Jersey Girl

I had this all this past weekend with the humidity. I was even getting stomach cramps and diarrhea from the heat. All I can do is to take it easy, drink something cool and lie down in an airconditoned room. I think the headache part is related to the orthostatic imbalance. It IS really nasty. Martha

I can remember when I first started feeling exhausted and I had double vision at work one day just before the onset of florid POTS 4 1/2 years ago. I don't think this is so typical with the onset of POTS for many peraons. Less than a week later I was bedridden with what would take almost 2 years to diagnose POTS.

I was wondering if anyone else has had this symptom? My POTS is believed to have had a viral onset but it was never proven. Hope everyone is staying cool today. Martha

Hi Chrissy,

I also make so much urine that I can't seem to get to the bathroom quick enough and start to go before I'm sitting (urgency). I usually just make it. My symptoms were much worse when I initially came down with POTS but I still have them, worse certain times of the month. I know where every public bathroom is in the mall and grocery store for the limited amount of time I can tolerate spending there. I would occasionally have my urine tested for diabetes and cells thinking it just couldn't be all POTS. Martha

YES! I have it on my left side. It has ever so slightly improved over the last 4 1/2 years but still present. Many persons suspect I had lyme disease because my face even droops a little on that side like Bell's palsy, but I saw lyme expert and many sophisticated tests, probably another nasty virus caused it. Martha

Hi! I have the same thing happen to me when I exercise -as long as it is not too hot (which it is now) or I don't have my period AND I don't over do it, I feel so much better once I get started, but then 15 minutes later after stopping I am dizzy again. I was told that during exercise the skeletal muscles pump the blood more effectively to your brain. Swimming for me is better tolerated because I am supine! (I tried shoveling snow once and because it was cold, I could actually last about 20 minutes and surprised myself.) Martha

Hi! Sorry you have to go through this too. The prep was definitely the worst part of it. I was told that I could drink clear fluids as long as they weren't red colored, like beet juice flavoring or coloring. I did drink gingerale although I agree that it is hard to drink anything else while you are drinking the prep liquid--too nauseating. I arrived slightly earlier than scheduled at the hospital (I specifically found a G.I who would do the procedure in a hospital versus an outside surgicenter) but the staff seemed happy that I was there a little early and gave me an IV which helped. I told myself that everyone else gets through it so that I would also be fine! I was also instructed to take Dulcolax tablet a few hours after finishing the prep to extra clean me out. If you aren't running clear after the prep is over, they can't see anything and will cancel and reschedule you. Believe me, I wouldn't want to drink any of that stuff over again. It took about 2-3 days afterwards for my GI system to get back to its normal dysautonomic self. The great news was that I don't have to have this again for 10 more years! Take care, Martha

I too hope that you will completely get over your symptoms, but there are varying interpretations of what definitions physicians use when they say someone has recovered from these types of illnesses. Many of us experience improvement, but getting back to the old "normal" is another question. Martha

I'm just like funnyfrog when it comes to light. I have glasses that turn dark when I go outside, but the florescent light really does a number on me. Home Depot/ Loews and bright light coming through the mall skylights are hard to deal with. I usually have to leave after a few minutes because I become so dizzy and disoriented. Even sitting down in that environment doesn't cut it. Martha

I get extremely dizzy when I eat usually, because of the dysautonomia (blood rushing to my gut) and have only experienced a little nausea. I drink alot of warm ginger tea and warm organic peppermint tea throughout the day to help with the constant indigestion. Martha

Such good news about the insurance covering. I certainly hope that it will help! Keep us posted! Martha

I don't know of any links but you can search their website at www.pediatrics.org I saw the article from my pediatrician. Maybe you could ask the librarian in your local library or local hospital to get you a copy. Martha

This review article in the official journal of the American Aacademy of Pediatrics is 10 pages long with another 3 pages of citations. It seems very comprehensive (except for specifics about treatment) for pediatric cases. It was written to "increase the awareness of the expanding spectrum of pediatric autonomic disorders" and can be complicated to read and fully understand. It talks about growth factors and genetics and some fairly rare syndromes, but it is still an interesting read. Martha

I was told after my colonoscopy that I didn't need another one for 10 years! I was so relieved to hear that. The worst part was definitely drinking the Nulytely and being on the john for the rest of the day and night. I didn't get taken right away in the morning so I had an IV for about 4 hours prior. (YES!) I also felt like crap the following day, but today I seem more like my dysautonomic self. They did find some minor hemorhoids which require no treatment. Martha

I would probably buy 1 adult large and 1 adult small. BTW I love all the designs--hard choice. Martha

I know many have discussed their preps before for a colonoscopy, but I couldn't relate until this afternoon as I am drinking this AWFUL stuff and wondering how anyone does this! I am not scheduled until tomorrow morning and think I will arrive early so I can get an IV. Just not eating after breakfast is doing a number on me. Martha

I also had bladder infection when I was first illand had POTS symptoms, although I wasn't diagnosed with until a year and a half later. I was "accused" of not emptying my bladder last year after shoulder surgery when they had to give me a bedpan every 10 minutes because I couldn't get up after the anaesthesia. I believe I just don't retain any fluids in general no matter how much or which way they are administered. Martha

Thank goodness for airconditioning! The heat brings out the worst in me also. Martha

I'm sorry to say that these strange symptoms were and still are sometimes the worst part of POTS for me. I was pretty much bedridden for 6 months initially and have tried to learn how to cope with support from this board. Welcome! Martha

Are we still thinking about getting together that first weekend in August? Nina, if you maybe are in NYC to visit your step-dad, maybe you could join us. I don't know if we should consider meeting in or near a hotel in case someone needs to lie down badly. I did have brunch a couple weeks ago at Sel & Poivre on the east side and it was good and reasonable by NYC standards. Martha

CONGRATULALTIONS! You will just love it! My daughter went to Middlebury and spent a summer in their language school. The weather is sooo.... much better in the summer than in the winter and there is a nice crowd in town! Martha

I just got back from an open MRI of my knee (torn meniscus) and had such a reaction to the surrounding noise and overhead lights that I had to stare at while having this test done. I should have asked for earplugs and something to cover my eyes but have never had an open MRI so didn't think of asking before the test started. Anyhow, when I got up off the table 1/2 hour later after the test, I have been dizzier than I've been in a long time and chugging water didn't even help. Then I had to get to the bathroom quick because I was in so much distress. The hammering noise and florescent lights everywhere in the office certainly contributed--I wonder if the magnetic forces of the MRI also contributed. I need to spend a few hours lying down to recover. Martha

I am also curious about how you use licorice root. Is it possible to post? Martha

I have posted this before but ginger tea throughout the day can be really helpful. I like 100% Triple Leaf brand and I know some make their own from the root. Martha

I like Juzo too but they are very pricey and mine also looked like the devil because I refused to give them up after paying so much for them! I also find that anything too tight around my waist makes me worse, and anything that bunches behind my knees makes me worse too. I am also worse after eating a meal. I use the Coolmax socks (20-30) that are only knee high from North Carolina on a regular basis and find that regular heavy-duty support panty hose with alot of Lycra that fit well, for me Donna Karan--I like their tights in the winter too. I would keep an eye out for the percentage Lycra on support hosiery sales too. I have long legs and easily get abdominal bloating, so I need to accomodate both. Martha

Hi again! How about brunch someplace? The food is lighter and the price usually all inclusive. I just wish I could have a mimosa! but I haven't had a drink since coming down with this. Sunday, August 6th would work for me as well. The big NYC public library is usually closed on Sundays I believe. Martha