BEE

Glad oyur home and hope you can get some real rest..take it easy and glad that is was not cardiac although pleurisy doesn't sound like fun either... Take care girl, Belinda

Call me Julie...We will talk

I wouldn't say she is as good but she wil be able to help you she is pretty uptodate on Dys. and POTS so if oy haven't seen anyone for it it would be worth it probrably. SHe will explain things and get probrably get oyu started on something according to what you are daignosed with. And I am not sure about the timeframe if it is your first visit it might take a little bit longer to get into her. But worth it..Good luck! Bee

Hey Dayna I forgot to ask did you ever end up trying the compression hose???

Dayna..I am only taking O.2 mg of FLorinef and that is it. I still have Very hard days but for the most they have evened out(for now). I have a list long as yours if not longer of meds I have tried and have done nothing for me. Trial and error I guess.. Belinda

I ditto on the horrid ER experiences..I have had quite my share girl. And don't ever apologize for venting I personally feel it makes us human to know that others have similar experiences!! Sorry for the bummer experience.. Belinda

Thank you so much Ellen..I used to rinse my nose with saltwater but haven'tlately..good idea!!! Also I use a sinucleanse rinse and regular saline. It almost feels like my nose is full of bougies(pardon me there) and I cannot blow them out and they are draining somewhere in which I am thinking down into my lungs. I have been have quite a lot of phlegm coming up yet it is clear. I am hoping this doesn't last throughout hayfever season.. I know my POTS would be alot more tolerable if it wasn't for the allergies.. Belinda

Hot rice packs are the way to go....

He was a little concerned about doing those due to heavy reactions on some of the injections for testing like lots of swelling from such a tiny amount. The other thing is that if I react I cannot have epi-due to arrythmia possibilities. I am going to ask Dr.G about it and what he thinks when I see him Oct. or I may just call because by then the allergies should be at bay. Thanks for the suggestion Also thank to everyone that replied I am going to look into some of these things..the only worry I have with taking these meds is rhythm disturbances... And making me more tachy than i already am. Frustration sets in... Belinda

Can you try ice on the back of the neck???Usually works for me...Hope that helps and keep up the positive attitude belinda

Big hugs to you and your hubby...May you continue to have strength through all of this...

Hi..I just want to say that for me I definitely get moody when my symptoms are intolerable and not easy to ignore. It isn't anything personal to the people around me it is just is very frustrating to deal with. I give you alot of credit for asking about this. Good luck...Belinda Remember patience is a virtue..

Went to the allergist and i am allergic to everything..most of oyu know I used to post about MY NASAL PROBLEMS..which drove me insane. Well I now know that I am allergic to dust,grassa nd trees,dogs,cats,mold. All the drugs Iwas prescribed I cannot take...well only one really. I cannot take albuterol and asthma preventitive. I am currently taking rhinocort but that is it and it is not working. Any ideas from those of you that have allergies??? I am very miserable with this. I feel like I cannot breathe..even though I am. I remember there were some other members here that suggested allergies to me in the past ...thank you!! Just curious on what others take for there allergies and breathing problems. Thank..Belinda

Hey I have gastroparesis...You feel bloated alot, and nausea is a constant thing for me, there are certain foods I cannot eat. I am always constipated (totally stinks). But you learn to live with it and learn what will set your system off.

I was on up to 200 mg. of Toprol XL at one point this past year..I was extremely fatigued and felt short of breath quite a bit..Don't recommend that much of it to anyone. BP's were Very low but tach still. It worked for me daily at 50 mg. for quite a few years kept me under control until this past year or so. So it is tolerable at different doses for different people,make sure to keep that in mind. Good luck with it. Belinda

I last year in one month lost 36 lbs. it was scary..I have gradually gained it all back.

I developed POTS after ablation about 2-3 yrs after. I had a cath. before the ablation I was around 21-22 yrs.old. I definitely had conduction abnormalities. I had no orthastatic problems til a year ago after being on Prednisone. I don't think they suspected long QT. I always just had SVT with PVC's+PAC"S. They did the cath because I had so much chest discomfort. I had no problems with my heart until after I took the drub metabolife to lose some weight post childbirth and then all of a sudden my rates were never below 100 sitting standing laying down didn't matter. I also have other signs of autonomic dysregulation for instance I see floaters, and sometimes have swallowing issues, I have neuropathy in feeet and hands, reduced sweating in lower extremities, and gastroparesis. Sometimes I wonder if it isn't something more than POTS. I have had numerous tests to rule out other things,EMG's,EEG's etc. So who knows. I am glad that you do not get the OI sometimes it really stinks,but learning to live with it is half the battle.

Just wanted to say good luck in the hospital Sunfish..you are one brave girl!! I am glad that they approved this for you and I hope it helps you Belinda

I definitely had true SVT shown on EKG's at one point a cardiologist tried diagnosing me with something called Long-Ganong-Levine Syndrome..something weird shows on EKG. But later was told I had Av node reentry tach. It only was SVT when it was around 170's and I felt like passing out just laying down. That is very odd that you don't feel a bit weak or presyncopal with aheartrate in 200's. Maybe you have strong blood vessels??? I owuld be happy that you aren't syncopal. I was on Toprol XL for 6 yrs. after being on almost 200mg. a day my cardiologist said lets stop it it wasn't working and my bp's were way too low. Back when I had ablation or before I was on Amiodarone. Mind oy I am only 28 and I have also had a cardiac cath. Bee

My highest was 170's and since having my ablation it has only hit 140's. It was SVT..AVNRT. I just have sinus tach now all the time and run about 100 but like others at times I am in low 60's usually at night. This all with no beta-blocker.

LOL..I think that Dysautonomia causes hair loss....DUE TO pulling it all out!!!!

Could you be dehydrated??? Maybe lay down and put your feet higher than your heart???

Dionna I used to post about this quite a bit...Shortness of breath or glue in the lungs feelings. It is stil a symptom for me. And yes you should report it hopefully it will turn out to be just ANS related..which means uncomfortable but not lifethreatening.. I actually have had tests to check this that may be a good idea..like Pulmonary fiunction testing.. and others. I found that I have allergies and they cause nasal passages to swell almost shut aklthough I still get the glue feelings or like I have to remember to take a breath deal. Check with your doc..I am sorry you are having this symptom it is annoying and uncomfortable.. Belinda

Dayna..What is that??? No you are not a wimp..it is the way you feel and what you are dealing with everyday I have weeks of that too and feel like blah..So it is all just part of this stuff. Remember it does stink that the kids hjave to do stuff like that but it is better than you being in the hospital and not being able to be at home with them ...So take it easy on yourself OKAY??? Belinda

I was on prednisone right before I came down with the OI part of pots..One thing I can tell you is to be very careful weening of of it correctly. I was on a VERY high dose for asthma also last summer..and I had quite a time getting my body to functional activities again while weening off of it. But when I was on it, I was walking 3 miles a day . ANd while weening off felt like I couldn't move my body at all. Everyone is different just be careful taking it thats all. Bee