Finally Made It To The Top Of The List To See Dr. Grubb!!!

[Chrissy]

Hi Group! It has been quite awhile since I have been here! Things have really gotten much worse for me in the POTS / Dysautonomia world! My sensory overload issues have gotten so bad that I have become practically home bound! It is very crippling! Especially a sudden unexpected noise of any kind will immediately set me off into what looks like a severe autistic episode! It takes quite awhile for it to pass and then days to get back to what would be considered normal for me. I have also lost us of my legs on more than one occasion. Out of nowhere, I suddenly cannot stand up. It is very scary! I have been on the waiting list to go to Toledo, Ohio to see Dr. Blair Grubb for 14 months. I have finally made it to the top of the list! Hopefully I can finally get some much needed answers to some of my questions and concerns. At least I will be talking to someone who knows what I am dealing with. Can anyone who has seen Dr. Grubb reply and let me know what to expect on my first visit? We will be traveling from Lafayette, LA. I know I have heard of people flying from other parts of the world to see him. Certainly we do not travel that far and especially with a 9 year history of symptoms to have a one day appointment. What types of tests does he order? Any information regarding your visits and how often do you have follow ups will be greatly appreciated! Also does he order labs and tests to be done from home? Also anyone dealing with the sensory overload issues would be great to hear your experiences and coping mechanisms! I am so happy to know that I can come here and get answers from people who understand what we deal with. Thank you very much for your time! Chrissy

[IceLizard]

Hi Chrissy,

Nice to hear from you! I'm from Louisiana, too. I traveled to see Dr. Grubb from Covington, LA. I now live in Monroe. I had seen several other doctors about dysautonomia, so I already had test results like the tilt table test to bring with me. He did not order new tests for me, but to my surprise starting examining my joints. He diagnosed me with Joint Hypermobility Syndrome and spent a long time explaining the condition to me. He told me that it was the cause of my POTS. He is a very kind and caring doctor, and even sent me a book and several journal articles about POTS through the mail without my even asking. Since you live so far away he will want to work with your local doctors to continue your care. Do you have a doctor near you who can help you with this?

I am having sensory overload issues as well. For me if I am startled, it can trigger shaking and if its really bad what looks like a seizure. I was tested for seizures and it came back negative for epilepsy. I also have autistic-like issues, and as I child was diagnosed with Asperger syndrome. I am not homebound, but I have trouble going out in noisy environments like the grocery store without feeling like I am near an attack. I take a Benzo to help me with this, Librium, and it helps me a lot, but I don't like to use it too much because it can be addictive, so I take a low dose daily then a little more if I am triggered. I see you are on Xanax, is that not helping you enough?

I also have weakness in the legs at times and find that I cannot use them when my POTS is acting up.

I saw Dr. Grubb a long time ago, about 9 years, at a time when my life was very unstable and I ended up moving and changing doctors. So, I did not really get to continue the care like I should have with a local doctor. But, it was really worth it the 2 times I did get to see him.

Feel free to message me if you'd like to talk more!

[corina]

Good luck on your appointment Chrissy! I wish I could see Dr Grubb too!

[gjensen]

I was thinking the same thing. We need one of him in every region.

Congrats on getting there.