JaneEyre9

Hi Chrissy! Sorry I'm late in welcoming you! I was relishing some time out of the house recently after a long period of being bed-bound. I'm 24, also a Clevelander...I got a degree from Case Western Reserve not too long ago and have been finishing up a masters there too. I used to drive by John Carroll almost everyday and almost went there instead of Case. I'm so glad to hear you have good support from the staff there. It's really wonderful when people put so much energy into accomodating your health needs. Also super glad to hear you decided to live in the dorms. It's a great experience! Good luck with your move in. Kristen

Hi Rachel, Welcome to the forum! Glad you have good medical support. I'm 24 with POTS, MCS (multiple chemical sensitivity), IBS (irritable bowel syndrome)...those are the biggies. I've been a graduate student for the past few years but have been sidelined this summer with POTS. This is a great place to get information and support. I'm glad you found it. Kristen

I agree with Ernie. I often get headaches on cloudy or rainy days. Fronts moving in often have strange effects on the body. Kristen

Hey Melissa! Sorry I've been MIA for a few days. Just wanted to say I'm sorry you're having trouble sleeping. I'm glad you got your infection diagnosed, though. It's so hard trying to determine if a new medication is working or not. I had similar problems recently with sleeping. Had terrible insomnia for 2 weeks. Dr. decided to increase my beta blocker to help. I've definitely been sleeping more since she did that, but not sure if it's the medicine or because of pure exhaustion! So, here's to hoping you find the right combo. I think no matter what, you'll feel better once you get rid of that infection! Glad you have a good doc! Hope we get to talk soon! Kristen

I can't say I had the exact same experience, but this winter, I got a flu virus that hung around for months when my family got rid of it in a week or two. Just want to say that I empathize with the virus that won't leave. Hope you get some much needed improvement soon. It must be hard to get the rest you need to recover when you have responsibilities and little ones to take care of! Kristen

Persephone, I'm so sorry to hear about your awful trip to the hospital. It sounds like a nightmare. On top of it you lost out on money and time with your friends. I can totally relate to that feeling. Also, there is nothing scarier than pain in your chest. Just want to say I hope you're able to get some answers to get back on track. Kristen

Thanks for your responses Carmen and Laura...I'm glad I'm not alone. It's sort of an important issue for me right now because my POTS symptoms are still not under control and the doctor's first line of action is to increase my florinef even more! If this current dose is keeping me awake this much, i think an increase would be like giving me an IV of espresso.

Hi Jennifer, I had a really long post typed out describing my experience with Dr. Fouad's hemodynamic tests, but i lost it somehow when i tried to log in. Soooooooooo, suffice it to say, i had the tests done at her office a couple weeks ago. I did not do them right after i was diagnosed with POTS because i wanted to try the drugs first. They sort of worked, but then my symptoms came back full force. That's when i decided the tests would be a good idea. Here are some posts that describe the tests in more detail (the last 4 posts are relevant): http://dinet.ipbhost.com/index.php?showtop...759entry29759 The tests are not bad at all. You get an IV and have to lie still while they do injections/blood draws through the IV. The blood volume test can tell Dr. Fouad if you need florinef. If you are low on blood volume, she can give you florinef to help you retain salt and thus water in your circulation. This might help your heart rate slow down if, in fact, it is racing to overcompensate for low blood volume. Finding this out early could save you some trouble, but it is up to you. If you do decide to do the tests, I'd recommend asking her for a follow up appointment to go over the results and so you can ask her questions in person. Hope this helps! Kristen

Hi All, I know that insomnia has been covered here before, but my question is a little more specific. Recently, over the past two weeks, I've been unable to sleep. This corresponds to an increase in my florinef dose. Could these two be related? I've never had serious problems with sleeping before this (even when i had POTS symptoms and was taking a lower florinef dose). In fact, usually i sleep 10-12 hours a night-- straight through. This new pattern is WAY outside the norm for me. Thanks for any insight you can give! Kristen-WIDE-AWAKE-and-new-infomercial-expert

Angela, Reading your post really uplifted and encouraged me. You have a gift for highlighting the important issues and giving constructive, life-affirming suggestions in order to cope with POTS. I think you could put some of your posts together into a little booklet...a guide for what to expect when you are told you have POTS. Just an idea. Very nice writing. Thanks for the words of wisdom! Kristen

Hi Amy, I had a sting like that back when i was about 8 years old. It was on my ankle..same way you described. It itched VERY badly. I think it was a hornet or a wasp. I've been stung a few times in my life, but that was the only time i remember that reaction. (I had no POTS symptoms then) I think Melissa might be right when she says it depends on what stings you. It's good to be cautious though. If it gets a lot worse, I'd see a doctor. Otherwise, i think it's just a normal (although annoying!! ) reaction. Kristen

Hi Amy, Just wanted to say that it is definitely hard to deal with new limitations in lifestyle. When I was diagnosed with POTS, I thought the medications would have me up and going again in about a week!! Reality started to sink in a month later when i was still not back at work. Like Tracy said, i started to improve and then crashed again. POTS will put you through a lot of ups and downs that make life difficult simply because you cannot anticipate how you will feel from one minute to the next. But one thing this has taught me is to live more spontaneously in the moment when i have a good day (or even just a good hour!). It must have been so hard for you after your surgeries to expect the improvement the doctor promised you and then to still be struggling. You have been through a lot. I'm glad you found this place for support. Kristen

Hi Jennifer, It's a good question about the beta blocker-- one that i've asked myself. I actually work with some cardiac doctors in my research lab, and I asked one of them about the dosing of beta blockers. He said that Metoprolol (the one I'm taking) has a 12 hour life span in the body, so taking it before bed would most likely give you more effect right when you take it, then it would wear off by morning. Also, when my Dr. adjusted my beta blocker recently, she told me to take more of it in the morning (when i was having more symptoms) as opposed to evening when i feel better. So i guess the long and the short of this is, do what gives you the most relief! Haha, could have said that in one sentance. Kristen PS- Do you take only one dose of beta blocker per day?

Hi Sallyann, Glad you are adding your voice to the group! It's good to meet you. I look forward to reading your posts. Kristen

Hi Jennifer! I'm so glad you found this site. I am from Cleveland, OH and was just recently diagnosed with POTS by Dr. Fouad in May of this year. This forum is a great place to get all your questions answered and to feel like you're not alone in dealing with these nutty symptoms (and emotions!). As far as your heart function goes, it's probably fine. But if you are very worried about it, you can always ask your primary care doctor. I had the same concern about my own heart and was reassured by a simple echo test which revealed normal heart function. It sounds like your resting heart rate is perfectly normal on the beta blocker. In terms of activity, i share your frustration about heart rate. Mine is in the 80's just sitting up doing nothing. I usually limit my activity based on my other symptoms (dizziness, fatigue, brain fog, nausea, fainting) rather than heart rate. I think it's more about your own comfort level than numbers. Sorry you have been given a new diagnosis with little medical help, but glad you found this place...these wonderful people have made a huge difference in my life already! Kristen

Rita-- I have to agree with you that my POTS symptoms are *much* better managed at home too. It's much easier for me to lie down if i feel faint and I also am better hydrated and cooler at home. Plus I eat better and sleep better! I think that's probably the case for a lot of people. In terms of multiple chemical sensitivity, it's another syndrome with a different cause. You're right about there being long term effects of mold (increased sensitivity to chemicals is one of the major long term effects), but when you have MCS, getting away from a trigger (bad environment) eases the symptoms a great deal. It's an easy way to differentiate between POTS/CFS and MCS. Patti-- Glad i could help with some information. Also I'm glad to hear that everyone else in your family feels well in your house. That's very comforting. I hope Dr. Dearborn can give you some good information. He deals mainly with the respiratory symptoms of exposure, though I'm sure he knows of the other symptoms. I've never met him personally, but i believe my mom went to him when she had her breathing problems in the house. Keep us updated on how Chrissy does at college. That is an exciting transition...one that i enjoyed very much, despite the health hassles

Hey Melissa, Just want to say I'm thinking of you at this late hour. Hope you are able to sleep tonight and that the pain lessens. Talk to you tomorrow, Kristen

Hi Emily! Thanks for the very warm welcome! Just want to reiterate that mold testing by a company should be the very last step of your own investigation. It's expensive and is used primarily for insurance claims. To see if your environment is affecting your health, the first thing you should do is try to remove yourself from the environment like LisaColumbus said she did. As far as what to test for, I think the group you contact can make the best recommendations. I know we tested for mold (which my dad says is a blanket test covering all types of mold that might be growing) [stachybotrys (the queen mother of all toxic mold) penicillium, aspergillus...and others]. I know we also had our air tested for bacteria levels which can increase with high amounts of moisture in the air. Testing for off-gassing of chemicals is another test, I believe. We did not have that done. As far as finding a local group to do the testing, i would just recommend finding a group that has a good reputation and has been doing this for a while (American Industrial Hygiene Association is a good place to start--links below). I've been told by friends that you can get "do-it-yourself" mold testing kits, but i don't think they would be very reliable. Also remember that not all mold is toxic mold. Most times it can be cleaned up with some bleach water. Be careful before attempting cleanup. Be sure you know what you're dealing with first. Here is a page of links that might give you more info on local resources: http://www.fungalresearchgroup.com/new%20r...onal%20help.htm Kristen

Patti, Please do not feel guilty about your daughter's health. One thing i want to mention is that new building materials may off-gas quite a lot at first, but over time, the levels of chemicals decrease. We've been living in this condo for 5 years now and after the first summer (when it was new) I was able to function normally. I would not blame yourself for wanting to live in a new home. Also, if you and other family members feel ok, it's not likely related to your house. It's very unlikely to have the kind of situation that my family went through. However it's good to investigate if you have strong suspicions. One thing i would strongly suggest before undertaking any kind of testing or doctor visits: Have your daughter live in another place for about a week. If her symptoms remain the same, then there is very little reason to pursue air testing. When she goes to college, like you said, you will be able to find out if the problems are environmentally related. Air testing is very expensive and my parents did it only because of two things: 1) All of us felt significantly better after staying in another environment 2) We could smell musty air and saw mold growing on boxes in our basement. These are the local groups that we contacted: EA Group 7118 Industrial Park Blvd., Mentor, Ohio 44060; Ph: 440-951-3514 Indoor Environmental Services - M.S. Crandall Group, Inc. 4302 Floral Ave., Norwood, Ohio 45212; Phone/fax: 513-531-7110 Clayton Group Services, Inc., 160 Fieldcrest Avenue, Edison, N. J. 08837; Ph: 732-225-6040 My dad said: "We hired Crandall and EA Group. Nationwide hired Clayton Group. I believe that Clayton operated out of Akron, but I was informed that they will go anywhere." The local Cleveland doctor that deals with respiratory issues for mold exposure is Dr. Dorr Dearborn at Rainbow Babies. http://pediatricpulmonology.case.edu/faculty_dearborn.html The doctor i saw in Albany, NY is Dr. Eckardt Johanning. http://www.fungalresearchgroup.com/new%20home.htm Like I said, I would strongly recommend doing some research, checking your home for signs of water damage and allowing your daughter time apart from the home before becoming worried. Please feel free to email me if you have more questions. I understand the concern you have. My mom felt the same way. kristen

Dayna, This is definitely an important issue to check out-- especially for your kids' health. I lived in a home for 14 years with my parents and it had hidden water leaks in the walls of the house. We had water in the walls of my bedroom, the walls of the bathroom, and in our basement. Because we had forced air heating and cooling, our house was sealed tight. We rarely opened the windows even in summer because of my allergies and asthma. To make a long story short, the water damage over time caused toxic mold to grow, and the toxins were continuously being recirculated in the air through our whole house. I was the sickest because i was sleeping in the worst room, but my mom and dad had symptoms too. My mom thought my room smelled musty, but there was little indication of visible mold other than that. When we had air testing done by a professional company, they found our air was very seriously toxic! When they broke open our walls, we found out we had several types of toxic mold growing, making our house uninhabitable. We had to move out immediately. I felt better instantly being away from the house (and surprisingly my symptoms were not respiratory even though my mom's symptoms were). It is not something fun to face, but i highly recommend getting testing sooner rather than later. After that serious long-term exposure, my whole family was more sensitive to chemicals than before, but it didn't help matters that we had to stay in a rented hotel room treated with pesticides and then got rental furniture treated with pesticides. Then i went to college and got even sicker because they sprayed my dorm room with pesticides! I don't want to say this to scare anyone, but to make you aware that your home (or office) can be a trigger for some symptoms that mimic CFS and POTS. Also, MichiganJan is right...new homes can be the worst for people because of the formaldehyde off-gassing from new carpet, paint, and building materials. When we moved into a new condo after all of the apartments, I was sick for a good year before things started to settle down and the levels of chemicals decreased. Anyway, Dayna, good luck if you decide to do testing... This is an issue near and dear to my heart because it has completely changed my life and my family as well. If you need to get testing done I can tell you some good companies to check out. Also i can give you the name of a doctor who treats people with environmental exposures. Kristen

I just want to thank Evie for this post and for Carmen for the affirming response. I have been feeling the same way as Evie but not able to put my feelings into words. It is so hard when you "look healthy" to express to people that you cannot do something. Then there is that self-doubt that kicks in..maybe i could do it... Then you try to do it and remember your limitations. I struggle all the time with pushing myself to do as much as i can without going over the edge. It's hard when that "edge" seems to be moving all the time. Kristen

Just want to say that I sympathize. I was flat on my back for over a month and gradually things started to improve. When i was actually able to drive and go to work again, i tried to take it slow, but ended up feeling pressured to "act normally" and went beyond my limits. Finally after 3 weeks of this my body said "no more" and I went back to square one again. I'm still trying to get out of the hole, but once i do, i know i won't take it for granted and feel cured like i did last time. From what my doctor friend told me, this illness is a series of ups and downs and we just have to hold out hope that in the future, there will be many more "ups"...maybe a permanent up! I think one of my problems is letting other people's expectations of me rule my life. I'm trying to learn that i can't socially or professionally make everyone happy. I just have to do what I'm capable of doing. It's really hard to do. Anyway, just saying that I understand, and it is very frustrating to deal with roller coaster health. Kristen

Dayna-- let us know how bio feedback works for you if you try it. I understand your irritation about the doc's reaction to your autonomic disfunction comment. I've had things I've said received the same way. Thanks for the interesting link, Patti! Wouldn't it be nice if we could get mental control over our heart rate and BP!? Ah well, I'll settle for being able to relax and go to sleep at a decent time. Kristen

What an accomplishment! Finishing that last paper and expecting two A's is a wonderful feeling. It's even more satisfying when you know you've done it in spite of health obstacles. Sounds like a lot of discipline went into your study habits too. Best of luck on the presentation...those always send my heart a thumpin'. Kristen

Never seen or heard the name before! I'm eager to hear what you have to say about him, though.