funnyfrog

Hi KConnections - Welcome to our group. Sorry to hear you were just diagnosed with POTS - I hope you find lots of info and support on here. I was diagnosed 3 years ago - I am our resident insomniac I think, usually up posting at weird hours of the night as I get wired with adrenaline at the wrong time-like right now and yet am exhausted the rest of the day,even though I get plenty of sleep. Good luck on the new meds that your Drs. are trying you out on - If you have questions, we are all here for you. Have a great night!!!!!!!! Beth

Hi Monica - I have been on florinef for 3 years now and the only side effects I have noticed are when I first started it in the beginning I would get a "heavy headed feeling" like something was sitting on top of my head and yet felt a little light headed at the same time. This feeling went away after about 2 weeks. I started on a higher dosage and now am on a lower dosage. Also, I notice that I feel bloated alot and cannot seem to lose weight-My doctor says I am not retaining water. I am on 4 other medications though for POTS so I am not sure if this is the medicine making me feel bloated or one of my others, its hard to say. Sometimes occasionally I will get blurred vision in my right eye and some twitching in my eye, but I cannot blame it on florinef, I think it is merely a symptom of the POTS and an overactive crazy nervous system. Why else would I be up at this crazy hour on the computer when everyone else is sleeping?-Too much adrenaline at the wrong time and no energy the rest of the time when I need it, go figure Anyway, have a good night! Beth

Hi Steven - I am the only POTS insomniac I think up at this hour so you are stuck with my advice for now - First, try to relax - If it is POTS you have, it won't kill you - The symptoms may make you make some adjustments to your life like drinking lots of wator, gatorade, being on certain medications for symptoms if your doctor thinks you need them, but this condition, uncomfortable yes, fatal, its not. If you get really stressed when going into the doctor to get your blood pressure taken, maybe you can go to your local drugstore, most big chains like CVS, Target Pharmacy, etc, have the computerized blood pressure monitors there where you sit down and insert your arm in and it reads your blood pressure. If you get stressed while the machine is doing it, there is a red stop button on it. If your blood pressure truly is high, have your mom take you to a doctor that will listen to what you are saying about your symptoms and take you seriously. I know you are young,17, but be prepared when you go to the doctor & write down times and if you can log your symptoms so that you are not vague and they will beleive what you are saying. Also, POTS can mimick other disorders so you will need to be checked out carefully to make sure that this is what you have and not something else. I hope this helped you a little. P.S. I don't know too much about Atkins Diet so I can't help you with the answers to those questions, but maybe your body is lacking in some nutrient since you have been dieting and losing weight rapidly, so before you continue with this diet, have your mom or dad call the doctor and maybe they can put you on a supervised diet/exercise plan. Have a good night and try to get some sleep!! Beth

Hi Melissa - Welcome to the forum - I would love to hear about your experience at Vanderbilt once you finish after your 2 week inpatient visit there - I emailed Dr. Robertson last November about something and even though he was on vacation, he answered my email from across the world, so he is a very dedicated researcher/Dr. and I would like to know about your experiences there when you are done. I hope you get better or atleast more functionable from this disorder. I am usually up at strange hours, I am one of the POTS insomniacs on this forum and have adrenaline now, but I am tired all day, get about 12 hours sleep each night plus atleast 1 nap and still am always sleepy, except for in the middle of the night like right now, go figure .Nice meeting you. Good night! Beth

Good morning Dayna - I see a gastroenterologist because due to the POTS I have lots of stomach problems, a cardiologist(he is an electrophysiologist too) and once in a while I see my neurologist - Based on what your symptoms are with POTS, you would need to see a specialist who deals with whats bothering you and can alleviate the symptoms you are having in that area - Since we all have different experiences with this disorder, some others here on the forum might also see endocrinologists, hematologists if they are getting procrit injections, etc,etc. I see my family physician every 3 months and he monitors me to keep this in check and change meds if necessary. Hope this helps you. Have a great Monday!!!!! Beth

Hi Amy - Sometimes when we are not feeling as well as we used to and are having "POTS HOLE DAYS "(or weeks) or after first being diagnosed, there is a real adjustment period, sort of like a grieving process you go through for the person you maybe once were and are not anymore and this can make you sad - this is a normal reaction, atleast in my opinion to illness and in order to start feeling better and pick up the pieces and get on the best way you can with your life, you need to accept your limitations that you have right now - Do not berate yourself for what you are not able to do right now, instead try to think positive and celebrate the small things that you can still do every day. I hope I don't sound like I am preaching, but I was diagnosed 3 years ago and yes, I cried and felt sorry for myself in the beiginning for a few weeks, and then I woke up one day and said to myself, hey, I'm lucky- I have a great husband,2 great cats(who are like my children since I don't have any),a beautiful townhouse, great parents and lots of good friends. Once I began seeing things more positively and stopped aching for the life I used to have before this hit me, I was not so sad anymore .If you are having dark,suicidal type thoughts, then by all means, seek medical attention immediately - there is no shame in seeing a therapist or psychologist, being sick changes your life and atleast for right now, you need to accept it and use your energy into getting better and adjusting to what has happened to you for now. Have a good weekend!!! Beth

Hi Jesse - Welcome to the group!! I hope you are getting lots of info on here that will be helpful to you - The fatigue from POTS is one of the worst symptoms - I can sleep 12 or 13 hours,take a nap sometime during the day and I am still tired. I too worked f/t before I got sick, exercised, and was pretty active - This all hit me 3 years ago when I just turned 33. Its a real eye opener to be young and feeling ok one day and black out suddenly and feel crappy ever after. Like Earth Mother said though, the hope is, the same way this appeared, maybe it will disappear one day. The meds also have side effects that leave you tired, so sometimes its hard to distinguish between whether its the POTS, the meds,or in my case also Epstein Barre virus too making me feel so tired. At night though like now, I am full of adrenaline, pumped up with nowhere to go and am a POTS insomniac until about 2:30am usually so that is why I am on here so late typing. I drink lots of gatorade, sometimes I add water to it to dilute it a little just to get more water in since I hate the taste of water alone and now with the warm weather approaching soon, make sure you stay hydrated, cool and do not overdo in the heat of the day if you can help it. I hope you have a great weekend-Beth

Hi everyone!!! This is also a problem for me at the mall - I have found a few things that seem to help though - When I start getting the dizzy,fogged out,overload,buzzing feeling I usually look down at the floors and not straight ahead or toward the stores and this seems to work for me until I can sit down on a bench or something and rest for a little while. Also, I found thast going during daylight hours are much better for me because there are not as many lights on and not so much to overstimulate the nervous system. I know this is all related to the POTS because the first time I went to the mall with my husband 3 years ago after being in the hospital for 5 months & in rehab got me so dizzy and disoriented that I started crying and had to sit down for about 45 minutes until I was able to walk to the car - I still go to the mall, as I love shopping and just people watching and being out and this condition is not going to change any of that. Have a great night!! Beth

Hey Tammy - What about me-You forgot Funnyfrog too, I'm so insulted- ribbit, ribbit - only kidding!!!!!!!! - Welcome to the forum. As you can see, I am a POTS insomniac up at this late hour, but I just wanted to send happy thoughts your way and I hope you start to feel a little better soon and get some of your funny personality back that you said you had before getting sick. I love your Elmo picture/avatar - I wish I could find a Kermit the Frog one like that !!!!!!!!! Have a good night!! Beth

Linda, Thanks for saying that, now you have me teary - When I first came home from the hospitals at the end of July,2002 I didn't drive for about 5 months-I looked at my car in the garage every day and it made me sad that I felt so dizzy and bad that I couldn't even drive - I felt so useless - It took time till I was able to drive and even now, I only drive locally, to the hospital to volunteer once a week and back and to Drs. appts or right here in the neighborhood- My Dr. lets me do this, but there are days when I know my limits and if I am not up to driving I say, well, tomorrow will be a better day and I don't get crazy over it. Have a great night. Beth

Hi Leah - I see Dr. Louis Weimer - He is an Assistant Clinical Professor at Columbia University and his office is located at The Neurological Institute At Columbia Presbyterian Medical Center - The main phone # to make an appt is (212)305-1516 - He is ok, knows alot about POTS, but I feel like I have to ask alot of questions to get info out of him, he doesn't just freely give me the info. His personality is ok - The parking situation in that part of NY is terrible, very expensive and you have to park in a parking lot or take public transportation - My first consultation with him 3 years ago was over 3 1/2 hours long so he is very thorough and he does have other patients with POTS so he is aware of what we go through and does not think we are nuts. Hope this info helps you. Beth ***** As for the 2nd part of your question, he specializes in dysautonomia*****

To LindaJoy & Katherine/Extra Special Mom to Guiliana & Roselover: First, LindaJoy, I am sorry I put you in tears and if I sounded so long winded - sometimes I start and can't shut up-I meant well and hope that I didn't say anything that upset you - If I did, I am sorry ,please forgive me!!, Katherine - I love reading your posts all the time - they are so insightful and I marvel at what a great person you sound like as well as being such a great mom too - I have learned alot from you since joining this forum, you are a truly special person. Roselover - What can I say - Sorry for honing in on your postings - feel free to knock in on mine when I post a topic any time you want!!!!!!!!!!!!!!! I hope you got a breath of fresh air today as the weather is so nice today, atleast here in NJ it is. Thanks again everyone for being there!!! Love, Beth

Hi LindaJoy - Once you have this disorder for a while(I have it since March'02),you come to a point of acceptance and of not caring what others think about you - Atleast in my case, I am so thankful that I can make it around my block, even though I move at a snails pace, because 3 years ago at this time, I was in a hospital, hooked to IV's and feeding tubes and how far I have come - Before I got sick I had a great f/t job working for the State, had a very active lifestyle and was able to move pretty quickly - But you know what? I never took time to slow down and smell the flowers and appreciate all the beautiful things going on around me, so maybe this was God's way of slowing me down and showing me what is really important in life - Believe me, on my sl..oow walks now, I look at flowers on the lawns, birds,squirrels, and have actually met some of my neighbors. If I was walking at a pace that I would if I was healthy, I would probably not notice all that, be listening to my walkman and speed through the walk. I've had plenty of time to come to see that this in a strange way has been a positive experience - I wouldn't wish my symptoms on my worst enemy, but the lessons I have learned and people I have met on my journey since being sick are things that I would not trade for the world. I volunteer one day a week also, for 4 hours a day on an oncology floor at a local hospital. I have been doing this for 2 years, and believe me, some days I feel so sick I drag myself there, but I know that as tired and crappy as I feel, POTS will not kill me and the people that I talk to and volunteer for are way sicker than I will ever be and face their mortality,sometimes people as young as I am. I have learned so much by doing this - It helps both the patient as well as helping me still feel useful in this world - Due to all my complications right now, I am not able to have children, but there are so many people that need someone to just talk to or hold there hand during a difficult time and I love being on the oncology floor once a week for that reason . Sorry to have been so long winded, but my point of the story was, people probably aren't looking at you strange if you are breathing a little heavy or are slightly out of breath, you just may not be at the point of accepting what dysautonomia/POTS has done to change your lifestyle and until you do, you are going to care what others think - Spend what energy you have if you can congratulating yourself on what you can still do well, and if you can't walk or run as far as you used to,so what? You are still you....!! Good night! Beth ......... PS - Roselover - Sorry for replying to Linda so long on your posting, I thought maybe she might come back on here tomorrow and see it.

Hi Morgan - I read your post just now - I have been thinking of you and Jake all weekend. Hang in there and try to think positive until the test results come back - I will continue to pray for both of you and for Jakes health to improve. Love, Beth

Hi - I can sympathize with you about the fatigue - I get about 13 hours sleep each night and a nap for about 1 1/2 hours during the day usually and I still have no energy, but I have been forcing myself to go for a leisurely walk, although I do my walk around my townhouse community as slow as a turtle. I cannot walk too fast because I get dizzy,out of breath and my heart rate shoots up and bp drops, even on lots of meds from the POTS, but a good slow walk seems to help me feel like I am accomplishing something. I may not be getting in shape, but atleast it helps the deconditioning in the muscles from all the laying around and sleeping I have been doing the last 3 years as a result of this condition, along with MVP and EB Virus. Also, some people on this forum have said that Pilates works for them. Maybe a rowing machine or exercise bike or something you can do while sitting would help- I am going to try to work my way up to a few minutes on an exercise bike slowly once I feel better with the walking - Since the weather just started getting decent here, I have only been doing the walking for a short time. Have a good night. Beth -P.S.-I think I am ready for a nap now(only kidding!!

Hi Linda F. - I personally have not seen this Dr. but I emailed Dr.Robertson last year at Vanderbilt in Tn. about a matter and he suggested that I contact a Dr. Julian Stewart in Valhalla NY, this Dr. Stewart is a well known researcher & POTS Dr. according to Dr. Robertson - I know Valhalla is somewhere upstate NY, although not as far up as Buffalo but maybe you could travel a little to see him by car with someone - I am from New Jersey, my neurologist is at Columbia Presbyterian Hospital in New york City so I don't think that would help you too much but if you want more info, please let me know - Have a nice Sunday! Beth

Morgan & Jake - You have been in my thoughts all day and in my prayers- Love, Beth

Morgan - I am thinking of you and praying for Jake and for your family - I hope you will have brighter days ahead, take one day at a time... Love, Beth

Hi Cordelia - Welcome to the forum, I hope you will find that we are all here for you, on good days and more importantly, on bad days, and anytime you have a question or an experience that you want to share with us - Nice to meet you. Beth

Emily-snow????And I though NJ weather was stinky this weekend! See, we should always count our blessings because it could be worse somewhere else! I hope your flannel pj's are keeping you warm on this cold night! Sorry, EarthMother for talking about the weather on your posting site-I hope its warmer where you are! Beth

Hi Earth Mother - I just wanted to let you know that I am thinking about you and will say a prayer for your health tonight before I go to sleep and that you get better and that all goes well at your cardiologist appt tomorrow. Your posts always inspire me and when I am having a bad day I usually read one of your posts on here and it lifts me up right away. Have a good night - It has been a cold,rainy weekend in NJ and even though I am in my PJS with my flannel robe and socks on my feet are freezing, I can't wait till spring really hits the Northeast -Have a good night!Beth

Hi Everyone- Can you believe all the twitches we get?Thanks for the replies!!! I didn't realize that this was such an annoying problem for so many of us - Either its a real big coincidence or our autonomic systems are on overdrive and this is just a new POTS symptom for me that I guess I will have to learn to live with - the twitching has gotten a lot better in the past 2 days and thankfully, is almost gone for now I'm glad too that nobodies twitches have been found to be anything serious - Thanks Joyce,Ernie and Geneva for answering me today, I appreciate it!! Beth

Hi Blackwolf - I know how frustrated you feel - So many times I have the words in my brain and I can't get them out of my mouth correctly - The part of this syndrome that makes us lose our ability to say what we want and think straight and get our thoughts out correctly stinks - Even this sentence didn't come out straight,but you know what I mean - my cognitive thinking has really been affected by all of this POTS. Some days I find it harder than others to get my words and thoughts out correctly and the only thing encouraging I can say is, this could be worse-I hope you climb out of your POTS hole soon and try not to worry about what others around you think if you sound funny-maybe it is their hearing and not our funny ways of speaking Good night!Beth

Hi Jenn - I am on a low dose of florinef - It took me over 3 months in the beginning when I was diagnosed to get used to this drug and my dosage is not a big one because my body cannot handle anything more than 1/2 of a 0.1 tablet in the a.m. - Anything that the doctors tried over that was too much for me, gave me a heavy headed,yet dizzy light headed feeling at the same time. I am also on a beta blocker called pindolol which is not as commonly used as lopressor is, but the cardiologist tried lopressor on me and it brought my heart rate down too low and my bp too low - the pindolol is a beta blocker that works differently in your body than lopressor and since it is hard for me to tolerate most meds, this one seeems to work for me, but in a very small dose though too. I am on midodrine too,5 mg,2x a day - I don't know how much it really helps - my blood pressure on a good day now with all this medicine and salts I add to food is 100/70 and on a day when I am not great is about 80/50-Imagine what it would be without any help from the meds? I hope this info helped you. Have a good night! Beth

Hi Christine - I hope the lesion is not serious and just keep up with your MRI appts and follow what your doctors tell you to in order to make sure it does not get bigger - I imagine that it must be a scary thing - My mom had a brain tumor 3 years ago and had surgery to remove it - It was benign and she goes every year for a CAT Scan to make sure it has not grown back - Best of luck to you. Beth