lotsicker

This is a daily stuggle for me as well. My hubby is a firefighter and he works ALL night, comes home to clean, cook , do the shopping and NEVER complains...I feel so guilty!!! I just want him to come home to a good meal, clean house and shopping done...all I can do is feed the boys and take them to activities...IF THAT

Did all of you have to go through all these types of testing? I am set up with an Electro study Dr and they are insisting that I go to a lung specialist. This all so frustrating as I only have shortness of breath with the increased HR and my insurance won't cover a TTT. If you have had a PFT test, what did it show and what should I expect from the EP study?

Hi, I am new to the board but, I have seen a few high numbers when I have taken my BP. For me it was pushing myself to the point of complete exhaustion. (4 kids and to many activities) At those points my BP was high and I had to sit down before I ended up in the hospital! I think my heart just couldn't keep up and caused the high BP. This only happened twice though. Its possible you need bed rest for a while to get your body adjustments closer to normal. I would also see if you can see your dr so they can document the change.

Its so nice to talk to people that know what I am going through. The insurance covers MOST drs but, there are only 2 POTS specialist and they are not contracted. There are several other Neuro drs on my plan, should I give them a shot? Also, the TTT is only approved if its for "fainting" diagnosis. I will check the Mayo clinic costs and maybe I will pay out of pocket. ANGELA- I thought that the POTS caused the Tachycardia? The back and lung pain can vary from day to day. In the worse of an "episode" my entire upper torso feels like its been hit by a truck! As I rest and limit activities, it gets better and the pain levels also are an inticater of how bad my HR, breathing and BP are going to be that day. Today the pain isn't so bad and the HR and BP are better also. It feels like I am coming to the end of this Flair Up. They seem to last longer and longer and I hope this doesn't become just continual flair. At least i do get a couple of weeks where I can do things before it gets unbearable again. Again, thank you all and by the by.....is low wieght and weight loss a common thing with potsies? Is this due to our HR always being high and burning calories?

Thank you, I have had the high HR while lying down since the beginning. The Beta was just started last month. It seems you can have high resting rate if you have over done it, drank alcohol, or are dehydrated. My cardio is sending me to her electro dr so thats something ...

I am still being diagnosised but, I started with 10mg twice a day. It hasn't been enough so I currently take 10mg 4 X a day as needed. I can say there is a definate difference but, I still can't preform regular tasks without feeling like my Heart will explode.

Hello everyone and thank you for reading. I am new (obviously) and am still undergoing testing. Let me give you the brief run down and you tell me what you think! 9/6/2008---woke up dizzy, sick, extreme heart pounding, short of breath thought it was the flu 9/12/2008---went to family DR as I was not any better, ran blood work and she did BP, HR laying, sitting standing, BP stayed aroung 107/60 but HR was 62/99/110---Blood work all normal. She called it a virus and sent me home. I stayed sick like this for 3 weeks, couldn't vaccum, go to the gym...nothing(basically feel like I am dying)Woke up one morning and knew immediately it was over, I felt fine. This went on 3 more times with the "sick" time lasting 2 to 3 weeks. By December I decided to see a Cardiologist. Did 24 hour Halter which revealed innapproriate sinus tack yet, not life threatening. Sent me to Rhuematologist and back to Family Dr for LOTS of blood work. All came back normal. 1/08/2009---stress test, ran on tread mill and pushed myself through it. HR did not go back down under 100 for 2 hours test revealed abnormal EKG yet no blockages. 1/09/2009---woke up and knew right away this episode had passed. Throughout the next month, I had a few bad days but, it was when I had a cold or drank some wine with dinner. 2/15/2009---woke up 2am with rapid HR 115 and a bladder infection. The beginning of a new episode as all the symptoms gradually came back. Cardiologist put me on 10mg beta-blocker twice a day and it helped ALOT 3/8/2009---at the gym and could get HR above 120 without pain, shortness of breathe returning and HR stays elevated even with beta-blocker on board the next 2 weeks I get worse and worse yet the beta-bloacker still is helping, without it I feel like I am dying. 3/27/2009---Cardio Dr increasing beta to 40 mg daily as needed but, will not commit to POTS as I have rapid HR while lying down. She wants me to go back to Family Dr and ask if she has any ideas???? WHAT!!! She also wants a PFT and CT scan even though I only have shortness of breathe when my HR cannot be controlled. I KNOW ITS NOT MY LUNGS! My insurance does not cover the MAYO and the only POTS drs in this state are there. My insurance will not cover a TTT either as it is considered "expieramental". I am seeing my family Dr tuesday and could use some advice as to what test I can have her run. PLEASE HELP ME< I KNOW THIS IS POTS By the by, I believe this all came as a result of a C-section gone BAD with my twins. The spinal block did not take and I refused to be sedated or drugged as it might have endagered my babies. I felt every cut, tear, pull, push...it was horrible! But my babies were safe and did perfectly. I had a lot of blood loss, infection and extremely high BP for 2 weeks after. I feel I have never been the same since. DOB 6/06/2007 THANK YOU!! Kimi

Hi, I am new to this board and am still seeking an "offical" diagnosis....I will post story in another thread. For the past couple of years, the joints in my fingers would ache and burn, esspecially at night, with alot of stiffness and noduals. I noticed that this would come and go so I obviously thought, rhumatoid arthritis. This was one of the first Drs I started seeing when the Heart Palps began and all test came back negative. I have also noticed that the joint pain is much better when I am in the "better days" part of this disorder. I have the classic back pain as well. I don't have an answer as yet but, I do have the terrible pain in the joints.