My LLND thinks I have this - going to the cardiologist this week.
I've been getting head rush type feelings, pass out type feelings and it's worse when I am on my feet.
My resting blood pressure and pulse are low and when I get up, my pulse jumps up really high. Like from 70 to 130 within the first minute of being up. Blood pressure also goes up with it but not super high.
The more I am up and about the worse I feel - pulse gets higher. I got a reading of 148 while making lunch in the kitchen!
I tried an abdominal binder and that kept my pulse a bit lower - it went up to 118 when I was up before.
I also added more salt to my diet and lots of water.
Any more ideas? What helped you?
Posted by tickled1 (Member # 14257) on :
I didn't do well with florinef. I managed it just with salt and fluids and gatorade. I still have it to some degree but I was dx with it before Lyme dx and after treating Lyme (not finished) the POTS is better than it was.
Posted by ktkdommer (Member # 29020) on :
My son has been taking florinef for POTS for several years. His symptoms are better with Lyme treatment but not perfect. He also takes a beta blocker. He drinks a lot and tries to stay out of the heat.
I hope someone can help you out. Your cadiologist should have some things to try.
Posted by annxyzz (Member # 20404) on :
Mine improved after 6 months of herbs and rife (EMEM) . I took herb Pharm artemesia annua and grapefruit seed extract drops every other day .
Prior to that I had been on ABX for 3 years and was still struggling intensely . These 2 herbs and rife really helped me .
I do not have it severely at all very often, just fatigue . I used to struggle to stand up straight and stay on my feet to do something simple like load the dishwasher or put on make up . I would stand up and feel like my body weighed three tons , and I am quite small .
Good luck .
Posted by opus2828 (Member # 15407) on :
Thanks for the ideas. Any more?
Posted by opus2828 (Member # 15407) on :
Up
Posted by TTLav (Member # 33232) on :
I TAKE FLUDROCORTISONE AND IT HELPS A LITTLE BIT. BUT THE ONLY THING THAT WORKS FOR ME IS LOTS OF H20 AND GATORADE--I DRINK 1/2 OF MY BODY WEIGHT IN OUNCES, BUT DON'T USE WATER ALONE YOU NEED THE ELECTROLYTES.
Posted by WheelWatcher (Member # 34223) on :
My hubby was put on mestanon by a specialist in the autonomic nervous system.
Normally that drug is for myasthenia gravis, but it did help him somehow be more able to stay upright
Also he wore serious compression stockings all the way to his waist!
Ate a lot of salt too.
Posted by opus2828 (Member # 15407) on :
Thank you. So far what I've got is that some meds may be worth trying, compression, drink a lot but not only water - gatorade too, lots of salt treat lyme, antibiotics, rife and herbs.
I really hate this - my heart rate just so way up when I get up. Also, when I change my position whether I roll over in bed or sit differently.
It adjusts then, but not when I'm standing.
Has anyone tried exercise, magnesium, Vit B12 or CoQ10?
Posted by Herbs15 (Member # 34777) on :
I have had this as one of my main symptoms. I almost consider it a variant of POTS because of the increase when rolling over when I am laying down. Before starting meds, I was taking almost 10 salt tabs per day and 80 propranolol ER per day plus approximately 40 mg of short acting propranolol as needed. I also had a low and narrow blood pressure.
My pulse would go from in the 40's and 50's lying down to 110 upon movement or standing up. It would pound relentlessly. I was so miserable...
When starting doxy it seemed to get worse and I could not tolerate zith at first. I was on doxy, slowly ramping up to 150mg twice a day. There was a modest improvement, but every herx
Posted by opus2828 (Member # 15407) on :
Thank you for your answer.
Did anyone get shortness of breath with their POTS?
Posted by Herbs15 (Member # 34777) on :
Sorry - accidentally hit reply!
Anyway... With every herx I would be out on the couch for days. Then i started Ceftin... That is when I saw real improvement with my heart rate. It almost feels as though I had an inflamed heart with a CNS/POTS issue. I did have a POTS diagnosis... But it always seemed just a little different. I start IV rocephin in a few months and that is when I am hoping to finish off my heart issues for good
I had to ramp up my abx's very very slowly due to my heart issues. It is very scary to feel the horrible tachycardia and shortness of breath. But it has slowly improved... Hope this helps!
Posted by Herbs15 (Member # 34777) on :
Forgot to add... I am off salt tabs and just take one 60 mg propranolol ER per day. I am waiting to exercise until my heart is not beating as hard with exertion.
I have heard really good things about Dr. Levine's POTS exercise program (starts you in a recumbent position) but with my Lyme it was too intense for me. He is a cardiologist out of Dallas.
![[Smile]](smile.gif)