potsgirl

I make sure to really hydrate well before I'm going to have blood taken, and then it doesn't seem to bother me too much. Just having one or two vials drawn doesn't seem to effect me negatively, so I guess I'm one of the lucky ones. Now, if I had 6 or more vials drawn, that's a different story...

Cheers,

Jana

I have some of the same symptoms/concerns that Lisa has. I have OI, so I'm supposed to ingest about 10 grams of salt a day and water load, but I also have heart problems and the salt is not good for that. Even with salt, water, and Midodrine, I can't get my BP above 85/70 when standing. Grrrr!

Hope you feel better soon, Alicia and all!

Cheers,

Jana

Wow - Great news! I'm very happy that you're able to go back to work at least part-time, as this is my goal, too. I miss the human contact and structure of working. Keep in touch and let us know how things are going.

Cheers,

Jana

I must second this emotion.

I sometimes feel like cutting off my long hair, but actually, having long wavy hair is pretty easy, once it's washed. I always let it dry on it's own, and never have to handle the heavy (for me) hairdryer! Still, sometimes I wish I had the money to go to the salon and have them wash it once a week!

Cheers,

J

I've never had cranial manipulation, but I sure hope that this next session goes well and that you're feeling better soon.

Cheers,

Jana

Forgot something....Take the time to read about the different forms of dysautonomia on the home pages of this site. Also, there is a lot of info on the Web, just make sure it's a site with a good reputation.

Hi Elena,

Do you know what your results were from your tilt table test? Your BP and pulse rate numbers? Has anyone mentioned Florinef or Midodrine to you?

Good luck!

Jana

Maggie,

How wonderful of you to suggest such a thing! I just may take you up on your offer. I would guess that after the holidays would be the best time to visit?

Cheers,

jana

Why not just give the doctor a call and express your concerns and see what he/she says? I've always been told to only start one new med at a time, so you can tell which effects are from which drug. Also, I would think they would want to do your TTT without these drugs to get a more accurate picture of how your body is responding to the test. I would call and see what your doctor/nurse says.

Good luck!

Jana

I'm not a doctor, but I was under the understanding that if Midodrine was going to work, it should work for you within the first couple of days, if not the first day. Have your BP and pulse gotten better, or stayed the same? I know it helps a lot of people, but unfortunately, it didn't seem to do much for me.

Cheers,

Jana

Angela,

I am continuing to think of you and your family, and am keeping all of you in my prayers. This has to end eventually, and let's hope it's much sooner than later. This has been going on way too long! Take time to take care of yourself, too, and allow others to help you when you need it.

Jana

Maxine~

I just experienced the same thing over this past weekend. I was sure I had a fever, and felt like I had a flu or some illness for sure, but my temp was only 97.5. How odd!

I wish you the best of luck and hope this keeps working for you! Keep us informed...

Cheers,

Jana

Hey Everybody! This is a great project and it's easy to do. I made a quilt square and it only took me about 15 minutes, and I am terribly unartistic (as you can see by the pix of my square). Maggie has been kind enough to send me another square so I can make mine a little better, and is willing to send out squares and do all the work for this great idea. I hope more of you will participate so we can have a nice, finalized project.

Cheers,

Jana

Hmmm. My stomach gets noisy and it grumbles when I need food. Also, like another poster said, sometimes you can feel nauseous when you really are hungry and haven't eaten enough for too long a time period. I definitely would try to go off the olive leaf extract for a week and see if that helps.

Feel better soon~

Jana

Lisa,

What kind of cardiomyopathy do you have and when were you diagnosed? I was diagnosed with dilated cardio and just recently diastolic dysfunction. I'm sorry if I missed it, but what form(s) of dysautonomia do you suffer from?

Cheers,

Jana

I would definitely do one if you have any question at all about your heart function. I was found to have pretty severe bradycardia and atrial fib, and ended up with a pacemaker.

Cheers,

Jana

I would choose the one that makes YOU feel sexy, fun and great. Have a wonderful time!

Cheers,

Jana

Hi Maxine,

I know how scary it can be when your BP is low and you have a narrow pulse pressure. I usually only have about 10-15 (ie: 75/62) points between my systolic and diastolic readings, and it makes you feel pretty nasty. I wish I had some great knowledge to give you, but all I can offer is support, prayers, and positive thoughts that you'll be feeling better soon. And get in to Dr. G!

Cheers,

Jana

Hi Jen,

Happy Halloween to you, too! Here are my answers to your questions:

1. For those of you with symptoms such as acute chest pain or abdominal pain (I too suffer from gastropariesis, my GI doc called it an atonic bowel), how many of you call the doctor when the symptoms get worse or change? I used to keep in close contact but have found that the answer is always the same --yes, me, too. The only time I call anymore is when I'm feeling absolutely horrible, but there never seems to be an answer.

2. How many times do your doctor's say go to the ER? Most of the time.

3. How many of you have given up on the ER? Unless I'm totally overwhelmed by my pain, I usually 'sit it out' and wait to see how I feel in the morning. Then my cardio yells at me, but the ER wouldn't do anything, anyway.

4. What do you recommend? I don't have any recommendations, just confused. If I felt before like I feel now all day everyday I would have immediately gone to the ER, now I'm desensitized knowing that they won't figure anything new out and just discharge me with a ginormous bill. -- Again, I feel the same way. I HATE the ER and they almost always make me stay overnight after I've waited about 10 hours in a room in the ER. It takes a LOT to get me to go to the ER again, even if I do have heart problems - cardiomyopathy and diastolic dysfunction.

Welcome to the forum, Jen!

Cheers,

Jana

I can somewhat relate to the pain and lack of sleep issues. I have a chronic pain issue, and it certainly interferes with my sleep. What a gift a week of good, solid sleep would be! Are you taking any meds for your pain? When mine gets to be too bad, I take .25 mg of Percocet during the day that lasts into the evening. It really does help a lot. Nothing else touches the pain, but the Perc does and is also relaxing.

I'm hoping that answers come quickly for you, and that you can put this period of your life behind you soon. Best wishes & hugs!

Cheers,

Jana

When I'm supine, my HR is 60. It used to go into the 30s and 40s but I got a pacemaker two years ago for the bradycardia. Sitting, it goes a little higher, but not much. If I stand or move around, it shoots up to 110-140, while my BP drops from about 95/65 to around 70/58. I am not on any medication - my BP is too low to take BB or many other drugs.

Cheers,

Jana

Tammy,

I am so glad you posted on this topic. I felt like I was one of a few who got so exhausted from showering and especially doing my hair. A quick shower makes me tired for awhile, but doing my hair utterly fatigues me for hours, if not the whole day. I have long hair that's very thick, and it takes a while for me to wash and condition it, arms above my head. Then it's working out the snarls, putting in some hair lotion, and I've had to just stop drying it as I can't hold the hair dryer up for so long. I take a bath or shower 4 to 5 days a week, but only do my hair twice.

You ladies have some good ideas about washing your hair in the sink, except I think mine would end up in a big tangle, and bending over would make me dizzy/nauseous. Has anyone ever thought of going to a hair salon once a week to get their hair done?

Cheers,

Jana

Wow ~ Thanks for all the replies. It turns out that this woman, who was high recommended and only charges $25./two hours (!!) only had a time slot open for Tuesday afternoons, during my 'rest time'. We decided to have her put us on her 'wait list' for a morning slot. That way she can be here when I'm out doing physical therapy in the morning. Hopefully she'll have a slot open up soon. Thankfully, my SO is fine with doing the vacuuming and the bathtub, so we'll be fine for awhile. I'll keep dusting and Swiffering and doing the laundry every two weeks.

Thanks again!

Cheers,

Jana