kayjay

I'm a Karry Jean - hence the kayjay ( KJ)- I think I'm being tricky not using my real spelling when I post!

I was told to elevate the head of our bed. They think that this keeps more fluid in your system and out of your bladder. Instead, I drink a v8 and a large glass of water with nuun in it about 15 min before I get up. Really helps with low bp upon waking.

I just was wondering if anyone else is sort of in "hiding?". I really don't want people to know that I have a problem ( I hate attention and I hate trying to explain POTS). I can't work, and I am home most of the time. My mom drives me to the dr.'s and such, I can drive a little but not far. I really am a private person and I wonder who else feels this way... or am I crazy? An old friend from middle school wants to get together and all I can think of is how do I tell ehr I have some weird problems? Even if I can make it to starbucks or something. Anyway I know this is weird but I wanted to know if anyone else feels the same way. Even my in-laws don't know I have a problem-we don't see them much- I just had to get though 1 dinner this year and my husband covers for me.

Could you have bladder/kidney infection? I am going to ask to get checked when I go to the dr's next week. My sister-in law has that type of pain a lot and has had bladder/kidney issues- no other symtoms for her. Me- I feel like I can't empty my bladder fully Whatever- I'm very happy you are feeling better- you might want to mention the back thing to your doctor- kari

Another Kari (although not my real spelling)- I'm 36 and if I got a tattoo my Mom and Dad would cry! I hope I live to be old and tats are not cute on little old ladies! You have to have the personality to carry them off...I don't. I do have an Eeyore jibbit on my crocs though...I kind of think of him as my shoe tat!

I think Ram has a point here. For me I think my body/brain has learned to have regular old panic attacks. A few nights ago... I had that old feeling that I was going to die. I took my blood pressure and pulse, both were fine. Finally I fell asleep and was not as sick the next day like I would have been if it were "real". Your brain is so powerful and mine has now "learned" how to panic-

I am adding my 2 cents here. My thought is that if your testing showed you were in the "normal" range you really may not have hyperadergenic POTS. I do and I think regardless of meds in my case there is no doubt. My 24 hour urine collection ( on 3 occasions) showed enough of those hormones that at first I was diagnosed with an adrenal gland tumor. "Regular POTS" people also can have adrenal surges when your body feels stress, but I just have to stand up. At mayo clinic the neuro had me do 3 squats in his office. I was sweaty, could not breathe, my pulse went sky high- also don't know what my bp was. (I was sorta fit, not over weight). he said I had the typical hyper presentation. My blood test was not in the normal range. With hyper POTS I think your blood test ( if done properly would show this clearly). I am with firewatcher- can't have something like wellbutrin- I am on lexapro. I think Avidita is right. I have wondered if hyper POTS people have larger swings in heart rate? mine has gone from 28 to 90 and also from 60's to 201. We may be more likely to have high blood pressure swings also. I know I do.

Maybe you might consider an ssri to help your POTS and to protect your health/ mind a little while you are healing....because you will heal from this loss. I take an SSRI for my POTS (lexapro) and I know my aunt has been on one for years (she is married to a total jerk!!!). Anyway I'm for whatever you can do to help you get though this. Another thought... I can understand giving up on "religion" but I just focus on my relationship with God...I take comfort in knowing that there is a greater perspective on things then I have. THINKING OF YOU!!!! kari

XBOX? very cute Erik! no brain fog for you today....bragger! Macks Mom -I recorded dr oz on the dvr ( shhh!) and today he had a Dr on talking about CFS. She said that a test is available - you can get one online, have your dr. order it...she said it costs about $400 and is not covered by insurance. Because they claim that this is a bloodborne virus... I want to make sure that I don't have it. I am a germ/clean freak but want to make sure that I never expose anyone to my germs if I have something that someone else can get..... basically I want more information. I will say it would make any sense that my husband and children are so healthy if I could spread it....?

Hey all... just wanted to ask if anyone is getting tested for the retrovirus that they are now linking to cfs? it starts with an X and has 3 letters... haha not kidding I can't remember what the other letters are. Anyway please let me know... I am thinking about contacting my dr. Oh XMRV- just googled it!

You are not alone with this problem. My husband knows I have multiple health problems but he seems to not "get it at all". He is resentful if I ask him to do things and he won't even read up or learn about my health problems. With that said he is a good man, a good father and I have to let a few things go. I feel sorry for him because someday he will get it - if he lives long enough. Also I feel sorry for people who are selfish and less compassionate because they are less happy. I try to lower my expectations and do what I can in little bits. Maybe a good friend could help you little by little clear out some junk. I am sorry I know how frustration this is. I married a pack rat and I like things clean. I have allocated one room in the house to my husband and I push his c@#p in there and stay out! Not everyone has the character to rise to the occasion. I thank God for the way I was raised and spend a lot of time praying and saying thanks...helps my mood

Hi- I had 2 healthy babies when I had undiagnosed POTS. I was induced early with my first child due to high blood presssure (now I know I had pots). I was sick thoughout the whole pregnacy. Vomitted a lot, had trouble gaining weight and was induced about a month early- My now 11 year old could not be healthier! She is upstairs playing her flute as I write this. Don't worry too much. I made out fine and I was undiagnosed and untreated. My obgyn thought I was a hypochondirac! My only advice if you are worried is make sure that the hospitial you choose for labor and delivery has a good neonatal department. If there is a problem you want your baby to have great care. Hope this is readable -can't think today- welcome to the world of worrying motherhood by the way! It starts before birth!!! People miscarry for lots of reasons... I am not sure that you could prove POTS is one. I never miscarried and I have POTS, Fibromyalgia, Endometriosis, IBS among other things. My sister in law miscarried as did my mother (in her 20's) and they are both TOTALLY healthy!!

If you have seen a cardiologist.. you may want to call and ask for a tilt table test. many hospitals can do this. If you have a positive tilt test it will be easier to get in to Mayo or wherever. I had the tilt and then my cardio contacted mayo for me. Good luck to you.

I don't know about anyone else.... but when I first got sick I dropped 25 lbs without trying and I just had a baby. One week after my daughter was born I was in my regular clothes and eating cheese cake. I remember my husband telling me that I looked like an "Ethopian"- sorry if that is not pc this was 11 years ago and as children of the 80's we are imprinted with the memory of first learning about people starving in Africa. Anyway- I have hyperadergenic pots. When I have a flare or am not on meds I can't keep weight on. This must be true for everyone with this kind of pots b/c when your body is working so hard you burn a ton of calories. Also Hyper pots people tend to have bathroom issues because of those stress hormones. Treating my pots has made my weight "normal" although I "feel fat" from being thin so long. I hope this makes sense. I know if I went off my meds ( And didn't die HAHA) I would lose weight really fast. "Regular" POTS people may be different.

I have also fallen off my eliptical and I am not a "fainter". My advice is to not push yourself too hard. For anyone who ever played competitive sports this is such a challenge. I am going to tell you what I am doing and maybe it will help you. I no longer allow myself to work out for X amount of time. You have to stop when you feel like you should... this is so hard. I used to think in terms of "45 min on eliptical" etc. I bought a Polar heart rate monitor and wear it when I exercise. My goal every day is to get on my recumbent bike for up to 20 min ( right now). If I need to get off sooner I do. I also do pilates then take a Yoga class once a week (focusing on flexability). I have a leg strap and use it sitting to do leg work. There are some really good Pilates DVDS. I also use hand weights while sitting (when hubby is watching TV) and work on my back and arms ( only 3-5 lbs). Exercise when you feel best... Mayo clinic told me to do this... don't say "I am going to work out for "x"amount of time at ___ 'o clock. For me this is often around dinner time. Sorry that you have this struggle ... I hate feeling/ being so out of shape! I really think that pilates is a great help. I was always stong and never flexible. Now I am sadly weaker but can touch my toes! Good luck to you!

Thankful- did mayo clinic put you on this? They talked about it for me but sometimes it can raise blood pressure right? What about headaches?

I am thankful for a diagnosis after 10 (nearly 11 years). It has meant so much to me to have a "name" for my ever increasing problems! I am thankful for the wonderful Dr. who would not give up until he got a diagnosis! OH and I am a Dinet addict. Several times a day I read posts!

I was told to some extent ignore my heart rate and blood pressure and pay attention to how I feel ( by the cardio at Mayo clinic in minn. With this said I still have a good heart rate monitor and blood pressure cuff. Not as good as a holter ( I have also done the 1 month monitoring) Anyway my heartrate has been 201 (I may have been walking up stairs) and as low as 28 (I was in Walmart).I was on a beta blocker which suprised me). Last time I had a holter on my heart rate went up to 160 when I was brushing my teeth. I am not sure if I would worry too much about the numbers. I would worry more about how you feel. It is also important that your heart have an overall sinus rythym. You may very well have POTS but the hard thing is you have to be off meds for a "true" test. The Dr's I saw told me that I had very liberal limits in terms of heart rate and blood pressure. Hope your feeling better and have some good info soon.

I realized I could teach other people's children or raise my own...I couldn't do both. That was three years ago. I am worse now then when I first got sick and wonder if it is due to the fact I didn't know what was wrong and kept pushing harder Duh! I still can't believe i WAS MAKING MYSELF DO JUMPING JACKS. I would get so upset that I could only do a few! Good survey... I feel a little less alone about not working... I still feel weird guilt about it!

I'm sending my doc a starbucks gift card b/c I know he drinks coffee. easy and they have starbucks everywhere!

yes to ear infections, sinus infections and allergies- MOLD, dust, pollen. When I have allergy problems I feel much worse. I get ear infections if I get a cold or upper resp. problem. I think Black Mold exposure when I was pregnant may have triggered my dysautonomia problems. Rinsing my sinuses with Neil med sinus rinse helps me prevent problems. I don't know if you can link these .... sinus problems are really common (depending on where you live) but interesting thought.

Hey Thankful. I have no "words of wisdom". Just wanted to let you know that I am praying for you. Also hopeful that this lovely hospital stay (sorry) will benefit you long term! May you leave in better health then you arrived! Kari

I take Nadolol once a day. I think it is so important b/c it is protecting my heart. Beta blockers do a lot of things. You may feel worse before you feel better but you can try different ones. If you heart is working too hard all of the time you are at risk for an enlarged heart (among other things). Also my heart rate has dipped to 28 and has was in the 40's at rest for a few days. A beta won't stop your heart from beating... it just may slow you down why your body adjusts.

I did- as a kindergarten teacher. I was always running around- I got sick at work a lot but I hid it. I was undiagnosed and I took allergy meds and secretly chewed nicotine gum (never smoked in my life but I had trouble thinking). I would come home and go to bed- Had trouble taking care of my family. Now I can't work (for the past 3 years). I have to sleep for about 2-3 hours during the day to make it to dinner time.

I stutter ! Never did before POTS.