potsgirl

Hey Rich,

It's nice to see you back, and thanks for updating your status for us. I didn't get the nitro during my TTT either, because I had such a major reaction right away. I only lasted about 3 minutes on my test, I can't believe they had you up for an hour! I started having a seizure on the table, so I had to stop.

Are all of these doctors located at the same facility? Are you moving far away? I'm glad you're getting rid of the stairs. That's one of the reasons we moved, too. If you're not moving too far away, it might be worth the travel to get going with this group of doctors.

Take care!

JenG,

1100 calories? Are you kidding? I've always read that anything below 1200 calories can be dangerous to your health. There are some great tools on the Internet where you can plug in your height, weight, and age, gender, that will give you a decent picture of how many calories you need to maintain your desired weight. I don't know your age, but I went to the Mayo calorie calculator (there are many on the Internet) and put in your height, gender, and weight as 110. To maintain that weight, being 'somewhat active' shows about 1500 calories. You can insert the weight you'd like to be, pick your activity level, and it will calculate your calories for you. You can also find BMI charts on the web, although as far as I understand, those are mainly loose guidelines since they vary so much with muscle mass.

I don't think that the tachycardia burns calories like exercise does, otherwise there wouldn't be so many doctors out there who advocate exercise as a way for us to possibly improve our health. My doctors are very adament about trying to be as active as possible. You can PM me if you'd like...

Cheers,

Jana

Hello!

Just wanted to let people know that the Tucson POTS group had their second get-together in January, and that the third one is scheduled for Saturday, February 11th at 3 pm. If you're interested, please PM me with your questions or if you want to join the group. We have our own closed group on Facebook so we can e-mail each other in private (as private as FB can be!). We now have 8 members, and would love others who are interested to join us.

I have the same problem, to a degree. I have to try hard to keep my calories up so that I don't lose more weight. Right now I'm 5' 8" and weigh around 115-118. I know I need to put on some weight, and my doctors complain about me being too thin, but I eat more calories than my nutritionist tells me I need and I still don't gain any weight. I know I'd feel better if I could add another 10 pounds, but I just don't seem to be able to gain it. Do you know how many calories your body needs and do you keep a journal or keep track of the calories you eat? That's helped me. I eat about 1700 calories a day, and sometimes it takes eating some not so healthy stuff to get up there, although I try my best to have the healthiest diet I can have. I just tend to crave carbs when I'm actually hungry.

Perhaps it would help to see a nutritionist?

I just wanted to add to the great post Corina wrote that counseling would probably be very good for not just your husband, but for you, too. Either separately or together. When David and I were going through some of the same type of struggles, we went to a counselor together, and we found that it worked very well for us.

Also, Claire makes some great points, as does Anna. I would think about checking into the legality of the company that fired your husband, if he wants his job back there.

My heart goes out to you. Good luck, and let us know how things go.

My doctor at Mayo and my home cardiologist have always told me that you need to increase your salt intake when you're taking Florinef. And drink lots of water. I always have low BP, and it gets really low when I stand up or stand too long, so my neurologist at Mayo told me I should be eating 8 - 10 grams of salt a day. So far, it really doesn't seem to be doing a while lot for me. I still pass out and get seizures due to my low BP, and I couldn't tolerate either Florinef or Midodrine.

Jangle, you should check with your doctor to verify the right amount of salt for you, but in my opinion, you're on the right track.

Cheers~

Jana

I have such a phobia about the dentist that I refuse to have work done without nitrous oxide. Then they have this newer system of numbing my gums with a syringe and they put the new medication around each tooth I need work on. No shots. I need to have some work done, still, but I'm having the hardest time finding a new dentist that I like and trust. Our old dentist retired...so at least you can be thankful that you have a good dentist! ; - )

Thanks for all of the site information, lemons and Rama. I was a little disappointed that the Mayo link listed under Rama's post was not working, since I go there.

The only thing that really warms me up after being outside in the cold is a hot bath. Then I put on my flannel pajama pants and a cozy long-sleeved tee along with my 'winter' bathrobe. Curling up on the couch with a warm blanket and my cat also helps, as does a hot cup of tea.

And then there are the great doctors, few and far between, who DO understand....

I don't drive on my 'bad' days (which unfortunately are most of my days), especially when I'm feeling 'spacey' and light-headed. I hate that because I like my independence and don't like being house-bound. Right now I can only make appointments and do errands when my fiance is around to drive me. On good days, I'll travel short distances, and I really concentrate on what I'm doing and my surroundings!

Sometimes when I'm moving my head around, especially to the left/right, I get a feeling like my head is full of sand and it's shifting around when I move. Weird...

Claire,

I started off with my illnesses about 5 years ago, when I found out I had dilated cardiomyopathy and bradycardia. I had congestive heat failure, too. A normal ejection fraction is about 50-60%. Mine was 35% when Mayo Clinic did testing on me. Your ejection fraction can be lower than 50% and be okay if you're not having symptoms, but I was having major issues. Some people can have an EF of 20% and feel fine, while others can be at 45% and feel horrible. I received a pacemaker for my bradycardia, and went on Coreg and Coumadin for my heart problems, and I'm now off of both heart medications, although I still get echocardiograms every 6 months to check my heart - thankfully, this caught a blood clot I had in my heart about 9 months ago.

In my opinion, I think it's important that we don't just chalk up heart pain/problems as part of our dysautonomia without checking with a cardiologist first. I had the heart issues before I was diagnosed with autonomic neuropathy, along with other related symptoms.

Are you having headaches along with your eye pain? In my reading about different types of headaches, I've noticed that there are headaches that begin behind the eyes...Just my opinion, but I would be surprised if the pain were occurring because of your pupil size. Do you wear glasses? Perhaps you need them or need a new prescription? That's another common culprit for eye pain.

Hope you feel better soon!

If you want to try something other than a prescription cream, my sig other also has this problem and uses Cetaphil lotion out of the jar. It's really worked for him, better than the Protopic did, and it did so very quickly.

I looked up the "original Life Alert" and found many complaints about how they use their contracts and how expensive it is. I think the least expensive program is $50 per month, but there's an initial fee that is pretty high, and it sounds like you have to sign a three-year contract that is very hard to get out of, even if there would be a death of the member. There were other options listed with several pharmacies, so I'd research these before actually buying/contracting with one.

Maiysa,

I'm sorry you're having such a tough go of it! This will be my ninth month without a period, and I think that if I were to have another one, I'd scream! Hoping you feel better really soon.

((hugs))

Jana

How interesting! Thanks for providing the test's site. It really fit me to a 't', although I can no longer be nearly as active and I can't work in my chosen profession at this time...I really hope I can go back some day, because being basically house-bound is not in my nature!

I was diagnosed with autonomic neuropathy way before I started to get symptoms of small fiber neuropathy. Both were diagnosed at Mayo Clinic, and I think that while autonomic neuropathy/POTS may cause SFN, usually it's not the other way around. I had a skin puncture test that came back positive for SFN about 8 months ago, while I was diagnosed with AN/OI about 4 1/2 years ago.

Is it possible for you to go somewhere like one of the Mayo Clinics? You could go to either the one located in Rochester, MN or Scottsdale, AZ. I'm not sure how much autonomic testing they do at the facility in Florida...There is a list of doctors known for their work with dysautonomia listed on the home page of this site. I think that getting a second opinion would be very beneficial for you.

Hope you feel better soon!

Happy New Year to you, too, Jesse.

Ok, just for fun I wrote to Snoop on his FB page...I'm sure he won't answer, but it's always worth a try. I loved the lyrics you wrote, Claire. You're down wit' it!

kudos to the boys and the mother who raised them!

Very nice, Rama. Relaxing, and smooth.

Hi Lieze,

I've also thought about getting something like life alert before. I am home alone a lot and am a fainter, too. Thanks for posting about this. It reminded me to look into it. I'll let you know what I find out.