JaneEyre9

Hi there--

I just wanted to welcome you too. I was a 23 yr old grad student when I was diagnosed. It was a very confusing time for me, and I struggled with many issues about where my life was headed. If you have any questions, feel free to click on my name and send me a private message! Reading on this forum helped me so much at the beginning, so glad you are here!

Kristen

Hey Em--

I like your skillful use of "pbth" Haha!

Anyway, I was thinking that you could also get a long 2-door car like a Toyota Solara or a Chrysler Sebring. Because they are 2-door, the seats recline further back and there is more leg room up front. I do the dashboard thing too. Yikes!

love,

Kristen

PS-- The recliner you are in with the Weaten pups looks like the one i told you about for my birthday!

I had the same thing happen while leaving church. I'm often not even well enough to attend an evening service, so when I do go, most of the time I need to keep moving and leave quickly. I know I conveyed that I wanted to sit because the woman commented on it later. I was even wearing my Invisible Illness shirt at the time which said, "But you LOOK good!" Hahaha! It's really hard when you want to be social and can't be, but really, we don't have much choice. Just know you're not alone in this!

Kristen

I love the song-- it encouraged me as well!

What a great gift for Melissa-- she will love it!

love and hugs...

Thank you! Thank you! Thank you!

I used to work with researchers and docs in electrophysiology, and I know firsthand how much credibility and weight a single doctor has with fellow doctors. One educational session from you has much more power to spread awareness than a patient trying to advocate for him/herself (not that we will ever stop!). Thank you for using your influence to help us!

Oh, and also...

Thank you!

I cut back over months of time by alternating my regular dosage with 1/4 tablet less. As long as your doctor feels it's ok, you can take a while to wean off slowly. I finally reached a point where I couldn't wean off anymore, and I'm still at that dosage. Hope you find the schedule and dosing that works for you! I can relate to how awful it is!

Kristen

Hi Linda,

I'm so happy for you that you have found a doctor who has ideas about the causes and possible treatments for your long suffering. Emotionally, this must be a huge relief. Keep us updated as you move forward with your appointment and diagnosis. Thanks for sharing this uplifting news! It's not uplifting to have these terrible issues, but moving forward and feeling like you are making progress with a doctor is a really great feeling.

Kristen

Thanks for the helpful feedback, everyone.

I plan to talk to my doctor about my options for getting fluids at home and making the prescription more specific in terms of rate. The last time I had a crisis requiring fluids, I was having a drug reaction that lowered my BP, so the EMTs ended up giving me fluids at home and then eventually taking me to the ER. They told me that if I ever had a POTS crisis like that again, I could call them to administer fluids at home as long as I had a prescription. When I get into a real crisis like that (which isn't too often), it's tough to tell if I need to have "just IV fluids" or if an ER trip is also necessary. I think that because I know I have POTS, I try to avoid the ER as much as possible.

Doctorguest-- Your advice really helps, thanks! I know that the fluids definitely helped me, but I probably excreted more than usual because of the fast infusion. I am late in saying this, but I really appreciate you being a part of this support forum. I'm sure you have an incredibly busy schedule, so taking time to read and post here is a true gift to us.

How fast do you get your IV fluids?

I got 2 liters today in about an hour because the EMTs were eager to move things along. I started to feel better during the first liter, but at the end of the second liter, I felt my heart rate spike and there was a "coolness" in my chest and throat that was very uncomfortable. I wondered if anyone here has had that type of reaction from getting IV fluids too quickly.

Also, if EMTs giving them at home are not able to wait for me to get them slowly, do any of you have another way of getting IV fluids at home? Usually when I need an IV, I'm shaking and feeling so terrible that a trip out to a clinic or office is sort of out of the question.

Thanks for your help!

I'm sending you a PM!

Hi Dennis--

I've had similar feelings about not working. I've recently explored "at-home" jobs that can be done online. I'm not sure what your interests are, but there are some legitimate opportunities out there. You may also want to consider online education if you want to do something brand new that requires training.

There have been times when I've been too ill to do basic daily tasks, yet I wanted to work so badly that i had myself almost believing that I could do it . Dizzygirl gave some good advice--Make sure you are being totally honest with yourself about what your body will allow you to do. It's not really worth working if it makes you so ill that you can't enjoy your job or your life! Sometimes, our toughest "job" is trying to heal.

Kristen

I am lactose intolerant. I had a medical test done, but really, what helped me was just eliminating milk products from my diet. Whenever i would ingest milk after that, i would have symptoms. I look to soy products for substitutes. I also drink Lactaid milk. I have substitutes for just about everything I like. Also, my grandma is gluten intolerant-- she likes things from the Gluten Free Pantry.

Good luck with determining your problem foods-- you might have luck visiting a gastroenterologist to get help with an elimination diet and medical tests.

Kristen

I did not have a good experience with Melatonin, but I'm sure that everyone is different. It made me very sick and sent me to the ER. I posted about it back in March of '06. Good luck, and I hope you find something to help you sleep!

Kristen

I don't have any tips to offer since I've never been pregnant, but I just wanted to say

CONGRATULATIONS!!!

That is great news-- you must be so happy

Kristen

My very first faint occurred while I was experiencing overwhelming menstrual pain-- much worse than my normal "bad cramps." The doctor originally suspected a ruptured ovarian cyst, but I was eventually diagnosed with POTS several months later. I think the pain definitely played a role in my fainting, but i was also dehydrated and overheated. I try to avoid the bad cramps with Maalox-coated aspirin (Ascriptin). It counteracts the hormone-like subtance (prostaglandin) that causes the cramps in the first place. Sorry to hear you had to call off work-- it's so frustrating to be held back by the POTS/period combo.

Kristen

PS- I just read that ibuprofen inhibits prostaglandins as well!

PPS-- I also just read that prostaglandins influence BP, so what we are describing makes sense.

Fainting is a lot worse than it sounds, I agree. Before I was diagnosed, I had no idea what was happening to me when I felt about to faint. My body just felt like it was shutting down! I think what helped me emotionally was getting a grip on what caused the faints each time. I saw in your other post that you started Florinef. Was anything else different about that day or the day before? Had you slept poorly? Had you not eaten much the night before? Have you told your doc about your episode? He or she might want you to have an event monitor.

One last thing that helped me was recognizing pre-faint symptoms. As time passed, I had tons of times where I felt "about to faint," and I was able to recognize those feelings so that I could abort the actual faint by lying down. Sometimes just lying down doesn't help-- another good thing to do is to get your legs all the way up in the air, if you can.

It does take a long time to get over a faint, so be gentle with yourself. Your body is "rebooting." ((Hugs))

Kristen

are you a person who likes crafts or puzzles? online games or hobbies like crocheting or scrapbooking might be satisfying for you. those things can be done in short bursts and stopped whenever you need to stop.

reaching out to people is also a great way to spend time-- very rewarding to make a phone call or write a note/email. staying in contact with the outside world is so important when we can't get out!

hope these help!

hey dizzy,

that's a lot of infections! you must feel miserable. sounds like your immune system isn't doing its job too well. I know that i have some immune issues separate from POTS, but i don't get that many infections over such a short period. i just seem to be more likely to catch "what's going around" and have trouble getting rid of it as fast as others. You might want to make an appointment to get some specific blood studies done by an immune specialist. hope you start feeling better-- you must be sick of antibiotics too.

Kristen

I'm so sorry to hear about Ernie's suffering in the hospital. I don't have any words of advice I can offer, but I will be thinking of her. Thanks for the update, Morgan!

Kristen

Yay, Nina! What great news!!! Congrats

I was told to go off of Florinef very quickly too, but in the long run, I was glad that I weaned myself down slowly. Because i stayed at each successively lower dose for several weeks, I found out that Florinef was actually a helpful drug for me (only at 25% of the amount i had been taking originally). I hope you find what works for you! It never hurts to ask the doctor if you can lower the dose slowly to reduce the stress on your body, if that is a concern for you.

Sorry you don't have the answer to your question, Jacquie. That must be so frustrating. It could be that you have another GI problem causing nausea-- have you looked into food allergies or IBS? I've felt nausea from both. What other GI tests have you done?

Kristen

Melissa--i'm relieved to see your name pop up-- even though i know it doesn't mean things are ok. things sound pretty much as far from ok as they can get, aside from you still being home. i remember feeling the same association with being treated like a child when people would say things like "it's so great, kristen got a shower today!" or something like that. i would get so frustrated because even though i knew it was a huge accomplishment, i wanted to have accomplishments that didn't involve basic movement and hygiene.

I can't fathom how weary and frustrated you must feel with this setback of pain. It must be agonizing not to have a doctor guiding this or to have reliable prescriptions showing up on time. I'm thinking of you often.

love and hugs,

Kristen

So sad to hear about the stomach pain

((((((Melissa))))))) Big hug