kschoon777@yahoo.com

I have PAF. My blood pressure drops drastically when I stand, but my HR always stays about the same.

I'm using the short acting subQ injection. I take 3 shots a day and they last about 3 hours. The research study I was in at Vanderbilt was the study of different drugs including placebo and water. They did a sweat test, monitored by blood pressure and hr and lots of other tests. I have Pure Autonomic Failure. They confirmed the test results were consistent with PAF.

I've been on octreotide for about 2 years now and I can't function without it. I was in a research study at Vanderbilt and that was the drug they recommended for me. I just recently changed insurance and my prescription has been held up because of the pre-approval process. Midodrine does help some, but I need the octreotide if I want to stand for more than a minute. I've been without it for about a week now and I can really tell the difference. I'm almost bedridden without it.

I shop online and have my groceries delivered. It's great. And the delivery person doesn't accept tips. I order from vons.com and they bring the groceries right to my door. I live with my family who does most of the shopping, but sometimes I want to be able to choose what I want.

This is one of my major problems also. I avoid public restrooms and if I think I may have GI problems when I do go out I take an Immodium. I also have a chair in front of the toilet at home in case I need to pass out. I've been on the bathroom floor many times. One thing that helps me is my injection of octreotide. It will keep me from passing out when I use the bathroom. At night is another story, since I can't take my medications (midodrine, fludrocortisone and octreotide) at night. I have a bedside commode and sometimes I barely make it back to the bed before passing out. I've also been on my bedroom floor many times. I'm not good with bedpans. By the way, I have Pure Autonomic Failure. I hope you find something that works for you.

PAF is Pure Autonomic Failure. I can exercise while sitting. I just started it up again since I was loosing all my muscle tone in my arms and legs.

I have PAF and this is an everyday thing for me. That's why I have to take midodrine and octreotide before I get out of bed. The BP drops but the HR usually stays about the same. It also drops so much sometime that I can't even get a reading.

I was diagnosed with PAF (which is in the same category as POTS, I think, but without the high heart rate) and also with small fiber neuropathy. I didn't pay too much attention to the neuropathy because it wasn't bothering me too much. I just started seeing a neurologist that told be my PAF is caused by the neuropathy. Now he's trying to find the cause of my neuropathy. I'm having blood test done to check my thyroid, B12 levels and other stuff. I'm also scheduled for another nerve conduction study. Hopefully he can find the cause and treat it. Wouldn't that be great!

Hi Karen - I'm glad everything is going so well for you. I'm taking the same medications as you are with the exception of ephedrine for my PAF. Does that require a prescription or do you buy it over the counter. I think in the US its not as accessible as anywhere else. I just need a little extra "something". Also, what dosage do you inject of the octreotide?

I started off with a smaller dose and eventually worked my way up to 12.5 mg 4 X day. That alone is not enough now and I take an injection of octreotide three times a day. That will usually help for a couple of hours at a time. I also take fludrocortisone 2 X day. I'm hoping that the new drug droxidopa will help me. It may be approved by the FDA early next year.

Definitely fainting or being on the verge of fainting every time I get up. If I don't sit or lay down within a few minutes I will faint, which is very disabling.

I'm 55 and was diagnosed with PAF in 2008, although my symptoms started getting bad 3-4 years ago. I'm wondering if anyone else started getting bad symptoms around the time of menopause. I never got any hot flashes or any of the normal signs of menopause - just syncope.

Hi Gwen - To answer your question, I am taking all three medications - florenef, midodrine and octreotide.

I also have PAF. I was diagnosed about a year ago, but I've had the symptoms for a few years. I finally ended up at UCLA Hospital where they made my diagnosis. I haven't been able to work since then and had to take my retirement a little early. I also went on Social Security Disability. That wasn't a hard process for me. They approved me right away. I think it helped that I had lots of paperwork and a really good letter from UCLA. UCLA put me on pyridostigmine, but I had to stop taking it. It just made me so sick. The medications I have been taking are midodrine and florenef. I've been taking both of these for a while and had to increase my dosage a few times. I'm pretty much taking the maximum now and it's not working as well as it used to. I also went to Vandy for a research study and I ended up with a new prescription called octreotide. I inject it three times a day. After the injection, I'm usually able to stand for longer periods of time before becoming lightheaded. There is a new drug waiting to be approved called droxidopa. I'm hoping it will be my miracle drug. It works in a different way the the other meds I take. You should look it up on your computer. I wish I had something more positive to say, but my condition seems to be getting worse. I can't get out of bed without my meds. Feel free to PM me if you want to.

I was thinking of participating in the research study for this and receive information from a local neurology group, but I decided not to because I would have to be off the midodrine for about a week before the study and I can't function without it. I can't get out of bed without midodrine and I would have to report to the Doctor's office several times. Also, they may put the patient on a placebo part of the time. I just thought it would be too much for me. I think this drug would be perfect for me (hopfully) since I have pure autonomic failure. I'm hoping the drug will be approved soon and I'm really getting my hopes up that it will help me.

Hi Other Karen - It sounds like the activities you do include being around other people. I probably need that interaction and the activities sound fun. Regarding the octreotide - I've been taking 25 mcg twice a day and I told my doctor it wasn't enough, so she said it's O.K. to take three injections a day and I could increase to 50 mcg slowly. Yes, it does affect the bowels, but I don't mind, it's for the better - so far. I think increasing my octreotide will also help me get out more often and maybe even have sort of a social life. I'm glad you're doing so well - take care. Karen

Luckily I live with my daughter and three grandchildren. They're able to help me with shopping and whatever I'm not able to do. During the day they go to school and work so I'm only alone for a few hours. I try to get some chores done during the day, but I don't usually get very far. I just need to feel like I'm contributing a little. I retired last year but I'm still invited to the annual picnic, which is today. My family is really looking forward to it, but I'm just a little scared I may not last long. Maybe I can lay down in the car if I need to. I'm still embarassed about being in the wheelchair. I know I need to get over it - its all just my pride. And I hate the questions "what do you do with yourself all day?" or "what exactly is wrong with you?". Aside from all that - I WILL have a good day today. My family does take me shopping or out to eat when I'm feeling up to it.

So many great ideas. I really appreciate all the input. I'm fairly new at being "disabled" (for about a year) and have been feeling sorry for myself and getting a little depressed. Sunfish - you are such an inspiration. I'm going to print these replies and read them when I'm feeling down and bored. Thank you, I enjoyed your "rambling". I have some really good ideas now.

Thanks for your suggestions. I could go for a laptop and shopping. That sounds fun. and the books on tape is something I though about but just haven't gotten any yet. I may even try crocheting. It's been years since I did that. I'm not a very creative person when it comes to writing, but I could give it a try. My PAF has been very slow moving but it seems to be progressing lately. I take midodrine, florenef and octreotide. The octreotide works for about 1 1/2 to 2 hours and then wears off and I can only take the injection twice a day. I'm taking the a very high dose of the midodrine and it doesn't seem to work as well as it used to. I'll be seeing my dr. next week to see what we can do. Thanks again.

I have PAF (orthostatic hypotension) and can't stand for very long. Also, if I sit at the computer too long I have horrible neck pain and have to lay down. I'm pretty much homebound. What does everyone do to entertain themselves during the day. I can read for a short time before my vision goes and I get dizzy. I'm soooo bored. Any suggestions?

I'm so glad you're doing well with the octreotide. It sounds like your everyday life has improved greatly. I've had good results also. I'm not able to walk much since I can only stand for a short time before I get too lightheaded. The octreotide helps me to stand a little longer (maybe 5 minutes instead of 30 seconds). If I go somewhere I use a wheelchair. I took a third shot one day when I really needed it, but I wasn't sure I should have. I'm going to ask my doctor about it. Congratulations on giving yourself the shots. I was relieved when I was finally able to do it. I also bruise myself sometimes - I don't know why. Thanks for the update - I was wondering about you. Karen S.

Hi Karen - We have so much in common. My name is also Karen, I have PAF and am using the most of the same medications as you. I've been taking midodrine and florenef for a while and just started with the octreotide injections twice a day. The medications do help, but I think I need more, maybe a higher dosage. I've been taking 50 mcg twice per day and it seems like it only lasts for 2-3 hours. What dosage are you taking, and does it help? I recently posted this subject on another web page because I had trouble with the injections. I'm now able to give myself the shots, but it took a couple of weeks to do it myself.