potsgirl

Hi Tessie~

Sorry I'm not sure what's causing such a wide margin between your systolic and diastolic numbers. A 'normal' range is 40 points between top and bottom - 120/80. I have the opposite problem, I have a very narrow range between BP points, such as 85/72. Systolic is the pressure when your heart is beating (and flow is outgoing), and diastolic when your heart is relaxed (and flow is incoming), but you probably already knew this. I think narrow ranges mean low blood volume....Sorry couldn't be more help, but your 102/64 looks pretty good. Good luck!

Cheers,

Jana

Erika,

I've had a lot of luck with Paxil, but couldn't tolerate Prozac or Zoloft. I just take 15 mg a day, at night, and it tends to help me sleep better, too. I've been on it for about 10 years, and only used to take 10 mg, but I recently upped my dosage and it's been okay. I also take .5 mg Klonopin at night to help me sleep, too. Just started that about 3 weeks ago, and the combo seems to work well for me. Hope you find something that works for you, too. Sometimes it takes your body 3-4 weeks or more to adjust to it.

Cheers,

Jana

Does your daughter have many allergies to meds? You might want to point out your concerns to the staff performing the MRI, so they're advised in case something does go wrong. I'm allergic to contrast dye, it puts me into anaphalytic shock, so they have to pre-dose me with a large amount of Benadryl. Hope all goes well, but better safe....

Good luck,

Jana

Ami~

I'm so sorry that you and your son are having such a difficult time right now. The good news is that since he's younger, he may well have a better chance of recovery from his symptoms. It sounds like you're being strong in the face of many obstacles with you and your son. That can only make you a wonderful role model (as Momto G wrote) to your son, and I love that you're focusing on good and happy things such as preparing for Christmas.

Is Mark seeing an autonomic specialist? Is he on any meds? I will keep you and Mark in my thoughts and send positive energy your way, and keep you in my prayers.

My best,

Jana

Congratulations! Every little (and big) victory counts. Now you can push a little more on those boundaries.

Cheers,

Jana

I would love to know more about a 'spect scan' and if people with pacers can have one. My last MRI, about 4 years ago, also showed 'an abnormal amount of ischemic lesions' and what looks like what possibly may have been a small stroke. I would give anything to have another MRI - or if possible, a spect scan to see how these lesions have progressed. I with you, Jan, knowing we have them, and that they're probably due to lack of blood flow to our brains, isn't very comforting!

Good luck with your tests, Lina.

Cheers,

Jana

Broken Shell~

Thanks for the update, and a big hug back to you. You've been missed. I don't know anything about the occupational therapy for the pain and dysfunction in your arms, but wish you the best with it, and that you're back on the computer soon. Please keep in touch with how you're doing!

Best,

Jana

Welcome to Dinet, JennaC!

I know that most of us probably get very short of breath going up just a flight or two of stairs, but I have yet to hear of anyone put on oxygen for it. I know I can barely breathe when I reach the top of our stairs, and that my HR is going like crazy. It's interesting that they have you on oxygen.

I didn't have chest pain with Florinef, but I had major headaches that I couldn't tolerate. I'm sure others on this Forum probably have had chest pain with this med, however.

Sorry I can't be of more help, I'm sure others will have more enlightening responses, but again - welcome to our community.

Cheers,

Jana

I also get migraines, and when one hits, I can't stand light, noise, movement, anything except laying in bed in a very dark, quiet room. If it's really bad, I take 1/2 a Percocet and it does take the edge off, after resting for an hour or so. There are also medications one can take to prevent migraines, but you obviously are not having them often enough to do this at this time. I know Advil, Tylenol, any other-the-counter pain med won't touch my migraines. Also, I seem to not have them for awhile, and then I'll go through a time period where I'll have them for a couple of days....Weird.

Hope you don't have to suffer through another one of those!

Cheers,

Jana

I agree with the others - get more testing done, as soon as possible. There must be some reason you have blood in your urine. Have they checked you for interstitial cystitis? Your pain certainly does sound like you have a kidney issue. Please let us know what they find out and how you're doing!

Best,

Jana

Hi Lissy,

I had a somewhat difficult time answering these questions because I was between the answers. I would say that I'm between the always having fatigue to having really bad fatigue; and some days I can't remember what I did 30 seconds ago, but I can remember something last week. Just to share: this weekend, I was in the drive-through lane at Walgreen's to pick up my BC pills for ten minutes before I realized I'd picked them up 3 days earlier! Sometimes you just have to laugh....

Cheers,

Jana

I'll get bouts of this occasionally, too. I also have many days in which I just don't feel hungry at all, so I eat about the same thing every day because I know it won't upset my stomach and I have to get my calories in. I never throw up, but I can feel pretty sick.

Cheers,

Jana

Lissy,

How has your weight been? If you've lost much weight, than you've probably lost breast volume. I can't think of anything that POTS would do to effect the size of your breasts. I used to be a 'C' cup, and when I got ill I lost about 15-20 pounds and I'm now a 'A' cup as well. Have you had a child? This will also decrease/cause more sagging of the breasts as will yo-yo dieting.

Hope this helps!

Cheers,

Jana

Can I borrow your dogs?

Sue,

May I ask what the main benefits of the Midodrine were for you? I got horrible headaches too, and couldn't make it past a week of taking it. If it didn't help with your fatigue, what did it do for you? I may give it another try.

Cheers,

Jana

Yay for you, Erika! I wish you many more. I actually had a good day last week, where I almost felt like my old self again, and it's days like that that give me hope that I'll have more coming. They're pretty few and far between, though. I usually get out of the house for an hour or two four days a week, and then I have to rest the remainder of the day. I need about 12 hours of sleep a night but never get it. I can lay down and rest for an hour after lunch, I just can't nap. Overwhelming fatigue rules the majority of my days. You're definitely not alone!

Cheers,

Jana

What do they prescribe, if anything, for this? The usual hydration, salt, Florinef?

Thanks!

Jana

Midodrine gave me horrible headaches and I felt really sick on it. I would take a pill, get some energy after about 1/2 hour that lasted about 2 hours, and then it would slowly fall off until I was more tired than when I started. For me, it's intolerable due to the headaches and feeling sick - plus, it didn't seem to have much impact on my BP to put up with those side effects.

Hope it works better for you!

Jana

My sympathies...I know it must be scary and you must really feel awful right now. I would definitely try the Tamiflu - what does your doctor suggest? As the other ladies suggested, the antibiotic will hopefully be a help, not a hindrance, in keeping other bacterial infections away. Rest a lot, drink tons of fluid (get lots of Vitamin C), and sleep as much as possible. Get well soon, and let us know how you're doing! Positive, healing thoughts your way.

Cheers,

Jana

Yes, I get this too. It's called 'tinnitus' and unfortunately there's nothing you can do about it except try to distract yourself with music, tv, or other sources if you can. It can be a ringing, buzzing, or other 'white noise', usually in one ear only. They're not sure of the cause, but mine tends to come and go. I guess that some people get used to it after awhile. Good luck!

Greetings All~

Does anyone else have a problem with staying up past late afternoon? I used to be able to stay up until about 7:30, sometimes 8, and then all of a sudden I'd get tremendously tired and have to go to bed right away. Not to sleep, always, but to go and at least lay down and read for an hour before sleeping. I've noticed now that the time is creeping up earlier, and it's getting alarming. I get up at 6 am, sometimes lay down for an hour to read after lunch, but now this wall of tiredness is hitting me around 3:30 - 4:30 or so. I just have to lie down! I can read up until about 6, but then it's off to sleep. Not good sleep, either - tossing/turning, up to use the bathroom.

I have recently gone off .5 Xanax and upped my Klonopin from .25 to .75. My doctor told me that the two are 'equal' drugs and that .5 of one equals .5 of the other. The earlier bedtime hit about a month before I switched meds, though. Anybody else? (I haven't been able to tolerate Midodrine or Florinef.) I know most of you feel better at night, and I'm missing out on too much of my life!

Thanks,

Jana

I had pretty severe bradycardia, where my HR would be in the low 30s for long periods of time (and like some have pointed out, was very symptomatic), so I couldn't take any BB's or any other drug that could bring my BP and HR down. I finally ended up getting a pacemaker, which is set so that my HR won't go any lower than 60 BPM. It's helped my feel a little better physically, but a lot better psychologically. Perhaps you could ask to wear a holter monitor to see what you heart is doing over time - that's what they used with me.

Good luck, and hope you're feeling better soon!

Cheers,

Jana

Toni,

It sounds like you have orthostatic hypotension - where your BP falls when you stand up, and your pulse shoots up. It I get up from a supine position, where my BP is about 95/65 and my pulse is 60 (it would be in the 30s but I have a pacemaker), and stand for a minute or two, my BP falls to about 75/60 and my pulse goes up around 110-140. Is this similiar to what happens to you? Do you have grey outs or faint? If you have BP/pulse patterns like that, you likely have orthostatic hypotension (OI). There's lots of info on this site and on the web about it...it's a form of dysautonomia, and some doctors will argue that you don't have POTS if you have OI because with POTS your BP shouldn't fall that much, only about 10 - 15 points or so.

Hope this helps! Cheers,

Jana

Good luck, and let us know how it goes!

Hi Ana,

Mine are similar to what you describe, too. Mainly missed beats and double beats. Sometimes I'll get that heavy feeling in my chest, too, especially after I first lie down, and then I'll get a bunch of heavy fast beats altogether. Also pain flares in my chest. My cardio told me not to worry unless they last for more than a couple of minutes or so, but of course you may have a different situation going on. I'd call you cardio.

Cheers,

Jana