potsgirl

That's odd. When I went to Mayo I stayed on all of my meds, except if I had a test that required me to go off certain ones for a day or two. Do you know what tests they have planned for you when you get there? Are you seeing a cardio, neuro, someone else?

Jana

Stacie,

I'm glad to hear that everything worked out for you and that you can go ahead with the procedure. Please let us know how it goes!

Cheers,

Jana

Yes, I sometimes feel things like this, especially the more conscious I am of my breathing or other bodily reactions. Do you ever feel hyper or anxious during these times?

Suzy,

It's so good to hear from you again. I'm sending you positive energy and thought/prayers that you will get through this difficult time soon. A little levity, though, I just want through something similar with my dentist/cardio about a bad tooth that I have...I have to get a crown for a back left molar, and my appointment is also on the 29th! But I went through all the phone calls too, and finally got the right antibiotic. I think you probably should take an appropriate antibiotic before your dental work. I know it's so hard, ridiculously hard just to try and do something as simple as get the right antibiotic! It can really beat you down. But don't give up, I know you can get through it and be done with that freaking tooth once and for all!

Let us know how you do, and many hugs,

Jana

I asked my doctor what she recommended for me in terms of stocking weight, and since it was a prescription, I order two pairs and got them for free. I also had a prescription for my wheelchair and my insurance company paid for all of it. Make sure you check with insurance, because they may well pay part or all of your hose and other prescribed items.

Cheers,

Jana

Oh Ana, I'm sorry. I thought I had heard that Mirena did NOT have hormones. My apologies.

Jana

I have what I think is a pretty good system. I see a cardio who knows POTS and deals with my heart problems/pacemaker; I see a neurologist about my migraines, weakness on one side of my body, and seizures; and I see a terrific PCP who is more than willing to learn and give me the referrals I need. I'm very fortunate to have my current list of workable doctors that I like and I make sure they all have the same information from tests or office visits in their files.

Doctor to add to your list if you're in or around Arizona:

Dr. Gordon Ewy / Connie Doner, FNP

Sarver Heart Center

University Medical Center

Tucson

Dr. Ewy is the head of the heart center, and is the cardiologist who developed the new form of CPR. He's worked with numerous cases of POTS patients, and his FNP, Connie, is also very good. Not quite a Mayo set-up, but close.

Cheers,

Jana

No, I've never heard of those. If they're working for you, great. Are they FDA approved? I've been on birth control pills for 20-some years now, and my PCP would like me to stay on them until menopause hits since I have osteoporosis of the spine. They have the lowest dose of estrogen I can take, since I have heart disease. If these drugs end up not working for you, another hormone-free option is Mirena.

Good luck,

Jana

I get very blue feet and sometimes hands (if I wasn't such an Amazon, people would think I'm a Smurf), and am always pale. It contrasts nicely with the dark circles under my eyes from never getting a good night's sleep!

Best,

Jana

I haven't taken any country to country flights since I've been diagnosed, but I travel fairly well on 4-6 hour flights. I keep very hydrated, try to move around as much as possible, and rest up the day or two before. I'm very fatigued once I get to my destination, and usually go right to bed. The next day I feel better, but still very tired. My family is scattered around the country, and my mom can't travel, so I refuse to give up seeing my family...I just can't go very often and I usually travel with someone. Besides, the change of scenery does wonders for my emotional needs.

When are you presenting in October? I would love to come...

Cheers,

Jana

How interesting! I'm an anthropologist/archaeologist, so Darwin's of great interest to me. Thanks so much for posting this.

Cheers,

Jana

I've struggled with severe constipation for years, when some times I couldn't go for 7 - 8 days in a row. After heading to the hospital one too many times, one of the ER docs told me to try Senobkot. It's natural and lets you go easily. I've used one in the am and again in the pm for the last 3 years, and have had an 'easy' BM 95% of the time, on a daily. It's been a lifesaver, especially since I couldn't tolerate the other meds for IBS, like Amitiza. You can find the generic, Senna, at Target stores for about $4.00 per 100.

Hope this helps,

Jana

I'm kind of in-between. I can usually get out a couple times a week, for perhaps an hour or so. I try to walk for 1/2 hour 3-4 times a week, just taking it easy. It's a priority to me, so that means it's usually the one thing I get out to do that day. The rest of the day I have to rest a couple of hours after lunch, and then hang out in my recliner and read, watch tv, or be on the computer. If I want to try to eat lunch out, that's the only thing I plan that day. Two days a week I call "stay at home" days, where I do nothing but rest, especially if I know I have a big day coming up.

I don't like taking many drugs, and I'm very intolerant of them, but if they would help improve my quality of life, I would consider using them. Unfortunately, I can't tolerate Florinef or Midodrine. I do take an SSRI and Klonopin, though, and these do help. I agree with many of the others who have responded to, that every doctor I've had has said that the more you can sit up and not become deconditioned, the better you'll feel. I like the idea of propping yourself up with pillows as a start.

Let us know what you try and what works for you. I hope you can start getting up and out slowly....A wheelchair works for me, too.

Cheers,

Jana

Congratulations, Brye! Way to work with the meds to get to a better place. Keep going...

Cheers,

Jana

Hi Alicia~

Yes, I do feel that my Meniere's is worse with my POTS. I'm not sure what to think about your vision issues, because I have them too, including nystagmus. I'm only taking Dramamine or Meclizine currently for the symptoms. I don't get it too often, but when I do have an attack, there's isn't really a position that makes it better. If I lay very still and don't move my head, sometimes that helps.

Best,

Jana

Futurehope,

You've summed up my feelings and frustrations perfectly. I worry that so many posters are too quick to assign everything to POTS that they don't get things checked out that they should. Sure, there are many things that

can be attributed to POTS, but we may also simply suffer from other maladies that may be completely unrelated and need to be treated on their own. I know my dizziness, fainting, loss of balance/coordination, brain fog,

migraines, intolerance to heat and cold, and poor sleeping are all usually POTS characteristics. BUT, if I have a change in my symptoms or something new, I get it checked out, just like I would if I didn't have POTS.

Best,

Jana

I've struggled for years trying to find a pillow that doesn't set off my head/neck pain. I got a Memory Foam pillow for back sleepers, so there's a larger swell at the bottom, a smooth area for your head, and then a smaller swell at the top. I love it, and the Macy's near me had it on sale recently for $15 down from $60.

Best,

Jana

Ladies,

Due to a member of this Forum, I found out that my constant aching and burning around my vaginal opening is actually due to a condition called 'vulvodynia'. I had so many tests run for infections and none of them would ever come back positive. I didn't think I had an STD, since I've been with my fiance for 5 years, but it was driving me crazy that I had these nasty symptoms but no cause. You may want to look up vulvodynia on webmd.com or do a general search for it online. When I went to see a gyn specialist, it did turn out that it's what I have....Just an idea.

Best,

Jana

Another reason it could be lasting so long is if it's tied to food poisoning. I had a nasty case of it and my diarrhea lasted 5 or 6 days. I had to have a colonoscopy done...Can you relate your symptoms to a possible food culprit?

Thanks again for all of your kind thoughts and words. This Forum is such a support!

Hugs,

Jana

This topic has come up in the recent past a couple of times, so you should be able to search for it by 'swine flu'. It seems that some of us get colds/flu more easily and have a tougher time with it than others. Some say they hardly ever catch anything since they've been diagnosed, so it's up in the air. Of course you'd want to use common sense and do all of the hand washing and other healthy habits to keep yourself from getting run down and possibly sick.

Best,

Jana

I agree with Flop. I'm not sure what the laws are in Germany, but in the US federal buildings must have a way for disabled people to reach various floors/rooms via an elevator or ramp for those who cannot do stairs. I used a wheelchair when I had to go to court recently, and was not required to stand. Make sure those who are in charge of your testimony know what your needs are, and that they are met or you cannot be a witness. I'm sure that there are ways they can work out a reasonable plan to make you as comfortable as possible, and drink lots of water. You don't say whether you really want to testify or not, but since you are very concerned about your health in this situation, I'm sure your doctor could also write a note underlying your condition and if you can/cannot tolerate the witnessing.

Good luck and let us know how it goes!

Jana

I am very sorry that you're having this nasty problem. I know you don't think you're dehydrated, but when you have a bad case of diarrhea, it can deplete your electrolytes and hydration to dangerous levels. I don't think your anti-depressant could be causing this, but you may have a stomach bug or perhaps food poisoning. Either way, it sounds like you need to see a doctor, soon. Keep drinking lots of water, and try taking an anti-diarrheal again. Sometimes it takes a couple of doses to work. Please let us know what you find out, and get better soon!

Best,

Jana

Thanks for the advice! I do have a special pillow to sit on as I suffer from vulvodynia as well (chronic pain around the vaginal opening). Unfortunately, that stops me from moving around in my chair, but I'll try getting up and moving around the room more often. I'm a fidgeter, too, just not when I'm seated since the chronic condition kicked in. I'll also try my PCP.

Thanks!

Jana

David, my boyfriend, got through his prostate cancer surgery successfully yesterday. His prostate cancer was more aggressive than they thought, so they had to take his nerves and lymph nodes, too. We'll know in about a week if the lymph nodes contain any cancer. It was a long day - 9 hours - and I'm truly exhausted today, but he'll be coming home in the early afternoon. Thanks to all of you who said prayers and kept us in your thoughts.

Please keep thinking energetic thoughts so I can make it through this care-taking time period successfully.

Thanks again,

Jana