janineerrn

Im sorry your son (and your family) has to go through this. Have you tried him on lexapro as an antidepressant. It has the least amount of side effects and I recently read some research stating that lexapro will help with nerve conduction (which could be a part of POTS)

I take Klonopin twice a day. It helps keep me calm. I take valium when I need it. It keeps me from running to the ER when my symptoms get bad (I swear Im having a heart attack).

I dont think you need to worry about the addiction part. Just keep him off of xanax, being an ER nurse, I have seen some pretty bad psychosis associated with withdrawal of xanax. I have also seen it with Ativan, but not from withdrawal, from actually taking it long term. But whatever benzo you put him on just watch out for symptoms of over medication and when he comes off of them taper the dosage and dont change anything without talking to his doctor. and I pray you have a wonderful doctor.

God Bless

Janine

I have been doing a lot of research on low blood volume. I am a Registered Nurse and cant stand the fact that my peers (doctors) have no answers for me.

There are many mechanisms in our bodies that regulate blood volume and blood pressure. Example: You stand up, hundreds of things happen for our body to adjust to that movement. It starts in the brain, every nerve impule is transmitted by a chemical (neurotransmitter). These nerve impules trigger other chemicals released by the thalmus(for one) that controls blood pressure, the kidneys secrete chemicals that control blood pressure and volume. The response in the elasticity of your blood vessels secrete chemicals that regulate blood volume and pressure.

Anything can go wrong during any of these processess to make you sick. Its a giant cascade.

Ummmm, I better keep this short.

Basically I think that those of us with low blood volume have something that has to do with thalmic regulation. It is sending out signals that we have normal blood volume when we dont. If I only knew why...........

This condition is driving me nuts, I am sooooooooo tired.

Janine

Familial dysautonomia is 742.8 

dysautonomia is 337.9

postural hypotension is 458.0 listed as chronic

hypotension dysautonomic-dyskinetic is 333.0

hypotension, permanent  idiopathic is 458.1

autonomic imbalance is 337.9

Nothing for POTS per se, but it's a hard one to get disability for anyway.  An underlying one, like arrythmias or something is more helpful.  Sorry i couldn't find it.  morgan

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Thank you, this is great, I really appreiate your help!!!-Janine

Hello,

If anyone by chance knows the ICD-9 codes for POTS, or neurally mediated hyper or hypo tension, I would really appreciate it. They are holding my disability checks until I can provide the ICD-9 codes and my private MD cant find them and Im waiting to go to a specialist in May.

Thanks

Janine

Hi again and thanks all for your info.

I have had complete cardiac, neuro, and endocrine work ups, they ruled out pheo and carcinoid. Ive had tilt table (and failed it big time), ekg's, eegs, CT,s MRI, endoscope (both ends woo hoo), plasma mets test from mayo, thyroid, and a bazillion other blood tests.

I am currently taking Toprol XL, which makes me feel tired and crappy, synthroid even though my thyroid is normal, protonix, reglan, and I have marinol, klonopin, valium and a bunch of nausea meds. If I took all the meds they gave me Id be in bed in a coma.

I am going to see a Dr. Newby at Duke in Durham NC on May 16th. She is suposed to know about neurally mediated hypertension and POTS. So we shall see.

Thanks again for all your support, it is greatly appreciated.

Janine

Thank You All!!

For responding and your understanding. Im having a really bad day, every time I move I throw up. My nausea is the worst symptom, most persistant anyway. I have been given everything from zofran to marinol.

I wont take the meds to control symptoms if they make me doped up. I want to live life, not sit in a chair like a zombie.

Have a great day all!!

Janine

Hi Again All,

Two things:

First, What tests have you all had?

Second, what medications are you on, pharmacutical, herbal etc... and what other things are you doing that help?

My sysmptoms are:

Sharp chest pain, constant nausea, always hot or chilling, leg cramps, my BP either goes up or down with sitting and standing. I cant bend over, I cant take a hot shower they bring on attacks. Tachycardia, numbness in my limbs. And fatigue.

I get attacks that are very unpredictable, sometimes 6 or 7 a day and then I can go 2 weeks with out one. I get a sharp chest pain, tachycardia, nausea and vomiting, then a "rush" comes over my body and i feel like Im going to drop dead. I sweat, my head aches, I get pain behind my eyes, my neck hurts, and it ends with diarrhea. (joy)

Any info would be greatly appreciated.

Janine

Janine

Here is a list of doctor's by Country

http://potsplace.com/physicians.htm

There is also one at the NDRF website but probably not updated recently.

We all struggle with good doctors.  I travel a couple thousand miles to see mine and he sends my doctors information on how to manage my case.  Try and EPS cardiologist though and ask if they know anything about Dysautonomia or POTS before you see them, otherwise probably useless on speedy help.  I don't know what your main symptoms are but there are a few different speciality doctors that see us too. 

We all have a tough time because there hasn't been much education for doctor's about Dysautonomia, funny isn't it, the main system of our body.  Like owning a car and not having any mechanics to work on it

Let me say that you live in a good part of the country to find a doctor.  Because the West Coast is nearly out of the picture all together.

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I dont know how good this part of the country is. I am a nurse who works here and a lot of Doctors are clueless. I was even given the run around at Duke University Hospital. I feel like I have to jump up and down and scream "Im not crazy!!" which makes me look crazy but at least I get some attention. The worst part about this is that sometimes it gets so bad I feel like Im going to die. But I have lived so far...... Thanks for your reply-Janine

Have you tried the medicine that the dr. prescibed.??????  Your diafnosis is one that is in the family of pots.  With pots we drop when we stand, or other variations.  It sounds like he might have a clue.  I live in Pittsburgh. Dr. Adrianna Selvaggio, nephrologist is avesome.  My pcp and her group have 60-70 pots patients Dr. Jeanine Frank at upmc.  These are great docs.  If you try upmc internal medicine tell them you have some sort of dysautonomia and they will schedule you with a doc. that treats.  Good luck.  Miriam

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Thanks for your response Miriam. I havent tried the Proametine yet. I have heard some horror stories about it. The bottle is sitting in front of me right now. I was given Procardia to take during my by bad episodes and I thought I was going to die! I may try contacting your doctors group to see if they can give my Docs some treatment advice.-Janine

Janine, Welcome to the forum and the wonderful world of pots!    There has been a huge discussion on doctors here.  I live all the way across the country and so can't really help you, but am sure others on the board might be able to.  We tend to go through many doctors before we find a fit.  There is so little known about this disease, it's difficult to find a doctor who knows anything.  It sounds like your cardio is somewhat informed and knows a little.  Since he does know something about it, he might have suggestions on doctors you could see as a primary.  I hope you will find this board helpful, even if only as a place to vent.  Have you read the dinet information?  Also if you go to NDRF.org, they have a phone number and are glad to send out many interesting articles about ans.  I give these to my doctor and he is very good about reading it and we put our heads together and come up with stuff, some helpful, some not.  Again welcome.  morgan

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Thanks for the welcome Morgan. I will do as you suggest and bring info to my Doc. My Cardiologist is a good man and is at least listening to me. Thanks again-Janine

Hello,

My name is Janine, I am 39 and live in Western North Carolina. I have had syptoms for over 2 years now. I went to the docs originally and was told I was menopausal with an anxiety disorder. (hah) I am an ER nurse and I knew this was incorrect, so after having these "attackis" in front of ER docs and nurses my doc finally believed there was something else wrong.

Here we are 2 years later. They have ruled out pheo and carcinoid (went to Duke, 4 hr drive ugh!) I am in my 3rd week of being on sick leave from work getting ready to make the decision to go on short term diability.

I have a few questions if you can please answer me. Does anyone know a Doctor I can go to for this that actually knows something about it. The cardiologist I see now says I have Centrally Mediated Autonomic Dysfunction. He wrote me an Rx for Proametine and said to come back in 10 days. I really need a doc that knows about this. I would also like to know what many of you are doing to control symptoms. You can read the list on the home page for POTS and I have EVERY symptom on there.

Thanks, Im glad your all here for support.

Janine