. Don't give up, keep on fighting!! Your kids need you.

I hope you can find more answers soon.

(((HUGS)))

I'm sorry your in so much pain!

Sorry I can't do anything to help.

((HUGS))

I do a hot bath too.

Oh my heart goes out to you!!

We just put down our Mastiff (5 years old) due to a mass cell tumor.

It's never easy and I understand your pain!!

((HUGS))

Thanks for your support

Maxine you made me feel better..thank you

It's easier to deal with when you know your not alone.

I wish I could find a good DR out here.......I'll keep looking.

I'm not sure.....

I have had this blood test to check the levels of that hormone produced by the adrenal glands.

It's a simple blood test they do at a certain time of day and there is food/drink restriction. (I can't remember exacts)