Tobiano

Does anyone have the new Polar Loop monitor with the HR strap? I have the Nike+SportBand with Polar Wearlink strap. I like the SportBand because it is small compared to other HR watches and I can easily flip between the time and my HR (I don’t like to focus on my HR all the time but like the option of checking if I sense it’s climbing). My SportBand is going glitchy again and so will need to be replaced soon but I’m having trouble finding a new one. Anyone have the Polar Loop? It looks pretty comparable and maybe even better. Thoughts? Thanks!

Exercise used to be a trigger for me (nothing like nearly fainting while dragon boating... now that was an experience). So, I basically stopped exercising while I was undergoing the long road of diagnosis. I am starting a cardiac rehab program soon. This will consist of recumbent biking (10 minutes to begin and working up from there). If all goes well, the program will add in some weight training. I haven't done too much research on exercise but there are probably some old posts that have more information.

I hear your frustration! Florinef impacts sodium and water retention, which I assume contributes to this side effect. I would speak to your doctor about any concerns. Are there any other doctors in your area who might have more knowledge about POTS and meds commonly used for dysautonomia? Sometimes it doesn't hurt to get a second opinion. Take care and all the best.

Haha, indeed!

This has happened to me several times. The first time I thought I was getting a cold...but no. It lasts anywhere from a few hours to a few days. Sometimes I also have difficulties swallowing.

Thinking of you Alex!!!

Fingers crossed, Alex!!!

I also agree. Compression stockings and meds eventually helped me to control a lot of blood pooling. I used to have a sitting tolerance of only a few minutes and gradually was able to work up more. I used to benefit from sitting with my legs crossed up on the seat of the chair or I would just sit on the floor. In professional situations where I couldn't do this I would sit with my legs crossed regularly and try to change my position as much as possible. I also sometimes sat on a low stool with wheels, which was great because my legs were naturally more elevated and moving (when I wheeled around).

I take 6 NaCl capsules per day (1 gram each), in addition to table salt on my food. The pharmacy has to order them in for me - I just checked the bottle and the brand is called Galenova. I can't tolerate taking them whole so I actually break them open and dissolve 2 grams at a time into a water bottle with a nuun tab to disguise the flavour. It's not the most appetizing thing but I'm pretty used to it by now. I tried to talk by doctor into reducing my salt intake at my last appointment since it's so hard to fit it all into my diet - but no... so I will continue to drink this sea water for now! Hope you find something that works

GN, I hope your weekend goes alright. Please take care

Hi GN! I can only share my experiences. When I first started bisoprolol my resting HR was dipping down to the 40's and 50's. I also felt freezing, tired, and like there was an elephant sitting on my chest. After a few weeks, things seemed to level out and now my resting HR is anywhere from 60-80 (a huge improvement compared to before I was on the med). I hope you hear from your cardiologist soon for specific advice... I know how frustrating it can be to have to wait. Take care

Hi Kim, Welcome and glad you found this place. Sorry to hear about the difficulties finding a physician who treats POTS in children. I'm glad you are working with a great pediatrician who can hopefully help your family navigate the system. If you use the search function I think there are several other posts that may help to answer your question. Please keep us posted on your son.

Thanks Alex! I appreciate the info.

Sorry Alex... I don't mean to hijack your post... hope this is okay that I have a somewhat relate question. I have just been prescribed 60mg twice a day. It was at the very end of an appointment - I was given no guidance on spacing this med during the day and there was no time for any more questions. Sounds like the med only lasts about 4 hrs but I'm nervous about taking doses too close together because of the possibility of ACh buildup. Of course, I do plan to check with my doctor about my specific case. I am just curious what others have done.

Definitely, sometimes there seems to be no rhyme or reason to this. When I go through good days sometimes I think I'm just making a big deal out of things and then... bam... back to reality. I know I'm not much help here but I do understand.

Hahah the Ping-Pong treatment. You guys just made my day! Alex, do you have a systematic review on that one? At least here we all have empathy for everyone else that is going through this.

Thanks for sharing.

Do you ever feel like a ping-pong ball, being bounced around from one physician, specialist, clinic, and hospital to the next? Too ‘neuro’ for the cardiology gang yet too ‘cardiac’ for the neuros? Too complex for the GP yet ‘not life threatening’ enough to keep the specialists’ interest? So many times I have asked questions and been told, “I don’t know, you will have to ask X” about that”. I love when X turns out to have been the physician who referred me in the first place because he/she was unsure of the answer and wanted me to clarify with someone else! Part of this I have brought on myself, because I am still ‘shopping’ for physicians to determine who I ultimately feel comfortable being followed by. Part of this is just the complex nature of this syndrome, which is generally not well understood. It doesn’t make it any less frustrating though. Thank you for listening to my rant

Hi Hanice, Sorry you are going through a rough spot. Sometimes it seems like we are on a horrible rollercoaster ride that will never end. Thinking of you... hope things level out more for you soon. Take care!!

My dosewas just increased. I use to take just 0.1 in the AM. For the past few days, I have been on 0.1 in the morning and 0.1 in the evening. I agree with others - you know your body best!

Hi Alex. That sounds so scary. I'm just about to start Mestinon (60 mg twice a day) and will let you know if I experience any side effects. I'm interested to hear what others say about cholinegric crises. Sending positive thoughts your way.

This happens to me too. I seem to startle very easily.

Hi PackersFan, My experience is that any time my meds are altered (either a does is increased or a new med is added) there is definitely an adjustment period to whatever effect the med has (e.g. change in BP or HR). Hope that you acclimate soon. Take care.

Thanks E Soskis. I'm about to have a short term trial to see if there is any benefit. I should have a more detailed plan in place soon. Was just curious about other's experiences.

Thanks Chaos! Anyone else?