lalalisa Posted June 7, 2006 Report Share Posted June 7, 2006 Hello!I'm back from the journey to Toledo. It has taken me about a week to get to the point where I can post on the forum as I've been extremely exhausted from the trip. My first visit with Dr. Grubb was great. I first spent about 30 minutes with his P.A. in training (her name isn't coming to me at the moment) and she was great! Extremely informative and also motivating and kind. Dr. Grubb spent about an hour with me. He went through a powerpoint presentation and explained autonomic dysfunction, POTS, and generally what is going on in my body (nervous system wise). It was so great just having a dr. see me who knows what I'm going through and acknowleges my condition. I wish I would've had more time to ask him questions but I think he really focuses on the education part which is great too. (he is very kind!!!)His ideas for me spefically involve just a few minor changes that we hope will help. He wants to add Wellbutrin XL in addition to Paxil CR which I'm already on. He thinks that it may help me feel better in general and that it may help my nervous system to function better. He also really stressed that I need to work towards a regular exercise routine. The reason being that when I stand upright and my heart/blood vessels don't work correctly to get the blood back up to my brain that the leg muscles need to then be strong enough to intervene. Right now I walk a bit but it's always a leisurely stroll and even that wheres me out completely!! He stressed that the exact thing that my body wants to do (sit and rest) is the opposite of what I should be doing. He mentioned swimming as a great option for POTS patients because the water actually puts pressure on your body from the outside thus it better regulates your blood pressure. In addition, if I can work up to actually swimming laps my body would be flat and not upright which would help me feel even more "normal". His PA told me that when I get in and out of the water I should do this slowly and allow my body to adjust......especially getting out!! Because I could pass out easily when leaving the pool!! He mentioned that there is still a fine balance here with exercise....he said that his patients tend to either over-do-it and then they crash completely or his patients do very little and just try to survive and get decondtioned.....both negative results. He wants me to find a balance but to make it my goal to actually work up to a cardio exercise routine.He also mentioned that he thought he could "guide me through pregnancy"....but only if I can build my strength up again and begin to feel stronger. (I'm extremely weak right now) He also mentioned that I need to consider if I would be able to take care of my child once it was born.....and at this point I know I would'nt be able to. But there is hope! And I will persevere! =)All this to say everything went smoothly....from the travel to the hotel...to the YUMMY SALT BAGELS my husband found my at Tim Horton's just across from the hospital!!! Next time you go you've got to get one of these!!!!!!!!! I've never in my life eaten so much salt in one sitting!!!!!!!!! =) THey're so salty I almost gagged!! Hahaha (and that's salty from a POTS patient!!)Oh, About the waiting room. It's confirmed you really do have to wait a REALLY long time in the waiting room!! (It was 3 hours for me and then 1 hour in the exam room before I saw Dr. Grubb)I hope I haven't left anything out. Please feel free to ask any questions.Take care,Lisa Quote Link to comment Share on other sites More sharing options...
Suzanne Posted June 7, 2006 Report Share Posted June 7, 2006 Hey Lisa, thank you so much for your informative post. I live in Sydney, Australia so will not ever be able to see Dr Grubb. My specialist is good, but does not spend much time explaining it all. I was impressed with a power point presentation!! I really found your info regarding exercise invaluable as no-one can seem to give me consistent advice about exercise. I am currently walking, but find it a bit scary when I get dizzy about halfway from home! I am also doing very light weights and Pilates.As a mum, i have found that you get strength from somewhere deep within to care for your child, so be positive. I did not rest enough when I had my kids, so would encourage you to keep resting, exercising and ask for help and you will enjoy being a mum.Thanks again for the info. Quote Link to comment Share on other sites More sharing options...
mom4cem Posted June 7, 2006 Report Share Posted June 7, 2006 Glad to read about your positive visit. There should be more Dr's like Dr. G. One in each state would be nice so we all could have one. From all that I have read about Dr. G, he has the combo that one needs. Knowledgable, caring, supportive, great listening skills, etc. Seems just because a Dr. may know or think they know about dysautonomia, does not mean they have personal skills to deal with patients. I know I need a dr. who is personable and is willing to take time. Those seem to be hard to come by.I hope the additonal meds help you. Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted June 7, 2006 Report Share Posted June 7, 2006 I am pleased that you are so happy with the results of your visit.I hope the new meds make all the difference for you and that you will soon see improvements!keep us postedbest regards, tearose Quote Link to comment Share on other sites More sharing options...
maggee Posted June 7, 2006 Report Share Posted June 7, 2006 wow, Lisa...so happy for you!!!!!....and glad the trip is over for you, and you can rest up now from it:)i, also, am going to see Dr. Grubb, when i can get in...and would like to know if you had to stay more than one day for any tests???i live far [for me,anyways--its far....lol ]....and have been wondering how long i would have to be away from home, when i go---as got a sick husband here..and cat that needs insulin shots 2x a day....so arrangements--some kind--would have to be made for their care...as well as getting my butt there.....would greatly appreciate any info/feedback,hun....and my prayers are with you that the new drugs, and exercise are a blessing to your health and take you onward toward a better life---and hopefully that dream of motherhood---->>>to be fulfilled!thanks in advance.....best regards, Maggee Quote Link to comment Share on other sites More sharing options...
nadine Posted June 7, 2006 Report Share Posted June 7, 2006 Wow- congrats on just making the trip and getting through the wait time. I can't imagine doing either one right now. I find it very helpful when poeple have posted suggested treatments, education and information they have received-especially from an informed physician. Keeping in mind, that not all treatments work for everyone and have to be designed for that individual, unfortunately due to med sensitivities. I also think you gave a very informative explaination of the exercise philosophy-I am sure you will be a wonderful mother someday- remain positivethanks Quote Link to comment Share on other sites More sharing options...
worththewords Posted June 7, 2006 Report Share Posted June 7, 2006 Thanks for sharing your experience. I see Dr. Grubb in November and I'm looking forward to it. I have a 10am appointment so hopefully I won't have to wait too long. The power point presentation sounds interesting. He should mass produce something like that so we could show it to people who still don't get our condition. Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted June 7, 2006 Report Share Posted June 7, 2006 Hey,I'm glad your appointment went good. I have been trying the whole exercise thing, and seem to keep overdoing it... Jacquie Quote Link to comment Share on other sites More sharing options...
Radha Posted June 8, 2006 Report Share Posted June 8, 2006 lisa i am so glad that dr. grubb was at some help to you, i hope the recommendations he made help you, lots of love!!radha Quote Link to comment Share on other sites More sharing options...
gelann Posted June 8, 2006 Report Share Posted June 8, 2006 Hello, I am so glad to hear that you had a positive experience with Dr. Grubb. May I ask what meds he put you on or does he try to stay away from medicine and only work with the workout. My daughter 23, has an appt with him in November. Did he do any tests? I am concerned about insurance and if they would cover the office visit or any tests that he orders. Thanks. Gelann Quote Link to comment Share on other sites More sharing options...
lalalisa Posted June 8, 2006 Author Report Share Posted June 8, 2006 Gelann,I hope your daughter is helped by Dr. Grubb's treatment. He didn't perform any tests but I took all of my copies of tests and bloodwork with me (as do many of us, I've already had tons of tests performed and have already tried some of the latest meds for POTS - such as mestinon - actually Mestinon isn't new it's just that using it for this purpose is fairly new). He prescribed Wellbutrin xl. Other than that, all of my other meds have been prescribed by various dr's here at home.Each patient is different - but I'm sure he'll have some ideas for your daughter!Take care,Lisa Quote Link to comment Share on other sites More sharing options...
katie_b Posted June 10, 2006 Report Share Posted June 10, 2006 I love Dr. Grubb, too, and am so lucky because I live only an hour and a half from him!Recently I started seeing his P.A., Beverly. She is wonderful and much easier to get into than Dr. Grubb! Quote Link to comment Share on other sites More sharing options...
Eli6596 Posted June 11, 2006 Report Share Posted June 11, 2006 Lisa,It was so interesting to hear what Dr. Grubb said about exercise. I am guilty of either overdoing it when I try to exercise or do no exercise at all. I have noticed swimming to be the most satisfying. I have always loved to swim. Since suffering from POTS, swimming has been the only time that I feel close to normal besides lying in bed on a good day. I say "close to normal" because I really have a hard time remembering what normal feels like!I hope your exercise will be successful. I want to try exercising again after reading your message! Dr. Low at Mayo recommends lifting weights to build up the muscles in the lower extremities. Did Dr. Grubb mention anything about weight lifting? He really sounds wonderful.Karyn Quote Link to comment Share on other sites More sharing options...
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