Just Diagnosed--Looking for Others' Experiences

[Samantha91]

Hello, 

ive just been diagnosed with autonomic dysfunction. 

Ive been sick for the last 6 years and have only been getting worse. 

My symptoms are very fast heart rate when standing, chronic fatigue, ibs, muscle pain, heat intolerance, can't exercise what so ever, headaches, hot flushes and the list goes on! 

Ive had many of tests but my new cardiologist said I have this. 

I have read about it and it doesn't sound that great and just wondering what other people are experiencing and how they are going about it to get help and feel better!

i have to drink 3 liters of water a day and wear compression stockings. I'm on cymbalta, inderal, floernif and omeprezole. 

Would love to hear other people's stories

[looneymom]

Hi Samantha91

My son had many of those sym[ptoms in the beginning of his POTS journey. I'll make a few suggestions. Exercise on the floor only and then do sitting exercises in the chair. My son did a lot of floor exercises and then eventually moved on to a recumbent bike. My son had very weak core muscles because he could not stand or walk for several years. He had POTS with autoimmune antibodies.

Get your B vitamins checked. They help with energy and chronic fatigue. My son still has fatigue problems from exercise and from doing school work. H eis a Junior and does online school but has classes in Chemistry, Algebra !!, History, and American Lit which all required alot of reading and staying focused on the lesson. He gets just as tired from that as exercise. He has to pace out his day and take breaks.

My son cannot tolerate heat either. He just avoids being outside during the heat of the day. He can tolerate up to about 70 degrees.

For muscle pain and headache, I would suggest neurotransmitter testing. Unbalance neurotransmitters can cause many symptoms that you describe. My son had major problems in this area. A neurologist or functional medical doctor can run this type of testing. However, this testing can be ordered online. My son has had the testing because some of the doctors he has seen in the past had the kit in their office. It can be a spit or urine test. The results will be sent to you and they recommend supplements to correct the problem. My son takes many supplements but I would rather see him taking supplements then the medications. He is extremely sensitive to neuropsychological meds and the side effects can be horrible.

As for ibs, look up Low Dose Naltrexone. This medication has been used to treat this condition and others. My son takes it for chronic pain and it also took care of his daily persistent headache.

He also drinks 2-3 liters of fluids every day and takes 15 thermotabs throughout the day, 

 

[Lily]

POTS crept up on me gradually instead of developing after an illness.  I have very high standing plasma norepinephrine, but it seems to be a response to low blood volume and blood pooling rather than a primary hypernadrenergic state.  The symptoms that interfere the most with daily life and my job are lighthededness, brain fog, and fatigue.  I am able to hold down a full-time job as a college professor, partly because the nature of the job is so very flexible.  I can just do any accommodation I feel like I need.  I haven't had to ask formally yet for anything.  Plus I love my job.  I'm on fluorinef and clonidine for POTS, and I have compression hose, but they don't get me back to 100%. Exercise helps, too, but I have typical ADHD problems with staying on schedule.  

[jvherenow]

I was diagnosed a couple months ago after they did a level 3 stress test (where you're on the bike with the breathing tube in your mouth and the EKG leads on your chest but you ALSO have an arterial line drawing blood every 30 seconds and a catheter going in through your jugular vein to your heart). They found that not enough blood is returning to my heart from my veins (normal pressure is 12 to 20 mm Hg and mine was 0-2). That causes the main, limiting symptom of shortness of breath, dizziness, and brain fog. But there are plenty of other symptoms like trouble swallowing, chronic constipation, visual disturbance, low blood pressure when lying down (80/40s), bradycardia (HR in the 40s sometimes),  blah blah blah.

I've been slowly titrating up mestinon since July and am finally at a dose that is really helping. I get about 4 hours out of a 90 mg dose and then I start to feel the symptoms returning. TONS of powerade zero and a very high salt diet help. Also, I just have to lie down and rest a lot with my feet up. Compression helps a bit too, particularly in the torso. 

I love to exercise but I found that I can't weight train yet as it wipes me out for a couple days after I do it. Same with longer time on the elliptical or longer hikes. So, I'm trying now to break my cardio up into shorter bits like yoga for 5 minutes in the morning,  a 20 minute walk at noon, 10 minutes on the elliptical in the evening, and 5 minutes of yoga before bed. (I was very athletic before this all happened so this is a major slow down from what I think I should be doing.) In the long-term, exercise will definitely help the prognosis.

Try to stay positive and accept the reality of what your body can and can't do. Before getting diagnosed, that was the hardest part for me. I kept thinking I could just will myself to get up and go again or 'fix' my shortness of breath. Ha!