lalalisa

I had one of these done when I was seeing a neurologist and I was still being diagnosed. I didn't show any nerve damage...I think just a touch of carpal tunnel in my arms. The sensation is really weird but not too painful or uncomfortable.

Blessings,

Lisa

Candace,

It looks like you're definitely not alone! I shake as well - especially if I'm in an intense conversation or some sort of intense situation arises all of the sudden. I don't watch intense movie's anymore either because my body can't handle them. I often feel really cold when this happens and bundle up which helps...but not instantly.

A BB didn't help me with this but Paxil CR did (I'm not on either at the moment).

Hope you find something that helps,

Lisa

Hello,

I wanted to chime in and say make sure you lock your car doors...I've already had one of the hanging handicapped tags stolen. (I guess this is where the plates are better) I had to drive all the way back and pay another $10 for a replacement.

These tags are definitely a blessing.

Lisa

Sunfish,

My husband and I are praying for you!!

Love,

Lisa

Oh wow Flop, I am praying for you! I can't imagine what things must be like for you right now.

Love and prayers,

Lisa

Thanks Lois,

I guess they don't qualify.

Hope you have a great day,

Lisa

Hello,

I am 19 weeks pregnant and trying to figure out how my husband and I are going to cover our new child as far as health insurance. I am on Medicare and hear that there are Medicare benefits available for children. Do any of you have any experiences with this? Could you tell me how to find out more information?

Thanks so much!

Lisa

Hey Rachel,

I just noticed this post and thought I'd chime in with a belated Happy Birthday as well! I'm so glad you live nearby now! I appreciate you so much!!

Lisa

Thanks for these helpful suggestions! They are inspiring me to get started. =)

Earthmother - that's frustrating about the loss of your TTT records!! I've started requesting my records as well.

Thanks again!

Lisa

Hello,

I am hoping to tackle my huge tupperware container of medical records here soon. I am looking for the best way to organize them and make them easy to access, etc.

Do any of you have any systems, tips, or things that have worked for you that you could share with me?

Thanks so much!!

Lisa

Hello,

I was wondering if any of you have stayed on Midodrine while breast feeding? I'm on it now while pregnant but I'm wondering if it's different while breast feeding for the baby? I am going to talk with my OB as well but wondered what your experiences have been?

Thanks!

Lisa

Thanks SO much for both of your input. I feel better already. The more I thought about it today the better I felt especially because this is the first of my team of dr's who's had a concern. I tried just skipping a dose tonight and was lightheaded and dizzy just sitting - it was bad. I think I'm going to get some more reassurance from my high risk OB and then just stay on it if she's still feeling good about it too.

One more question I have....Can I be on it while breast feeding? Of course I'm going to talk with my dr's about this as well but thought I'd ask you guys your experiences. Every dr. I have has emphasized the importance of breast feeding for a smooth recovery with POTS so I'm really hoping to be able to.

Thanks again for your thoughts and support,

Lisa

Hello,

I'm 15 weeks pregnant and have been on Midodrine for 6 years - including while being pregnant. My dr's have seemed ok with it until I saw my local cardiologist today (I also see dr. Grubb on occasion). She seemed quite concerned about Placental Insufficiency and Midodrine. She mentioned that I need to be concerned if things don't measure up (with babies' development) with future visits to my OB. She also wants me to start going off of it slowly.

I'm just really confused about what to do because before this dr's visit the other dr's thought it would be better for me to have a decent blood pressure than to be off of the med during pregnancy. My blood pressure today with 10 mg's of Midodrine was 90/50 and I'm pretty scared what it would look like to be off of it.

Of course if Midodrine is really something that is going to cause complications or any problems with my baby than I am more than willing to go off of it - just not sure what to do.

Has anyone here stayed on Midodrine throughout pregnancy? Any thoughts?

Thanks!!

Lisa

Ami,

I'm so sorry to hear this news of your son. Thanks for sharing this part of your life with us. Wow, I can't imagine what it was like telling him yourself!

Take care,

Lisa

Hello,

I experience these as well. I find them quite disturbing! (losing your vision is not fun!) Mine seem to come and go.....I'll have quite a few over a few months and then have months without them. Sometimes they seem to be linked to my sleeping patterns....if I have lots of changes as far as when I wake or get to sleep then I get a migraine. Other than that it's hard for me to find a pattern/cause. I do know that when I was getting them quite often (as you are) my dr. suggested that I think about trying a preventative migraine medicine (such as topamax). (the frequent pattern ended up breaking before I started the med though)

I wish I could do more to help but at least want you to know that you're not alone.

Take care,

Lisa

I had a massage a couple of months ago. I felt so good afterwards! (definitely need to take it easy because you can feel dizzy but definitely worth it) I only wish I could find a way for insurance to cover the treatments because I can't afford any more.

Lisa

Angela,

Oh, wow! You've been through a lot! I hope your recovery goes really smoothly. I'm glad to hear you are home!

Take care and hope you recover quickly!

Lisa

Angela,

Hello. Wow! You have been through a lot lately and have had an intense week! Were you able to see your PCP before the weekend? Please keep us posted. I'm sure it's really hard to wait with so much pain and so many questions!

Praying for you,

Lisa

Hello,

I am pregnant and considering getting one for the first time this year. I am also traveling in an airplane over the holidays so I'm guessing it would probably be wise for me.

Lisa

Hello,

From everything I've read and heard POTS seems to be a separate issue from heart disease. I have congenital heart disease but there is no correlation between my 2 health issues. (I was born with a coarctation of the aorta and a bicuspid valve instead of tricuspid)

Take care,

Lisa

Hello,

I tolerated Yasmin really well for years. I would take 2 packs in a row to delay the period (when I took 3 together I sometimes got some spotting so I stuck to 2 but everyone is different). For me the meds in Yasmin were great and some others I tried made me feel terrible. I hope you're able to find one that you feel "normal" on.

Take care,

Lisa

Hello,

I recently found out that I'm pregnant! My husband and I are really excited (it's our first). Some days I get overwhelmed and wonder how I will be able to care for a child but know we'll do it somehow.

I've been really nauseous and increasingly fatigued. The fatigue has gotten so intense that taking a shower wasn't even an option today. I'm 8 weeks along and hoping for a better 2nd trimester. Have any of you had a rough 1st trimester and a really good rest of the pregnancy. I guess deep down I was hoping to feel better pregnant.

Thanks for any input.

Lisa

LindaJoy,

I've recently been wondering if the antihistamines I'm taking are making me jittery/anxious as well. (I take them at night and this happens at night)

I also take Singulair which doesn't seem to have any side effects.

Hope you have a better day today,

Lisa

LindaJoy,

I just wanted to write and say that I'm praying for you and that you're not alone. I'm so sorry that things feel so hopeless right now.

Just writing to let you know that I'm hear and praying for you,

Take care,

Lisa

This is wonderful news!! Congratulations and thanks for sharing with us!!

Lisa