funnyfrog

Good luck with the procedure - I had it done 4 years ago for my gastroparesis - It was only experimental then, not approved for that use and I had to be transferred from a NJ Hospital to Temple University Hospital in Philadelphia to have it done. It really helped - I only had 20 percent of food digesting, and the other 80 percent was sitting in my stomach with delayed gastric emptying. It worked so good that for a while after the procedure, the second you get the urge to move your bowels, you better be near a bathroom or else. Atleast in my case, that is what happened. It made it hard to control my stomach for a long time. It did help me though, so I hope it works for you. Beth

Hi - Add me in to the teeth problem category - Like TeaRose, I have had many root canals in the past 2 - 3 years and just yesterday, was at the endodontist because I have an infection in the roots of one of my teeth that he had to clean out and put me on antibiotics and after it clears in 3 weeks, is doing root canal on that tooth. I never had root canal problems until I had POTS. I asked him about this yesterday and he said that certain meds change the amount of saliva that go to your mouth as well as some meds affecting the amount of calcium you are getting and all of this contribute to the problem - He said he would do more research on it for me. Anyway, today my mouth is swollen and hurting a little, but otherwaise I am ok. Also, make sure when any of you go to the dentist, you get the novacaine without epinephrine in it. Its called something else, but if you ask for it , the dentists have it and it is better for us POTSY people. Happy Easter and last day of Passover to all of you that celebrate the holidays! Beth

Weekends work good for me too!!! Beth

Hi! I would love to meet with all of you also - I live in NJ, but could take the Express Bus into the Port Authority and meet you all in Manhattan somewhere - Even though I do not post often, I check the website almost daly and have lived with having POTS, gastroparesis and Epstein Barr for over 4 1/2 years now and it would be so helpful to meet others in person that experience what I do on a daily basis, without thinking we are crazy. Good night! Beth

Jan, That was a truly beautiful memorial for Jeff. I am so sorry for your loss. The pictures made me laugh and cry. He is out of pain now and though it is so hard on you to walk alone here, know that his spirit will always be with you, so you truly will never be alone. I don't post often, but I have been keeping up with Jeff's journey through his sickness as you posted and am glad that you had a chance to spend the time you did together through his illness and support each other through such a difficult time. You are so strong - Take care of yourself. Love, Beth

Nina - I am so sorry about the passing of your special kitty kat Jeri - I have 2 cats myself and 1 dog - My oldest cat Shtinky is 12 years old, Whiskers is 9 and my dachshund Otto is 2 years old. Since my husband and I do not have children, these are our babies and I can only imagine the sadness you are feeling today, even though Jeri is out of pain now and is at the Rainbow Bridge. There is a great website , www.petloss.com that has a candlelight ceremony for the departed animals every Monday night and it helps you deal with your grief at such a tender time. I too lost my dachshund that I grew up with and it took me many years to be able to smile instead of cry when I look at pictures of him and think of him. Hugs going your way and Otto, my dog is on my lap now and sending a stinky kiss your way through the computer to make you feel a little better. Love,Beth

I hope you will have a better experience than I had with Reglan - Heres my story: I was in the hospital for many months about 4 years ago when I was at my worst with the POTS symptoms and they didn't know what I had yet at that time. I was only digesting 20% of my food and the rest was sitting in my stomach - They gave me Reglan to try and help the gastric motility in my stomach and within 1/2 hour of the first dose, my heart rate went crazy, I had Parkinsons like symptoms for a day and a half until the medicine wore off and I couldn't sit still or sleep - The Dr.s said this is usually a pretty well tolerated drug and I was one of those rare cases that that get the Parkinson's like symptoms from it - They said they never saw a patient so sensitive to drugs, even though they were giving me chilrens doses. I will never take Reglan again as long as I live, it was the worst reaction I ever had to a medication. Beth

Hi everyone - Add me to the "nuts" pile too - I have had POTS for 4 years now and have a had pain in my right lower abdomen, usually in the same spot for the past few years now. I too had alot of tests done that my gastro Dr. ordered and they all came back normal. I have 2 small kidney stones that have been in the same spot for 4 years also and they said that would not cause the pain. I never had this pain before having POTS. I had a colonoscopy about 8 months ago due to this pain and that came back normal too. I am glad that you are all as "nutty" as me. I don't even mention the pain to my Dr. anymore because I am afraid he thinks I'm crazy. When you press on my abdomen, I am in alot of pain so I try not to press on it and not to think about it. Hope you all have a good night. Beth

I am glad over $400 was raised - I can't wait to get my bracelet and earrings in the mail. Michelle,thanks for all of your hard work! I may not post often, but I check in with the site almost every day to see whats going on and it helps me live with this annoying syndrome and have a sense of humor about it!!! Beth

I have problems with light also, esp. in places with flourescent lighting like Home Depot and the supermarket - I try to look down at the floor as much as possible in these places and not focus in on much in these stores, as the more I look straight ahead, I get dizzier and get a headache faster. Usually, once I leave these stores, the dizziness passes within about 1/2 an hour. Sounds strange, but it has been this way for the past few years since my dysautonomia began. Before that, I didn't have any problem with lights. I am also the same way in the mall and sit down frequently and drink alot while there to help me.

I would probably buy a large in short sleeve t, xl in a long sleeve - Hope it is in any other color than white and all cotton, as I sweat alot from the POTS and can't wear anything that is not 100% cotton.

Hi Jan - I haven't posted in quite a while - Have been feeling sick and not up to going on computer until the past day or two - My thoughts and prayers are with you and Jeff. Even though I am not one of the "regulars" who post frequently I think of both of you often and hope that you are both doing okay and will come through this experience stronger and wiser. Love, Beth

Hi Finette - Happy Holidays - I have been on Pindolol now for 3 years and my cardiologist won't take me off of it - It has brought my heart rate down from almost 175-200 at times to about 60-75 sitting and about 80--90 standing up. In the beginning, they tried Lopressor which is a more commonly used beta blocker but my body did not handle it well and even with them adjusting dosages, it was bring my heart rate too low, at one point down to 29 when I was in the hospital so they switched me to this and I've been on it since. I am tired alot, but I am also on 3 other meds and besides POTS and MVP, have chronic Epstein Barr Virus that just won't leave, no matter what, so I do not think it is the Pindolol making me tired, probably a combination of stuff. I am not on a huge dosage of the medicine but it helps alot in my opinion. Good night! Beth

Hi Lois - I don't think your posts are irritating at all - I volunteer one day a week for a few hours on an oncology floor at a local hospital and I think of you, believe it or not, often - POTS, though uncomfortable and life changing, is not terminal and by being on the oncology floor once a week for the past 2 1/2 years, helping those who are far less fortunate than I, it keeps what I have in perspective, no matter what complications arise from my POTS and CFS and lately, there have been many. Yet as crappy as I feel some days, I make sure to drag myself to help give an encouraging word, a smile or a small trinket from the humor basket I keep with me on the floor. You are an inspiration to me and I hope you recover soon from the trials and tribulations you are facing with cancer - You are stronger than you think!! Also, best wishes for a happy and most important, HEALTHY New Year!!! Love, Beth

Hi Finette - There is a Dr.Julian Stewart in Valhalla NY that deals with pediatric patients and is one of the leading specialists and researchers on dysautonomia - I have not seen him personally - my doctor is Dr. Louis Weimer at Columbia Presbyterian Neurological Institute and I do not think that he sees pediatric patients but I had contacted Dr. Robertson at Vanderbilt a few years ago and he had suggested that I get in touch with this Dr. Stewart in Valhalla - You may want to google him to find out more info - Hope this helps you. Beth

I'm so forgetful since having this, that I say if I ever get Alzheimer's I won't know it - Not funny, but true. Some of our stories sound so farfetched that only we would believe them, having lived through alot of the same experiences. I spend most of my life in the bathroom lately with stomach issues from POTS and the GI problems that I have managed to get from it, so imagine the line of people yelling for the bathroom at a party if there were more like me to get out of there, what a sight - too bad we can't plan a converntion - it would be a blast!!!!!!!!! Beth - Then again, with all our brain fog we would probably arrive in different cities and forget where we were going!!1(ha,ha - only joking-its true- if you can't laugh about it, you would cry)

Hi Pete - Welcome - I know it can't be easy for you living with 2 people you love with this disorder, but thank you for trying to understand it a little more. It really changes day to day life activities and I commend you for trying to help your wife and daughter and supporting them just by coming onto this forum - Maybe you could clone yourself into my husband's brain??(Only kidding )Have a good weekend, Beth/New Jersey

Hi Persephone - Usually by 3-4pm, I am wiped out too and have to take a nap, whether I want to or not I zonk out wherever I am, usually on the living room couch for about an hour. It doesn't matter if I sleep a little later in the morning or not, what time I take my medications, or anything. If I am out somewhere and don't get a nap, I wind up usually getting a dizzy spell or headache and then have to come home sooner than later anyway. Usually, about 8-9pm, I get a second wind and then am wired till atleast 1am. I have been sick for 3 years now and this sleepiness has been like this since the beginning, but when I get an episode, usually I have to take more than 1 nap a day - I feel like a cat!!! Beth

Hi India - My potassium was fine when I was on Florinef, for almost 3 years, but the weight gain was something that finally made me stop taking the Florinef, against my doctors advice - I have headaches off of it, as well as when I was on it - Each of us has a different experience and different side effects from medication - I was having alot of dental issues that I feel were a result of being on this corticosteroid,even if it was not a great big dose by the time I went off of it. After the withdrawal effects of the Florinef, I don't feel much different off of it than I did on it, except not as bloated - I still get just as dizzy,sweaty, POTSY feeling, tired, etc. so if your doctor thinks this med might help you, maybe you should try it - What works for one of us or does not work for one of us varies greatly. Also, since May of this year when I stopped the Florinef I have not been very hungry and without trying, have lost a little over 10 lbs. Beth

Thank you Emily for your donation to sponsor the forum and also thank you to Michelle for all the work you do keeping this forum going - It is a great help to me and to so many others - Beth

Hi Jan - I am still praying for you and Jeff and am glad that the tumor has shrunk - Hope you have a great time shoe shopping with the grandkids on Wednesday - Do you go for ice cream afterwards? I used to love doing that when I was real little after shoe shopping, I'd beg for Carvel and my Dad always gave in - Glad things are looking up for you both. Beth

Hi Lois - I am so glad that you are doing o.k. and that surgery went well and that you are on your road to recovery - I am so sorry that I did not get a chance to send my well-wishes for your surgery before you had it, my brain is in a real fog sometimes - May you have good days ahead and on the ones that are not so great, know that we are here to support you. Blessings to you. Beth

Sue - I just saw this posting now - I will pray for your neice and keep her in my thoughts - My husband is a firefighter and cuts out people from cars too with the jaws of life from horrific accidents and by some miracle, despite being badly injured, alot of ppl survive and come through these ordeals without even remembering what happened - Beth

Hi Patricia - I want to tell you that I have given much thought to what you have said on this topic over the past 3 plus years since I have been sick and though it is not easy to accept, I agree with your viewpoint. I am 36 and was getting ready to start a family before I got sick - I am happily married, going on almost 12 years now and I have consulted with my regular doctor, as well as cardiologist,gastro and neurologist and high risk ob/gyn and all of them do not feel that I could safely carry a baby to term without major complications happening - I spent around 5 months in the hospital 3 years ago and am on meds now to control my symptoms, but cannot work and am limited in my activities -Am I bitter? No, everything happens for a reason and I have looked into adoption, but we cannot afford private adoption and so maybe one day, we will try to adopt through the state program or maybe by some miracle I will wake up and I will be better-Who knows? As much as I want children, it is not fair for them to suffer the consequences of my illness, whether it is because of some medication that I needed to survive during a pregnancy that was not safe for a fetus, that they were born premature or because I have so many gastro problems from POTS and gastroparesis, that I needed TPN while pregnant and they didn't get enough nutrition while in me? Is this fair? I personally in my case do not think so and so that is why here I am, with my 2 cats, who I love dearly and they are 11 and 8 years old and are like children to me. Thanks for bringing the topic up - I know not too many people will agree with me either - Beth

Sophia - I just logged on now and saw your message - I hope your conversation with your siblings and mother went as good as could be expected. My thoughts and prayers are with you. Beth