kayjay

I just got mine from amazon- i wore it in the tub- just wanted to see what my hr is doing when I wash my hair- no problems! I don't know how you could keep the strap up swiming. I am happy I got it. Thank you all for your imput!

To all of you I just want to give you some encouragement. I got POTS during my first pregnancy. I was horribly sick and could not get help. I was sick for both of my children's entire early childhood. I (with my M.Ed in education), had to let PBS "babysit" my children. I want you to know that the love I gave them was enough. Now they are 9 and 11 and they are two of the kindest most well adjusted children I know. I know I am not done raising but so far so good. I worried for nothing. I did better when they were is first grade and second grade. I am now in another full blown flare. It is funny to me that they don't even remember that I had been sick for all of those years when they were small. It really is harder on moms esp with the "mommy guilt thing" then it is on children. When my youngest was almost 3 I had to go to NIH for a week. My mom kept my children and when I got home my older daughter was fine. My son ran away from me. IT STILL BOTHERS ME and he doesn't know he did that. One thing that I think is important to think about is that our children still need to do as they are told and behave in the right way. Mom being sick cannot be an excuse for them. My children's teachers know that I am ill and my son's teacher was making exceptions for him. he had not done his homework and his teacher thought that was ok because of my illness. I had to tell him that unless I am in the hospital- expect school work to be done. My children remember a very happy childhood. I didn't read to them as much as I should have (too tired), they watched too much TV and spent a lot of time at home. They think about the playdough, and how I would let them put on bathing suits and "swim" in my tub with toys. I hope I helped somewhat. Just don't underestimate the love that you are showing your children. That is what they need most to grow up and have confidence! There is a saying that children spell love T.I.M.E- that is something even us POTSY can do. Now they are in school all day and I take a nap before they get home so I can "be at my best" such as it is for them.- kari

Just wanted to answer 2 of your questions. I am on birth control. Make sure that you do not take YAZ or another that has a certain form of progesterone that acts as a diuretic. YAZ gave me migraines and set of my most recent flare- happened in March and I am a little better but have not really recovered. Take a mono-phasic birth control pill- Mayo told me this to keep hormone levels consistent. They put me on something and told me to throw away the last week of pill for 3 months so I sould only get my period a few times a year. The if you want to know the brand PM me and I'll go look- too lazy to go upstairs right now! Also I am having great sucess with V8. I drink a big V8 before I get up in the AM followed my a huge glass of water with a nunn tablet in it. I was drinking way too much plain water. Salty drinks have helped me. Good luck to you!

Sorry- I have the same problem - I have "good eyesight" and somedays I can't even read. I think rest helps and over all having your symptoms more managed. I notice more of a problem with eyes and head aches when I don't wear compression.

Grey- I think for me these are related to my POTS. When I change positions in bed or roll over I have real problems (or used to). Now i take a .05 Klonopin every night at bedtime and for the most part it, I sleep well. I think firewatcher is right - it may have to do with stress hormones and I have hyperadregenic Pots. Good luck- I know I have scared my mom badly with these- She was here taking care of my children and I woke up screaming and crying from a nap! P.S. I think ALL of my sleeping issues are related to dysautonomia! I have a great bed- hubby doesn't snore- we are out in the county with no noise/ no lights- my sleeping issues seem to really be internal- bu I really recomend the Klonopin. I worried about taking it b/c it is addicitve... but I have gone off of it twice without problems although I learned how much it helps me!

thanks all Bella- great info- really could be asprin that is new to me as well!

Hello all, I have not been able to find anyone with the H1N1 vaccine to give it to me. I finally found I can get one from my OB/GYN. I made an appointment for next Wednesday to get one. I thought I would share this info for those of you who can't find a place to get this shot.

Karen, I waited 3 months. My cardio- sent a letter to one of the Pots dr. I also called and nagged. Don't know if it helped. I didn't think I could wait. But it was absolutely worth it. If you have a long wait you can get your local dr. to give you meds to stablize you and then wean off them before you go. Good luck.. I hope you go.

Cat Lady and Maggie- are you talking about the same thing or does Maggie's go around her torso and cat Lady your wrist? Should I not even look for a watch model? I really only want to wear it when I exercise- to tell you the truth most of the time I don't even want to know my "stats"... they freak me out!! I am trusting that I won't drop over dead before God wants me too!

Do you have allergies? Could you have an ear infection? I know my son cannot hear when his allergies are acting up. He talks louder - but does not have pain. Could you have water in you ear? You can try a solution of 1/2 rubbing alcohol 1/2 hydrogen peroxide in the ear for a few min (laying on your side) and see if that helps. ear nose and throat Dr. told me to do this with my son. Do you have any pain? Hope you are better soon.

Like many of you I like to exercise but I really have to watch it. Dr's at Mayo told me 5min on the recumbent bike. Some days I can't even do that but tonight I got on my bike for 10min with my compression girdle underneath support tights. Hmm. then I got off the bike and on my eliptical. I really want to use it but I passed out before having "fun" on it. Hard for type "A" me to do so little! By my own standards I hardly exercised at all... but now I have chest pain. I think I could be smarter about cardio with a heart rate watch.. do any of you use them? Do they work for those of us who are "abnormal" in so many ways? I really need exercise because I can't stop eating and my clothes are getting tight (meds prob. not helping either). I don't want to add extra lbs. to my problems! Thanks as always for your advice... I am addicted to this website! Kayjay

Melis-I really don't know... Jana- you are pretty funny!

Hi- I am wondering if anyone else has weird bruises. I have them all over my legs and didn't think anything of it but today I noticed both fleshy parts of my palm under both thumbs are bruised- any thoughts? thanks kayjay

Oh no I am not on facebook.... Do I want to be?

Hi- just checking on some things- I often question my diagnosis ( ofter 10 years of misdiagnosis it has become a habit). Anyway I was wondering if other POTSIES go Pale. If so what type are you. I put a little self tanner on my face to fake that "heathy" look but my mother told me that even my lips go pale when I start to feel really poorly.

I have taken several beta blockers- the best one for me now is nadolol. My BP goes up and down and I have hyperadergenic ( still don't spell it right) POTS. Some of the others just wiped me out- this one has helped a lot. good luck

If you are going to mayo in rochester the POTS clinic did a work up on me. I saw a team of dr's. The neuro I saw was Dr. Robert Fealey ( I thought I was doing to see Dr. Sandroni ). I liked him... But again the team approah was helpful to me because the dr's worked together.

I asked at Mayo (Minn.) clinic and was told to get h1n1 shots for myself and my children. Remember that fevers can be MAJOR problems for people like us... I can't properly regulate my temp. Also if I get a secondary infection and have to take something.... possible drug reaction- that can also kill you! I will run ...not walk to get the h1n1 shot. Sickness for me is a huge setback and I have enough to deal with already. Everything carries some risk but for me getting sick from the flu is a bigger threat. I have never had any problem with any flu shot.... but I have had drug reactions and got sick with some kind of "flu" last year and was sick for more then a month- we had to move in with my mother. I will take the advice of the POTS specialists at Aayo - and one of the few autonomic neuros in the world and get the shot!

I just went to yoga with my mom and was able to do a little standing and arm over head stuff.!!!!! I am layering compression. Yesterday I wore some girdle thing my mom got me that goes from above the knee up to your bra. with full leg support hose (not prescription) on top ......good day! Today I went to yoga with spanks higher power panties and those compression tights that runners wear (or bikers) but they go to my ankles. I need more compression in my belly and layering seems to be working for me. I feel smarter with them on. I know the compression of spanks is not as much as my prescription but it is easier to get in them, go to the bathroom, and they are less expensive. Also the tights are really durable. And they make me look like I can run fast haha .

Ok- I'm giving my two cents but it might be worth a lot less. Everybody has crap (can I say that?). We have a deal in our house. My husband has to deal with my health problems and I have to deal with the crazies in his family. Not JOKING here. you never Know what you are getting into or what the future holds ...but you are worthy of love and worth loving! About 10 years into our marriage my father in law pleaded guilty to secuities fraud- but has so much money I doubt he will ever "do time". After my husband's mother died he moved in with her cleaning lady and although they are very well to do (really grossly rich)--- she gave my little girl carbon paper and a box of Cherrios (beautifully wrapped mind you) for her 3rd birthday. AGAIN I am not making this up. My point is that at least who ever dates you knows upfront what they are getting. I was very surpised after marrying my husband. Life is full of suprises- LIKE A BOX OF CHOCOLATES - I spit out the cherry ones! Don't let YOU define YOU by your illness. YOU are YOU- and now that I am lecturing... Don't settle... marriage is hard for anyone -Cinderella does not get prince charming -I did get the wicked stepmother, the evil step sisters and A REALLY GOOD MAN. Hope this makes sense- I don't want you to devalue yourself. I know that I am a great wife and mother not because of what I can (mostly can't) do but I love, support, encourage my family. My husband knows that I have his back... I will always tell him the truth, I will always be his best friend... I just will never make the bed... it's too hard!

Hi- I didn't vote but I have had surgery to remove cysts and I have endometriosis and hyper- Pots

Erik, YOU MADE me LAUGH OUT LOUD!! I think of this every time I see one of those shows. I know I would fail and end up in the slammmer.... Maybe I have a guilty conscience. Kari

Thankful, I think a lot of us feel the way that you do. Reading your post makes me wonder if someday you will be all better. I know the neuro at Mayo told me that my prognosis was not good b/c i got POTS while pregnant and have had it for 11 years. I want you to keep hope that your body can heal. I am sure that many people that used to be on this site disappear... because they get well. I do want to tell you that I was really sick in my 20's and got better from about 30-to 34 ( I am also 36). I was able to work. Don't let that all or nothing think get you down. 2 weeks ago I gave away all of my teaching things b/c every time I looked at the stacks of bins I would cry. If I can ever teach again... well I am not thinking about that now. I might take up a hobby! Please remind yourself how important you are just because you are you! I was complaining to my mother about how useless and dependent I am.. she asked me do you love other people.... do you pray for them? It helped me realize that I can focus outside myself. Please know that about every other day- I feel so sorry for myself. I had a big storm or flare the other night- just sitting at the table and I had panic, migraine, nausea, ( felt like I hated my husband- he was being noisy- and wanted my mother - again I am 36!). I also feel guilty for my self pity- thinking well I don't have AIDS, of ALS or terminal cancer.... but realizing that others are worse off does nothing to make our suffering less. I will be praying for you (which after what I told you might be a bit self-serving ). Wouldn't it be great if having a baby was like a cure for you... stranger things have happened- don't give up on that dream yet.. you are still young... sent with love - kari PS your JOB now is to take care of yourself- you did not choose this job- and it is not your fault. God just knows you can handle it- Aren' t you lucky !!!

tea rose, I thank you for your info. I have not gotten my real compression yet just the spanks and leggings. We were in a hurry to leave Mayo on a Friday afternoon and I did not get measured. I am going to make an appointment today to give it a try- maybe I could be doing much better.

Julie, I am mostly home bound myself. I am married with two children but the only driving I do is to the bus stop and 2 days a week I drop my children off at school in the am one for Sax lessons and the other for Jazz band. on those two days I wake up at 6am and salt, hydrate and compress. What has been hard for me is we moved 2 years ago- I have been really sick ever since and I really feel as though I have no girl friends. I am 36 and can't even go to the grocery store myself (my mom takes me). One goal I have is to try to join a Bible study at a nearby church. I can't really go to a regular service (noise and everything). I really hate attention and I have to say the this little church near where we live has really been good to us- sometimes they send home flowers after the service for me and a few people have just stopped in to visit. I feel very lucky though because some churches have agressive recruiters. our church has it's "quirky people" but mostly they are very caring and kind ( although no one really understands what is wrong with me!) It is also hard to keep your friends when you don't drive and you moved an hr away so I feel your pain. Everyone else is busy and I am usually sleeping. I am making more of an effort to invite people to my house. I think it is important that you do maintain some social contacts with the "real world". I also have gotten to care too much about how I look- I have lost a lot of hair and have very little muscle tone. I am trying to get over that- it just is harder when you are pale, and weak - but in your mind you are still playing tennis. I wonder if you could meet people with your knitting. I get sad because I cannot do anything for others right now. it sounds like you have a talent that you could really use. I was a talented teacher (special ed) but I can't do any of that now. Anyway good luck to you in your quest... I just want to encourage you to get out whenever you can. My mother accused me of hiding and she is right... I do feel like hiding. I don't want to explain my problems to any one and I don't want to have a flare when I am not at home. Right now I also have IBS problems so I don't want to go anywhere. So sorry for the rambling but you are not alone in you isolation HAHA . kari