Evergreen

When it's hard to stand and walk, do you push yourself?

I've never fainted, but when I stand my hr races and pounds. (It's better than when I first started though, my avg hr when I stand is usually 130ish as opposed to 200)

If I push myself to stand more will I become more tolerant to standing?

Is it dangerous to stand if my heart is racing/pounding? Can that cause permanent damage?

This seems to help me. I've been seeing a chiropractor. He suggested eliminating all gluten and dairy. He told me about having proper posture to prevent head pressure.

My head feels so much better since I've been seeing him.

I recently started having this problem but so far it's only been in my right knee. I worry about it because I'm not sure if I should keep using my recumbent bike or if that will make it worse.

Thanks corina.

Thanks everyone. I'm sorry everyone has to deal with this, but it's comforting to know I'm not alone.

When I went to my first neurologist appointment he took my bp sitting, then had me stand and the machine kept erroring. He ran and got a manual cuff and couldn't even detect my bp. My heart rate was near 200 but my bp was so low he was surprised I was still standing. That could be your problem as well. Your blood pressure should correct itself eventually and the machine should work once your bp raises back to normal.

Thanks psalm

Sorry if I'm posting too much but I'm new to this and I'm trying to figure it out (without much support from my doctors)

I have CONSTANT head pressure, dizziness and tingling on my scalp. It feels like my head is constantly being squeezed, not too hard just enough to feel tight. And my head feels like it's too heavy to be held up by my neck. My head feels like it weighs a TON! Constantly. I can't find much about others with this symptom. Does anyone else have this?

Thanks everyone for replying

My heart rate when laying down is always above 75. Usually in the 90s or up. Is this normal with POTS?

My wife's heart rate is in the 50s so mine just sounds so fast compared to hers.

Also does anyone else get 24/7 head pressure? Like your head feels so heavy you can barely lift it?

Thank you everyone

Would MCAS show up on blood panels? I've had a ton of blood tests and they've all come back normal. Before getting sick I used to have coconut oil regularly, topically and orally and it didn't hurt. It certainly seems to be the cause of my problems recently though.

Thank you everyone for your help.

Psalm-

How long after taking the coconut oil did you start to feel better? I took it about four days ago and still feel miserable.

I'm not used to being chronically ill. I can't believe how much I took for granted being able to take a walk in the park. I've barely been able to leave my house except for doctor appointments for months. I just want to feel better. If anyone has any ideas, I'm open to hear them. I don't know what caused this. I used to be hiking every day.

Sarah-

I've been having dandelion tea for a long time. It hasn't given me any adverse reactions. The only thing that's new is the caffeine. My neurologist said my head pressure may be low pressure headaches which can be helped by caffeine. I haven't been able to tell if it helps or harms my head yet but I stopped it because I think it has elevated my already fast heart rate.

Other than that the only change recently was the coconut oil which each time I try it has made me feel miserable.

My last visit to the neurologist was 2 weeks ago. They said they would schedule the tilt table test but I think they forgot about me. The last visit was pretty discouraging. I dont feel like they are interested in helping anymore so I'm just trying to heal on my own now I guess.

I had an MRI with contrast. I had a 48 hr hltter, I had an echo and a ton of blood work. Everything came back normal (except slightly low testosterone levels which my neurologist said doesn't matter)

Dancer-

Thanks

Katy-

How does she react? For me it doesn't give me any sort of anaphylaxis or hives or anything like that but a few different times I've taken it and I've just felt horrible for days.

My symptoms began this summer. My neurologist suspects POTS. I've been trying to completely correct my diet to include only healing foods in the hope that will relieve some of the symptoms. I was getting steadily better until I decided to try some coconut oil. My progress plummeted and I'm back to feeling completely horrible. It's been days and I'm still not progressing as I was before. I'm not sure if it is the coconut oil or just spontaneous. I can't find anything about POTS and coconut oil reactions so I was wondering if any of you have tried it?

BTW, I've been keeping notes and this is what I've been doing:

Daily

Herbal tea

-peppermint

-ginger

-dandelion

Aloe Vera

Himalayan sea salt

Salad

-arugula/broccoli

-onion

-garlic

-pumpkin seeds

-cayenne

-olive oil

-walnuts

-tomatoes

-carrots

Meat

-chicken

-chuck roast

-wild salmon

Recumbent bike (2x)

5,000 IU Vitamin D

A/C off

Heater on 65°-70°

Occasional

Coffee/green tea

Lemonade

Cinnamon sticks

Licorice root

Spirulina

Herbal cough drops

Banana/pumpkin seed/salt/milk smoothie

Yogurt with walnuts (& dark chocolate)

Removed

Gluten

Wine

Apple cider vinegar

Does anyone have any thoughts about the coconut oil or anything?

I also found a brand called Venosan USA. Any opinions on that brand?

I am looking to buy some 30-40 mmhg waist high stockings. I currently have OTC graduated compression stockings that I think have helped my symptoms.

My question is: will it still work just as well if I get Open Toe? I don't like the tightness on my toes of my current pair but am willing to deal with it if the Open Toe works less than the closed toe.

The pair I found is from the brand Sigvaris Access. Anyone tried that brand?

TIA,

Evergreen

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.