funnyfrog

Hi Christine - I never heard of a PONS Lesion,but I just went onto www.google.com and typed in "pons lesion" and there seems to be lots of pages of websites about it - Hope this helps you, sorry I don't have more info. Beth

Hi Christine & Everyone that answered me today - I am so glad that I am not alone in these weird twitches, it sounds nutty if you don't have POTS so I'm glad you all didn't think I was a total nutcase for asking my question - The twitch today wasn't as bad as yesterday or the rest of this week was,although it is still here - I was afraid to mention it to my doctor, he probably thinks I am nutty already anyway - I'm sorry though that you have these twitches too though.. I can't fall asleep, like usual, I am wired in the middle of the night and exhausted all day so here I am on the computer. Good night everyone Beth

Hi Earthmother - I just turned on the computer and read your post and you gave me my laugh for the day about feeling like a fish caught on a hook - glad that the POTS hasn't done anything to your great sense of humor!! I am going to go food shopping today with my husband and get some bananas-unfortunately, my stomach cannot handle orange juice though. Maybe I will look into the magnesium supplements too-Thanks for your advice and hope your lip twitching stops soon - you know,its get warm out and fishing season starts soon,watch out! Beth

Hi Morgan - Thanks for easing my nerves - I'm glad that its probably nothing to worry about then - Thanks again for your reply. Good night! Beth

Hi Steph - Thanks for answering me - That is strange that you said the same thing about 20 minutes ago - Isn't it annoying? This twitching is driving me up the wall. I wish it would go away the same way it came!!! Have a great night! Beth

Hi Everyone - I just have a quick question - For about the last week, I have had this annoying twitch in my right eye, mostly when I am blinking but sometimes when I am not. I am not under stress or anything like that so I know its not a nervous condition and I have been extra sleepy and fatigued for about a week now also - I have had POTS since March,2002 and also have Epstein Barre Virus but this twitch is new and I was just wondering if any of you get these involuntary twitches and is it because our autonomic nervous system is so screwy that all of a sudden this is starting now? Happy Easter to Everyone that is celebrating tomorrow!!!! Beth in NJ

Hi Frank & Christine - Welcome to the forum - I am sorry that Christine has so many of the symptoms you listed - I was diagnosed 3 years ago with POTS, I also have MVP, Epstein Barr Virus and was hospitalized for over 4 months 3 years ago and had so many gastrointestinal problems that I was on TPN, which is Intravenous feeding. Aslo, the lightheadedness and dizziness was so bad that I thought I was going to die. I am on lots of meds now, and as you can see I didn't die and still have my sense of humor so let Christine know that POTS or dysautonomia has never killed anyone yet and even though it changes the way that we need to live our lives and some adjustments are harder than others, life will get better eventually. I am on Topamax, still get lots of headaches though, am also on midodrine(pro-amitine),pindolol,5 mg.lexapro per day for dizziness and florinef. I can no longer work - I had a great job with the State Govt and now I tire real easily, still have lots of gastro and gyno problems resulting from this, get out of breath easily,and deal with other issues but I think positive and focus on what I still can do and not so much on what I can't any more or what I am missing out on. The drug you read about,prygesterine(I know I am not spelling that right) has lots of side effects and is used to treat patients with myestesia gravis - Make sure that your doctor goes over the benefits and risks with you carefully before deciding whether or not Christine would want to try it. I wish you both good luck with this - If you want to email me, you can. Have a good night. Beth in NJ

Hi Caitlin - I was diagnosed with POTS in May,2002 and I had a huge problem with delayed gastic emptying and motility - I was on TPN with a PICC line and went from 115 lbs to 91 lbs within 7 weeks - To make a long story short, I was sent up to Temple University Medical Center in Philadelphia Pa. to a Dr. Robert Fisher(I think that was his name, with this POTS brain fog, its hard sometimes to remember names exactly correct) and I had Botox injected through an endoscope into my pyloris and this loosens your stomach muscles enough to let the food go through and I went from only keeping 20% of food in to normal digestion - This was an experimental procedure at the time, I am not sure if it has been approved yet all over the country for use by now, but it helped me. I still didn't have much of an appetite though even after this was done, so I was given a drug for a while called Periactin and that really helped to stimulate my appetite and get me eating again. Hope this info helps you and I hope you feel better - My POTS occured because of a virus and I still have it with lots of side effects, but keep your chin up, things will get better - Everything happens for a reason, so just hang in there. Have a good night. Beth in New Jersey

Good Evening Ben and welcome to the site - I am glad you finally decided to post your first intro after reading our posts for awhile - You are very brave to take your first step and tell us your story, nothing would surprise me with what your doctors would think-There are also some here in the states just like yours in England that do not know much about POTS and unless you take time to educate them and hope they are willing to listen, they think you are crazy. On a lighter note, I hope you have a joyous and healthy year in 2005. I too am up in the middle of the night like you, so I figured I would welcome you since I cannot fall asleep yet. Have a great Saturday!!Beth in New Jersey,United States

Happy New Year Everyone and most importantly, may you all have a HEALTHY one!!!!!!!!!!! Thanks for all the support and information I have gotten from all of you since joining the forum this September. Speak to you all next year! Beth in NJ

Happy Chanukah - just wanted to wish everyone celebrating the happiest of holidays and a prayer for a HEALTHY and Happy New Year!!!! Don't eat too many potato latkes, only kidding!! Beth in NJ

Good luck Goldie on your trip to Mayo- hope you have a safe trip there and back home and make sure to give us the lowdown on Dr. Low when you get home(that sounded funny,didn't it?sorry )I hope you get all the answers you are looking for. Happy Holidays! !Beth in NJ

Sorry to hear you are feeling so bad - I hope you get some relief tomorrow atleast when your doctor comes in. I don't have any wise advice to offer but I hope that if you went to lay on the couch, that maybe you will luckily fall asleep I wish I could sleep good at night. I am so wired it is terrible. Last night I put up my Christmas decorations which took every last bit of strength out of me and I couldn't get out of bed today until about 2pm - Could you imagine? It takes me usually 1-2 days to recover from anything that uses even the slightest bit of physical exertion. If I'm like this at 35 yrs old, could ya see me at 50? Oh well, feel better Blackwolf. Good night, Beth in NJ

Hi Nina & Everyone that helped make the bracelets possible - Here I am, up in the middle of the night like usual, wired and ready to go and all excited about the bracelets - I just ordered mine and can't wait to receive it. I hope to raise lots of awareness by wearing it and hopefully I will try to sell some once some of my friends and family see it, to help and support DINET. Nina- Do we have to put anything on the bracelet before we wear it so that it will not tarnish? Anyway, have a great night, or morning - Hope you are sleeping well right now . Beth in NJ

I can only take warm showers now - I cannot have them hot anymore or I will faint in the shower - I use a shower chair anyway just in case, but my doctor said its because the heat makes the blood vessels constrict(I hope I got that right-with my brain fog I think thats what he said anyway)and it lowers my blood pressure too much-I have already blacked out 2 times in the shower so I make sure to keep the water not too hot. Sorry my terminology is not great, but even on meds, your bp can still drop from the heat if it affects you this way with your POTS symptoms-Since everyone is different, I can only speak for myself. Beth

hi Sue- I have no idea how to start a support group and don't have lots of energy either, but I'd be willing to give it a try if some one could give me pointers on how to do it -I know nothing about starting a support group or what to do first,but I think it would be a good thing for us to be able to share our experiences and help each other. Anyway, have a good night. You can email me further if you'd like-my email address is at the meet others program on this website. Beth

Hi Everyone-Just wanted to add my Thanksgiving wishes to all of you. I am grateful to all of you for listening to my questions and stories and thankful for all the wisdom and wonderful info.you give me here. I am thankful that you are all here for me, on good days and bad days and it helps alot to know that there are others who understand what it is to live with this every day of your life. You are all very special to me and Beverly, I will say an extra prayer at dinner tonight for your family and Nicole as she is on my mind and I hope she gets better sometime soon. Happy Turkey Day!! Beth

Hi Angela - My name is Beth - I live in mid NJ also - about 25 minutes from Princeton, I live further South though, closer to the Freehold/Englishtown area. I was diagnosed in 2002 and in terms of Drs. in our area, my cardiologist is an electrophysiologist who is affiliated with St.Peters & UMDNJ/R W Johnson in New Brunswick-Hes ok,personality could be a little better but there is another cardiologist at the practice that I could give you his name if you need it that has a better personality and diagnosed me,even though he is not the one I see at the practice now. My neurologist is up at Columbia Pres. Neurological Institute in NY, Dr. Louis Weimer, he specializes in dysautonomia but you have to pull information out of him-he knows alot but if my symptoms get bad again(right now they aren't good,but they could be alot worse)I am going to try to see Dr.. Robertson at Vanderbilt University Hospital in Nashville Tn. He is supposed to be very good and has been doing research on POTS for over 20 plus years. I hope you feel better soon - I wish we had a support group here in Central NJ for POTS-Most people never heard of it. If you want to email me, my email address is on the meet others posting. Happy Thanksgiving. Beth

Hi Beverly - I am glad to hear that Nicole is home with you-She is so lucky to have you for a mom, caring for her and trying to hard to get her help to get her better. I don't have a great memory so I forgot what state you said you live in, but did you try to get to speak to Dr. Robertson at Vanderbilt University Hospital in Nashville, Tn? Maybe Nicole would be able to get in there sooner - Dr. Robertson has been doing work with POTS for over 20 plus years and maybe would be some help for Nicole - Just a thought, If thats not an option, I agree that you should keep the Feb.appt at Mayo in the meantime. I will say a prayer for your family and esp. Nicole for her health to improve and will be thinking of her this week on Thanksgiving. Have a good night. Beth

Hi Everyone - Just to keep you all posted I went to see my electrophysiologist/cardiologist on 11/15 and he scheduled a nuclear stress test and echocardiogram for 12/14(my b-day )to see why I am having so many problems with my breathing and heart racing when exerting myself even a little, even though I am on beta blocker, as well as other meds. I had the holter moniter done a few weeks ago and it didn't show much except that my heart rate was going up to 120 bpm at some points,even though I am on pindolol to keep it down,but basically, it really didn't show anything,which is what I figured would happen. Anyway, I hope I don't pass out during this stess test because usually after about 2 minutes of physical activity, I am dizzy,huffing and puffing and its not a pretty sight. If any of you had this test, let me know - I'd like to know what to expect. Thanks. Hope you all have a nice Thanksgiving and spend lots of quality time with your family and friends this week!!!! Beth in NJ

Hi Amy - Sorry you have been feeling so bad today and over the past 3 months. POTS is really inconvenient, but once your doctor gets your symptoms somewhat under some sort of control, trust me, you will feel a little less scared and not so much have that impending doom feeling like you are going to die. I've come to terms with POTS, realize that I probably will never be symptom free and live one day at a time. Some episodes are scarier than others, but usually by having your doctor adjusting the dosages on your meds or somestimes taking you off of a med, it will help you. I hope life gets better for you and that you can try to enjoy the holidays,even a little-just think-even though what we have stinks, there are so many people who have things alot worse and are terminally ill, whereas we may not have the best quality of life each day, but try to appreciate the small things you can accomplish right now and don't get too caught up in what you cannot do now- You cannot control what your autonomic nervous system is doing or not doing. Take care-Have a restful Sat.night Beth in NJ

Hi Amy - I am glad you found us - Sorry to hear you were diagnosed with POTS also - You will come to find that you are going to have good days and bad days with this, don't let a bad day depress you or drag you down - Take one day at a time because the symptoms fluctuate so much, even on all our medications and don't get to bogged down with the #s of your blood pressure or heart rate-Go by how you are feeling and try to live as full a life as you can. I wish you the best of luck. Welcome!! Beth in NJ

Let me clear that up-I think I typed it in wrong-5 mg. is a half of a pill, not 1 and 1/2pills-sorry for the error.Beth

Hi Jan - I am on 5 mg of Lexapro in the a.m. and have been for over a year now - I find it helps with my dizziness somehow, I am not as lightheaded and "dizzy feeling or spaced out", but I have gained weight on it and even though I do not eat alot, do not eat alot of junk food, I had to be put on a low dosage of another drug to counteract the effects of the weight gain. Also, I get real sleepy during the day and sit down and wham, I wind up taking an hour-2 hour nap without knowing I was going to, but then at night I am wired and ready to go and cannot fall asleep until late. All in all though, I would recommend the Lexapro in a low dosage, 5 mg that I take in the a.m. is 1 1/2 a pill. Good luck! Beth

Thanks everyone for all of your replies - Atleast I will feel a little educated when I get the report back later this week from my doctor and when I see the cardiologist next Monday - I will keep you all posted. I hope everyone has a good week, thanks for all of your support.Beth