Faintinggoat Posted August 5, 2014 Report Share Posted August 5, 2014 I just got the call scheduling my appointment with Dr. Grubbs office for September. I'm nervous that they wont be able to help me and my fainting, but overall am quite excited that I finally got an appointment. I know there have been other posts about this before, but thought I'd start another so as not to take over someone elses post. Who all has seen Dr. Grubb and/or Bev? What was your experience like? What kinds of questions should I ask? Quote Link to comment Share on other sites More sharing options...
corina Posted August 5, 2014 Report Share Posted August 5, 2014 I haven't seen them Faintingcoat, though very much would have liked to! I'm in Europe and my doc recently emailed with dr Grubb about my situation and got an answer quite soon! Really hope your appointment will go well and that they have the answers you need! Fingers crossed! Quote Link to comment Share on other sites More sharing options...
yogini Posted August 6, 2014 Report Share Posted August 6, 2014 That's awesome. I would be optimistic that they would be able to help you. Quote Link to comment Share on other sites More sharing options...
kay1964 Posted August 9, 2014 Report Share Posted August 9, 2014 Hi, faintingcoat.I also got my phone call from sherry at Dr Grubbs office.I'm going in sept.I have been to vanderbilt in 2010, some help but not enough.A good friend of mine goes to Dr Grubb, once a year for her pots.she even made a u tubevidoe with dr grubb.Sherry from dr grubbs office reminded me his wife is very sick.but he is still very dedicated to his patient's and will spend 2 to 3 hours with them if needed.She told me to be patient because there is an appt ahead of mine.it will be a ten hour drive for me so I'm very anxious. My loving husband will do all the driving but unfortunately I'm not a good passenger. Hate being so sick. My records are already there I sent all but my last 6 months records, and pictures of me with my dsyautonomia, as I call it or my pots as vanderbilt calls it.I believe we have elhers danlos in our family too.I'm praying dr grubb will give more answers. This last six months I have had three hosp stays.was suppose to get a port but decided to wait and see what dr grubb says. So my prayers will be for you too.I heard bev is really good to, she works with dr grubb.because I will be there on a friday she will not be there, so I will not see her this vist.keep me posted on your vist.I'm sure he will add answer's to your condition too. Keep postive,and agin my prayers will be you get the answers you seek. Quote Link to comment Share on other sites More sharing options...
kay1964 Posted August 9, 2014 Report Share Posted August 9, 2014 Sorry I spelled faintinggoat wrong. Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted August 9, 2014 Author Report Share Posted August 9, 2014 Thanks for all the responses. Tammy, so happy to hear that you got on the September schedule as well! A lot of my story overlaps with yours. Similarly to you, I have quite the drive to get there. I live in the middle of Pennsylvania and it is about a 6 hour drive. I also have someone else driving me, mostly because fainting and driving is a big no no, and I make a terrible passenger as well lol especially when I'm anxious. My first specialists who knew anything about POTS was at the Cleveland Clinic, and was in fact diagnosed there. I really liked them, but they were going the conservative approach and were very reluctant to do anything more, even after the conservative approaches were clearly not helping. So, I hope that he has answers for both of us! I have been sick for at least 2 years (fainting for that long at least). Have been taking Propranolol, which has decreased the fainting, but alas its still 4-5 times a week. Just restarted florinef because my blood volume/pooling tests showed that I becoming severely hypovolemic and anemic. I was on it once before, but got so sick when we increased the dose. So we are trying it on the lowest dose only. Anyway, best wishes to you! When do you go? I will be there the 22nd. Quote Link to comment Share on other sites More sharing options...
kay1964 Posted August 9, 2014 Report Share Posted August 9, 2014 Hi, faintinggoat my appointment is on the 12 of September.I to tried florinef but could not tolerate the more headaches that it causes for me.I have had pots all my life i now know.from being diagnosis with mitral valve, cfs,to panic attacks, to hypoglycemia, to low levels of vitamin d, tmj, servre dry eyes, list goes on and on.I went to Vanderbilt for my confirmed diagnosis, in 2007. That was helpful for that, but not for long term treatment and what i overlap. I have known my dsyautonomia runs in our family no one has stepped up to have it diagnosed. I really believe we will be looking at elher, as possible primary.one issue that stands out for my family also is visions issues. Such as we have high myothia, we have nystagmus, and retinitis pigmentosa, which runs in connective tissues disorders.so aginI'm really hopeful, in that dr grubb can help sort out our illness that overlap each other. Dr thompson in fl was another doctor i have seen he was trying to help sort but he is very ill himself. So for thetrip I will be taking my propranolol, wearing my compression stocking. Taking zyrtec if I need it. Bringing lots of braces. I wear neck one, back one, and wear compression arm sleeves. As well as hand ones. Also my faithful mouthpiece for tmj.and last lots of water, and salt. my gi doctor here is glad and so is my cardiologist, because they are exhausted with me:) we are such complicated patients, and at times I'm sure in thier eyes frustrating one's. There's no quick fix.because of my passing out epsodes my primary care doctor wants me to get a transport chair. For the trip.It's a huge barrier for me.to accept I needone:(agin hopefully dr grubb will help me get my mind to a place of peace and knowledge to better take care of myself. For i have always been the caretaker, now I can't even hardly care for me.best thoughts and wishes for you too! Agin keep me posted on how you do.pack all Ness items you will need to be comfortable for your trip:) oh for brain fog issue write down all symptoms, and all questions. Bring all records even ones you think wouldn't matter it could help. Also pictures if you have them of your condition like blood pooling, flushing, if hyperjoint pictures, what ever your symptoms are.also I will bring a recorder which I do to all important appts. My poor husband can't remember and I can't for sure.that way you can review it later.:)keep smiling Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 9, 2014 Report Share Posted August 9, 2014 Faintinggoat, you mentioned you were anemic. Did you correct that? That could definitely contribute to your increased fainting if it is on top of having POTS. Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted August 9, 2014 Author Report Share Posted August 9, 2014 The way the explained it to me is that the anemia is associated with the blood pooling and resultant hypovolemia. So it kinda becomes a perfect storm of things to make me faint. My heart rate increases, my blood circulates too quickly to adequately oxygenate myself (hyperkenetic circulation), my blood pools (and I become hypovolemic) making the already deficient amount of oxygenation, even worse, Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted August 10, 2014 Report Share Posted August 10, 2014 Faintinggoat,I havent seen Dr. Grubb or his PA/NP Bev but I wanted to wish you the best of luck. My best advice to you would be to write down all of your questions and concerns and discuss them with them until you are satisfied with the answers. Take advantage of the appointment with one of the top dysautonomia physicians and staff. Also, I've heard that he's really nice.Good luck and let us know how it goes!! Sounds like help it is on it's way! Quote Link to comment Share on other sites More sharing options...
Mike Posted August 30, 2014 Report Share Posted August 30, 2014 I haven't seen Grubb but I've seen Beverly many times. She is very nice and spends plenty of time with you. The best part is she also listens, many doctors I have seen like to tell me everything and get on their way. Beverly will let you talk and tell her everything you need to say or ask any questions you have. I would recommend writing down all your questions before the appt. because it's very easy to forget a few, trust me I know. Good Luck Quote Link to comment Share on other sites More sharing options...
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