yogini

I would start again with the salt tablets and add them in slowly. It takes a few days of salt loading (with lots of water) to have the full effect of raising BP. I think our bodies can be sensitive when we introduce any new substance into our systems. I wish I could handle even one salt tablet - I throw them up!

I've been on Paxil 20mg for the past 6 months or so with good success. My biggest complaint is that when I wake up, it has worn off and it takes a while for it to hit my system after I take my morning pill. I have a lot of trouble sleeping these days too, and I was wondering whether it was because the Paxil has worn off. I was thinking of asking my doctor for a small dose to take at night to help with this...either that or try a time released version if there is one..do any of you know whether there is? And if you tried it, did you find that it helped?

Hi, I was wondering whether you've had your "overheating" symptoms looked into further. What you describe could come from dysautonomia, but it sounds a little extreme...so maybe there is something else going on? Good luck, feel better.

Have you tried mestinon?

Have you seen the movie "Young At Heart"? It's a critically acclaimd documentary about a senior citizen's chorus that travels around singing pop/rock music. The seniors live for their singing - some are on their last legs and they literally risk their lives to be in the chorus. The funniest part is that there are only a couple of people int the group that can sing in tune and remember the words - maybe that's why they want your husband so bad...LOL!!! Anyway, your post just reminded me of that movie, which I loved. You might get a kick out of it... Anyway, I agree with the others - stand firm. Good luck!

FYI, for anyone interested in trying a Neti Pot or nasal rinse, I just picked up a couple at Rite Aid. I'll give them to my family, as I already have one. There are few different types on sale, and FREE after rebate. Can't beat that!

Hi maxine, That's so frustrating! I don't think you even owe them an explanation or any info about your condition. There are some people that do get it, and others that just don't. It sounds like some of these people fall into the latter category. Can you just say your doctors won't allow you to travel? Or that you can't afford it or that you have another commitment at that time?

Just wanted to add that I received a few really sweet, thoughtful messages from friends in response to what I posted. I wasn't sure how people would react and the positive responses were totally unexpected. One of them was so nice it made me cry. I think a lot of people know I have a health issue, but I don't talk about it much. It makes me feel good and glad that I decided to put it out there. And it gives me hope that people CAN be educated about POTS!

Yep, I switched to taking mine at night for this reason. I think it's because of the lowered BP. I also drink a big cup of broth every morning and night to compensate for this.

For those of you who do have sites where you've posted articles, videos, etc., if you feel comfortable with sharing them, I'd love to take a look. You can PM me the address and I promise to protect your privacy. Thanks!

Ah, yes! I've seen this before. I think someone posted about it a while ago. It looks like just a piece of plastic, so it doesn't seem like it would cost much or weigh much. If you get it, tell us how it goes. I do lots of breathing exercises and biofeedback. I think they help a lot to keep my system calmer.

I like the idea of the notes. I want it to be there for those who are interested, but want it to be subtle. I like the idea of posting articles and videos too. I'll do a little at a time, so I don't overwhelm myself and others. Right now I'm still figuring out really basic things like how to find my wall (not a joke)! I'll definitely PM you with any questions... I'm sure I'll have a ton. Thanks!!

Funny, I was thinking it reminds me of the breathing they teach you in yoga - you're supposed to constrict your throat and make a noise while inhaling. I wonder if the device offers something extra than just doing it yourself. What does it look like and how much does it cost?

Yikes, that is really frustrating. I think minor temp fluctuations are sometimes part of POTS. But if she keeps getting fevers that high, I agree with your hunch that something else is also going on. I hope you get to the bottom of things and that she starts feeling better soon.

I've been resisting joining Facebook, but wound up joining a couple of days ago. I thought it would be a good way for me to explain my condition to my friends - maybe they will get it better if they see it in writing. I thought I'd put a little blurb on my page, so that the info is available for my friends that are interested. I'd love any suggestions you may have - I know many of you have had POTS for a long time and/or have a medical background. (Also, I really don't know how to use Facebook, so if any of you can suggest how/where to add this, I'd appreciate it! ) Here is what I'm thinking: "As you may know, I have a condition called "POTS" which is a disorder of the autonomic nervous system. The autonomic nervous system controls automatic functions, including heart rate, blood pressure, breathing and digestion. I had a virus a few years back which affected some of my autonomic nerves. When a person stands up, these nerves are supposed to constrict your blood vessels to keep up blood pressure - otherwise gravity would pull all of the blood down to the feet. In my case, my blood vessels don't constrict properly. So, I sometimes feel lightheaded when I sit or stand up and my heart beats faster to pump blood to my brain. Things like exercising, climbing stairs and carrying heavy objects are harder for me, because they make my heart beat even faster. I also have to stay hydrated, which is why caffeine and alcohol aren't the best. Fortunately, the nerves can heal. I've slowly been getting better and have medicine that makes things a lot easier. For more information on this condition, you can check out www.dinet.org"

Hi Melissa, It's good to see you around the forum these days! I recently started using a neti pot. I got the SinuCleanse, only because I saw a commercial saying that it's the #1 netipot, whatever that means. I was surprised to find out it's made of plastic, but it seems sturdy enough and is dishwasher safe...and actually plastic is lighter, so that is probably better. Mine looks like Aladdin's lamp, but I don't think the shape would matter if you're using something with a spout. It's actually a lot easier to use than I thought. Not to get graphic, but you just pot the spout in your nose and tilt your head to the side and the water comes out the other nostril. I think it would be easy to use over a wide bowl or pan if you couldn't make it to the bathroom. Good luck!

By the way, with BBs, you either take them every day at the same time or you can use them once in a while on a bad day. It's not good to keep yoyoing on and off of them. That's probably what your doc meant by "regular".

That's really annoying. I've also had problems with so called POTS specialists giving me conflicting info or not knowing what to do. I feel like the first year of my POTS was a huge wild goose chase. I'd have started feeling a lot better faster if I had received the correct guidance in the first place. It is really heartbreaking to think about and I don't want anyone else to have to go through the same thing. Though they don't work for everyone, BBs are a standard treatment for POTS. I don't think the analogy of tylenol to pneumonia works. BBs slow down the heart. Yes, they don't heal POTS, but neither do any of the other meds! Though if your son's HR is low, it makes sense to reduce or eliminate the BB (or try a different one). Also, I don't think salt is required to make mestinon work - that is for florinef. Though salt loading can be really helpful. I drink two cups of broth a day, each of which has 750 mg of sodium. I tried salt pills a few times and couldn't hold them down. If mestinon doesn't help, has your son tried midodrine, florinef or an SSRI like Paxil? Those are more common than Effexor and probably more than mestinon too. I think mestinon and Effexor both seem scary!! I think I finally found my way around my docs by reading a ton and asking questions here to figure out what I wanted to try. Then I explained and asked my doc if it made sense for me. My current doc, if not a POTS expert, has been pretty open minded. I'm at least glad your docs are in the same hospital and have agreed to communicate. Let us know what they say!

I tried taking a highly absorbable form of thiamine for a few months and it didn't help me; other things have. One of the difficulties with this condition is that we're all so different and nothing works for everyone. But it's good to keep talking to doctors, researching and trying different treatments until you find something that helps you...

I would be LIVID too. You shouldn't have to pay and hopefully they will realize that if you explain why you have the permit. Maybe this is an opportunity to educate the ignorant that people who look fine on the outside can still be very ill...and hopefully, as a bonus, the officer gets in trouble for being such a jerk!

I was thinking the same thing - of all the things they could've researched to help us, I can't believe someone actually spent time writing a paper on this!!

Ernie, I haven't seen a model with continous info without a chest strap. I have Polar heart rate monitors with the chest strap. The watch is EKG accurate - which means you get the same info as if you were hooked up to an EKG. The continuous info is helpful, b/c you can see HR changes from sitting to standing and during exercise. Some models now come with a soft chest strap (elastic with just a piece of plastic in the middle). You get used to the strap quickly - it goes right under your bra and after a while it feels like part of the bra!

Cool website. I looked for an email address where we could contact him, but didn't see one. I also wish he had included DINET in his list of references - he has NDRF, but he should add Dinet too.

Hi, Sorry you're not doing so well. Is the atenolol lowering your BP a lot or just your heart rate? I totally understand the Catch 22 with BBs. I've taken atenolol in low doses for 4 years. I know it lowers my BP and makes me more tired, but I've had a hard time functioning without it. Maybe the DINET main page would have info to help you - more meds you haven't tried or a POTS specialist in your area that has some other ideas. Feel better soon! By the way, you might want to post about the prednisone - it may also be making you feel worse.

I've actually never heard of normetanephrine. You may want to search through old posts, but I don't think it comes up too often. That may be why you didn't recieve a response...