mom4cem

Hi,

So nice to hear about this Dr. taking time to speak with you and recommending someone who will hopefully be able to help.

I take atenelol and have no real problems from it. I take 1/4 in the a.m. and sometimes 1/4 in the p.m. or during the day if needed. I have not noticed to much of b/p drop with it, at least not enough to notice unless I go up to 50mg then I notice it.

Good luck

There are some listed on this site and the NDRF for the NY area. I have not yet gone to any of them. I believe two of them treat pediatrics only.

Hope you find the right med soon.

Melissa,

So sorry to hear how ill you have been. Poor fish!

I hope you are feeling better by tomorrow for your birthday. Wishing you the best now, for your birthday and the whole year through!

Hugs,,,

Have it as we speak. Was wondering why I was tachy out of nowhere yesterday with chills and lo and behold, a good morning to me! Heating pad does wonders for me. Unfortunately it does not wrap around my whole body!..I will do the rice sock also. Either the heating pad stays in the back and the rice sock in the front.

Advil, and sleep.

Seems to look like whatever the major symptom is they put you in that category especially since so many symptoms overlap too. Tachy while standing with drop in b/p -pots, palpitatons, tachy and variable b/p,,MVP, fatigue,-cfs, etc. Just my opinion.

I fall into mvp dysautonomia since I show evidence of MVP and primarly have tachy/palpitations but my b/p does not always drop upon standing nor does my hr always go up 30.

Giant umbrella term dysautonomia.

Nice e-mail. He wrote it with compassion. Kudos!!!

Can he be cloned?

Cardiactec,

I too am tachycardia driven. I can go from 70's 80's up to 120's in a few minutes,,slowly, sometimes even up to 140-150..all this sitting. I can go as high as 160 standing. I am not classfied as pots, but have been diagnosed with dysautonomia. All tests show sinus tachy. No ep study done, basically the same response you recvd., risks and the fact that they see nothing that acutally warrants or that they suspect is anything that could be ablated. I'm not tachy all the time but I do get it enough and it is not limited to standing or sitting. I get it plenty of times sitting slowly goes up and stays and if I stand it can shoot up 30-40 more points higher.

I take atenelol and I would say it helps some, but I still get bouts of tachy anyway. If I take a beta while I am tachy it takes about 1/2hr to 45min to work. I don't want to up too much because of the fatigue and the drop in b/p that comes with it.

Hopefully something will turn around for us soon.

So sorry to hear of all this. Keeping you in my thoughts and prayers. Keep the faith.

Happy Belated Birthday Nina!!! Wilbur,,,reminds me of Charlottes Web

Hope you are feeling better too.

I get that at times also. Usually for me it is after an episode of tachy and the adrenaline just keeps going all night and the whole system is on overload. Can't sleep or if I do it is not until late and I keep waking up.

Then during the day it is worse because you have not slept the night before, feel dried out in the mouth and nose from adrenaline overload and in the late p.m. you feel like you really could crash but you have no idea if the surges will keep coming or if this will be the night you actually sleep and sleep through the night.

Sound a bit similar? We must be on the same wavelength,,the past two nights have been horrible after an episode I had the other day.

Sleep well

Wishing you a speedy recovery and also wishing your pots symptoms remain at bay

I think we discussed this before but this was a new report on Yahoo. BTW, it this link leads you to Madonna,,it's not me it's Yahoo. Sometimes it links to a report on Madonna

http://news.yahoo.com/s/ap/20061129/ap_en_...lia_the_wiggles

Sorry that you are dealing with this now. Being ill is one thing but having to deal with the nonsense of dr's attitudes and worries about $$ and everything else can be so overwhelming.

Hang in there.

P.s.,,, sometimes curling up into a ball can do wonders for a while. Gives us a break.

That's so very nice to hear. Congratulations and here's to a easy going pregnancy!

Can't imagine feeling like I do now when I was young and studying and life in general. But you did that, and Wow,,did you do it.

You really deserve it, what an honor!!

Hi Linda,

Sorry to hear you are in the hospital again. I just hope that you get some solid answers,,,,soon! I know you must be so frustrated to be in and out and the worry about being home only to have to go back in.

I for one never realized how tough it can be to find out what is going on and getting help. I am seeing more and more of that in your case, most everyone's case on here and mine.

As frustrating as it is please hang in there.

So very sorry to hear of this news Prayers to her family during this time.

HI,

Sorry I don't have much to add to what has been said. I did want you to know that you can check out Dr. Julian Stewarts website .... http://www.nymc.edu/fhp/centers/syncope/Ci...%20Syndrome.htm

E-mail and ask him if he could recommend somone. Dr. Stewart from what I recall works with adolescents.

I live in NY but closer to Manhattan and even here, the lack of understanding is bad.

File a complaint, if they make you go, go out kicking and screaming!

Would be great if you could get in touch with your former cardio. That might help a lot with your case.

So sorry you were treated so badly. Once again, bedside manner 101 was not on the curriculum and obviously not up to date knowledge either.

Most of the time it is worse in the a.m. by p.m it usually is better but not 100% of the time. Even if the rate is lower I sometimes am more symptomatic,,go figure how we accomplish that

Whole family had it done in Oct.

I second standing your ground. You need someone who understands or who is at least open to the idea of pots/dysatuonomia.

I don't have one either, but the cardio I do so does at least whatever he can to help with my symptoms even though he is so so on the idea of me having dysautonomia. His eyes dysatuonomia is the severe kind, no in between

Please let us know how it goes.

Hi,

I started again last night with using my 2 mile walk tape. It does pick up in intensity and also with the use of your arms. I did it without problems but after is when I have trouble. I feel naseauous after and tachy in the low 90's sitting but it takes a while to go back down. I can't figure if it is just deconditioning, too intense or what. Was not such a good day to begin with,,little more symptomatic the past few days, that could be another cause for it too.

Does anyone else have trouble with exercising?

Hi and welcome.

Sorry to hear how you are feeling. I too have suffered and do still suffer from pac/pvc's. Yes they can be very frightening especially when they occur so frequently and forecully, takes your breath away.

I also would not rule out dysautonomia, any form, until everything else is eliminated. Everyone has some similiar symptoms to others and then some that they seem to have that no one else has. How many people really fit the "perfect" diagnosis? Not many. So many of us are all over the map, from one extreme to another.

Getting an endocrine workup for thyroid etc, adrenals like taking the 24 hr urine to check for pheochromocytoma, complete electrolyte panel,(mag or potassium being low can cause them too) and all the rest that everyone else stated can help to narrow down the cause. In a structurally normal heart pvc's and pac's are considered benign, pesky, annoying and sometimes downright painful, but benign. After 15 years of having them, I'm still not used to them. When they occur, they still make me jump, and more than one in a row,,puts me over the edge

I also sometimes get the fullness in my neck and head, even feels like I am choking,,(I can't wear a hooded sweatshirt or turtlenecks for that reasons).

Try reading through the medhelp.org forum on pvc's,, you will really see how common it is, and how the dr's 99.9% of the time reply that they are benign.

Give the tenormin some time to work. Try some of the self help measures on here, you may notice a difference too.