kayjay

Yes the test is for Pheo but in your urine test comes back positive ask for a blood test. I have had 3 or 4 positive 24hr urine tests for pheo- but I do not have it. Extreme hyper POTS can give you a "false positive" result. Good luck

Loved it! Great job... brought tears to my eyes and I always welcome the reminder that my illness was allowed in my life for a purpose. God knows my heart and the most important job I have is the rearing my children. I have remind myself that I get to show my children how to face diversity ( I'm not always the most graceful example though). I hope they never deal with Dysautonomia ( worried about my daughter though... I'm taking her to the dr next month)... but we all have challenges. thank you for the encouragement.

So sorry Bella. May your faith sustain you and remember the hope that we have in Christ that is a painful separation but only temporary. Sending you love, hugs and prayers- K

I grew up with very little salt. My mom makes everything from scratch. I used to drink the juice out of the pickle jar (gross)!! I only use salt now b/c I was told too.

Have it. Also irregular periods. I used to have some spotting almost every day. Now I am on birth control pills and don't even get my period when I am supposed to ( for 6 months now).

Our Library has free summer activities. Last year they took art lessons. I also send my children to vacation Bible school. My children fight if the have too much unstructured time together. Have you looked into your local Y? We don't go but a lot of friends do. Due to my being sick so much every room in our house needs to be re-organized and cleaned. I have already told my children that they are going to help me organize every room top to bottom - one room a week (groan)! I have to have them do some chores. The 2 and 3 year olds can dust baseboards. I make a game out of it. I also had outdoor toys in our house when mine were little - I was sick all of the time and didn't know why. When it was too hot for me to be outside they could run like crazy inside.- In the basement. If you get the wii the outdoor challenge is a fun game that will burn up some energy. Have you thought of letting the older ones ( or all 4) have a little garden? It can keep them busy if they have to weed a little. I also had an art kitchen cabinet when my children were younger. They were able to use things in the cabinet without asking but they had to spread a plastic tablecloth on the kitchen floor ( easy clean up) this worked really well for playdough which can make a huge mess. I used to let my children when they were 3 and 4 put on swimsuits and play in my tub while I lay down--- I had a big tub and I let them take in lots of toys and kept the water cool. Sorry to say they also watched a lot of movies - but at 9 and 11 now I realize it did not hurt them a bit. Hard job for you having 4 and a spread in ages. I know things have gotten better and better for me as they have gotten older. One final thing- I let them makes tents in the house and my husband will put a real tent up in the yard... they still think this is great fun. Hope something helps.

Has she been checked for Pheochomacytoma? I was misdiagnosed with this kind of tumor. When they are near or on your bladder many people pass out when urinating.

I had the worst time with a doctor at Johns Hopkins who could NEVER be wrong, a doctor at NIH who only spoke to my husband and treated me as a "non-person"...And the nurses at our local ER. The only time I know my husband wanted to hit people (those know-it-all nurses who kept telling me to calm down!). I think in any profession ( I was a teacher) you will do your best if you 1) treat people with respect!! 2) always try to keep learning yourself. 3) don't pre-judge- that is a foolish yet human thing to do! I think many of us have felt victimized by other people's snap judgements. I am less judgmental and I also trust God more... really who else can you trust? ? I know someday I am going to die... I try not to think about that... I am just trying to have the highest quality of life I can. My doctor now will try to "do me no harm" and he is trying to help me in any way he can. I was supposed to see him yesterday... he emailed me to let me know he would be rushed did I want to come in Thursday instead?- THAT is a good doctor! I don't expect him to have all the answers and he doesn't pretend to but he is looking out for my interests and he cares about his patients ( also he is super smart ) Do I sound like I'm in love ?

My doctor believes that something causes CFS so he doesn't give it as a diagnosis ( not that it doesn't exist) he just keeps looking for causes of fatigue. Fatigue is my worst symptom but I am thankful that he kept looking for the reasons behind my fatigue or I would not know that I have dysautonomia, anemia and other problems. When you are as sick as we are the fatigue is crushing.

Isse- I am not sure why but Klonopin is better for me than ativan. I think TXPOTS has great info and for me I think the Klonopin might prevent the surges that i get. for now I am going to keep taking a half of a .5 (or is it.05) pill at night. It does help me sleep. On ativan I felt out of it a little. I don't feel weird on Klonopin. I don't think I am taking enough to mess up my memory (I hope) i think the POTS is to blame for that.

Hi... I was really thin when I first got sick.... Stayed thin for years. Now I am getting chunky... I think the sleeping, medication and lack of exercise can really make weight control hard. Also before I was diagnosed I could eat anything I wanted and not gain weight.

I take 20mg of Nadolol at bed time. It was a few weeks before I could function on it but on labetalol, I had way low BP. I lost hair because of adrenal surges... not really from medication. When you are really sick or stressed it stopes growing and then seems to fall out all a once. It took a few months for this to go away and now my hair is pretty normal. Are you doing other things ( salt maybe coffee to keep your BP up?) I do have ice-cold hands/feet from the beta blocker. I can't get things out the freezer with bare hands. Good luck.

Hi I am on a BB as well. I also wear a heart rate monitor. It has read 208 ( I just wear is all day) Last night brushing my teeth my hr was 146. It also will go above 150 walking up stairs. When I am riding my stationary bike it stays below 120.

Hi- I take it. I switched a few months ago using Cymbalta to replace both lexapro and lyrica. It helps me with my fibro pain and doesn't have the side effects for me that lexapro did.

Thanks for all of the help! I learned more from all of you then I could searching the internet. yesterday was rough... I was easily startled. Last night every time I rolled over in bed I felt like I had an adrenal surge... so I took 1/2 half of a klonopin in the the middle of the night. I guess I changed my mind. I'm going to keep taking it. Bella, Firewatcher, and TXPOTS- MANY MANY thanks. I feel better about my taking it because it has always worked for me I have been taking .5 for a year. Now I am breaking them in half. -gratefully -kayjay

Firewatcher and TXPOTS, Thanks so much for the info. I wonder if I should stay on it? I thought my doctor felt that the betablockers were enough to block these surges. I also thought that this type of med becomes less effective over time. I wasn't having any problems with the Klonopin... just have noticed my short term memory is worse after taking it. I worry that what I am feeling is a return of my symptoms. How long do you think I have to be off of the drug for it to clear my system.... is that 36 hours? THANK YOU

Hi I am hoping someone could help me. Right before I was diagnosed I started having horrible panic surges. Most often they were at night...but not always. Many of you know what these feel like. To me it seems like I am going to die...soon. I am on a beta blocker and have been weaning myself off of klonopin because it can interfere with your short term memory. I am trying to only take the meds that really are effective. I planed on just taking the klonopin when I really need it... not every night. I was taking 1/2 a pill every other night ...down from 1 pill every night. Anyway last night panic hit me and woke me up. Could this just be drug withdraw? If it is I will ride it out... or was the klonopin really helping my H-POTS? Thanks!

I feel worse when things are swinging a lot. If my bp is high and stays high ( not super high - then I feel like I'm gonna die ...soon) I feel ok. They call high blood pressure the "silent killer" because you don't feel it. When my BP is low I feel spacey and lightheaded etc. When things move back and forth between extremes I feel the worst. I think this is when I get my worst headaches and feel sick to my stomach. Do you think you might feel better when you are more "stable?"... I mean the POTS OI version of stable....LOL

Just want to ask you to keep us posted. I hope you get some info that helps you do/feel better. When are you going to see the Neuros? Also can you tolerate caffeine? Maybe that would raise your BP? I wish you could be here to listen to my children fight...it is enough to raise my blood pressure! LOL FEEL BETTER JANA!

Urrg. I was feeling better overall... still have my POTS But I JUST ATE SALAD DRESSING WITH GLUTEN! After turning down food all week ( although most potato chips are gluten free HAHA). I just wanted to warn everyone. Gluten is in soy sauce. Soy sauce is in my favorite salad dressing. This is hard. For anyone watching their weight and gluten. I made.... well let's call them "cookies" with chick peas in place of the butter. Wash a can. put in blender. add some water. mix with gluten free choc. chip cookie mix vanilla and pure cocoa. They are not "toll house" but even my hubby was eating them! they are good for breakfast... just tell yourself they not cookies- lower expectations = a happier me!

This would be horrible for me. Standing still is ALMOST as bad a walking up stairs!

have you thought about home-care or hospice? You might only have to work a few hours a day... I loved working with hospice... very rewarding.

please keep us posted... i hope you are feeling better today.... I am praying for you.

ok for the past three days I have not eaten any gluten and I am starting to notice a change. I have read everything I could on the topic... including Celiac for Dummies (yes that would be me!). So many things: neurological problems, IBS, Fibromyalgia, lactose intolerance, anemia, CFS, Reynalds, have been linked to Celiac. I will keep posting to let all of you know how I make out... It takes months to heal if you have Celiac... but I already know my brain fog is a bit better... and I just talked to my mother on the phone STANDING up no compression and was able to make sense! I know it is early in this process, and I am not expecting a "Cure" of my H-POTS... but even a small improvement is welcome! have any of you tried Gluten free- Did it help?

Hi- I hope things go well for you and your daughter gets good help. I only had one TTT - on the East coast. My results were pretty extreme so when I went to Mayo they did not want to repeat it. Also I think my first one was 45 min. The urine test may also be to rule out adrenal tumors ( Pheo's) that's what mine were for. If they have hydrochloric acid (HCL) in them and have to go in the fridge it could be a clue. I don't know if the test Macks Mom spoke of has HCL in the container or not. Forgive my spelling but the test might be for catecholamines or metanephrines - produced by the adrenal glands.