janineerrn

Hi Guys, Just got back from my new doc. She is wonderful. Knowledgable about POTS, refilled ALL my rx's, doesnt want to retest to prove I have POTS. I am so happy. Feels like a big weight has been lifted. She is sending me to a rheumotologist to be worked up for CFS. She thinks that explains my chronic sore throat (dont know about cfs yet, need to read.) But my tonsills need to come out anyway.. (will put that off as long as possible.) I am worn out from a long day. Going to nap. Thank You All!! for the prayers and kind words. Peace Janine

Ok you are my Lunatic twin...... but we are lovely

POTSY to me is so many things. The best way to describe it is.... over sensivitve to everything. every part of me has a symptom, nausea, hot, chills, skakes, oh so tired but I still am able to get out of bed. Then I have adrenal storms where I HAVE to stay in bed or I hit the floor and feel like I am going to die, the oh too familiar feeling of impending doom. It stinks!! Janine Lunatic I couldnt have said it better myself, you are my evil twin!!!

Yay, Woooooooooooooo Hooooooooooooooooo Always wonderful when something makes you feel better!!! Janine

Here we go again.... New Doc tomorow. Will she take me as a patient? Will she manage my illness? I really hate having to prove myself... geesh. Peace Janine

Tell her Im thinking about her and I hope she gets better soon. Please keep us posted. Janine

I was told and researched that both wellbutrin and lexapro help to kep the nerves functional in the long run. Basically to prevent deterioration of the nerves. Also I believe I read that haveing these neurotranmitters more redily available helps with swings and should stabablize reactions. Il have to find the articls. Janine

Buy organic and juice it! Peace

Hi, My thoughts are with you and your daughter. I can only imagine what you all have gone through. I think once you get her to a good doctors who knows about POTS, life will get better for you both. One of the hard things I found was not having a proper diagnosis for a long time. The routine diagnostics and medications for symptoms were making me sicker and stressing out my body which only made me feel worse. The nurse in me wants to ask you a zillion questions.......... Good Luck Janine

Hi, I never got wisdom teeth so I dont know about that. I did have a molar pulled after 3 root canals and 2 crowns. $3000 and 2 years later it still throbbed so I said pull it! It wasnt bad, but I have a sensitivity to the epinephrine in the novacaine, its in there to constric the blood vessels to minimize bleeding. I have to make sure they dont use epi on me, it sends me into tachycardia for days. Good luck Janine

Congrats Morgan, I bet your sore! Rest and feel better...... you can have your second honeymoon when you feel better Janine

Hey G/F, Im glad you got in touch with Bev. That is pretty quick for an appointment, I have been waiting over 3 months to actually see the new EP. I have been in and out of bed with rip roaring tachycardia, heart flip flopping and hand and feed freezing. Last night my pressure must have spiked bcuz my nose felt like it was going to explode.... I thought of you. I am going a little bonkers too.............. just got to deal with it until I can get seen. Hope your doing better today Janine

Take a Valium G/F!!! Here if you need me Janine

Hi, Iodine was added to table salt to prevent iodine deficiency in the general public (same concept as fluronated water). You only need a small amount, it helps with thyroid function. I eat a lot of sushi and nori so I do not worry about getting enough. It should be as simple as adding a shake or 2 of table salt to your food a few times a week if you dont mind using table salt. Janine

My legs do not change color, I didnt think I had pooling. I get Reynauds all the time, so I am used to my hands and feet turning blue but its from the opposite, vasoconstriction. Sometimes I get edema from the florinef. Janine

I Google POTS and then go look at the footnotes and go to the studies. I was reading the following and went to the footnotes, but the following is clearer...Blood pooling in the calves was measured simply by measuring the calves after laying down for and hour and then standing up and measuring again in 10 minutes (wonder how many paased out, dont think I can make it ot 10 min) I did this and WOW I never realized my calves grew when I stood up........ Pathophysiology There are several hypothesized causes of NMH and POTS relevant to CFIDS; regardless of the cause, all lead to inadequate blood circulation that may reduce the amount of blood getting back to the heart and brain. Patients may have low blood volume throughout the body17,18,19 or their blood may pool excessively in the extremities10,11 or both. When healthy people stand, gravity causes about 750 ml of blood to fall to the abdomen and legs, resulting in a decrease in blood flow to the brain.20 In patients with POTS, cerebral blood flow decreases more prominently while standing.21 In one study of adolescents, the amount of blood that pooled in the legs was highest in CFIDS patients and second highest in POTS patients, as determined by measuring the circumference of their calves while lying down and again while standing.7 When the heart receives less blood from the limbs during standing, the brain releases chemicals and alters the pulse and blood pressure in an effort to get the blood flowing upwards again. When this chemical response is accentuated, as in NMH and POTS, patients can develop a rapid heart rate (tachycardia), low blood pressure (hypotension) and orthostatic symptoms (see "Types of OI" above). CFIDS patients can have either NMH or POTS, and some have both conditions.

Hello, I found out something interesting today through the info in my LTD policy. If you are on SSDI you have a 9 month "trial work period" where you can go back to work and continue to receive the same benefit, no reduction, and it doesnt matter how much you make. I feel really lucky that I have been aproved for the LTD I have, I get 60% of my salary and I thank God every day!! I almost lost everything and thought about how horrid it would be to have to sell my house and use the equity to live and rent and have no place to retire to (I plan on retiring from my disability at some point, AM I RETIRED, OMG never looked at it that way, gonna cry now) My LTD requires me to apply for SSDI and what ever that amount is will be deducted from my monthly LTD check. Which made me think They dont want us to survive do they? I paid for LTD while I worked, I paid into social security. Why cant I have both? Why do I have to fight for it ? Why am i being treated like Im lazy and I sit home all day and eat bon bon's in bed all day in my pink fuzzy slippers? I would do just about anything to go back to working 60-70 hours, 12 hour night shifts in the ER. I loved my job!! Ok so I am not lazy, Im just exhausted from my illness and fighting with the doctors and medical insurance and rx and medical records and the flu. Now I have to pay a lawyer a big chunk of money I need that will be deducted from my private LTD benefit............ umm i hope my LTD company is providing me with a lawyer or am I too scared to stand up for myself and make waves because I know someone is being paid a lot of money to be scanning my life and paperwork with a fine tooth comb to look for any reason to drop me so i am forced to give up my bon bon's and move to public housing. Someone started a thread on feeling like the ground was moving underneath them.... Its the system, all of them, the medical, government, our society, they each have a hand on the end of the rug that is under our feet and they are yanking on it trying to pull it out from under our feet. Are we ever allowed to catch our breath? Peace All, Janine

Hi Morgan, The doctors order sounds perfect! Now you better get a license to drive that thing, and a horn. We will have to find you some really cool bumper stickers for the back of the seat. Remember not to run over anyones toes! I had a family member with a powerchair (my uncle, total maniac in that thing) he ran over my toes and they were balack and blue forever. I see power chair coming my way in the future, Im going to need some really big all terrain tires on mine to get around the farm. Im excited for you! Janine

Hi Julie, Been there with the bowel thing. You really need go sit on the pot for about a half hour everyday, several times a day at the same times (bowel training) ( I bring a pillow) I either cant go or have major diarrhea, woo hoo. I ve been scoped both ends, joy, several times. I insist they put me out. If they are looking to see if your diverticuli have gotten worse, a CT with contrast or low GI series can show that and it less invasive. But if you have to drink the contrast or barium for the xrays your bowel problems with increase. (I pooped white bricks and thought I was going to die on the pot) Dont be embarrassed, everyone poops, some more frequently than others.... Janine

Hi H, Oh what an image I had gotten when I read that. All of us together, puking, passing out, downing water, poppng pills. LOL, party games, see who can stand up the longest, who has the most pills to take, who can take all their pills in one gulp, who can crawl to the bathroom the fastest. Seriously, it would be great if we could get together in some blissful place. Janine

Im right there with you. Just waiting to pass out, major surges. UGH Janine

Hi Check out the "Blood pooling in abdomen" topic. Janine

I get it too. I also have restless leg syndome, i can tell the difference between just the potsy ache and the rls. I think it is because of poor circulation in the legs which causes lactic acid to build up in the muscles. Lactic acid is a byproduct of muscle contraction, so the more you move the more you make and if there isnt adequate blood flow to carry it away it stays in the muscles and causes aches and cramping. I cant do things like a hot bath or massage because then my bp drops from the blood going down to my legs. Janine

My GI symptoms are pretty bad. Sometimes I look pregnant from bloating at which point i take Reglan to empty my stomach. In my case I believe it is from the lack of blood to my gi system due to my wacko ans. When you eat or drink the blood normally goes to your gi system so you can digest and pick up nutrients in your blood. I bloat because it just doesnt move. I dont thinks its blood pooling, just the blood flow to my gi system is longer than ist should be for normal digestion and my body is working harder to digest. I get full so fast and bloat so much i "eat" more liquid meals now, they go down easy. I am more concerned with nutrition than I am with taste. I juice organic fruits and veggies, or buy those "Naked" juices in the store. Dont get me wrong, I still go for the cheesecake but I only can manage a few bites. After i eat anythiing, even the juices I sweat, i get hot and cold, In have nausea and get terrible stomach cramps. Sorry i know its horrible wish I had more advice to offer Janine

Im sorry. I know how much it hurts not to have support, especially from your family. Huggggsssssssssssss Janine