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New Member, Any Advice


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So here is the long version of what's been happening to me. If it's too much and you just want to skim that's fine but I would really appreciate anyone's advice, tips, thoughts on cause and cure.

25 yr old male

Sudden debilitating illness (began Aug 2015)

Neurologist suspects P.O.T.S.

Currently undergoing tests

Treatments trying: OTC waist-high compression stockings, recumbent biking, coconut water and extra salt

Aug 3, 2015

Woke up with extreme tachycardia

Thought it was due to pushing myself too hard during one of my first (and last) attempts at high-intensity interval training then coming home and lifting weights and eating a high carb dinner.

Symptoms disappeared until September.

(Began drinking wine at some point (4oz a day) because my resting heart rate was rarely as low as my wife. One night drank about 8oz and got a headache which never went away. Stopped drinking wine)

September 10, 2015

Long day which included driving an hour away, sitting in the car for 40 minutes because car decided not to start, then driving back and going grocery shopping.

At grocery store, running through store to get home when all the sudden heart started pounding, got lightheaded and arm started tingling. Drank a whole bottle of water and had to walk slowly through store.

September 11, 2015

Drove about 30 minutes away for work, then felt really sick so went to Urgent Care Clinic. Doctor did EKG, and a few blood tests but everything looked normal. Recommended a anxiety pill but I declined.

(Began searching the internet desperately for answers. Everyday I felt horrible now. Constantly I felt dizziness and head pressure and frequently I felt tingles in my arms and nausea. I went from hiking a mile or two a day to feeling like crap and doing nothing. Most days I couldn't get out of bed. The only thing I found that had a variety of "vague" symptoms like mine was "Toxic Mold Syndrome". Went on an anti-mold diet for weeks with no improvement. Had house tested for mold and he said there was mold in the walls that would eventually cause a problem but for now my air quality is "exceptional". Thought I was just going to die and had no answers.)

Went to a chiropractor hoping it was a pinched nerve or something causing my symptoms. I've had chronic back pain from a childhood accident as well as a four-wheeler accident in 2011. The chiropractor did a neck X-Ray but said it looks good. He adjusted my back but didn't want to adjust my neck until I had my head checked out. He referred me to a neurologist but the appointment was 6 weeks away.

September 22, 2015

Got a GP appointment hoping they would help. My wife filled all my paperwork out for 15 minutes then we just sat in the waiting room, waiting. I felt horrible. My wife told the receptionist I needed the doctor, the receptionist said we'd have to wait a few more minutes (even though we were the only ones there and the first appointment after they were closed for lunch). She went back to the desk three more times to see when the doctor would be ready. Eventually a nurse came and started to examine me. She called for the doctor. I couldn't feel my arms or legs. My head was full of pressure and dizzy. The doctor came and had me sit on the couch and put my feet up while hey checked me out. I yelled that something was wrong and I needed the hospital. They called an ambulance. The doctor called my wife into the hallway to say he thinks it's just anxiety but the hospital can run tests to rule out anything else.

At the hospital they did a chest X-Ray, and ran a few different blood tests which all came back normal. My wife requested an MRI but they said they don't have time to do an MRI. They wrote a prescription for an anxiety pill.

I never got the pills. As a teenager my mom had me diagnosed as OCD, ADHD, Anxious and Depressed. I took a ton of pills before eventually detoxing from them all at 18 yrs old. I've been detoxing my diet and eating organic whole foods. I was not eager to start taking pills again.

September 29, 2015

My wife finds out she's 6 weeks pregnant but I miss the first appointment with the midwife because I feel horrible. My excitement about the baby is ruined by my constant symptoms.

October 6, 2015

Finally time for neurologist appointment. My wife goes in to start the paperwork while I wait in car. When it's time she has to bring out s wheel chair and push me to the doctors office. I can't even stand. The nurse tries to take my blood pressure but the cuff gets to tight and I make her stop. I tell the doctor everything that's been happening the past couple months. He takes my blood pressure. It works. Then he says to stand up. After a couple minutes he takes my bp again. The machine errors three different times. The doctor gets a manual bp monitor and can't detect my blood pressure at all. The pulse monitor shows my heart rate went up to 194. He said "Great news, you're not dying. I think you have POTS. I'm going to get you a cardiologist appointment for some more tests." He leaves the room to call the cardiologist and comes back to say we have an appointment the next day at 10am. He prescribes Gatorade. Lots of it.

We look up everything we can about POTS. I start drinking coconut water with extra salt (I tried a bottle of Gatorade but switched to coconut water to avoid the chemicals).

October 7, 2015

Got an echocardiogram. The technician says she's not a doctor but it looks normal. I get a 48 hr Holter monitor.

Since getting sick I went from about 190 to 168lbs. My legs have no muscle left. I read about recumbent biking to prevent deconditioning and strengthen my leg muscles so my wife bought one. She also came home with knee high compression socks and waist high compression stockings. I try to sit up and stand up more each day. I think some days these things are really helping. My heart rate doesn't jump so much anymore but I have constant head pressure and frequent dizziness.

Questions: any ideas what caused this? Any ideas on what to do to fix this? Thanks for reading this. I'm grateful to finally have an answer on what's been causing my symptoms and to know that I'm not alone.

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I am sorry that you are experiencing this. It is no fun.

The best that I can suggest concerning causes etc. is to go to a center that specializes in these disorders. There are panels of blood work that they can run. They can do more thorough testing, and have a better idea concerning your presentation. I suggest specialists and full autonomic testing. What region do you live in? Have you reviewed the doctors list on this site? I say all of this if you become unsatisfied with the progress you are making now.

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Wow, you lost as much weight as me. I have lost a a few pounds more than you. However, my symptoms began 3.5 years ago and my weight was the same except for recently, in the past few months I lost 12 kg (26 pound).

I bet that your poop doesn't look normal. Mine looks light brown and breaking up.

I don't have POTS but sounds like you do. I guess I have some generalized dysautonomia.

Anxiety pills might help, since recently (aug 14 to now), I began having stress like symptoms. Tightness in head muscles, a band of tightness in left chest with arteries feels like squeezing. There was also this weird sensation coming from chest area. It was very extreme. I would wet my chest as a temporary relief and was so bad, that I wanted to quit my job and just lay down in bed.

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