funnyfrog

Hi Mindy - I have an Omron Automatic Blood Pressure Monitor Arm Cuff that also takes heart rate. It is pretty accurate - It reads about 5 points higher on the bp than the manual reading the nurse gets at my drs.office, so when I use it I just deduct 5 points from my top bp #, but my heart rate is usually fairly accurate. You can reach Omron Customer Service at 1-800-634-4350 for more info or look on their website at www.omronhealthcare.com - Hope this info. helps you. Have a nice weekend . Beth

Hi Mindy - When you get a chance, if you can,email me some info and a picture of the angels-I volunteer once a week on an oncology floor at a local hospital and the nurses and myself and the other volunteer on my team are all called "Angels of Oncology" and I know that they would buy some from me to help raise money for this cause,especially that they know me for 1 1/2 years now and they know about my POTS and how it affects me, so I would love to help you raise some money for DINET. You can get my email on the meeet others program. Have a great night. Keep up the good work - You are an angel on Earth

P.S.-Excuse my typing and spelling errors - I guess the brain fog is setting in,usually I don't spell that bad. Beth

Hi Calypso - My breathing problems began not long after my POTS began 2 years ago, but in the past 2 months the breathing has gotten alot worse. I walk up a flight of stairs in the house and am so short of breat that I am huffing and puffing and have a tightness sometimes in my chest that feels strange - This is fa fairly new feeling so I figured maybe I should get it checked out sooner than later - Thanks for asking. I woke up from a 2 1/2 hour nap on the couch a little while ago and now I am wired and ready to go, but at 1:30am in NJ with a holter monitor and my pajamas on, I don't have anywhere to go so I figured I would come on here for a little while. I hope it is not the middle of the night where you live right now. Good night. Thanks for your reply - I appreciate the information Beth

Hi Dave and Morgan, I just wanted to let you know that you are both in my thoughts today and I hope that you are both getting plenty of rest,fluids, taking care of each other and Morgan, how lucky you are to have such a wonderful husband - and Dave, even though I am fairly new to this website, just by reading Morgan's posts about everything and how highly she speaks of you, you have found an angel on earth and I will say a prayer for both of you for your health to get better. Have a good day. Beth

Hi Merrill - Thanks for answering so quickly - I had the tilt table test done in 2002 when they diagnosed me with POTS. Thanks for the info about asking the question about the hr while I am sleeping. I am going to write down all these questions so I won't forget what to ask when I go to my appt. I forget everything these days-Its so frustrating The upside is if I ever get Alzheimers, I won't know it!!!Not funny, but true. Thanks again for your info. Beth

Hi - I just got home from the doctor a little while ago- They put on a 24 hour holter monitor to see if they could figure out my shortness of breath issue and see if my heart will show any ansers to the problem. Have any of you benefited from having the 24 hour holter monitor done? If so or if not, could you tell me your experiences? I have a cardiologist appointment on Nov.15th and maybe your insights will help me ask some of the right questions. Thanks. Hope you all have a great day. My fingers are so freezing cold now I can hardly type. -Its a wintery cold day in New Jersey today. Beth

Hi -As I am sitting here typing this, I am trying to see around my cat Shtinky who is sitting in front of my computer screen. He is 10 years old and loves me, whether I am sick or well. He sits on my lap whenever he can while I am at the computer, I think he is trying to surf the net also. He is very shy and only hangs around me ,my husband even says we look alike - I figure as long as we don't smell alike(with a name like Shtinky, that wouldn't be a great thing )-My other cats names is Whiskers-She and Shtinky are great, they don't get along with each other, but both love me and I wouldn/t trade them for anything!!! Beth in NJ

Danelle - Sorry to hear about your denial, one word of advice. Call a lawyer first thing tomorrow and have them appeal your case immediately!!!!!!!! It won't cost you anything. Maybe you can tell us what state you are in so someone on the forum can suggest a good disability lawyer that is in your area to appeal your case. It is necessary to get a lawyer if you want a real fighting chance. Hope your luck turns around real soon I'd be angry too, but since you probably used all your energy crying today already, just think, things can only get better from here on out. I'll say a prayer for you.

Hi Ginnysgirl, Welcome!!!! I hope your daughter feels better soon. Although I am older than your daughter, I have had lots of GI problems due to my POTS and I find that when the cramping gets bad, I lay on my right side for a few minutes, curled up a little bit and that seems to help. Also, has she been tested by her doctor to see if her food is digesting completely-it isa gastric motilitytest where you eat a radioactive egg and they watch it going through your digestibve system for a few hours to see if your stomach is digesting the food properly. They did this for me, my stomach was only digesting 20% off food and I had botox injected into my pyloris during an endoscopy to loosen my stomach muscles which helped my cramping,tightness in my stomach and let me start eating again. Not sure if they would do this in a childs situation if necessary, but I thought you might want to know about it. Also, in terms of taking a shower, does she have a shower chair? It helps me alot. I cannot stand in the shower anymore as I get too dizzy and my Dr. insists on this,since my BP lowers in the shower from the heat from the water and in case I pass out, I am already sitting down so I can't hurt myself. I hope your daughter starts feeling better, one day at a time and that her brain fog also starts to lift soon. Signed, a friend in NJ

P.S. Sorry - I forgot to add that I too still have all the other POTS symptoms and the Lexapro doesn't seem to help with it- major headaches each day,shortness of breath,memory problems,chest pains etc, but the Lexapro does seem to help a little bit with the dizziness, although it doesn't leave me dizzy free, it makes it a little more bearable where I can seem to function a little better than before I was on it. Beth

Hi Michigan Jan - I am on 1/2 pill of 5 mg.of Lexapro once a day in the mornings to help with dizziness. I know what you are saying about the 2 hour nap episodes and then bam, you are wired. This happens to me all the time and then I am wired until about 1:30-2am every night until I can finally go to sleep and then I sleep like 10 hours, waking up more tired then when I laid down to go to sleep.I have been on the Lexapro for over a year now, so I don't think the effect is dangerous of this feeling wired, but I have an e/p cardiologist appt on 11/15 and I will ask him and I'll write back on this forum what he says. If I forget to write back, email me to see what he said. You can find my email address on the meet others program. I too am pretty happy most of the time(when I am not falling asleep from fatigue or wired up like right now), but I don't think that 2.5 mgs.of Lexapro a day can be having much of an effect on my personality, who knows though? Have a good night!!!!! Beth in NJ

Just wanted to wish you good luck with your test tomorrow- You made me laugh - I have problems falling asleep usually so I am usually puttering around on here late at night and saw your post. Anyway, hope the procedure goes well for you and I'll be thinking of you tomorrow. Good night Beth

Too Young-I just reread your reply and saw that you said they tried to blame your SOB on stress - Sorry for the question then- The brainfog sometimes makes me have to read some things a few times.Sorry Beth

Hi Too Young & Rita - So who do you think will win? Even though I'm a Yankee fan, after these past few nights, well, they deserve to lose, sorry-I guess I am not a very good fan - Anyway, did either of you doctors say your breathing was anxiety also? I hope one day that someone figures out the relationship between this POTS & Shortness of Breath issue so we do not all seem crazy and have an easier time just doing everyday stuff. Beth

Hi Danelle - Things will get better, if this POTS doesn't kill you, it will make you stronger and just think, there is not one case that I have ever heard of atleast of POTS killing anyone. I was diagnosed in 2002, spent 5 months in 3 different hospitals and in Kessler Rehab Center in NJ and then spent months in physical therapy and spent alot of time at home adjusting to my new life with POTS and what I could and couldn't do. It took me a long time to come to terms with being in my early-mid thirties, not having a career anymore and adjusting my whole life to be able to live, but you know what, what else was the choice? Things did get better eventually, sure I still have my problems with POTS, you can see my breathing difficulties forum post I put on last night, but you know what, we could have something alot worse than this. I have learned to concentrate on the positive in my life-I have a nice house,a loving husband,2 great cats,a great set of parents,wonderful & suppportive friends and I lived through 2002, the worst year of my life(was on IV feedings,had botox in my pyloris because of GI symptoms of POTS,and other gross things,yadayadayada). Keep your chin up - Maybe you should try to see Dr. Low at Mayo Clinic in Mn. or Dr. Robertson at Vanderbilt if your quality of life has gotten so bad that no one else can help you-These 2 are the top specialists from what I understand on this POTS issue and maybe you can get your life back on track by trying to get to see one of them. I wish you better health and good luck - Take one day at a time. Beth

Blackwolf, When do you get any sleep and how do you function at all? You must be exhausted. I am going to try to go to sleep in a few minutes. I hope you get a little sleep tonight. Sweet dreams. Thanks for your reply - I appreciate your words of wisdom - you made me laugh also about firing some of your doctors. Laughter really is the best medicine I know - Thanks!! Beth

Hi Amy - Thanks for your answer, atleast I'm not alone - I am sorry to hear that your breathing is so bad - As you can see from my being up at this hour of the night, my sleeping pattern isn't so great either- I think its all those catnaps I seem to take without trying during the day. One minute I am awake, and poof, the next thing I know, I wake up on the couch an hour and a half later - AAh, life with POTS I hope your breathing does get better, I will try the lying flat when I get a breathing episode after walking up the stairs and see if it helps. Have a good night!! Beth

Hi Everyone - I just wanted to know if any of you have the same problem I do from Pots - This seems to have gotten worse over the past 2 months, even though I am on same meds as usual and not doing anything different. I have had POTS since March,2002 as well as MVP and Epstein BaRR Virus. I had an appointment with my family doctor this past Friday and about 1/2 hour before I left to go there I climbed the stairs in my house and of course, was having problems with shortness of breath when I arrived at his office 1/2 hour-45 minutes later yet. One of the meds I am on is beta blocker pindolol to keep my heart rate down and even on it, my heart rate was reading 92 in his office-usually the pindolol brings hr down to about 60-70 range for me. My oxygen level was fine, 99 percent and he did an ekg which of course, was normal. This led, to the part that I need to vent about that really irks me, he then asks me- Maybe I am anxious - Would he like me to prescribe a small dosage of zoloft(I think that was the med he said)? This led to a discussion of no, I am not anxious, I am just having trouble breathing when I am walking stairs or doing anything overly physical. I can't exercise, which I know means I am not very conditioned, but as soon as I start exercising, even sitting down, I am short of breath within 2 minutes if not less and dizzy. I have an appt with the e/p cardiologist on 11/15 to make sure my ticker is doing ok and my family doctor said he will put a holted monitor on me on oct 28th for 24 hrs to see if my heart is skipping lots of beats or doing weird rhythms that the EKG didn't pickup. I am a relaxed person, not anxious at all, but every time that my family doctor comes to the conclusion that if he doesn't see whats causing my problem "it must be anxiety" I feel like he thinks I am a nutcase, which I may be ,but not because of anything POTS related, I was always a wisea__ before I was sick. Anyway, I feel better, just needed to vent. Unless you have POTS, you can't understand this - I tell my husband what he said, but I figured you all could sympathize a little better. Anyway, have a good Monday night and thanks for letting me vent. P.S. GO YANKEES!!!!!!!!!!!!!!!!! Signed, NOT ANXIOUS IN NJ

Hi - I have not had mono before, but I did get the Epstein Barr virus unfortunately about 1yr and 3 months after being diagnosed with POTS. I was tested for it before my POTS diagnosis and did not have it then, but in October of 2003, was feeling real tired, crappy and some other symptoms and was tested and at that time I tested positive for the Epstein Barr Virus. Doctor says because my immune system is so low its not surprising I picked up the EB virus somewhere.

Oops, I made a typing error in my 1st line - I was diagnosed in 2002, sorry to confuse anyone. BETH!!!!!

Hi - I can really relate to your problem. Since I have benn diagnosed with POTS in 200, my weight has been such an annoying issue on top of everything else that I wish it would just miraculously go back one day to the way it was before I got sick. Before I was sick, I was always 110-115 lbs. At my sickest point in the hospitals in 2002 before being diagnosed, I was down to 93 lbs and on IV feeding. Once I was diagnosed and on meds, my weight came back on. The thing is, I do not eat more than I used to before I was sick, but somehow from the meds and less activity, my weight went to almost 150. I am 5'6" so I hid it well, but it made me feel fat and bloated and terrible. My doctor said that I was not retaining water even though I thought I was, but he put me on a very low dosage of topamax and that has helped to bring my weight down by about 10 lbs in 4 months. In high dosages, it is an anti seizure med. I am on a very low dose though, like all my other meds since I have sensitivitiies to every drug you can imagine. The Topamax seems to help, I really do not know why, but since I have lost a little weight, I am not asking questions.My dosage is 25mg. I hope you get your weight issue under control again. It stinks having this as part of the POTS problem, if someone else that has seen Dr. Robertson at Vanderbilt had this problem, e-mail me(you can find my email address on the meet others program). I highly respect Dr. Robertson and feel that since he is doing so much research with POTS and dysautonomia, maybe he would know the answer to why this weight issue happens, if this is not a salt retention issue. Beth in NJ.

I was very sad today to hear about the death of Christopher Reeve - He truly was a super man, not just "Superman". The strength and courage he had in spite of his disability was remarkable. He is free from the confines of his body now and I hope he is flying around Heaven, walking and is free from any pain. My prayers go out to his family at this time of their tragic loss. Beth

Hi Lisa, Welcome to the website. I am pretty new to joining in also. I hope you start to feel better soon again. I have mvp, POTS and EB- Atleast you have a doctor like Dr. Grubb, I wish I had as good as a doctor here in NJ that knows as much as Dr.Grubb does about POTS. I have heard alot about him on this discussion board.I am on lots of meds, have some good days and some bad, but am happy to be here after spending lots of time in the hospital back in 2002. Anyway, hope you have a good night and I'm glad you took the plunge to finally join in to the forum!!!!!!!!!!! Beth

Kathleen, You are in my thoughts and prayers. I wish you a speedy recovery and great doctors and nurses to help you through your ordeal in the hospital. Good Luck, Beth in NJ