thejohnsongang

Here are a couple of sites that I have found on these vests. I have not checked them all out...just did a quick search for them. If anyone knows of a good site for one.....please let me know. http://www.stacoolvest.com/ http://www.arcticheatusa.com/ http://www.glaciertek.com/ http://www.texascoolvest.com/ http://www.coolsport.net/index2.html

McCormicks has a line of grinders that I like. They do have a sea salt one that I use all the time. I keep regular salt for the rest of my household, but I use only the sea salt. I just think it tastes better and I use it in EVERYTHING I cook.

Per Tanzanite's post (extreme heat intolerance) I would like to know if anyone here uses a cooling vest. I have thought about getting one, but not sure it the price would be worth it. If it really works then yes I would spend the money, but what if they don't work well enough??? then I wouldn't want to spend that amount of money on one. Would love to hear from all of you about this one.

If you do a google search for cool vest you will get a lot of hits. Here are a couple of sites to check out.... http://www.stacoolvest.com/ http://www.arcticheatusa.com/ http://www.glaciertek.com/ http://www.texascoolvest.com/ http://www.coolsport.net/index2.html I have a lot of trouble with the heat..anything about 72 and I start having major pots symptoms. I talked to my cardio about using one of the vest and he said he does not have any patients with them, but would be willing to work with me if I wanted to try them. My husband and I have been talking it over and I haven't decided yet. Not sure if I want to wear a vest all summer, but it would give me more mobility with the weather and I won't freeze the kids in the car with the ac on high. You might want to consider one. I hope you find some relief. Nolie

Welcome Elizabeth, So sorry to hear about your son. The news is hard to take for any parent. I know, mine was just dx this month but she is 15. I know how it is affecting her life, I can't imagine what you are going through with a 7 year old. The heartache is the same for all of us with children that have POTS or any of the dysautonomia disorders. Now sure where you live...east coast, west coast, middle.....but there are a lot of excellent doctors out there for our kids. Julie was right about Dr. Rowe at John Hopkins. He treated my daughter when she was 6 for food allergies and thanks to Julie's info Anna just seen him march 6th and was dx with pots. He is wonderful. We are lucky enough to live about 1-1/2 hours away from John Hopkins, but he still does a lot by phone/e-mail to save you running. He is wonderful and Anna really likes him as well. The point being, no matter where you live, I'm sure someone on this site will recommend a doctor for you to take your son to. Most of us have been through the ringers with doctors and know who to see and who not to see. Anyway..before I ramble to long....glad you found us and hope we can help you in anyway you need. Nolie

In what state do you actually live and go to school? Maybe between us all we can do some research and find out who is out there to help you and what avenues to take. This is an frustrating disease and it hurts even more when you are bullied by schools and or staff. Have your parents talked with the school? Requested an appeal or talked to the US dept of education? Here are a couple of sites to check out. Hope some of them help. Hang in there..we are all here to help if we can. http://www.ed.gov( This is the us dept. of education) http://www.usdoj.gov/crt/ada/cguide.htm#anchor65310 (this is a great site as it is the disability rights law per the dept of justice) Here are some other sites to check out. http://eric.ed.gov/ERICWebPortal/Home.port...900000b801311b8 http://www.questia.com/PM.qst?a=o&se=g...mp;d=5000394113 http://eric.ed.gov/ERICWebPortal/Home.port...900000b800976fc

My daughter is soy and milk allergic. The following is her favorite...chicken veg. One jar of Prego speg sauce (check label for soy) 1 can of green beans 1 can of corn 1 can of diced white potaote 1 can sliced carrots 2 cups water 1/2 to 1 lb diced up cooked chicken 1/2 cup rice salt/pepper to taste about 1/8 cup sugar to taste ( cuts the acid) Cook everything together but the rice for about 1 hour. Add rice and let cook for 10-15 min. Easy, quick and healthy. My daughter loves this and so due her friends. Hope you like.

Sorry to get around to posting to you so late. I have been out of it for about a week and am now just starting to catch up on the posts. My daughter was just dx with POTS on the 6th of this month. She is 15, turning 16 in May. She had been missing a lot of school due to illness/fatigue. I got a letter from her PCP and a letter from her POTS doctor explaining her illness and limitations. I requested a Section 504 (which you can do in any state). It is accommodation's for her while in school due to her health. She can stand, lay down, take a walk, put her head down, sit next to a window or air cond. unit, take meds in class, keep water with her at all time, eat snacks and it also gives her extra time for test/exams no matter if they are chapter test or finals. You should check into this through your doctor and school. You have made it so far in school and by law they can not discriminate against you because of your illness. They have to provide you an education that works with your illness and they "have" to accommodate you. It is part of the disability act. I hope you can find what you need here with us and that you get to finish your education. Get your parents involved to help advocate for you. Together all of you should reach a common goal. Sorry to hear that you have POTS, but now it learning about it and controlling it that is important. Good luck. Research Section 504 and educate yourself on it before approaching it.

I read this post and thread with great interest. I had just watched a show on TV (not sure of the name) but it talked about people that are "sensitives". I know this might sound like phyco babble to some, but it really made me think. There are of lot of people that are called "sensitives" due to their human nature. I know that I am one for sure. I am sensitive to medications and can only handle in small doses, I am sensitive to stress and emotion and can only handle in small ways, I am sensitive to others and what they are thinking far to much at times, I am sensitive and can tell from my gut when something is wrong with my kids, husband, mother etc. , I have been know to be sensitive enough to have what some people call premonition's about what is going to happen. And the list goes on and on, hot/cold, foods, smells, tastes etc., etc., etc. My thought on this is: Are we ( all dysautonomia suffers) "sensitive" people who feel more than the normal population and are more aware of when our bodies do not feel right? And by doing this are we more aware our own problems more so than the general public? There is a whole untapped population out there that suffer from pots and it''s related symptoms that never receive treatment and live their lives out just fine. Then there are others (like us) who suffer such severe symptoms that we have trouble with daily life. Is it a medical issue or is it a emotional/spiritual issue? You hear a lot of psychotherapists talk about being in touch with your inner self..are we to in touch with our inner self? Yes being mostly women...we are the heart and soul of our families and do carry a lot of stress and problems on our shoulders...as women we have done this for hundreds of years...why now is this just coming to light. Were women perceived as just crazy years ago and this new field of study is justifying our weaknesses. Or were they "sensitives" that just didn't know it? No...I'm not crazy and neither are any of you...but years ago thats what we would have been diagnosed as. Men or women..it wouldn't have mattered. Now it is a true disorder that is recognized by most, but not all. Anyway, before I turn this into a 2 page reply.....Can we just be people that are very in touch with our inner self and be more aware of what is going on than most people? A "sensitive" by true nature? I would love to hear other peoples thoughts on this. If you don't want to reply in this thread, please e-mail me at thejohnsongang@adelphia.net.

Mack's mom...drop me an e-mail (thejohnsongang@adelphai.net). You are the one who gave me Dr. Rowe's new contact info a couple of months ago. Thank you so much.

Thanks for all your support and well wishes guys....It sure helps. This site has been a god send for me many times over. I did talk to my daughter yesterday about joing the teen/youth version of this just so she can talk with others her age to get the same things I get from you guys. It has been a long hard road with Anna, but I wouldn't change it if I could. Even though I get mad and angry at the diesase's that afflict her..she is a wonderful person because of it. she has such empthy at at 15. Anna was very ill when she was born and at age 6 I almost lost her and then Dr. Rowe got her straighten out..Food allergies, she had EG. She has been a failrly normal child since then and had seemed to outgrow her allergies. Then over the past couple of months the dizziness, the headaches, the allergies acting up and sleeping forever....Normal 15 year olds don't sleep that much. Finally some answers..Not the one's I want, but answers none the less. Now I know what I'm dealing with and can educate her on how to listen to her own body to know what she needs and when. She has always been very active in sports (SOFTBALL) and this is something she will have to take in stride. I have set up special accomidations at school for her, but none that set her out from her peers. Water with her all the time, salt tabs ever 4 hours, being able to get up and move when needed or go lay down when needed, eat a snack every couple of hours, etc. The school has been helpful so far. She will have to gauge herself with softball as she plays both high school and tournament ball over the summer. She's the starting second baseman on her Varsity team..Yes!!!Varsity in 10th grade. Doesn't happen to often. She also plays 2nd base on her tournament team. Her coach for tournament ball is awesome and we have been friends for about 4 years...he will have no problem making accomidations for her, we just need to get the school and the high school coaches to work together to make the accomidations for her. But of course when I can I will and If I can't then Dad sure will. He goes to all of the games and practices and helps coach her tournament team. The anger is going away and I'm going into fix mode. Making sure everything is in place for her..her medications are on time and her accomadations are always there. Mommy mode is working finally after the shock of learning everything. We also moved into a large house last month with my mom and uncle (see just finished moving on chit-chat form). That will help alot having extra hands and minds around. My husband has been bearing the load of everything since I took sick years ago. I became unable to work last september and poor hubby has done it all. It helps to take the load of of him some. He is a wonderful man and works his butt off for all of us. He is my soul mate and best friend. Now he will fianlly get some time to rest as there are other people to help. I pray to god every night to make Anna's life easier than mine. She wants to go to college...she want's to be a special education teacher. She currently is the vice president of the best buddies club at school, which is a group that works with and supports special needs kids to keep them in a normal high school setting. Each member of the group is assigned a buddy to look after them. They help them with their school work, social problems and such. They also go out in public together to do social events and talk daily by phone. It's a wonderful group that Anna got into years ago and loves. It's what made her want to be a teacher in the first place. We are not changing anything for her. We will see how she does with meds and with learning to listen to her body before we decide if she needs to slow down any. Sorry to ramble on...having one of those days were things aren't all there so forgive me if this doesn't all make sense. Thanks again for all the support.

Our household has always been a village. Even when we did not live with family, family was always around. I did not have the privilege of knowing my grandparents..they died when I was very young. My mother and uncle are what is left of my side of the family besides siblings. It has always been very important for me to make sure my kids spend alot of time with grandma. She has also taken on the role of always being there for them, either in person or by phone. My mom lives for her children and grandchildren. Privacy isn't an issue. The basement is an in-law apt with it's own kitchen, bath and laundry so we do have seperate "houses" per say. It's just nice knowing that they are right down stairs whenever I need them or the kids need them. My husband loves my mother to death and it is working out very nice. He lost both of his parents to cancer within a 6 month period a couple of years ago and my mom has filled that void for him. We are a very close bunch and eat dinner together every night. It makes me feel like I did when I was a teenager with everybody home. And yes IT does take a village to raise a child. My mother has insite into things I don't and the kids get to hear stories of way back when as well as many photos to look thru so they are very rooted in their own family history. It has been the best decision of my life so far I think. Everyone working together towards the same goal...to give the kids the best we can, while we can.

My daughter seen a CFS specialist yesterday...(see daughter dx with pots) and she has some form of EDS with hypermolity as well as delayed gastric empting and he was certain that her cause of delealyed gastric empting was due to food allery. Her milk allery causes her to be delayed when empting her bowels. Sometimes upto 3-4 days for a bowel movement. Just a thought for you to check into as well. He said that the pain in her upper left stomach was due to the milk allergy as well. If you have both...do a little more checking.

Thanks tearose. Our unpacking is all done. My husband and alot of family members and friends moved and I got to sit and tell them where it all went. It was actually nice to sit and not have to lug all that stuff around. Our kids were responsible for their own rooms. They carried, unpacked and put everything up. The older one helped the younger one when needed. My husband did everything for our bedroom and living room and I did the kitchen over the course of 3 days. MY DOMAIN !!! for as long as I can keep it that way. We ate off paper plates and used paper cups until I got it unpacked. My mom cooked dinner for us on those nights. Over all it was a nice transisition. The rancher is nice...no more steps and it saves alot of energy as well as helps keep the tach down. For keeping things and throwing them out....our rule of thumb is 1) if it is not used within 1 year it goes out... 2) our kids rooms get the once over by us every 3 months to clean out broken toys, lost pieces to games/puzzles etc. 3) My husband is a stickler for the rules and 4) I am a neat freak and everything has it place. If it doesn't fit..we get rid of it. We belong to a website call Freecycle.org They are a worldwide internet site that you can post things on to keep usuable things out of the landfill/trash. It comes in very handy. I got 2 beautiful corner cabinets that someone no longer wanted and they were in beautiful shape. They are my favorite things in my LR. You should check it out for your area. It's easier to get rid of things when you know someone else can use them instead of knowing it is in the trash.

Took our daughter to John Hopkins Hospital yesterday to see CFS specialist ( Peter Rowe)for her symptoms. Come to find out my gut/mother feelings were correct. She does have POTS as well as CFS and her food allergies (EG) are acting up again. I was devestated by the news. He also dx her with ADHD..needless to say her medication list is pretty long. We spent 4 hours with him going over everything and doing testing. He is a wonderful doctor. Anna had seen him before when she was 6 for her food allergies. He was a regular pediatrician then. His son also has POTS/CFS as well as ADHD so he understands it from a parents point of view as well as a physician. This disease is bad enough for me to deal with and I have endless days of depression/anger for having it and for it robbing me of my ability to do things with my kids like I want/need to. Now I have to deal with the fact that I have passed it on to my daughter. Does anyone else feel this way? Have any of you unknowly or knowly passed it on to your kids? How do you deal with it and not feel guilty? Her dip in BP and spike in HR ( a 48 bpm increase) was larger than mine, but due to her athletic abilities she tolerates it better than I do. He had her do a different version of the TTT where he had her lean backwards aginst the wall for 20 minutes and checked her BP and HR every 3 minutes and checked her symptoms....at 17 minutes she got so dizzy she hit the floor...but did not actually pass out. He stopped the test then. It was very hard to me to listen and learn about her...but at least I am educated on the disease and know what we are dealing with how to help her. I am just so @#%^& mad and angry about this disorder...ERRRRRGGGGGGGHHHHHHH!!!!!!!! I just want to scream sometimes. Just needing to vent to people who understand. Not many in my world do except my husband and mother...and they are a god send to me. Anyone who can share their wisdom with me...please do so.

Just finished moving over the weekend. My husband and other family/friends did all the work...I got to sit and tell them where everything went. What a week. We started on the 20th and the last car load was moved last night. Everything that we could live without was packed and moved during the evenings and slowly unpacked. The furniture was moved on Saturday...before our snow/ice storm and then odds and ends still coming in until last night. This has been a hard week for me. Just adjusting to the new house and new layout of it. Due to my health conditons we found a very large house that is a rancher with 3 BR upstairs for our family and an in-law apt with 3BR in the basement. My mother and uncle moved in downstairs. Between us all the kids will be well cared for. My mom is 70..but a real kicker for her age. She helps with the kids and with me on my bad days. It's nice to know that when my husband goes to work that my mom and uncle are downstairs if I need them. I have had to call on my kids in the middle of the night a couple of times and it's just to much pressure for a 15 and 11 year old to deal with sometimes. The plus side of it is I get my mom's home made bread and rolls more often...yum!!!!! Haven't been on the site for about 1- 1 1/2 weeks...but slowly reading and catching up on everything. I've missed you guys.

I have had the same ever since I had my gallbladder removed. I suffered for several years and finally talked to my PCP about it. She said the constant gastric emptying was proubly dehydrating me and just plain annoying. I tried lots of fiber to not help and she put me on Colestid (which is used for high colest.) but it binds things up some and I couldn't be happier. My kids refer to it as my "poop" pill. I can take it in the morning and eat whatever I want and not have to run to the bathroom in the middle of dinner. I know where every bathroom is in our county and finally don't have to use them all anymore. It was the best choice for me. Talk with your Dr. and see what they can suggest for you. The colestid was great for me and I only have to take 1gram 1 xday. I started on it 2 xday, but it bound me up to much and I couldn't go. Good luck.

So gald to hear that your son is doing better. I would have loved to see all the doctors faces when you let them have it with their own words. It would have been a kodak moment for sure. I hope things continue to go well and that they will find the answers soon.

Just like my migraines except mine is in the left eye. I take perscription medication for it only when I can't tolerate it anymore. I usually take aleve and use my neck cushion with vibration to sooth away any stress that might me there. It usually works for me. My migraines are usually stress related but some are from food allergies...I just can't seem to stay away from the chocolate. Check with your doctor and see what he/she suggests for you.

I actually would throw up from trying to take the Midodrine. The 5mgs wern't to bad, but the 10's were horrible. I talked to my cardio and he wrote me a prescription for the brand name of ProAmatine and they are wonderful. They are the size of a birth control pill and I don't have as many side effects from it. I was lucky that my insurance charges me the same generic price for the name brand as the cash price is $735.00. Check with your insurance and change if you can..it will help. I also found drinking out of a straw to take my pill helped the big one's go down better. Good luck...

Great for you!!!!. It's always nice to get good news like that.

I had an appointment with a local disibility lawyer today that my PCP recommended. Turns out that he was great. I had orginally filed and received a denial letter. I went today to see what my chances were for an appeal and ultimate win on my case. He did take my case and said that we might be in for the long haul, but it was a winable case. I took copies of all my test, labs, doctors visits, etc really I took everything. I also took copies of all disibility contacts as well as copies of any and all info I could find on Pots and Dysautonomia. He said I should fall under the 4.05 condition of heart arythemia's (spelling??). If my cardio will verify that I do fall under that condition, then it's a slam dunk...if he won't then we will have to go to a hearing, but with all of my health problems and the lack of energy and the ability to perform basis life functions on my own..he said we had a 90% chance of winning if I could just wait out for the long haul if needed. It's just a wait and see now, but it feels good to not have to worry about the paperwork or calls anymore. He takes care of everything...great for my stress. Just wanted to let anyone know that might be applying for disability that depending on you condition and symptoms that it is very possible, hang in there and hopefully we will all get what we need in the end.

Thanks for all the responses. I will be trying the Epley physical therapy and go from there. Just go do it and hope for the best is all I can do.

Hey...I have those red dot too...they are all over my chest, stomach and back. Doctors have never been able to tell me what they are. My mom has them all over and my daughter just got them over the past couple of months. She is seeing Dr. Rowe at John Hopkins in March. He see and treats kids with CFS and such. Checking her out for POTS. She shows alot of symptoms...a 15 year old should never sleep that much. If anyone knows what the red dots are, please let me know. Willows...glad to hear things are under control with your son. Hope you find out what is/was going on.

I went for my monthly check up with my PCP and we talked about all the symptoms I am still having even with being on all my meds. She is now wondering how much is deconditioning and how much is still POTS. My largest concern is all the dizziness and motion sickness I still have. She is sending me to physical therapy for Eplee treatment. She said it has to do with vertigo. My PCP is great and explains things in a funny way sometimes. She said all people have "rocks" in their heads. Most peoples "rocks" know where down is, but mine don't. I have to retrain my "rocks" to feel better. Kind of like being on the swings at the carnival or fair and getting off dizzy. I get extremly car sick if I'm not in the front seat looking straight forwrd. If I turn to look at someone in the back seat, I get dizzy, sick to my stomach and a severe headache. This also happens when I close my eyes in the shower. She also suggested swim goggles in the shower if I don't want to pass out or fall out of the shower. Has anyone else had these problems and if so what do you do for it?