thejohnsongang

keep your chin up...we'll be here when you have time and will all be praying for the best in the meantime.

Maxine, Glad to hear your mom is going home. My mother also was in the hospital for blood clots a couple of years ago and it is very scary. She had one in her lung and one in her leg. She is now on coumidan daily and has sence been tested and found that alog with her afib she has a blood discorder known as Factor V Leiden, which causes your blood to be to thick and clot. She started having TIA's (mini strokes) and was started on Plavix (another thinner) as well. To make a long story short, for her surgery and such she had to admitted to the hospital, taken off the thinners in pill form and put on heprin by IV. They stop this the day of her prodecure, do what needs to be done and start the heprin back that afternoon, as well as the pills. When her levels get in therapudic range they stop the heprin and send her home. We have done this several times. Maybe when your mom's health gets better, they can do something like this to remove the tumor she has. I wish her, you and your family the best and will keep you all in my prayers.

Julie, Will be starting the florinef this weekend. I want to start while I have family with me, just in case. I will let you know how the combo works. I love the proamatine. I feel much better when I take it and have a little more energy. As for Dr. Rowe...Yes he is great. I have been talking with my daughter's current pediatrician about getting her back down to John Hopkins to see someone. She is doing great with her food allergies, but lately she's been showing signs of pots. Dizzy, loosing her balance, tired all the time, hot sweats, being cold, etc. Her pediatrician is good, but doesn't like to refer you out unless they have to. It's taken months to get her a referal to an endo for the PCOS that runs in our family. Would you happen to have contact into for Dr. Rowe that you would share with me? If so you can e-mail me at thejohnsongang@adelphia.net. Thanks for the post. Nolie

Just another thought...Not sure of what meds are available in your area....My daughter takes claritian, zyrtec or benadryl (all over the counter meds here) and atarax (prescription only here) to help with her allergies. Ask the doctor to try to see if they help. Also and Upper GI test will show if he has and of the GI disorders I mentioned in my earlier post. Wishing you luck, from mother to mother. Nothing feels as bad as having a sick child and not being able to help. Keep me posted. My email is thejohnsongang@adelphia.net

Willows, I was reading your post and something hit me....the jelly he threw up in the shower......My daughter was very ill when she was younger. She stayed sick. The pediatrician kept telling me it was the flu or some other virus and it didn't get any better...she would eat and then get very ill.....high fevers 103-106, cold clammy sweats, horrible stomach cramps, vomiting up something that looked like jelly or jello and then she would get horrible headaches and go to sleep so sound you could not wake her up for hours. She would then wake up like nothing happened and be fine until she would eat again. She lost lots of weight, her hair died and got brittle and she looked like a starving child from an improverished country. One afternoon she came home from school and it all started again, needless to say we ended up in the ER and transported to John Hopkins Hospital as she was in a coma..this lasted for 2 days. We seen a mulit specialist and within a couple of hours new what she had. When she was diagonised she was case number 22..it didn't even have a name then. It is now called Eosinophilic Gastroenteritis, She has type EGID. There are several different types. She is now 15, healthy as heck and looks better than ever. She controls her diet on her own and get help once in a while from over the counter allery medication or from perscription atarax. If she eats out she will get sick. She is allergic to milk, soy, nuts and fish. Please check out the following sites and see if this will help your son. I will be keeping all of you in my prayers and hope that your son gets better soon. http://www.apfed.org/index.htm http://www.rarediseases.org/search/rdbdeta...%20Eosinophilic http://www.curedfoundation.org/livingwitheos.html http://www.emedicine.com/med/topic688.htm

I was told by my PCP and cardio that I was not to take any over the counter meds for cold, flu, allergies etc...the antihistamines casue tach symptoms in POTS patients and casue a high increase in heart rate. I found out the hard way when I took dimatap for a cold I had. I had forgotten about what they had said and one night my cold was so bad I couldn't stand the running nose anymore...needless to say I still didn't sleep as my heart rate was over 130 all night and the tach was so bad and painful I almost went to the ER, but like everyone else....they have no clue about POTS.....so I didn't go. I take zyrtec 10mg daily and it does not bother me to much...My PCP and cardio both said I could safely take Corcedian HBP, an over the counter cold medication if needed as it would not increase my heart rate, but so far I haven't had the need for it. My brother has high blood pressure and that is the only thing he will take when he gets a cold and he says it works well. Hope this helps some.

Whoa!!!!! Reading all of this scares me to death. Just yesterday, my cardio wrote me a precrip for florinef. He said the salt and thermotabs were not enough to control my symptoms and tach. My holter test showed tach and brach with my current medication. Now I'm scared to try the florinef. I haven't even filled my script yet. I drink all day and night, but also am loosing it all due to constant urination. He said the florinef would help and I don't go back for 6 months. He also told me to make sure I use BRAND NAME promamatine and not the generic form which I was on for the first 4 months of treatment. He said it causes a difference in symptoms relief for some, which it did for me. I have less symptoms of tach/brach on the promamatine than when I was on the generic. Does anyone know if the florinef is the same? Mack's Mom- My daughter use to see a Peter Rowe at John Hopkins when she was very young. He was a multi-specialist when we went. He treated her for severe food allergies. She was in the ICU for a week and in a coma for 3 days due to food allergies. I assume it is the same doctor...If so he is wonderful. What is his specialty now?

Does the company you work for have another location further north? If possible you could transfer. Otherwise I think this is something you and your husband need to discuss together..your health is more important than any amount of money a raise would give you, but happiness and fullfilment have to fit in the mix also.

My PCP told me that the POTS would damage my veins and cause excessive vericose veins that would have to be fixed later in life. The up side of this is she said my insuance would pay for it because it was caused by the pots. Usually vericose veins are not covered by insurance in our state as it is deamed cosmetic. Nolie

Whooooooo!!! did that guy open a can of worms. We all know "us" women have and always will be senstitive about our weight weather we weigh in at 100 lbs. or 300 lbs. There are men of all tastes out there. If you can look in the mirror and be happy with yourself, then who cares what others think. I was a very overwight child and did the diet yo-yo for many years in my teens. I found someone, got married and due to cancer he died 11 months later. Talk about issues at a young age. Anyway during his illness, I lost over 100 lbs, and was finally skinny. I learned that when your thin, people look at you more of a sex object than an equal. I have gained my weight back, got remarried to a wonderful man and have even gained a few more pounds since getting POTS. My husband is one who actually likes a fuller figure and I am finally happy with myself and can look in the mirror and believe it, and I wear a size 18..... To make a long story short...if your happy and comfortable with your weight and the doctors don't think it's a health risk, then don't let shallow people bother you. Enjoy your life, take your meds and let life go on. There will be a man out there looking for someone like you that will knock your socks off, and he WON'T care what size jeans you wear, he'll love you for the way you are. Tell that creap to take a hike...you deserve better in your life. Nolie

Funny...funny....funny. These are great and really make you feel better on bum days. Here's mine. ....when you think of shaving your short hair dogs to avoid the vaccume. ....when you spend the whole day in your bedroom because the only bathroom is on the second floor. ....when your kids tell you "If that's what you act like when you drink, I don't ever want to". ....when your husband MAKES you wear socks to bed. ....When you see a new doctor and you take your medical notes with you..he actually say's "good Lord Lady". ....Let's just say 3 words "Shaving your Legs"!!!!!!!! ....When you have to set an alarm to remember your meds. ....when you pick up your meds from the pharmacy you don't get the little paper bag, you get the big plactic bag. ....When you actually have to RIDE in the kiddie cart at the grocery store. (My kids love this as they argue who's going to push me around) ....When you keep a container of salt in your purse. Hope to see many more here...These are great. Nolie

It sounds like your having a reaction to the medication to me. I would be asking the doctor a few more questions about it. I do hope you feel better soon. I know how you feel..several years ago I got Rocky Mountain Tick Fever from a tick on my neck (left by my dogs). The medication was horrible and so were the symptoms I had. I feel for you and hope your feeling better soon. Nolie

I've never heard any assumptions on height and weight being a factor. I short and on the heavy side and still have pots. I did see that on the votes that all responding so far are female......may be a trend or maybe guys just don't like to seek support as much as women. Nolie

I always call my kids by the wrong name. I have a boy Branden and a girl Anna. My son keeps telling me "I've been a boy since you had me 11 years ago, can't you get it right?". My daughter just laughs and lets it go. She's older and understands more. My husband thinks its funny and laughs along with me. I'll have to keep track for a couple of days and write down my other blundes and I know we have laughed at many. Nolie

My legs get a dark blotchy red color, but my feet turn purplish color. During my tilt table test they turned a dark purple with a definate line across the ankle like someone drew a circle around my ankle with a purple marker and colored my feet in. My cardio said that it was first time he had ever seen such a difinate line. My arms turn a light blotchy red. Nolie

I have been in the same boat many years. One year it was gifts for our kids only. That year I decided to write a letter to each of my family members and tell them how I felt about them and appreciated their help/prayers etc. The letter to my mother detailed how "bad" a teenager I was and that she continued to talk to me and love and and it made me a better mother myself. She still says, years later, that the letter was and is her favorite present of all. Sometimes we forget that it's not the gift, but the thought and if you just let them know how you feel about them it is better than any amount of money you could spend on a gift. Just a thought for you. Hope you have a wonderful Christmas. Nolie

Yuck....sodium...I have tried to add more to my diet, but have trouble with taste and can only tolerate it on french fries. My cardio recomended that I start on sodium tablets and I take these every 4 hours along with my proamatine. My sodium was at the bottom of the range and hopefully the next check it will have increased. I do feel better and the dizziness is better when I take the sodium tablets on a regular basis. If I forget a dose or two, I can tell.

Thanks to all of you that have responed. Katherine...I love the eastern shore. Chrisfield is one of my favorite areas to see as well as Ocean City. We used to visit every summer, but will have to play it by ear for next year. This year was out.

The Harriet Carter cataloge has these. I saw them the last time I got one. You sould be able to go to their web site and order online or have a cataloge sent to you.

Katherine, Where in MD are you? Polycythemia is a blood disorder/blood cancer (depending on the dr). This disorder is a mutation of the bone marrow that makes it overproduce certain cells. Mine overproduces red cells. I see a hemotatologist on regular basis and the only treatment at this time is phlebotomies. I have to give blood, about 1 pint, every couple of weeks/months depending on the time it takes my bone marrow to reproduce them. The greatest risk is from blood clot and stroke. This is due to the blood being thick from to many red cells. As long as we keep it in check I can live a regular length of time with it. Sometimes it can go into blast and over produce to rapid or can turn into leukemia or another type of blood cancer that woud require chemo or Bone marrow Transplant. I am no where near that point but it can happen, so it will be a lifelong learning curve. Hemochromatosis is another disorder of the blood that causes your body to overproduce/store iron that is in your red blood cells. Your major organs store the extra iron and it in turn damages the organs. Most people that are not diagonised or are caught late end up with liver damage, spleen damage, liver cancer, or Hep C. Mine was caught very early, when they found the polycythemia, and the treatment for it is the same. You have the excess red cells removes thru phlebs. They continue to do this weekly until your iron stores are at anemic levels, then they just maintain your low levels to keep the organs safe. You have to watch your diet for iron intake. I am the second person in my family with Hemochromatosis and the first with Polycythemia. The Factor V Leiden also runs in my family, but I was lucky enough not to get it. I am the baby of 6 kids and 3 of them got the Factor V. I am the first diagonised with POTS, but I truly believe my mother has it. Her cardio is not familar with POTS, so we are getting her PCP to send her to one that is. Hopefully she will find some releif from her symptoms.. I have learned alot from this site as well as a list that my cardio gave me. It's nice to know finally that it's not in my head...I feel redeamed. My cardio is a member of the Children's Heart Clinic and I see a lot of kids in his office with POTS. He said this can run in famlies. I wonder how often that happens? Now this is one more thing I have to worry about handing down to my kids. Anyway, thanks for the welcome and I look forward to talking to you again. I hope the information above helps you understand a little more.

I was recently diagonised with POTS/NMH in September of 2006. I am also currently being treated for Polycythemia Vera and Hemochromatosis. I joined this group to find support and understanding of my condition. Does anyone else have problems with Polycythemia or Hemochromatosis with their POTS/NMH? I have been searching for years to find the reason for my chronic fatigue. I was treated for years for depression with no results, treated for bipolar disorder with no results, had a partial hystercotomy (spelling?) and had my gallbladder and lump in my breast removed. I have continued to get worse and I finally got some answers from a wonderful cardiologist in VA that my PCP sent me to for tilt table test. I have started on medication and am feeling better, but the chronic fatigue is still there. I sleep 14-16 hours a day some days and then other days are good and I stay awake most of the day. Is this normal with Pots/NMH? My Dr said the fatigue will get better as my treatment progresses. I sure hope so. I look forward to talking, sharing and reading this post. Would love to hear from everyone. I live in MD outside of the Frederick area. Is there anyone close? Nolie