I'm New to this Forum.

[B-leave]

Hi Everyone,

This diagnosis is new to me. I've been healthy most of my life . I've been told I had anxiety many times with symptoms over the years. I began having fatigue a month ago and not feeling well, some anxiety.  Four days ago I was totally exhausted. Didn't have enough energy to put my makeup on. My heart rate and blood pressure rises upon position change. All blood work and EKG and echocardiogram normal. The cardiologist has diagnosed me with dysautonomia. I have halter monitor and will do stress test. If those are normal then I suppose it's dysautonomia.  I'm taking a beta blocker and I am starting to feel better, energy slowly coming back.  Does anyone have same symptoms as me and what is treatments? Also, any successes. Are you ever able to get off the beta blocker?  I need reassurance this won't kill me.

Thank you !

 

 

 

 

[WinterSown]

Welcome Amy, the posters here are very nice, you will feel comfortable. I am sorry you were diagnosed with a dysautonomia, but on the other hand, you are pretty fast to get a diagnosis after recently become symptomatic with fatigue--that's good sign, you have a savvy doctor and that's going be very helpful in your learning to manage your symptoms. Not all doctors can make the diagnosis that fast even if they know about dysautonomias, most don't. I have been on an assortment of cardiac drugs that get adjusted every few months. Giving your doctor feedback on how you are feeling is vital to them finding the right drug or drug combo and creating a maintenance plan for you. Keep a diary or note on a calendar the problems you are having on any one day and bring that with you to the next doctor visit. 

[B-leave]

I think I have had it for years and was misdiagnosed as having anxiety for 19 years. Symptoms this time was extreme fatigue and positional heart rate and bp not sure if it's because I'm older now 52.  Cardiologist knew what I had after explaining symptoms after tests.  

Thank you for your kind words and tips.

[KiminOrlando]

Hi Amy, 

Many of us have been misdiagnosed with anxiety. I'm glad you finally found the doctor who recognized what it really was. My problems started when I was 13. I won't even go through all my wrong diagnosis. I was diagnosed correctly when I was 32, but told that the treatment was to get on a treadmill, so in reality, I didn't really get help until about 10 years ago. I am 47.

You are in good company here. There is so much knowledge and experience shared on this site. Please feel free to ask anything and use the search feature to look up specific topics that interest you. 

I am on a beta blocker. I tried to go off of it once because I didn't think it helped that much and had read it could contribute to fatigue. Boy was that a mistake! I'm still on it and have no plans of going off of it again unless I am miraculously cured of tachycardia or they have a substitute med. That is just my experience. Yours may be different. The one common thread with dysautonomia is that everybody is different. 

Take care.

Kim

[B-leave]

Hi Kim,

Does your BP go up as well as your heart rate?  Because I see where some people BP goes real low?  Has it ever caused you extreme fatigue/ exhaustion!

Were you diagnosed with anxiety as well? Have you ever taken an SSRI or benzodiazepine?  I take an SSRI and got off benzodiazepine two years ago.  

[Nan]

Hello!  I am new here too! 

I have also been newly diagnosed with POTS and dysautonomia in February. It took me about about a year to get diagnosed. My "friends" all initially wrote it all off as anxiety, my neurologist initially was going to write me off as a head case until I went to Mayo in MN and they diagnosed me with Central Sensitization Disorder.  I didn't get diagnosed with POT and dysautonomia until I had a fainting episode in February. Currently I am doing a vegan diet and trying to get my family on board with a raw vegan diet. It has helped me tremendously-more so with the raw vegan diet.  My BP gets super low, as well as my oxygen saturation and my HR skyrockets, I also deal with extreme confusion, extreme fatigue.   I haven't been prescribed any medication and I am just taking one day at a time. 

[KiminOrlando]

@Amy Leonard My BP goes low while my HR goes up. Yes, I was diagnosed with anxiety and prescribed an SSRI. I truly disagreed with the diagnosis, but was so desperate to keep my job that I would have tried anything, so I took the pills. I got worse. My (former) POTS doctor knew I was on this med and didn't say anything. My current POTS doctor took me off of it immediately because SSRIs drop blood pressure and contributed to the problem- at least that is what I was told. If you don't have low BP, an SSRI may be ok. I think some people on here take it for a specific kind of POTS. I don't know what kind you have, but with your BP going up, an SSRI might very well be part of this equation. Yes, fatigue and brain fog are a very big problem in my life. I have an added problem of not being able to sleep until 2 or 3 am no matter how tired I am. 

@Nan Welcome to the group. I am glad you have found something that is helping reduce your symptoms and happy that it sounds like your family is supporting you with this lifestyle change. Those are two very big hurdles. Do the doctors have any idea what is causing your O2 to drop? Is it the low BP and the heart pumping inefficiently? I think I read something about that somewhere. 

Take care.

Kim