teecee28

Hi Liz I am on Propranolol 120mg twice a day for my heart. I also take Midodrine 5mg twice daily for my OI. i went to the EP because my HR was so high. He did a cardiac ablation to burn abnormal pathways. It took 24 burns to get rid of that extra pathway. He also did my TTT. I just had another TTT by an EP here in Myrtle Beach, SC. He concluded that I have Autonomic Failure. He disagreed with everything the Mayo Clinc (Jacksonville) said. I also take Klonopin 2 mg 3 times a day, Marinol for nausea, Vitamin D 4000 units a day, Glucophage- Diabetes and sometimes Novolog, Lorcet 10/650 for Migraines,Elavil 100 mg for small fiber neuropathy and Adderall 10mg twice a day for Chronic Fatigue. I was on Florinef, but the EP wanted me weaned off because my Adrenal glands were not working. My cortisol was zero. I do have phenergan to use if I get severly nauseated. I take Tricor for Lipids and Cholesterol. I think that is about it. I had chronic chest pain and was on Ranexa 1000mg twice a day, but it didn't help so we stopped that. I have had 3 cardiac caths and was told I have very small coronary arteries. The Metprolol was causing vaso constiction of the coronary artereies, which made my CP awful. Since we changed to the Propanolol I have had no CP and that is amazing. During my TTT the EP said he had never seen anyone respond the way I did. My HR was as low as 30 and as high as 180. My BP dropped 80 to 100 points upon standing. He gave me Isuprel(adrenaline) and he also gave me a med to increase my BP. The doc always gives 100-200mg and for some reason(GOD) he only gave me 20mg. When they stood me up I was screaming in pain. I thought my head was going to blow up. They laid me down right away and got the crash cart and started throwing Nitro's under my tongue and gave me IV Nitro. My BP went up to 289/260. If he would have given me a 100mg I would have died. But atleast I know what's going on. I have POTS, but that is not my main problem. The Autonomic Failure is. My thyroid, pancreas, gallbladder and now adrenals are not working. Had the gallbladder out 2 years ago. Now this crap is effecting my bowels and intestines now. Fun Fun! Hopefully my adrenals will start working again and I won't have that to worry about. Since the med changes I am not passing out all the time. I had a bad concussion last month from so much fainting and hitting my head. That is my life story....LOL I wish you all the luck in the world. You will also be in my prayers. Oh yeah I am now allergic to all kinds of meds. I have never had allergies in my life. I am 40 years old and have had POTS since 2004. Stopped working due to OI in May 2010.

I was put on Lexapro 20 mg by my electrophysiologist. I also was on meteprolol and klonopin. I am still on the lexapro and klonipin, I just had to change my heart med because the meteprolol wasn't controling my HR at all. I was told by my EP that the Lexapro helped block the adrenalin. It really helped me because the alarm clock went off and my HR was up for 4 hours. I am also a Respiratory Therapist and if they called a Code Blue I wasn't worth a crap. My heart would beat so fast and I would shake and sweat like I was in a sauna. I wish you luck and hope whatever meds you need to take in order to help you, that you can tolerate them.

I saw Dr. Chesire in Aug of He did not impress me. I was referred to every doc in the world and ended up down there for 5 days to get all the testing and procedures done. The only doc that offered help was the cardiologist. They gave me an excersise program. This other doctor sent me to physical therapy because Dr Chesire felt I was deconditioned. That doc(DR. McIntosh did not agree about the deconditioning, but sent me anyway. The Gastro doc gave me a new med for nausea. Dr Chesire never followed up with me, I had to make an appt to see him and he didn't say anything. I spent 13,000 dollars and left without anything different. By the way, he doesn't like it when patients come in with a diagnosis of POTS from somewhere else. I had been diagnosed in 2004. The reason I went was because I had to stop work as a respiratory therapist in May 2010. I was trying to get back to work. My BP would drop so low I would pass out and still do. If you go they are nice, but don't look for a miracle as I did. Good luck to you.

I don't have MVP and I have POTS and OI. I have Chronic Angina that is made worse by the Beta Blocker that I take. My Coronary Arteries are very small and the BB cause vasoconstriction. My CP feels like heavy pressure and squeezing. I have had this since 2004. I have had 3 Cardiac caths and a Cardiac Ablation. Everything checks out fine for me too. I take Ranexa 1000mg twice daily for CP and I have Nitro to use as long as my BP can handle it. Hope this helps. It is really scary to have CP.

My Electrophysiologist put me on Lexapro in 2006 to help block adrenalin. I have a severe over-reaction to adrenalin surges. It has been a life saver. If I was startled by anything my HR would increase to 180-200 and stay up for hours. Now I just have a normal response. I am so happy for you.

Very smart to bring information about POTS. I am 40 and have had Dysautonomia for 8 years. I worked as a Respiratory Therapist until last May. I went to Mayo Clinic and have my EP, Cardiologist and my Primary doc that say I am unable to work. I have been turned down twice. Don't let it get you down if you do, everyone says it's normal. I have an attorney. SS gives the reason that: due to my age and educational level they feel as though I could find some type of work less demanding. Ha is what I say. I pass out around twice a week. Anyway good luck and I hope you get your approval letter. I wouldn't take your heart meds at all the night before or the day of.

I am so sorry that you do not have the support you need. My husband is wonderful and I still have moments of total rage. I see a psychologist and psychiatrist. My psychologist tells me that we have the right to be angry that our lives have been disrupted by this disease. She also encourages me to take 20 minutes every day to meditate. The meditation helps once you figure out what works for you. I live at the Beach so I love the sound of the ocean. I bought an Ocean Waves CD and listen to it on my IPOD. It is relaxing. I have had dysautonomia for 8 years and it is getting worse. I have had to quit my job as a Respiratory Therapist and now I have started fainting regularly. We are grieving the loss of our body control. I am in my pitty pot. I have to get out, but it is hard. I will pray for you. You are in control of your life, not your husband or his mother. It is your illness and your life. Take time for you to meditate and learn to let him eat a sandwich. I stopped cooking because I just can't anymore. My family is still alive and healthy. Let's put on our big girl panties and get emotionally better.

I was placed on Lexapro to block adrenaline. My HR would go up to 180-200 and stay there for hours. i was put on Lexapro in 2006 and it has worked wonderfully. My electrophysiologist prescribed the lexapro 10 mg. I had to go up to 20mg.

I have been taking Metformin prior to developing POTS and OI in 2004. I have no trouble with the medication. The trouble is the diabetes itself. The slightest fluid shifts with a diabetic can severely impact your POTS. Don't concern yourself as much with the medication, concern yourself with Diabetes.