potsgirl

Ernie,

I, too, am waiting for results of genetic testing for a possible diagnosis of amyloidosis. I'm so happy you have the opportunity to explore your family history - I'm adopted and so don't have that info. Good luck to you~

peace,

potsgirl

Mary,

I'm so sorry to hear about your troubles. Just a couple of tricks my doc at Mayo recommended because I'm a fainter, too. Raise your headboard 4-6 inches so that you sleep at a slant. Take your Midodrine before getting out of bed in the morning. You need up to 10 GRAMS of salt a day - way more than I had been taking! The more lower leg exercises you can do, the better. If you stand up and feel like you're going to faint, cross your legs hard or bend over and put your hands on you knees and grasp hard. How much Mido are you on? And drink plenty of electrolytes (Gatorade, etc).

I hope that perhaps one of these suggestions are new, and that they help you...

Peace,

Jana

Toni,

What about your BP? What does it do when you're supine, sitting up, and standing up at 1 and 5 minutes? That's important, too...

Peace,

potsgirl

Maxine~

Good luck with your fundraiser, and dwell on as many good memories as you can. I really liked the graphics...here's to a big success!

Peace,

potgirl

Hola Jan,

I recently saw an ANS specialist at Mayo Clinic, who told me to take approximately 10 GRAMS of salt a day! I couldn't believe it...I am usually hypotensive, however, so I think 4-5 grams might work for you. I'd try to increase it very slowly, and see where you feel the best. Also, keep good track of your BP, I've found that to be the best indicator.

Peace,

potsgirl

I smoked from about the age of 20-30, so I guess I would say I'm skeptical! Be interesting to see what others have to say...

Peace,

Potsgirl

Alicia,

I have had to stop going to any social function that occurs in the evening. I can do dinner as late as 5:30, but need to be home by 7:00 pm or so, or else I get absolutely exhausted. I go to bed at 7:30 - 8:00, read, and am asleep by 8:30 or 9:00. Of course then I'm awake at 5:30 or 6:00 in the morning. Ugh. I try to do lunches and other social events during the day, but I really miss going to plays and other things that occur in the evening! It's really cut down on my social life...That, and not knowing day-by-day if I'll have the energy to even make it to lunch...I hope you're feeling much better today~

Peace,

potsgirl

Toni,

I'm like you...I seem to get more 'female problems' now, but I usually end up with bacterial vaginosis and pap smears that need to be repeated. I try to always wear cotton underwear and not let myself get sweaty in my vaginal area (ie, after exercise). I hope this helps a little!

Peace,

potsgirl

I am on both Paxil and Klonopin, and neither of them seem to have increased my migraines. I take low doses, since I'm intolerant of meds like most of us. I've tried other anti-depressants, but Paxil is the only one that works for me. Klonopin also helps you sleep, which is a blessing for me. I hope you find the right drug for you - work with your doctor closely, and you may need to try a couple of different drugs to get the best result for you.

Best Wishes,

potsgirl

Jenwic,

Last time I had a conditioning treatment in the salon and they put me under a dryer for 20 minutes, I got such a horrible migraine from the heat on the back of my head I had to take several breaks...Weird.

Potsgirl

Suzy,

Great! It was nice to hear from you. Now I get to sound ignorant. I'm pretty new to the Forum, so I'm not sure what PM means (I assume it means personal email, but how do I do that?)

Potsgirl

Angela,

I'm so sorry. I completely understand what you're going through. 2 1/2 years ago I had acquired my dream job in archaeology, and 1 1/2 years ago I lost it due to this illness. I couldn't make it through a full week anymore. I, too, understood why it had to happen, but it took away a big part of my identity and self-worth. I had gone back to school to get my master's degree later in life (40 years old) and boy, did losing that job sting, especially since I used to be very active.

My sympathies, and I hope that you can feel good about yourself much more quickly that I could. And for hope...I'm now looking for another job. It IS possible.

My very best,

Potsgirl

Hello Arizonans,

I live in Tucson and have noticed that other members are from the Arizona area also. I'm interested in getting a support group together, and was wondering if anyone else in the area could use a friend to have coffee/tea and discussions...I hope to hear from you!

Thanks,

potsgirl

Firewatcher,

Thanks for expanding my initial exercise poll. You've got some good questions that are really interesting to read. I had to slowly work myself back to being able to complete 30 minutes of cardio, and I've recently added strength training for my legs and abs to help stop pooling in my lower legs.

Yogini- I agree with you in that in have to take it easy enough to not make your symptoms worse. I go through 'troughs' where I feel really horrible, and then I'm lucky to even make it to the gym. But I was prescribed exercise by my Mayo Clinic doc, so I try to at least do something 3-4 days a week.

It's great hearing from everyone about their exercise abilities!

Potsgirl

Rachel,

I'm pretty hypotensive, and after being on the Midodrine for a week, my blood pressure before getting out of bed is around 85/60 with pulse 60, and when I stand, it falls to 65-75/55-65 and pulse between 110 to 140. It hasn't seemed to raise my BP at all, plus I feel nauseated and get migraines. How long did it take until your sister had to go off of it? Did the Midodrine work right away for you, or did it take a couple of weeks? I cannot tolerate Florinef at all, so I'm hoping I can make the Midodrine work....

Thanks so much for your help,

Potsgirl

Hi all,

Just wondering if anyone else has problems taking their Midodrine? It seems to make me feel fluish, with a nasty headache, and I'm only on 2.5 grams 3x a day. Anyone else have this intolerance?

Thanks,

potsgirl

Thanks for the info. I had no idea I could take sleep meds to help me relax. I'll go ahead and set one up...

Thanks again!

potsgirl

Thanks for the input!

mkoven, firewatcher, fallon holt, and jump: My neurologist at the Mayo Clinic also prescribed exercise for me, so I try to make it as many days during the week as I can. Some days I can definitely do more than others, but I think the exercise is more beneficial than not. I believe in the long run it helps more than it hurts. I also used to be an athlete, so it's frustrating that I can't perform at my old 'level', but at least I can still do something. My pulse gets high pretty quickly, and I am pretty tired otherwords, too.

Firewatcher - This is my first poll, and it looked like we could only do 3 questions? You're right, your question would be a valuable addition. Do you know how to add a fourth question?

Thanks & peace,

potsgirl

mkoven,

Thanks a lot for your input. I find this subject very interesting, and how encouraging that you've been able to increase your exercise. I try to go 4 times a week, 30 -40 minutes cardio, and strength train legs and abs (this helps to stop blood from pooling, I've heard) 2 -3 times a week. Keep up the good work!

My best,

potsgirl

Please take a few seconds to fill out this poll on your activity level. I think it would be informative to see how much exercise we get, even with a lot of us suffering from exercise intolerance.

Thanks!

potsgirl

Hi All,

My big question for you all is: How in the world can you fall asleep for the study? I can't fall asleep easily when the room is dark, it's cool, I have 'white noise', et'c. I'd love to have a study done, but don't think I could fall asleep!

Anyone?

Thanks, potsgirl

Me, too....Before I get out of bed and every 4 hours after.

potsgirl

Hello All~

Just wanted to pass along a little information that I learned from my recent visit to Mayo with my autonomic nervous system specialist, Dr. Goodman. I thought I was eating a lot of salt, but he told me I should have 10 grams a day - nowhere near what I've been ingesting. Also, along with a lot of water (because dehydration obviously makes us worse), lifting the head of your bed 4 inches will help with getting up in the morning. This doesn't work with 2 pillows (what I had been doing), the actual headboard needs to be raised, so your body is at slant.

Dr. Goodman also believes that taking Midodrine first thing in the morning, before you get out of bed, helps, and to limit caffeine to 2 cups in the morning, and then having no more stimulants the rest of the day. Most importantly is to not get deconditioned, and to exercise as much as possible, especially your lower body and abs, so the blood can't pool as much in your lower extremities. Strength workouts if possible. I know this is hard when we're feeling so yucky, but in the long run it should help us function better. I know keeping a workout schedule has helped me, even though I'm exhausted afterwards....If I do one thing during my day, it's to get some physical activity in.

Is anyone else out there able to exercise with any frequency? What are your thoughts on exercise? I used to be able to do much more, but I still work out 4 days a week or so.

Thanks,

potsgirl

Hello All~

I just came back from appointments/tests with the autonomic nervous system tests at Mayo, Rochester. Dr. Goodman told me that the more we can exercise, especially our lower bodies and abs, the better we'll feel in the long run. He told me not to go to a wheelchair unless absolutely necessary...ie- if you're passing out every time you get up. The bike or walking is good, and strength training your legs and abs are a great way to stop the blood from pooling in our legs. So, he thought it was better to push ourselves to do as much physical activity as possible, especially strength training. I know it wears me out, but some exercise is definitely better than none!

Thanks,

potsgirl

Ruekat,

I think I may have responded to a previous email from you, but I've taken Paxil (10-15 mg) for about 10 years now, and have had good success with it. Please don't worry too much, there's an SSRI out there that should work for you. Just take it slow, and start with a slow dose and build yourself up. You'll know when you've hit your limit. Please feel free to write me anytime about it. I'd be happy to be one of your supports.

Take care,

potsgirl