potsgirl

I've also had to use a wheelchair on occasion, and I've been embarrassed, too. You have to focus on what's important, though. Attending the wedding and sharing the joy with your friends while keeping yourself safe and not making a scene at their wedding by fainting, or not going at all? I think we imagine many more people are looking at us and being judgmental when they're really not.

Go! Have a great time, and let us know how it goes.

I worry that not enough of the public knows about us to try and sell ad space. Who would do it? I like the idea of making the president's job into a couple of different jobs, but then you don't have the continuity that having one person in charge brings. I know that several sites similar to ours does charge a fee, like $25-$40, but that makes the site exclusionary. I hope that everyone on the forum contributes what they can to keep it running, even if it's $5 or so. Those of us who can afford a little more should make a point to give when they can.

I think the best solution is to have someone take over Michelle's job as is, but that may be difficult, especially since it's not a paid position. We may have to divvy up certain responsibilities to keep the site running. I'm volunteering now, but unfortunately cannot take on more duties for the site at this time.

Does anyone know how the position is being advertised? I assume it's just among us....There has to be some solution out there! Does Michelle have a "cut-off" date??

Sarah4,

I've tried to lightly exercise a couple of days in a row, too, and that just doesn't work for me. Try working out every other or every third day and see if that helps. I can't even do 2 days in a row without feeling major effects the following day!

Good luck,

Jana

I also have pretty severe orthostatic hypotension, but my BP drops like a rock when I get up from laying down. My TTT helped verify this, but I am a fainter. I don't know if the speed of the drop has any meaning, except that if your BP drops slowly, you probably wouldn't pass out.

Song Canary, how long does it take your BP to drop?

Victoria, I'm sorry you have this additional burden to carry. What meds did the doctor give your husband? I do think Song Canary is right that vasovagal neurocardiogenic syncope is associated with a too rapid decline/associated symptoms of having the BP drop too quickly. Do you know that his BP started and ended at?

My best,

Jana

I have a diagnosis of severe orthostatic intolerance, CFS, etc....Don't want to bore everyone. I am a fainter and have a lot of fatigue and a very low BP along with small fiber neuropathy. OUch!

I am horrible in the mornings, can hardly get down the stairs (we're moving to a new home without stairs in one month - yay!), or think or do anything until I get some coffee and food in me. Then it's time for my pain killers, and by 9-9:30 I'm feeling almost human (I'm up by 4-5 am). It doesn't matter if I nap or not, by 3-4 pm I hit another wall and have to lay down and read until bedtime, 6-7 pm.

Usually, though, my symptoms are around all day, just in different levels of acuteness.

Actually, I have had periods where I had fecal incontinence before. I just don't quite make it to the bathroom in time, or think I'm just passing gas and it's more than that. My POTS doctor (neurologist) told me that it can definitely be a problem for us. I've had some pretty embarrassing experiences with it. Luckily, it comes and goes. I haven't needed meds yet, but I know that there are some out there that can help with incontinence.

You're not alone!

Best,

Jana

My cardiologist told me I needed to get off my Lyrica because it could be lowering my BP. My neurologist told me to go off of it cold turkey (I take 100-150 mg) to see what difference it would make. He would like me to be up to 450 mg for my small fiber neuropathy pain. After two days without it, I feel horrible. I haven't slept the last two nights, have a major headache and anxiety. We have a move coming up and need to start packing, etc, so the stress is too high anyway. I'm thinking about making the change AFTER the move instead of now....it would move it back one month.

What do others think? Anyone else have withdrawal symptoms from Lyrica? I need some direction here....Thanks in advance.

Are you talking about doing one at home or going in to have one done? At Mayo, I laid there for about 10 minutes relaxing, and then they increased my incline every minute for 10 minutes. I responded pretty severely, but didn't pass out because they raised me so slowly. At home, I lie down for about 4-5 minutes, and then stand up and take my BP. Sometimes I take it every minute for 5 minutes standing up.

Thanks everyone, for posting replies. Alicia, I was tested for Meniere's disease a couple of years ago, but may want to do another test. Just recently, my cardiologist took me off Lyrica for my small fiber neuropathy because they think it was making my BP go lower and causing more fainting. Oh, yay.

Bellamia (sweetheart), Issie, s-pot and Fried Brain...I feel your support and caring.

Cheers,

Jana

Lieze,

If you aren't taking anything to help you with your anxiety, I would check into that as soon as possible. I am on Paxil, and that's helped me immensely. You may need to go to a pyschiatrist to work with you on stabilizing your anxiety and to see which anti-anxiety drug might work the best for you. I've also heard that it can help with other POTS symptoms, too. I've been on Paxil for the last 10 years, and never had an issue with it. Trazodone can also be helpful, especially if you have problems sleeping...or Klonopin.

Hope you find something that works for you. I would try it as soon as is convenient for you!

Take care,

Jana

I have the waist-high ones, and they are incredibly hard to get on. I have to have help to do it! Mine are also open-toe. I think that's to let some air in so they're not so hot. My doctor recommended those, too. Good luck!

My sleep schedule seems horrible to me, but at least I know I'm in good company. Good topic. I have periods of time when I'm just laying down because I just can't be up anymore, and times when I'm actually sleeping. My normal day is:

Up between 4-5:30 am

Bed, reading from 12:30 - 1:45, try to nap from 2-3

Up for an hour or more

Bed, reading from 5:30-6:30/7 pm

Asleep usually between 6-7:30 pm (puts quite the cramp on the night life!)

So....I guess that like a lot of you I sleep the best my first couple of hours or so, then it's toss/turn/restroom/etc. I have my fan on, the A/C down to 72, black-out blinds, and it must be quiet (except for my white noise fan). I just dread the thought of becoming bed-bound. I don't know how some of you do it! I tend to be housebound most days, so I suppose it's similar to that?

How do bed-bound people spend their time? Anyone want to comment?

Cheers,

Jana

Yes, that's know as orthostatic intolerance or ortho. hypotension. You would need more data to firm up that diagnosis, though. As Naomi writes, a tilt table test would give you a diagnosis. With POTS, usually when you go from laying to standing your BP stays about the same and your HR goes up at least 30 points. With orthostatic intolerance (which I have), your BP will drop by a significant amount and your HR will go up at least 30 - if not 60 or more - when you stand. Be very careful when sitting up or standing from a seated or laying position.

Florinef helps your body retain salt, so it keeps your BP higher. I think you should be feeling the effects of the drug within a week or two....someone correct me if I'm wrong, because I could never tolerate Florinef.

Please feel free to personal message me if you have more questions. Have you had a work-up with a dysautonomia specialist yet?

Cheers,

Jana

Hi Victoria,

I'm so sorry you're going through all of this. Stress certainly exacerbates our symptoms, and none of us needs that! Know that you're in my thoughts and I'm sending positive energy your way.

You take care of yourself!

Jana

(ps...may be back in IA at the end of the month)

Hi Everybody~

Hope you all had a nice weekend. I find myself "dropping" and fainting more often lately. I'm also having seizures that last about 5 seconds or so, but really scare me. The other thing that's increased is my fatigue level. I'm spending most of my day in bed from about 1 pm until the following morning around 5 am. I don't sleep all that time (but a good part of it), yet I never feel rested (CHF anyone?). I'm starting to wonder if there's some kind of link to MS with these symptoms, which also include dizziness, vertigo, balance issues, etc.

Anyone else have knowledge or experience with the same things?

Thanks to anyone who might have an answer.

Cheers,

Jana

I suppose I'm one of the "lucky" ones that can tolerate half of a wine cooler or a glass of wine sipped very slowly on special occasions. If I keep it to that minimum, I don't usually have any repercussions, although I probably imbibe about 5-6 times a year. Luckily I was never a big drinker, but I certainly enjoyed a glass of wine a night. I do miss that.

Naomi,

I can't take much salt at night because I have to drink so much water with it! How about you?

Cheers,

Jana

Green,

I noticed that your RX says "Placebo". What does that mean?

Lieze,

A personal question...Did you ever have an eating disorder when you were younger? Food issues? The reason I'm asking is that I did, and now I have so many problems with food and keeping weight on. I have to wonder if there might be a connection between the two. Please don't be offended, it's just a personal theory of mine (for me) and am curious if others might also have had this issue.

Ciao,

Jana

I couldn't tolerate Midodrine, either. Too many nasty headaches, which made me nauseous. Have you tried Florinef?

A heart rate of 45-55 is low. Are you seeing a cardiologist? You may want to ask them to let you do a test with a Halter monitor, which you can wear for a prescribed period of time (24 hrs, or longer) that will track your heart rate to see how low it actually gets. My HR dipped into the low to mid 30s, which meant I have bradycardia, so I ended up with a pacemaker. You should be okay as long as your HR doesn't go below 45-55.

My BP drops when I go from laying to standing. A lot. Then my heart rate doubles or more. This usually means orthostatic intolerance, which it doesn't sound like you have since your BP increases when you stand up. With POTS, normally your BP will stay about the same, with no dramatic drop or increase. The definition of POTS is when your HR increases 30 points or more when you stand up.

I hope some of this helped, and a lot of us end of going to a specialist, like at Cleveland Clinic or Mayo to get more definitive answers. I don't know where you did your testing, and I hope the doctor you're seeing really understands the nature of this beast!

Take care,

Jana

Why are you off of Florinef? Do you have your bed raised 4-6"? I do that and sleep with two pillows. I hate to say this, but your doctor may not be too concerned about your BP, because 90/52 is on the low side of "normal". What effects are you having at night that keep you from sleeping? Also, are you taking plenty of fluids with you 1 mg of salt at night? I can't take salt at night because I have to get up several times a night to urinate.

I really hope you figure out something that works for you, and to some people, a BP of 90/52 can make them feel miserable; where as others (including me) get down to 72/60 and feel crappy, but not terrible. Unfortunately, I can't tolerate Florinef or Midodrine.

Good luck, and I'd be interested to know your answers to my questions, if you don't mind. Perhaps we can all help you more if we knew more about your side effects, etc.

Cheers,

Jana

It can be difficult to get into Mayo unless your doctor refers you. If you get that referral, you should have no problem.

Growltiger,

You say you're horrible at standing up for yourself. Some pointers: 1. Write down notes as you think of things you want to address with the doctor, and make sure your doctor spends enough time with you to answer them; 2. Bring a friend/family member with you as an advocate! It's hard to remember everything the doctor tells you, and it would be a big help to bring an assertive person along to make sure you're getting your questions answered.

Now, Welcome to the Forum! As others have stated, it certainly sounds like POTS symptoms to me, along with the possibility of chronic fatigue syndrome and other issues. You need to get to a specialist who deals with POTS patients, and get a diagnosis. Many of us ending up going to the Mayo Clinic in Rochester, MN, or they have a great specialist in Phoenix, AZ. Cleveland Clinic is another great place to go. Have you had a tilt table test yet? I was diagnosed at Mayo Clinic in Phoenix, but was also seen in MN. These places are worth the time and energy for a diagnosis. If you become unable to work again, you'll need a firm diagnosis to file for disability. That's what I ended up having to do.

If you have any questions about Mayo, please feel free to PM (personal message) me. Hang it there - you've come to the right place.

Cheers,

Jana

Hi Lieze,

I'm heading to my mom's house this Sunday. I'm in Tucson, she's in the middle of Iowa, so I'll be taking a nonstop flight from Phoenix to Iowa. I'm pretty nervous, since this will be the first time I've flown without my boyfriend in years. I'm going to swallow my pride and ask for wheelchairs in the airports and my mother has one I can use at her house. I'm going to push through everything to get there, because it is so GREAT to be back home again. Here's to mothers everywhere!

I'm so glad you're getting some help and support that you were truly needing. Let others do for YOU for awhile, and take the time to rest up and get things in order. I'm praying for you and sending you positive strength and energy.