Megan

I'm glad you heard good news! Still sending prayers that things stay the same!

Meg

I agree with Rachel. I've found that it's best to use my local cardiologist when I need a medication refill or orders to get a saline IV for dehydration...other than that he isn't good for much. I don't even see him on a regular basis. Probably not healthy, but I talk to Dr. Grubb's office regularly. Also, I'm looking for a new pcp, as my current one is still convinced...after all this time...that the POTS is all in my head.

Meg

I was on Prozac before I was diagnosed with POTS, so my psychiatrist moderated that dose for me...I don't really remember how I got there. I'm thinking of switching to a different SSRI, though, that may help with the POTS more. I've always had a fear of Paxil...I'm not sure why. You've found it helps, though? I'm going to talk to my cardiologist and my psychiatrist, but it would be nice to have some other opinions from people about what helps them.

Meg

Hey Lauren, did your doctor suggest this for you? Just wondering.

Meg

I've never had this happen. I'm on florinef and I sometimes get low blood sugar. I hope you figure things out, though.

Meg

Kind of a side note...you said she drinks a gallon of water a day. I was told, with POTS, not to drink water. Instead, I drink propel (Gatorade's flavored water with electrolytes, sodium, and such) and similar things. I don't know if this would make any difference with the thirst, but it might be worth trying to relieve one tiny symptom.

Meg

I am not taking this medicine and don't believe I have even heard of it, but I wanted to give you a welcome and wish you luck. I hope you find someone who can help you. And as far as needles...I found that as soon as I started to need regular IV's, my fear of needles went away pretty quickly. Granted, I don't have to stick them in myself, but hopefully you'll find the same goes for you.

Meg

I am praying for you and your husband!

Meg

Maybe you could ask for another TTT and suggest revisiting the idea that POTS could be the problem? Also, do you know why your test result was negative? Because (I think) your heart rate has to go up 30 beats per minute for a pots diagnosis. Mine only went up 27, but due to my other symptoms, I was given a POTS diagnosis. It might be interesting to see how close your test was to giving you a diagnosis. Just a thought.

Meg

I definitely do this also!

Meg

I felt awful when I was on ADD meds. I wasn't on ritalin, but the meds I tried made me feel so revved up I couldn't stand it. I now take cerefolin and fish oil supplements. Mestinon helps me with brain fog/concentration, also. I'm not sure what your biggest reason for being on the med is, but maybe those could be an option if you decide to stop taking ritalin.

Meg

I don't have a lot of tips for flying, except be sure to stay hydrated. Compression hose are also good.

Beverly can be a big help. She listens and a lot of the time knows what Dr. Grubb would do in a situation. She should at least be able to get you started on a combination of meds so that maybe dr grubb can help tweak it when you see him. good luck!

Meg

Honestly, I haven't found a good "fix" for brain fog. I usually end up crying and taking a nap because I'm so frustrated.

Do you notice a difference after the salt tablets?

Meg

I, too, have TMJ. I figure part of it is the hypermobility syndrome. The jaw is a joint, so it must just be like the way my elbows go backwards. I grind my teeth and have to crack my jaw to release tension. I can relate to the neck pain and headaches, too.

Meg

happy birthday!

Meg

I just wanted to add that I've had this problem also. The route my mom and I have taken is just to call and leave messages until they do respond.

Nina-I will take your advice and ask at my next appointment to be sure messages are actually being passed on!

Meg

Congrats!

I have difficulties with new buildings in general, so I agree that that could be the problem. I hope you figure it out or feel better soon!

Meg

I have had this issue before. Actually, sometimes I lose control of my legs completely and I have to stay in bed for a few hours until feeling and movement come back. I've always just attributed it to POTS.

Meg

As far as brain fog...I can't tolerate ADHD medications, so I take Cerefolin (folic acid) and omega 3's. They both help tremendously with my brain fog and adhd, and I buy omega 3's over the counter at wal-mart, so they're cheap.

Meg

The fainting for attention was definitely one of my favorite ones... does anyone actually enjoy that kind of attention?!

Just start low and add SLOWLY. I find it to be amazingly helpful, but at one point I did end up on a dose that was too high and my bp skyrocketed. Now I know that I need to start at a really low dose and monitor myself so that doesn't happen. I'm on depo, not pills, but they are safe together. (that time of month is awful for me also)

Meg

As far as actual neck pain, I find the chiropractor helps a LOT. As far as the symptoms you said your daughter has along with the pain, I also take meclizine. It's amazingly helpful. I only take it when I need it, and usually half a pill, but it gets rid of dizziness fairly quickly, and I don't have any funky side effects.

Meg

Dr. Grubb diagnosed me with hypermobility syndrome. Is this the same thing or something different? I was under the impression that my flimsy veins and joints that make other people wince because it looks painful was just a POTS thing.

Meg

I'm sure there have been topics posted about this before, but in all honesty searching just sounds exhausting to me right now. My boyfriend and I were talking today about me, and basically about the future. He's worried about life plans not working out because of me being sick. So here's the problem, in a not so short summary... He's very supportive of me and my disorder and understands that it can cause problems with everyday tasks. He's really understanding when it's obvious, aka visible, that I feel like crap. While he knows that symptoms don't always show themselves, he finds it harder to accept that sometimes I honestly can't get out of bed even when I look fine. He was raised in a "suck it up" kind of way; loving but tough love, too. I don't know if this has anything to do with it, but he feels that sometimes I may be exaggerating or using feeling a little crappy as an excuse to stay in bed. He tries to convince himself this isn't the case but he's a very logically based kind of guy, and if he can't see it he has a hard time accepting it. So my question is, does anyone have any tips on things he could read or ways I could explain to him why sometimes even when I look fine I'm definitely not?

Meg