JaneEyre9

Hi Evie, This stuff makes me want to be a doctor too. Too bad my body laughs at things like 80 hour work weeks. As for the erratic pulse, I have that too. Not sure if it's related to POTS, but it's a strange thing that i noticed. It's not technically the T in POTS (Tachycardia). Tachycardia, by definition, is a heart rate that exceeds 100 beats per minute. So in other words, a very fast heart rate. When you say first beat and end beat, i assume you're talking about measuring blood pressure. And you're right, the first beat they listen for is the systolic beat and the second one is the diastolic beat. I've never been told that my diastolic beat was weak, but that doesn't mean it isn't as i usually have to be assertive and ask for my blood pressure in the first place. I also had the blood volume test (that Melissa descibed) done recently. She's right... it's not bad at all even if you're afraid of needles. They just stick you once and that's it for the rest of the test. It's not uncomfortable and i was thrilled that i was able to lie down the whole time. I also had another test done after the blood volume test that measured the speed of my circulation. If you have overly rapid circulation, that can cause POTS symptoms as well. These tests, i believe, just narrow down what exactly is causing your symptoms. For instance, it was determined during my tests that I have very rapid circulation but not as much of a problem with venous pooling in my legs. This helps the dr. know that i need more beta blocker rather than stronger support hose. Anyhow...that's the scoop on testing. Not at all bad. I think the nicest medical test i've ever had besides an x-ray. Kristen PS- Steph-- i want what you're having!! Anything that would let me get into work at 8am-- sign me up! Very interesting about the Procrit. Definitely will keep that in mind.

Hi Tracy, I felt the same way when i joined. It keeps me feeling hopeful when I'm stuck here in bed all day. And it also reminds me how lucky i am on the days i can get out and enjoy this life. Welcome and nice to meet you! Kristen

Hi Evie, My main triggers are usually pesticides or places with extensive mold/water damage. I react almost instantly to these things and have since my initial serious exposures my senior year of high school. No real test was needed to prove this. I would always get sick instantly when near a trigger and after recovery time, feel well when I was away from it. At my most sensitive, everything would set me off... Some of these triggers can include: Cigarette smoke, car exhaust, photocopier toner, gasoline, perfumes, new carpeting, building materials, new paints, or anything that would off-gas formaldehyde, chlorine, or benzene among other toxic chemicals which can be damaging. There's no test for sensitivity to these things because it's not like an allergy where you could get a skin reaction. They aren't healthy for anyone, but most people can tolerate them with no noticeable side effects. Someone who is sensitive could get mental clouding, muscle aches, swollen lymph nodes, fatigue, dizziness...your basic fun package of flu-like symptoms. Sadly, it's hard to avoid these things in everyday life...especially when the county decides to do city-wide pesticide sprayings, or when your next-door neighbor flea-bombs their apartment. Even places like Wal-mart, a movie theater, or a grocery store can be routinely treated with chemicals. To take care of myself, I try to eat organic fruits and veggies. We try to use chem-free/dye-free soaps and cleaners as much as we can around the house. We hepa-filter our air vents with replaceable filters. All this can't protect me from the world, but it certainly helps cut down on my MCS symptoms. Avoid avoid avoid. I wish that worked for POTS too, but sadly, no. Hope this helps. Is there any reason you are specifically sensitive to chlorine? Kristen

Patricia, I understand where you are coming from... Just wanted to add a different perspective-- My mom was diagnosed with Multiple Sclerosis before I was born. I'm very, very grateful she made the choice to try to have me. Though I have health problems (some genetic, some not), I don't have MS yet. I do have a mother who understands chronic illness. She is one of the kindest and most compassionate people I've ever known, largely because of her own experiences with "invisible disability." Like Sally and others have mentioned-- illness can bring about greater and deeper blessings.

Hi Evie! Glad to meet you. Also glad to hear you've been improving so that you can study some now. I have POTS and also have trouble in the morning as you described. It's very very difficult for me because i'm so dizzy early in the day. It takes me so long to get ready also because of brain fog and having to lie down after a shower because i feel faint. I've learned that it's much better for me to shower at night to avoid this. I don't battle the muscle aches as much anymore. I do have those as a symptom of MCS (Multiple Chemical Sensitivity), but that is now under control as long as i avoid my triggers. It's good too meet you, and i agree that it's nice to finally find people who understand me saying "my throat swells sometimes" and don't tell me to get a strep test. Kristen

Well, Jane's my heroine-- She's faithful to God, and trusts Him regardless of how hard it is or how much it costs her. I sure can't live up to that, but i admire it in her character. Plus it's quite a passionate, moving love story. I read the book while I was going through a bad case of mono back in '96. Since then, I've used the name on various online things. The 9 (old softball number) just got tacked on because "JaneEyre" was already taken for an email address. I love persephone's story. I had forgotten the exact myth but remembered it had something to do with the underworld-- very interesting analogy for how it affects your life. I can relate.

Just wanted to add my empathy-- I'm 24 and trying to finish my Master's which has been going on for the past 3 years. It's a real struggle. I'm trying to decide if i can even handle one class this semester. I haven't been able to drive most of the summer and my school is a 50 minute drive from home. I think i have my answer right there, but like Persephone said, what if i get better and regret not doing it? It's SO hard to tell. Web-based classes sound like a good idea. My cousin did that because she was working and taking care of a child (she's doesn't have any illness). She seemed to like the web-based learning because it let her stay home. Also, for some of my classes in college, the university video taped the classes and allowed me to watch them at home. Maybe that is an option that will make you feel more a part of the class. It worked well for me. Keep us updated on what you do! Kristen

Dayna, What you are feeling is really tough. I felt something similar recently. A co-worker of mine used to be in the same position as me at work. This summer though, I spent three months in bed sick while she spent three months finishing her degree, completing a successful internship in california, and presenting her research at two national meetings. When she sent me pictures of her hot air balloon ride to "cheer me up," i just cried. It's hard, but Michigan Jan is right, our feelings can't be helped. We can only choose how we respond. Nina and Julie are right on the money-- we just have to focus on what we can do to uplift ourselves. Just wanted to say you aren't bad and you aren't alone. Kristen

Hey Dayna-- I smiled when i read your post because i thought being pregnant might conveniently help my symptoms too. Sadly, i have a husband to find, a wedding to plan, a degree to finish, money to make, and a home to buy before that's even and option. Guess I'll be passing out through all those milestones unless the magic pill comes out one of these days. Kristen

Hey Dayna, I have definitely noticed that I pass out around ovulation and before/during my period. Not sure if that's any comfort to you since you said you don't think it's related to your period, but the hormones may be shifting anyway. I'm curious how much luck people here have had with stopping menstruation via drugs. Anyone tried it as a treatment? Does it help POTS symptoms? My doctor was not keen on trying it with me. Kristen

Hi Persephone, I'm new here to the board, but when i read your posts, I had to let you know that my family has been treated the same way (due to my grandpa's illness) at hospitals and nursing facilities for the past 5 years. It is terrible that health care workers can be so cold to a family in crisis and on top of that, they neglect the patient and then cover up their misdeeds. It is so hard for me to understand why or how people can do this. I can't tell you how many times my mom has confronted nurses and doctors for obvious neglect/harmful treatment of my grandpa and has received back cold insolent remarks. Sometimes the confrontation just makes the treatment even worse! My heart goes out to you and your family. Kristen

ANSGuitar, Welcome to the site. I'm new here as well. Just wanted to say that your scientific curiosity is great. Hope you get the answers that you are looking for here. Nina, I was wondering if you (or others) know of any doctors doing basic science research on ANS disorders or POTS. I know there is clinical research being done at many places (like Vanderbilt) but basic science is a little harder to track down. I'd like to find a PhD project in this area. Thanks for any info you have, Kristen

I can relate to not wanting to take more medicine, but at the same time, anxiety can be crippling. You mentioned stomach problems, and I know that my IBS triggered a lot of my anxiety before it was diagnosed. Once my symtoms were under control, I felt my anxiety decrease and did not need any medication for it. I think it's because i felt less "out of control" once my stomach quieted down. It can be so stressful just worrying about how bad the attacks will be, when they will come, how much work you will miss...etc. I don't know if this would work in your case, but it's worth figuring out what triggers your anxiety. Just know you're not alone...i struggled with anxiety for a long time. It's the worst.

Hi Marie, Glad you decided to join. I'm new here too. Just wanted to say that I have asthma as well and have gone off of my asthma meds since I was diagnosed with POTS. I think they were reasons why my symptoms got so bad to begin with. You are wise to question the Mestinon if you read that it has side effects. I've never taken it, but you should definitely bring it up with your asthma doctor (do you have a good one??) I wish i had known more about the side effects of my meds. Kristen

wow. that is ridiculous. did she write you a prescription for tylenol? i don't know whether to laugh or cry. sorry, morgan, that's definitely medicine at its worst. Kristen

Hi Katherine- Just wanted to say your picture of the mountain and lake is gorgeous! I sat and had myself a little vacation right in front of my computer just looking at it ;-) Just like a post card. Thanks for posting them. Kristen

Thanks for the info, Morgan! Man oh man, an ablation is the last thing you want to go "oops" on! That is really terrible!! Also, I can totally understand the relief of getting back an abnormal test. I've been getting back normal blood and urine tests for years. I wanted to scream "This doen't mean I'm crazy! It means you're testing the wrong thing!" One time, after telling a doctor that I was dizzy, tired and pale all the time, she told me to "take a vacation and get a tan." Kristen

Wow, this place was made for me! A whole group of people who understand POTS and love Jane Eyre! (Not to mention all the great Cleveland folks ) Thanks for saying hi, Stacey! Angela-- glad you are making plans for college. I didn't realize the importance of having an advocate when i first entered college. But it made all the difference in the world.

That's a real let-down, Ernie. Sorry to hear it. Does Dr. Grubb have health problems of his own? I don't know much about him, though i've read his name around here quite a bit.

Hi Morgan, Sorry to ask something that's probably been talked about before, but what are your symptoms exactly? What made you go to an endo? Glad you are getting some results! Good luck with the other tests. Kristen

Corina-- Nice to meet you. I have the same issue of wondering when my POTS actually started. My first complete fainting episode was in the fall of 04, but other symptoms have been long standing. BuddyLeesWife-- Your husband is lucky to have someone so supportive. It touches my heart when i read posts from people who are here simply to support a loved one. As for the Eyre Affiar-- I've never heard of it! I will have to do some investigation. But something tells me if it messes with the actual Jane Eyre plot, I might raise an eyebrow. Nina-- And now for the answer to the Jane Eyre trivia question of the day! ::drumroll:: Elizabeth Taylor (as helen)!!! Please, no applause. I looked it up on google. The only movie versions i've seen are (in order of my liking them): The A&E version with Samantha Morton (or should I say Morganomorton ) and Ciaran Hinds; the Timothy Dalton mini series; and lastly the William Hurt one from 97. Not such a fan of that last one. Looks like I have some more Eyre to watch Thanks for the info on EDS. It sounds like you have been very lucky with the healing from your surgery under the circumstances. It's amazing when we have those moments and realize what "could have been." Really puts things in perspective. As far as my symptoms go, I've always bruised easily (almost always unexplained bruises on my legs and severe bruising from minor events) but i don't think it's as bad as you described yours to be. Just trying to rule things out right now, so it's good to know all I can about stuff like this. Louise-- Hello! I'm glad Rachel is looking at colleges. Case is really good for tuning in to disabilities. I was not yet POTS diagnosed when I went through undergrad. My main problem was Multiple Chemical Sensitivity (due to severe mold/chemical exposures in 1999). I had trouble being in certain buildings on Case's campus that were fine for "normal" people. I would have a reaction almost as soon as i stepped in the building. (Mainly confusion/memory probs and flu like symptoms that could keep me down for days) Anyway, as Melissa has mentioned, there is a special service at Case for people with disabilities. The coordinator has disabilities herself, so she is empathetic and is an advocate for students. I had a good relationship with her. Most classes were simply moved into "safe" buildings for me (some I watched by video tape). Needless to say, there were a lot of bumps along the way, but i managed to stay full time (12 credit hours) the entire time. For Rachel, I think the hardest part would be the walking, like you said. Usually the walk to class from a dorm is about 15 minutes. I didn't live on campus, so i had a bit shorter of a walk (about 2 mintues) from the parking garage. Feel free to email or post any questions you or Rachel have. I've written a ton already! Patti-- I think that it's a great idea for Chrissy to live at John Carroll. I had to commute about 50 minutes for all my years to Case. The 8:30am classes for my major were a nightmare-- especially in the Cleveland winter! I still don't really know how i did it. By the grace of God. Mornings are bad for me too, so i know how she feels. Just thinking about it now makes me pale! As far as Dr. Fouad goes, after the initial diagnosis i did not have much communication with her (other than phone messages through the nurse). After two months of terribly slow improvement I had another LOC episode and went back to square one. I couldn't work or drive or do anything, so i was able to get an appointment (a week after LOC). She did the hemodynamic studies on me (a week after the visit) and my mom was the one who asked that we SEE her to talk about the results rather than just get the print out in the mail. I was too tired and sick to think about it. I'm still in the early stages of this diagnosis, so we'll see how the follow up goes. I've been out of work most of the summer, so I'm hoping to get some quality of life back eventually. Well I think I've written quite a bit here! Sorry for the length, but i'd much prefer to write here rather than work on my thesis this afternoon.

Mom4cem- thanks for saying hi! Steph- Nice to meet you and thanks for the info about your background. Sounds like you have really had a rough time. I'm sorry to hear about your ankle surgeries. It sounds like you have a great attitude for recovery though! I know that water and salt are a POTSy's best friends. The exercise part i'm having a hard time with. Like everyone else, it seems, I used to be very active. Then I got knocked down and can't really get back up again. (i need to sing some Chumbawamba) I take little walks on good days, but it seems they don't do much good. As far as getting an underlying cause pinpointed, I'd prefer there wasn't anything else to uncover, but my mind sort of wants to know "why does this happen?" Also don't want to ignore anything that could be underlying. Anyway, thanks for the info! Morgan! A Jane Eyre Buddy! I'm so glad you share my love for the book. You know, there was a musical of Jane Eyre at one time on Broadway. The songs from it were outstanding. Anyway, thanks for saying hi! Never cranky, huh? Me neither. Patti- Glad to know there are other Clevelander's around...like Melissa said- it's a small world. Is your daughter able to go to school? Does she still live at home?

Nice to meet you, Nina and Rita! Thanks for the welcome. Nina, you brought up something I'm curious about-- a cause for your POTS. I've been wondering if there is something behind my POTS diagnosis other that just "some virus" attacking my nervous system. Did you have your diagnosis of Ehlers-Danlos III right away, or was that something your doctor investigated after pinpointing the POTS? I'm going back to Dr. Fouad on Thursday and want to make sure I cover all the bases when I ask her questions. Thanks for any info you could give!

Hi Patty! I whole heartedly agree about finally finding a name! It's horrible to not be able to function and have "no reason" for it. Glad to hear you have a good doc and family support. I'm new here too...just wanted to say hello! Kristen

Hi Sophia, I'm so sorry to hear you and your family are going though such a rough time. My mother has been the only caregiver for my grandfather with dementia (among other problems), and it is probably one of the hardest jobs physically, not to mention how tough it is emotionally. My prayers are with you as you work with the lawyer and in finding the right doctor. Kristen