potsgirl

I love to write, also. Are you a list-maker? I'm a perfectionist/OCD (a little) and I live by my lists. I always write out my questions for any big doctor visit starting a couple of days before my visit. Just a suggestion...Vanderbilt is a terrific place to go. Are you still working?

I had terrible reactions to the Florinef and had to stop taking it. It gave me headaches, nausea, and I also had problems with my sleep. I just felt worse taking it than I did without it. I know it can take some time to adjust to new meds, though, so perhaps you need to give the med another week or two to see if it gets better. You might want to call your doctor and see it he/she wants you to start off on 1/2 dose. Many of us here don't tolerate meds well and have to start on tiny doses. Hope this helps, Jana

Welcome to the Forum, Shoe, Wow...That was a long intro, but interesting. I am unaware of the urinary issues, but some of the other problems you list I'm certainly familiar with...night sweats, utter fatigue, et'c. I think the first thing to do is to have a Tilt Table Test done, by someone who really understands our disease, so you can pinpoint what's going on in your individual case. The only way to get the best and most appropriate treatment is to figure out just what is going on with YOUR body. There are some experts listed here on the Dinet site, or many people can tell you good doctors to see if there aren't any in your area. Use this Forum for help, guidance and support, as you'll find it in abundance here. You are not alone, and there are many who care. Best wishes and good luck! Jana

Yay! What a wonderful story of accomplishment. Make sure you add it to the list of 'positives' that's on another current thread. I'll check it out! Jana

Suzy, I'm sorry that you're suffering from a new and scary-sounding condition. Please get yourself to a doctor and get this looked at as soon as possible. Take care of yourself...I'm worried about you. Sending you lots of positive energy and thoughts~ Jana

I've had a lot of success in getting things paid for by my insurance. My doctor wrote a prescription for 2 pairs of compression hose, and a wheelchair, and my insurance paid every penny. I didn't think my insurance was that great, but as long as you have a prescription and the doctor documents why you need it, insurance should pay all, or at least most of it. Hope this helps! Jana

Kudos to you for doing the right thing. You are a brave, strong woman, and we need more of us around to speak up when these abominations occur. I'm sure there are many, many people on the Forum and elsewhere that support you wholeheartedly. So sorry you had to go through this...take advantage of the counseling if need be. You don't want to be scared of all new doctors. Again, I'm so proud of you! Jana

Just to make things a little bit more confusing, I have two specialists that have me diagnosed either with POTS or with severe orthostatic hypotension. My cardio doctor says I have POTS, although on the TTT my heart rate went from 45 (they shut my pacemaker off, it's usually 60) to 125 when upright; while my Mayo Clinic neurologist said that clinically I have the hypotension because my BP falls from around 95/60 to 65/45-50 when upright. He insists that a drop of blood pressure, more than a few points or so, puts POTS as a diagnosis out. The determining factor all lies in the heart rate going 30 bpm or more over average when standing. Anyway, as Ramakentesh wrote, they're all dysautonomia issues, and treatment is similar, although those of us with too low of BPs can't take beta blockers for the most part since it lowers our BP. Jana

Interesting. If I work out to hard, I suffer from repercussions, also. I'll have to try your solution. Thanks for posting. Jana

Yay! We can all use good news and celebrate in the triumphs of others! Roller derby, huh? That's terrific. Get out there and have some fun. Best, Jana

Yes, this is based on serum creatinine and eGFR, and I think that my nephrologist determined it was due to blood/oxygen insufficiencies due to my past history of severe orthostatic intolerance. Does this help at all? I'd have to get out my tests (buried somewhere) but I know that my GFR in particular was really out of whack. Jana

Congratulations!! I myself am on LTD, waiting to go to court for Federal Disability on June 24th. Now you can relax for awhile again! Blessings, Jana

I have kidney issues due to low blood flow, and also lost my gallbladder due to this. I also have a lot of ischemic lesions on my brain due to lack of blood flow/oxygen. I know I wrote this on another thread, but my kidneys go in and out of stage 3 kidney disease. I go to a nephrologist, and we re-test every 3-6 months to see if it stays at a dangerous level or goes too low. Do you have lower back pain? Problems with urination? I'm currently in a 'wait and watch' situation. It'll be interesting to see what a nephrologist says. Good thoughts and energy your way... Jana

I'll second Nina on her recommendation, but I also want to express my support for you during this time. I had the same thing happen with a chiropractor, so I know a little bit about how you're feeling. The people you think you can trust the most can do the most horrendous things. I'm sorry that this happened to you, and hope you find a lot of support. Good luck! Jana

Alicia, I think I'm just going to wait awhile until I try acupuncture...perhaps I need to stick to pedicures!

Thanks...I'm also heat intolerant, and I should have known better and told them to turn the heat off on the bed. It just felt so good at the time. I think I'll wait awhile before attempting acupuncture, now. j

EarthMother, I'm almost in tears as I write this message to you, and it has nothing to do with massages or acupuncture. I have been suffering for the past 4-5 months with a lot of burning, itching and pain in my genital region. No one has been able to figure it out yet. When I saw that you had 'vulvodynia', I looked it up, and I really think that's what I have! Thank God that you wrote that...If you don't mind, can we PM or email about this condition? I'd love to know what it's been like for you and what they've tried. Thank you! Jana

I'm sure you're right. I'm also very heat intolerant, and should have known to have her turn the heated bed to 'off'. But it felt so good at the time...

Hi All~ I finally got around to using my son's Mother's Day gift from 2008, and it's the first massage I've gotten since I've been sick. I thought it would make me feel better, but it definitely made me feel worse! It was a heated bed, and I had an hour's worth of Swedish massage. Has anyone else had this reaction? How about with acupuncture? I was going to try acupuncture, since I can't tolerate Florinef or Midodrine, but now I'm worried it might make me feel worse, too. Input, please... Thanks, Jana

I can't tolerate either Florinef or Midodrine, and my doctor still wants me to up my salt intake a lot. I just have to drink lots and lots of water to help flush it out.

Actually, it's probably a combination of all of the above, and then some. Also, you said that they think you have POTS and that's how they're treating you. Can you get a tilt table test done and verify that's really what's wrong with you and they're giving you the right amount and type of treatment? I think that should be your first step - a clear diagnosis. Then you can start to uncover what's causing what...Take care, and hopefully you can get some answers. Peace, Jana

Hi Firewatcher, Yes, my creatinine/GFR do go up and down. I had some testing done (ultrasound) and my kidneys are rather malformed. I also go to a nephrologist every couple of months to re-check my numbers. It's been down again for the last 6 months, so they're doing 'watchful waiting' to see what happens. If it gets too low, I'll have to start treating it.

Shimoda, Take a deep breath and try to calm down. I have these same things happen to me, too, and I deal with them by making sure I keep lists of everything I have to do, errands to run, daily chores around the house, everything. Make as many lists as you need. Use them during these time periods. Know that you're not alone. I wish you peace and positive energy, jana

Welcome to the Forum! I have a close friend that takes Wellbutrin, and it made him feel wound up, and noises and crowds bothered him more. I take Paxil, which seems to help me with my anxiety, and also calms me down around a lot of stimulation. Do you have any anxiety? Most of us do here. You could certainly try Wellbutrin, or Prozac, which is also supposed to give you energy. Every drug works differently on each individual, so you just have to try them. Most of us are also really med-sensitive, so you may want to try taking 1/2 of the smallest dose to start. Hope this helps, and know you're among many people just like you! Peace, jana

I also have bradycardia, but I have it whether I'm standing or sitting. I have a history of dilated cardiomyopathy which was diagnosed 3 years ago, and due to the bradycardia, had a pacemaker put in. I was diagnosed with severe orthostatic hypotension about 2 years ago. Do you have a cardiologist? You may want to go and have some cardiac tests done. Good luck to you!