Notgivinup Posted October 14, 2009 Report Share Posted October 14, 2009 I am 45yrs. old and got dx with POTS a little over 2 years ago now. I have 5 year old little boy who I love dearly. I feel so sad that his mommy is in bed a lot. I do the best I can, but I am not the mom I wanted to be. Anyway, I have an appt. (finally) with Beverly from Dr. Grubbs office. I was wondering if she was as good as the doctor, and if she could/would prescribe meds.From thousands of hours of my own research, I think I have the hyperandgenic (sp?) form of POTS. My standing norephinephrine was 987. I know it is suppose to be 1000, but I think I'm close enough. What do you guys think? I also have tight muscles, & lots of knots in the coat hanger area.I'm so afraid to be excited to see Bev. KWIM? Quote Link to comment Share on other sites More sharing options...
Brye Posted October 14, 2009 Report Share Posted October 14, 2009 Welcome! There are many of us trying to keep up with little ones while dealing with our symptoms. Hope and determination is what gets me through. It will get better and I won't accept an alternative option. My kids are very understanding but it's been really hard on my 7 year old who just wants a good game of basketball from his mom. My kids love playing board games though and seem to just like to spend time with me ... even if it's laying around watching movies. I Hope you can find some help with your symptoms. I haven't made it through the waiting list for Dr. Grubb so I don't have any input on that one but I hope you can get some good advice!! I have found an EP doctor who has been very helpful and I'm very optomistic my symptoms will be controlled at some point. I've also had POTS for almost 2 years. I've had some horrible doctor experiences but I'm not giving up! Good luck and let us know how it goes!!Brye Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted October 14, 2009 Report Share Posted October 14, 2009 Hi.Just wanted to say welcome. I am a mom too. My kids are 15 and 11. I am 46. I got POTS 1 year ago after a virus. I can'timagine how hard it would be with a 5 year old. Well...yes I can...I was very ill when my kids were young...so yes..I remember. Anyway..no words of wisdom on Dr. Grubb...or any medical magical cure. I find the more exercise I try to do the more I can do...sometimes just reclining seems to make it even worse. but it is a balance. sometimes if I try to do too much I pay so dearly afterwards...I feel like I will be in the ER. I think we find our way.My tricks have been pacing myself, drinking lots and lots, salt, and beta blockers...and prayer..Erika Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted October 14, 2009 Report Share Posted October 14, 2009 Hello, and Welcome to the forum! I am sorry that you are suffering, but I am glad that you have an appointment with a well-respected POTS doctor. I hope that you will find a lot of support and guidance here on the forum.~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
gomindy21 Posted October 14, 2009 Report Share Posted October 14, 2009 Hi there When is your appointment. I have an appointment with Bev next thursday. I'm feeling the same way as you(excited and afraid). I will let you know how my appointment goes. Quote Link to comment Share on other sites More sharing options...
chipper Posted October 14, 2009 Report Share Posted October 14, 2009 I saw Dr. Grubb this summer and he speaks highly of Bev. He was going to introduce her, but she was taking a test for her PHD. They will help you !! It takes sooo much patients and work, but getting better is in your furture!! They really do care. This illness has been with me for many years. My daughter was three, when laying in bed was my only relief. She spent most of her time playing or laying in my room. Dinet is the place to be. Welcome and feel free to ask me anything.Blessings, Mary Quote Link to comment Share on other sites More sharing options...
janiedelite Posted October 14, 2009 Report Share Posted October 14, 2009 Hi Mary,I'm glad for you that you get to see a specialist. My standing norepi levels were 1089 (pretty close to yours) and supine was 250. Mayo said I have a "mild hyperadrenergic" response to my pooling. I've gotten better symptom control by managing my pooling with compression, salt, fluids, mild exercise, stress avoidance, rest. I haven't responded well to any meds so far (I'll try mestinon later this month, fingers crossed ). I still can't work, but I actually have a life now (can sit for a couple hours, converse with folks briefly, go for walks most days, etc.)I just hope to give you a little encouragement. Prior to implementing the above treatments, I spent most of my days in bed. Now I have flare ups, but in between my periods of function make this illness mostly tolerable. Let us know what Dr. G's decides to do!Take care, Janie Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted October 14, 2009 Author Report Share Posted October 14, 2009 Hi there When is your appointment. I have an appointment with Bev next thursday. I'm feeling the same way as you(excited and afraid). I will let you know how my appointment goes.Hi, my appt. is Tues. the 20th. It's a three hour drive so we will leave Mon. night, and spend the night somewhere. Quote Link to comment Share on other sites More sharing options...
Stace915 Posted October 15, 2009 Report Share Posted October 15, 2009 Hi, I have seen both Dr.Grubb and Beverly. If possible I would recommend that you wait until an appointment with Dr.Grubb becomes available instead of seeing Beverly. Don't get me wrong, she is very knowledgeable but after seeing them both, she doesn't hold a candle to Dr.Grubb. I only go to her now if I need prescription refills, beyond that I don't think it is worth it to see her. I wish that Dr.Grubb would train another full doctor for when he retires... he is so knowledgeable and because he has dealt with serious illness in his own life he is unbelievably compassionate and understanding and I didn't get that from Bev. It was more that she was just following up and like she was doing my "maintenance" until I could see him again. Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted October 15, 2009 Author Report Share Posted October 15, 2009 Stace915, thanks for the thoughts on Bev. That is what I was afraid of. But when I was feeling real bad a month or soago, I was just glad to get near Dr. Grubb. KWIM? But I'm glad you told me this. This way I won't get my hopes up TOO much. I wonder how long after I see her, I'll get to see him. Hmmm. Quote Link to comment Share on other sites More sharing options...
gomindy21 Posted October 16, 2009 Report Share Posted October 16, 2009 Oh, bummer! I was afraid that my be the case Thanks for letting us know! I really suspect I have other issues other than POTS and I was hoping to get the appropriate tests to make sure what kind of POTS I have so I can get started on the right medicine. I'm hesitant to try any medicine without having a complete diagnosis. So far I've only had a tilt table test and SED and ANA blood test. I really want to rule out some other things, but it sounds like that might not be the case for this. ARGH!!!! Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted October 16, 2009 Author Report Share Posted October 16, 2009 Oh, bummer! I was afraid that my be the case Thanks for letting us know! I really suspect I have other issues other than POTS and I was hoping to get the appropriate tests to make sure what kind of POTS I have so I can get started on the right medicine. I'm hesitant to try any medicine without having a complete diagnosis. So far I've only had a tilt table test and SED and ANA blood test. I really want to rule out some other things, but it sounds like that might not be the case for this. ARGH!!!!If you don't mind me asking, what are your main symptoms? Quote Link to comment Share on other sites More sharing options...
chipper Posted October 16, 2009 Report Share Posted October 16, 2009 He also told me that he had tried to get a doctor to help him, but no one was interested. There will be a doctor at the Kirklin Clinic UAB as soon as they find a really good team to take over the autonomic lab that Dr. Coghlan developed. I get letters on occasion from UAB with an update on their progress. Quote Link to comment Share on other sites More sharing options...
gomindy21 Posted October 17, 2009 Report Share Posted October 17, 2009 Oh, bummer! I was afraid that my be the case Thanks for letting us know! I really suspect I have other issues other than POTS and I was hoping to get the appropriate tests to make sure what kind of POTS I have so I can get started on the right medicine. I'm hesitant to try any medicine without having a complete diagnosis. So far I've only had a tilt table test and SED and ANA blood test. I really want to rule out some other things, but it sounds like that might not be the case for this. ARGH!!!!If you don't mind me asking, what are your main symptoms?My symptoms are never quite the same from day to day, which I guess most people go through that. My biggest problems are usually between 12 and 2am. I wake up with the surges that I've read other people have. Extreme pain in the chest that lasts up to a day and a half(my blood pressure and heart rate are normal part of the time during this pain.) Somedays my blood pressure is fine with a heart rate the gets around 113 after about 20 minutes.I haven't caught my rate at its worst, but I think the highest I've recorded was 135 and I'm sure it's been much higher. So, a lot of these I know are pots symptoms. My blood pressure monitor picks up irregular heartbeats quite often and it feels like my heart does a lot of afib stuff. When I lay down, sometimes my blood pressure gets extremely low. I have swollen lymph glands, bleeding gums, weird rashes that keep popping up. Also weird nerve pains, like through my arm, up through the side of my neck to the top of my head down through my eye or cheek which sometimes causes a little twitching. When I've had severe episodes, I have had the tremors as well. I suspect that I have celiac disease because I had blood work done through an alternative doc that showed sensitivities to wheat, gluten, dairy, etc. I sometimes get tingling through my tongue. I have some hypermobility in my finger joints. After taking a shower, the blood vessels will burst in my eye and the list could go on and on. I guess my biggest concern is if I need to get my norephinephrine levels checked, my joint hypermobility, some kind of neuro thing , and the rash, bleeding gums, etc. Sorry, I feel like I'm rambling on. I really wish the best for your appointment, hopefully this will be a step in the direction of seeing Dr. Grubb! Quote Link to comment Share on other sites More sharing options...
Notgivinup Posted October 18, 2009 Author Report Share Posted October 18, 2009 gomindy21, I'm so sorry, you have so many symptoms. I thought I had a lot. I mostly ALWAYS felt like I had the flu 24/7. Plus terrible cognitive problems. Like some days I couldn't even remember my phone number. And the relentless dizziness and pure exaustion. I would absolutely dread getting out of bed in the morn. and a lot of days I wouldn't. Your symptoms seem a lot different to me than most. But of course I haven't read everyones stories. I really hope Dr. Grubbs office can help you sort it out. I'll be keeping you in my thoughts. Quote Link to comment Share on other sites More sharing options...
gomindy21 Posted October 18, 2009 Report Share Posted October 18, 2009 gomindy21, I'm so sorry, you have so many symptoms. I thought I had a lot. I mostly ALWAYS felt like I had the flu 24/7. Plus terrible cognitive problems. Like some days I couldn't even remember my phone number. And the relentless dizziness and pure exaustion. I would absolutely dread getting out of bed in the morn. and a lot of days I wouldn't. Your symptoms seem a lot different to me than most. But of course I haven't read everyones stories. I really hope Dr. Grubbs office can help you sort it out. I'll be keeping you in my thoughts.Thanks! I will pray that your appointment goes well and that you can also get into see Dr. grubb soon! Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 18, 2009 Report Share Posted October 18, 2009 I know exactly what you mean about having the flu 24/7! I feel that way a lot...good luck,jana Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted October 18, 2009 Report Share Posted October 18, 2009 Welcome to the forum notgivingup,I don't know your docs but I just wanted to give you a warm hello and let you know that I also know that feeling like you have the flu 24/7 feeling. May you get your appointment and find some good help. Here you will find great friends ans support 24/7 also. Today I'm going to try to venture out of bed of a few mins and test the grounds. It is snowing like crazy here so I turned on my christmas tree that I never took down last year. LOL it's up forever now as it's an angel tree.... I'll say a special prayer for you right now that all goes well. I have to say them right on the spot so I won't forget. ( brain fog )blessings~bellamia~ Quote Link to comment Share on other sites More sharing options...
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