Laura

Hey Nina, You absolutely can get naproxen in suppository form. I am not sure if it is over the counter in the USA, but you can call your apothecary and find out. It might be a very good option for you. So sorry that you have yet another thing to add to your plate! Feel better. Laura

Hi, I am late reading this, but wanted to tell you that I have similar symptoms at times. It seems to happen when I am having very bad flare-ups with the pots. What I experience is sudden extreme nausea, and dizziness and feel absolutley terrible. Then I get cold sweats and I have big waves of feeling like I am going to lose bowel and bladder control. I have had a few small accidents at times. It is an absolutley horrible feeling. I don't have NCS or low bp problems - mine is usually high- so I can't contribute it to that. I have talked to my doctor about it and can only guess that it is a result of orthostatic stress. It is such a horrid feeling. I'm not sure if this is the same or similar to what you've been experiencing but if it helps in any way, I thought I should speak up. I sure hope that things settle for you. Laura

Vanessa, I am so glad for you! You have such a struggle, I hope they find good solutions for you.

Traci, my left leg swells up once in a while. Just the calf. Not sure if this is quite the same as what you've been having but I thought I'd mention it! Laura

Traci, I am sorry you've been having such a rough time with everything. It's awful to have new symptoms happening that are so scarry. If this doesn't resolve you should give him a call just to be sure. It makes you feel bad having to call, but you need to know that you are OK. Your doctor needs to be aware of this regardless, even if he has nothing to offer right now. He needs to be aware incase this should progress to something more. I hope you are ok. Let us know, okay? Laura

Carmen, Sure makes you wonder how some people ever make it out of school. I am most upset that no ECG was performed - are you seeing your regular cardio for this? That should have been the first thing looked at given the fact that you've just recently had your pacer changed. I hope you are managing ok and a quick recovery for your little one! Watch that you don't also come down with something. Take care. Laura

Hi Maggs, I am currently seeing a doctor (cardiologist) who specializes in Neurocardiogenic syncope, but has some knowledge of POTS. I have been trialing different medications to try to see if anything would work and have not had any luck. This week he has told me that we are out of options and there is nothing more we can try. I wish I could help in that way for you! I understand why they are working with a diuretic for you, the increased fluid in your case would likely elevate your BP further and is probably not such a good option. Maybe you could print off some of the info given in the main site area and bring that to your doctor to ask if they think this could apply to your situation? I certainly know how difficult it can be to get a good diagnosis and appropriate treatment when you are in a very small town. Sometimes, if you have an open minded doctor, the best thing you can do is research and bring information to them to ask about. The fatigue is one of the worst things for me to try and cope with. I haven't found a good solution yet, but I'm still looking! I haven't been able to work since I developed POTs two years ago. If there is anything you think I might be able to help you with, or if you have any questions, feel free to send me a PM and I will do my best! Ask lots of questions......I know how hard it is to get information sometimes! Laura

Hi Maggs, Welcome to the site! I'm having similar problems but can't offer much help as I haven't found anything that works for me as yet. Do you have heartrate issues as well? Laura

Oh, Carmen. How frustrating and irritating is that. Sure takes away some of the confidence you put in the doctors when they miss something signifigant like this. Are they going to watch if the betablockers control the a-fib before looking into the need for a different pacer? I am glad that you are having some positive effects from the new one. Having some better days can mean so much! Take care. Laura

Lauren, I'm so sorry that Vanderbuilt wasn't able to offer you more for treatment. How very dissapointing. You have so many changes to try to adjust to as well right now - a big move, new school, and trying to figure out and work with your new limitations- things must be very difficult. You have some major life changes to adjust to. It will take you some time. But you will get there and things will improve. I had a horrible time when I first developed Pots. I was completely where you are now. And I absolutely still am there some days. But now, I have alot of days where I feel "OK" where I am at. I'm still not happy about it, but I can accept things more and feel more content now. So far, no meds have worked for me in the least and I haven't been able to get much relief. That makes me feel very angry and frustrated and hopeless at times. But I push on because there really isn't anything else to do, and eventually things start to settle again and I feel a bit more accepting of how things are. I hope this will happen for you as well. All you can do is work your way through it. You are a strong and lovely person and I've no doubt that life will improve for you, even if your health stays where it is. Most of all, be sure to talk lots about things and get things out. Sometimes when you can't change things, talking and working things through can help alot. You've got all of us here to help with that part! Laura

You can end up feeling very thirsty by drinking too much water as well. If you drink excessively, you will urinate more and more and won't retain the fluid you've taken in. Just something to keep in mind!

Hi Corina! I'm so glad that you've posted - I had been wondering how you were doing as you've not been around as much lately! I just wanted to say hi, and that I was thinking of you and sending you good thoughts on your rehab situation. Laura

Hi Roselover, sending you big hugs. I hope you feel better soon. Laura

Perse, I'm so sorry that you've crashed. It's almost worse to feel so well for a while and be so hopeful, and then fall back into a bad stage. If you've just started your cileste pills, sometimes it can take 3 or so months for it to really stop your flow. It can take that long for your body to adjust to the hormone and you may have break-thru for a while. Yep, and with that you'll feel crummy. Hopefully, after the adjustment time, you will have some more stable results in terms of symptom control. Hang in there as best you can. Laura

I was so glad to read this, Melissa! I hope this will help make your days less of a struggle!!

This is really neat! What a fun experience for everyone. I really enjoyed reading about this and I'll be on the look out for this movie!

Wow! what a great question. That's something that had never occured to me. Thank-you for bringing this up!

Hi! My doctor just told me about that on my last visit. He said they've found that you have to drink the full ammount very quickly - it doesn't seem to have effect if you simply drink alot of water spaced through the day. You must drink about 1/2 a liter (500ml) quickly to feel the benefit, and do this throughout the day. He said it affects the receptors that tell your body to retain the fluid. Interesting! Laura

Carmen, that is great news!! I am so happy to hear that you are starting to feel better.

Belinda, I'm glad you got through this OK. Get lots of good rest.

Emily, Has your family brought Asher in to see the vet? My brother's dog had similar problems with anxiety and would get terribly worked up. They took her in to the vet and she was prescribed medication - I think it was ativan. They gave it to her regularily for the first while, then just when she got anxious and it seemed to break the cycle for her. She improved alot and eventually only needed it occasionally if there was something very disruptive happening in the house or whatever. I really feel terrible for you and Asher having to go through this. He must be very attached to you and it would be good if there was something to help him settle. I hope a solution will come for you. Laura

Hi Susan, welcome! I have a higher bp with tachycardia and was on midodrine for a while. It actually seemed to help regulate my bp - I get lows and spikes. Laura

Hi Emily, You might want to do a google search of Pyuria for a bit more information. There are a few different things that can cause this. Are your wbc levels very high? This can also be caused by some meds... but I'm not sure which ones. It might say somewhere on the google search. Hope this is of some help! Laura

Happy Birthday to you Amy! Hope you had a fun day!!

Hi Mary, Good luck today with your CT tests. I will be thinking of you and sending you positive thoughts. Hang in there till Friday when you'll get some more definite answers. What a scary thing to be going through. Hugs to you. Laura