danelle

Janine, Good grief!! I hope you are feeling better today. Maybe you just needed those extra fluids. Haven't heard from you in a while, added you to my yahoo IM. Let us know how you are doing, next time maybe you should try a WC or scooter, even if you don't want to (like me ) Take care, Danelle

Dayna, I think it is WONDERFUL that you are able to exercise!!! But I am like the rest, start slowly and build yourself up. If you have any symptoms, STOP. Unfortunately I am like Lisa, I can't do ANY form of exercise whatsoever without severe symptoms. I would encourage you to exercise IF your doctor ok's it, but just take it in steps, and do some for me too would ya

Oh Jess, he is so beautiful and so is Ethan!! The pix reminds me of when my boys where that age. Hope all is doing well and hope to hear from you soon but we know you will be busy Danelle

I have this problem regardless of what my HR is. I can NOT lay flat at night, I need 2-4 pillows but have no swelling or cough. Like I said this has been going on for years but is getting to be a real nuissance. -My dad had CHF too-part of the reason he passed. No, I can not exercise AT ALL. I have tried a cardiac rehab program and while all the people in their 70-90's would do fine, I would do horrible. I couldn't keep it up.. Even when I try doing sit ups, crunches, leg lifts-even just 10-I end up with arrythmias that drive me crazy and tachy plus the difficulty breathing. I feel like I am a hopeless case. I guess it could be my BB but I am on only a beta selective blocker which is less likely to affect your breathing as others (I am on atenolol). It doesn't sound like many of you have the breathing problems that I have (other than Calypso) so who knows what the heck it is, I am just falling apart I guess.

Hi, Just wondering if everyone(or most) have BAD problems with breathing-shortness of breath, difficulty breathing, etc with your POTS. The main time I have problems is when I do the least little bit of activity, and I mean walking across the room can really set it off. Any type of activity makes it so hard for me to breath. I am beginning to wonder if I have CHF(congestive heart failure)-I don't think I do but I just don't know. I have never smoked so that isn't it either. It isn't like asthma but someting is definately going on. IT isn't new but just getting a little worse. I have mentioned it to the Dr but we haven't really focused on it at this point. Is this the norm for POTS?

Jan, I continue to think of you and Jeff often. I know it is hard to accept help from others but right now it would be good if you could just let them help you. It may be hard but it really makes people feel better if they can help you in times of need. It gives them sense of need. Right now you need to focus on you and Jeff and nothing else. Please know we are here for you and keep us updated. I will continue to keep you both in my prayers (as you asked). Take things one day at a time-sometimes that means one hour at a time. Many hugs and good thoughts sent to you, hang in there. Danelle

Emily, I could post the same thing. It is so hard to deal with all the feelings that you have at once. I want to let you know that there are so many of us here that know exactly how you feel. Please hang in there, even when I know it gets hard sometimes.(well lots) But just look around you and think of all the good things you have in your life.-But also know it's ok to grieve and be sad sometimes. We are only human. I know I get so mad sometimes when someone will say, "I am so sorry you are feeling so bad today, do you want to go to the mall? Maybe you just need to get out more." URGHHHHHHHHH!!!!!!!!!!!!!! I would love to go to the mall, but I CAN"T you dummy. They just don't get it, even though they try. As for your POTS family, we DO get it. Maybe we should take a trip to a cyber mall. I would really love some new clothes. I think I will buy a sexy new dress and wear it to a nice cyber restaurant with my husband. New makeup, everything. I do want to tell you too that you are a VERY important part of this site. You have lifted my spirits many times. You are a beautiful dancing light and don't you forget it! Your light shines so bright, I've gotta wear shades Hugs, danelle

Jan, I don't have words to express how I feel for you and Jeff. I can only imagine what you both must be going through. Just know that my thoughts and prayers are with you both and your whole family. Please try and take care of yourself as well. It won't do Jeff any good if your health declines as well. Please keep in touch with us often so we know how you both are. With much love, Danelle

Thanks for your replies Derrick is still "adjusting" to his medications. I guess I am just concerned because I know I was unable to tolerate those meds myself. I can only take a bb and clonazepam. But most of all, I think it is just the worrisome mom in me. I just don't want my son to be on so many meds at such a young age (or any age for that matter). Better yet, I don't want him to have POTS. Realistically, I know there is nothing I can do to "cure" him and that breaks my heart. I just don't want him to end up in the shape I am in. I wouldn't wish it on my worst enemy(not that I have any) but especially not my child, no-I mean not ANYBODY. This illness does so much to a person, from head to toe. I just wonder sometimes how I make it through the long days, not being able to do a darn thing but sit on the couch or lay down. It gets so lonely and depressing. I just can't fathom Derrick living this life. Sorry to rattle on, just needed to vent a little. I am feeling down today anyway because I miss my father dearly. He passed 2 1/2 yrs ago but it seems like yesterday-then again it seems like eternity. I know he is with my mom and no longer suffering-that brings me some comfort. I am just being selfish. Good grief, where did that come from??? Sorry again, Danelle

Derrick found a song on the internet the other day, started laughing and called me into his room. It was called "I don't like drugs but the drugs like me", right away I knew what he was thinking. We looked at each other and said "POTS" at the same time!!

Derrick, my 17 yr old son, has POTS as well as me (most of you know that). Anyway, I REALLY like his Dr and respect him and he also talks to Dr Grubb about us and our treatment. I am just a little reluctant about his meds-maybe it's because I have had such bad luck with them(not that he will). This is his regimen: Toprol XL 37.5 mg once a day-it was just increased from 25 mg about a week ago. Clonazepam 1mg at bedtime Celexa 20 mg once a day-which he was switched from Zoloft 50 mg(I think he did better on the Zoloft) Wellbutrin 50 mg once a day-we just added that a week ago Florinef 0.1mg once a day- we also just added that a week ago as well I know that it takes meds a while to work ( he didn't start any of them until April 9th-other than the Zoloft that he had been on for a few years) but he doesn't seem to be getting any better at all, if anything he seems to be getting worse. The Dr told me that this is going to take a long time to get him stabilized (which I know-heck, I can't get stabel cause I can't take hardly anything!) but I just worry about him taking so many meds. Anyone else on this much and doing better? I know a lot of it is just the worrysome mother in me but I just don't know if I am doing the right thing or not. Thanks for your help Danelle

Katherine, This is a wonderful idea!! I am having a hard time getting to the pix. When I go to the site, it states it is no longer available. Can you tell me what I am doing wrong? Danelel

Jan, Our thoughts and prayers are with you. We are sending you and your husband positive thoughts and lots of hugs. Danelle and Derrick

blackwolf, I have the same problem. My cardio is sending me for a neuro workup to make sure that nothing else is going on other than the POTS. He is suspicious of something I think. It'slike I forget how to swallow when I get something in my mouth -then when I remember I get choked very easily Does anyone know if this is just part of POTS?

Just wanted to post and let you know that I am thinking of you this afternoon. Hang in there. Hugs, Danelle

Ernie, I was thinking today was Wed. but I will be thinking of you today too!

Ernie, Just read your post. My heart goes out to you and your family. Talking with your sister about what to do was a great idea. There really is no "wrong" decision. Always remember that. You know your body better than anyone. I will be praying for you and your family at 3 today(I saw where you said it was ok for prayers). I am so sorry you are going through this. Please keep in touch with us and let us know how you are doing. May peace be with you and your family in your time of sorrow. Try and remember the good times and have someone with you today if possible, if not, we are with you. Many many hugs, Danelle

Thanks Janine!! Isn't he awsome?! Glad to hear you made it. Did you ever make it to Duke? If so, what did they do and what did they determine? My son and I both have had a rough week and a half. Will catch up with you in the next day or so (depends on my son's appts). Let me know how you are doing. I never qualified for the STD or the LTD at the hospital because I went PRN before I realized I would have to quit I was determined to keep going but the POTS got the best of me in the end. Sorry I can't help you with those answers. WE are beyond struggling for money right now with NO income from me whatsoever. Don't know if we will make it until my hearing. Sorry everything is so jumbled, my brain fog is overtaking me tonight WIll catch up with you. Danelle

Brain

On my son's MRI it showed focus of gliosis. Does anyone know what this means. We are setting him up an appt with a neurologist tomorrow, hope to get him in ASAP. I am worried.

Catherine, How old are your children, are they boys or girls, and were they diagnosed at birth? When did you start having symptoms of POTS? Have you been diagnosed with PAF? Sorry for all the questions. I just have been going down hill steadily for about 2 yrs now and am concerned about PAF too-but my dr doesn't think I am there yet. Also my 17 yr old son was just dx with POTS as well, so far, my 19 yr old son hasn't been and doesn't seem to show any signs right now (thank goodness!) Derrick is having a hard time too, it makes me so sad. This past week as been particularly bad for the two of us. It's ironic but we seem to have bad days on teh same day. (Not always-but frequently) of course here lately all of mine are bad. Thanks, Danelle

Corina, That's a good idea. Yes, Del. stands for Delaware and NC stands for North Carolina. SOrry for the confusion!

Born in Wilmington, Del. but I've lived in NC (near Asheville for most of my life) -since I was 12. I like calling NC home!!! Can I represent NC in the beauty pageant?

Hi Janine, Just wondering how your trip went and what tests you had done. Were you able to find out anything? Let us know when you get the chance Danelle

All the replies have been amazing. I am sorry I am having a very POTSy spell right now but will catch up with you all tomorrow and respond (haven't been able to read responses-but wanted to "check in"). SOrry! Danelle