potsgirl

I have pretty severe orthostatic hypotension, so my BP drops dramatically when I stand up whereas my HR at least doubles (lying: BP 95/65, HR 60; standing: BP 72/62 and HR 125). I have also been diagnosed with bradycardia (have a pacer) and heart failure in the past, so the study makes sense to me. Some doctors don't believe that if you have a significant BP drop when standing that you have POTS, even if your HR increase by more than 30 beats, whereas others think they can go together. I have all of the symptoms of POTS, but I feel like I'm kind of in limbo....all of the treatments I've had have been your typical POTS ones. I just know that I have autonomic dysfunction, along with a variety of other associated problems like most of us on the site.

Interesting study. Thanks for posting it, firewatcher.

Cheers.

Good luck to you!

I was diagnosed with dysautonomia and various other illnesses that are usually associated with POTS (chronic fatigue, small fiber neuropathy - diagnosed just last winter - vulvodynia, etc). I also have heart issues, so I may not be your average POTS bear. I have kept up on exercise as much as possible, but nowhere near where I was before I became ill, and try to eat right. I nap in the afternoon, and am asleep by 7-8 pm at night. Then it's up at 4:30-5:30 am and the cycle starts all over again.

There have been times when I feel not as sick, but I've never felt like I've been in remission. I've had POTS for four years now, and am just turning 49 in two days. As someone else wrote, perhaps menopause will help....Sure hope so. I know that others have had periods of remission, though, so don't give up. I also know people who have had the illness for 20 or more years. It's just different for everyone, so don't give up hope!

Here's wishing you strength and peace,

Cheers,

Jana

Off topic, but so glad to see you back!

Victoria,

I'm so sorry that you're having all of these problems. How scary that must be! When is your appointment with Dr. Grubb? Is someone going with you?

Mack's mom has some excellent suggestions for you. It sounds like you're pretty intolerant to a lot of meds. Many of us are. I can't take Midodrine or Florinef, for example. Sometimes it helps to take tiny doses and build your way up.

I'm sending you positive energy and thinking of you. Take care of yourself, and let us know what happens when you see Dr. Grubb. I know he'll be great for you.

Cheers,

Jana

I agree with nowwhat! My doctor diagnosed me with chronic fatigue and I also have small fiber neuropathy - chronic pain in my hands and legs. Along with severe orthostatic intolerance, autonomic dysfunction, and vulvodynia (I won't bore you with the whole list of heart issues), it's enough to make the toughest of us whimper once in a while - or cuddle up for a long nap. So, it's probably not just the POTS, but everything that ties into it as well. Do you also get really weak? What meds are you taking?

Cheers,

Jana

Hi Cordelia,

I have heard of the doctor you're going to see, but I'm only familiar with a Dr. Goodman, who is an autonomic specialist at the Scottsdale Mayo (he moved back to AZ from MN a year ago), and Dr. Low, in Rochester.

Good luck in Rochester (pack warmly, it's still cold there), and try to get in at one of the hotels that are connected to the main clinic, where most of your appointments will probably be), and let us know what you find out. Best wishes to you!

Hi Lynne~

Sorry, I haven't heard of it. Have you looked it up on WebMD.com? It's a good site that explains drugs and their side effects and you can see how people who have tried Savella have rated it. Good luck with it...What symptom is it supposed to treat?

Cheers,

Jana

Thanks to Sallysblooms and Thankful for your answers. I'm going to call my neuro to see what dosage he wants me to try. After thinking about it for awhile, I do remember him mentioning it once a while back. Sure can't hurt!

I've never heard of it. It sounds like it's primarily used for diabetic neuropathy. Is that what you have? Is it safe for small fiber neuropathy that is caused by our autonomic dysfunction? I would love more info on how you take it and how often. Is it just used intravenously? Thanks for the tip, and please send me a little more info if you have the time.

Cheers!

Jana

sorry, got my messages mixed up somehow!

Lynne,

What part of Iowa are you from?

J

Victoria,

I'm also from Iowa (Ames!) and I went to the Mayo Clinic in Rochester. Is that where you went? I had a very good experience there, and it's pretty close to Iowa, depending on what part you live in. Since you haven't gone there since 2002, I would definitely go back again. I think there's been a lot of changes there in the autonomic department, and you may get more answers. I currently live in Tucson, AZ, where I go to the Mayo Clinic in Scottsdale. I have a doctor there who was in Rochester, but just moved back here, and I'm lucky to have him. He's great - returns my phone calls, etc. I also have heart issues, so I see a cardio there, too.

If you decide to try Mayo in Rochester, try to get Dr. Low. And I come back to visit my mother frequently, so perhaps we'll meet in Iowa sometime!

Cheers,

Jana

ps....your high fluctuation in BP and HR sounds like orthostatic hypotension/intolerance. I also have that.

Hola Everyone~

For the last two weeks I have been having a horrible time with my small fiber neuropathy. Sometimes it's my left hand, sometimes my right, sometimes both, but they hurt like all of the bones in my hands/wrists/forearms have been crushed, and I can hardly do anything with my hands. I've tried wrapping them, and it helps a little. I take Percocet in the morning, and Lyrica the rest of the day for pain, but it's just not controlling it.

Does the pain cycle like this for others? Does it seem to mean that my SFN is progressing to a worse stage? Please let me know your experiences....I'm going crazy!

Thanks in advance,

Jana

Hello,

I am just about to turn 49, and I know there are several people on the Forum who are in their 50s and 60s. I personally know one person who is 52 and has had POTS for approximately 20 years. She goes through good and bad periods, but still has it, along with CFS and a variety of of problems, like most of us suffer from. Another friend is in her 50s and has had POTS for the last couple of years. I was diagnosed at the age of 46, and for the last year and a half couldn't work. I really miss it, but you end up learning to live your life among your limitations, and it can still be good!

Are you able to go out? What's your daily schedule like? I'm just interested because mine is really weird. Up at 5:30 am, nap from 2-3, and back to bed at 5:30 to read until 7:30 (if I'm lucky) then SLEEP.

Hang in there. You're never alone on this Forum.

Cheers,

Jana

Hola Sandy,

My syncope episodes are very similar to yours. I am definitely a fainter, but have also had epileptic like experiences when I first get up where I don't actually pass out. My doctor told me that it's my BP dropping so low, obviously. Sometimes when I stand up, my BP will fall to mid to low 70s with a diastolic of about a 10-point difference (75/65), and of course my HR skyrockets. Sometimes I also have "drops", when my legs just give out suddenly and I fall to the floor but don't pass out. Do you have these as well?

Are you eating a lot of salt/drinking a lot of water? Is the head of your bed raised? Are you taking the time to sloooowly get out of bed or stand up? I think I'd talk to my doctor about trying to work with your meds to bring your BP up.

Good luck, and you are welcome to PM me if you'd like...

Cheers,

Jana

Thanks, Brye. If there isn't a watch out there that can track BP, there should be!

Cheers,

Jana

I'm looking for a watch that will track my heart rate and blood pressure around the house and also when I am exercising. I know some of you have these, and am looking for a recommendation for a good, accurate one that isn't too expensive (over $125 or so). I may have to settle for one that only tracks my HR, but would love to have some input.

Thanks!

Jana

I live for my cup of coffee in the morning. After that, I switch to decaf green tea for the rest of the morning. Nothing in the afternoon, just to make sure it doesn't interfere with my sleep, since I go to bed waaaay to early!

Hi Libby,

I can't tolerate Midodrine or Florinef, which is too bad since I have severe orthostatic intolerance. Perhaps you should ask your doctor if you can take a smaller dose, halfway between the two, and see if that helps with the side effects. A lot of us are very sensitive to meds, so we have to start on tiny doses and move up very slowly.

Afrin is the only decongestant spray I can tolerate. I've used it for up to five days before, but would probably stick to 3-4 days to be safe. Good luck!

I'm sending you positive thoughts, strength, understanding, and a big hug.

Are you housebound? If you can get out, I'd recommend joining some kind of group where there would be people that were interested in some of the same things you are. A place where it doesn't matter if you can't make it when you're really feeling ill. Can you exercise? I have a treadmill at home, but try to get to the gym a couple of days a week - or at least once - to help lift my spirits and help me feel a little stronger. A lot of POTS specialists think the exercise helps our POTS symptoms...I also take Paxil, which helps with my anxiety/depression.

I've met some POTS people that are in my city (Tucson) and state. I've made a couple of really good friends from the "Meet New Members" feature on this site. I've also written posts where I ask people to let me know if they're in my area, and if they're interested in getting together to talk with others that can relate to what we're going through. I've also made friends on this site who live a long way away from me, but they've become good email friends. We talk on the phone, too.

I hope some of these suggestions might work for you. Don't give up. I would like to be a "friend" to you, and I'm sure others would feel the same way. Do you know how to PM (personal message) or to add "friends"? That's a good start.

Hoping you feel better soon!

Cheers,

Jana

Firewatcher~

Is Allegra only available by prescription? I thought it was OTC now....

I use Flonase and sometimes a Benadryl (25 mg) tablet. I usually take the Benadryl before I'm going to be napping or when I go to bed at night, because it can make me very tired.

I used to take Allegra D so it wouldn't make me sleepy during the daytime, but trying to buy an allergy med that used to be prescription only and is now over-the-counter (OTC) gets expensive! With my insurance, I can get a prescription allergy med or a indigestion med for $7. Now that they've brought a lot of these OTC, it's much more expensive. My Prevacid is three to four times that amount. Luckily, the Benadryl is pretty cheap if you buy the Target/WalMart brand. If my allergies get any worse, though, I'll end up buying Allegra D again - OTC.

Good luck and feel better soon,

Cheers,

Jana

I agree with MomtoGuiliana (sp?). Most people (well and POTsy's) can get dizzy and find it hard to breathe at high altitudes when they're not used to that environment. Some people get "altitude sickness" which is a more severe case of nausea, headache, dizziness, and shortness of breath. I've also read that it takes about a month to acclimate to higher altitudes. I don't believe this is necessarily a POTS issue,although it may exacerbate our symptoms.

Cheers,

Jana