Dr. Grubb

[Victoria]

Dr. Grubb can't see me for a year. Staff said the nurse practitioner that works with him could possibly see me in 3 months. Do you think I'd make any headway with the NP, or would you go elsewhere? I don't know what to do. All I know is I can't hit another brick wall.

Would those of you who see Dr. Grubb let me know how you think I'd fare with his NP? I'm really desperate on this end, I need some type of resolution.

[Noreen]

I don't see Dr. Grubb but know from other boards that it is a very good thing to get in with his NP. She is reputed to be amazingly thorough and kind.

Once you are established if you have difficulties beyond her, she can always get Dr. Grubb's input.

[Victoria]

Thank you so much! This is such good news to hear.

[sandymbme]

I am a patient of Dr. Grubb's, and I too, was told it would be a 1 year wait to get in with him. So I opted to see Beverly Carabin, his NP. She is awesome! She will present much of the same info he does, participates in all of his studies, so she is completely up to date on everything he knows. She absolutely consults with him, especially if you have an area of serious concern. I was very flexible with scheduling, as I wasn't working at the time, and only live about 2 and a half hours from Toledo, so I was able to take a cancellation and I saw her within two weeks. I have a very rare heart problem that runs in my family (Brugada Syndrome), so she took my case to Dr. Grubb, and I ended up seeing him just a month later. I would definitely encourage you to take an appointment with Beverly, they really are some of the world's top experts on POTS, and genuinely nice people. That being said, be advised that their patient load is staggering, and getting a response from the nurses, or Dr. Grubb himself, can be very frustrating. Also, expect a LONG wait in the waiting room, regardless of who you see. The wait *****, but you will appreciate it when your turn comes and you get the undivided attention of Beverly or Dr. Grubb for literally as long as it takes. Dr. Grubb has spent at least an hour, sometimes two, with me every time I have seen him. I have never seen a doctor take so much time, and express so much compassion. The validation of what we are going through is worth the trip all by itself. Hope this helps!

Sandy

[Victoria]

Sandy, thank you so much for this informative post. Dr. Grubbs and Beverly sound like outstanding clinicians ad real human beings. I've waited this long for a diagnosis, so an hour or two in a waiting room won't kill me as long as I have somewhere to lie down. I can always resort to lying or the floor if need be. Thanks again for this info. I don't know what I'd do without all of you.

Just curious, is your Brugada Syndrome the cause of your POTS?

[sandymbme]

Thus far, it would appear that I don't have Brugada Syndrome, which Dr. Grubb told me he thinks is just a variant of Long QT syndrome. He implanted a loop recorder to track my heart rhythms and so far I have had a lot of tachycardia (which is NOT a surprise!), but no arrhythmia. If we don't see anything in the next year, he will remove my "Reveal" monitor and consider me negative for Brugada. I have family history, so I was high risk for it, and the symptoms of POTS can be very similar, which is why when I mentioned the family history to Beverly, she consulted with Dr. Grubb right away. Brugada is extremely dangerous, typically causing heart attack and death by one's 40's. (And I have a whole string of male relatives who did in fact die young, of this condition, so it was important to be able to rule it out.)

No idea what cause my POTS. I can't trace its onset to a virus or specific trigger. I had syncope episodes during aerobics workouts in Gym when I was in high school. Go figure, a bunch of rapid positional changes would make me drop in a matter of minutes! But my doc at the time just wrote me an excuse to get out of gym, because by the time I would get to the hospital (and had been laying down for several minutes) my vitals would be fine. I wasn't actually diagnosed until I started having horrific, untreatable migraines 15 years later. Nothing worked, not triptans, painkillers, or NSAIDs. I had a migraine that lasted for 9 months straight, and ended up at the Cleveland Clinic in absolute desperation. It was my neuro there who noticed my vitals were really strange, super high heart rate, super low blood pressure. Migraines are still one of my hardest symptoms to manage. At any rate, they did all my testing, and I failed the TTT with flying colors. I eventually started seeing Dr. Grubb for my POTS management, because the doctor at the Cleveland Clinic seemed to focus solely on the number of syncope episodes I was having, which at the time was not my chief complaint. But I still see Dr. Mark Stillman (the neuro) at the Cleveland Clinic for my migraines, he has a really good understanding of POTS, and how it complicates treating my migraines.

Sandy

[Victoria]

Long QT is a dangerous dangerous rhythm of the heart. It will be nice if he can rule out Brugada. Keep us posted, will you? No, no surprise about the tachycardia. Yuck. Not fun.

I have the same experiences at hospitals. They leave you lie on a gurney and symptoms can stabilize by the time they get around to you. Yeah, imagine how positional changes could affect you in gym class, lol! I'm sorry you have migraines. They're brutal. I used to have them for extended periods of time, but that's one of my symptoms that's gotten better with age. I don't know why, but I have to wonder about hormonal changes and POTS. Hope someone calls me out on this one if I'm wrong.

You must have passed out during your TTT? Your case of POTS is pretty cut and dried then. I didn't pass the TTT but I didn't flunk it either. I have distal postganglionic sudomotor and cardiovagal/cardiovascular adrenergic impairment. I don't completely understand what all this means other than it wasn't investigated any further.

I'm relieved to hear some of you have a good team of doctors. It does my heart good and gives me hope.

Take care.

[Neshema1]

I cannot say enough about Grubb/Karabin. Been a patient of their for over 4 years. His wife is very ill. Bev is as good as any POTS doc. I see them both. I love them. They work with my local docs too. I really am lucky to be their patient, as much as I hate having to be. When I met Dr. Grubb, I couldnt believe that man was for real. Bev is amazing. As my local EP says, who himself is very famous, "any time with Grubb/Karabin is worth it!" So true. Get appt and call to see if someone cancels. DO it. Ive been to Mayo and Vandy. Grubb is best. My friend goes to Suarez in Toledo (trained by Grubb, she said), and she likes him very much, FYI. Realize Grubb/Karabin are helping the dysautonomia world. SO, u must keep up with them once you are in. They make u feel like their only patient but so many others feel same. So, there is a reason we are called patients! But, once u see him, he will spend (or BEV) tons of time with u and explain stuff and they are up on latest treatments and have more empathy than u can imagine. You will get treatment and feel validated. Just have a local doc to take care of stuff when they are hard to reach. They WILL take care of you. I am sure someone might disagree. But, that has been my experience. I just love them and am relieved to be their patient. Hope that helps.

[Victoria]

Thank you so much! This helps tremendously I will be going to see them. Now, to find the records they need. This will be the most daunting task. Thank you so very much!

[hsinthecountry]

worth the wait for Beverly or Dr. Grubb. +1 Excellent.

[jenwic]

At my Jan. appt, my cardiologist, Dr. Schloss, suggested I see Dr. Grubb. They faxed my records to Grubb's office, but I didn't hear anything until yesterday. I guess Schloss' office noticed I didn't have an appt. scheduled yet and called Dr. Grubb's office to see what was going on. Dr. Grubb's office called yesterday and I have an appt. for June 3. That was a six month wait.

[bkweavers]

I agree with all of you on Dr. Grubb's compassion and knowledge of POTS/other dysautonomia issues but we went to another doctor. Dr. Grubb never responded to emails, faxes, phone calls from my daughter's physical therapist and other doctors. Our therapist had questions for him and Beverly that were never answered and we felt like we were getting nowhere!

We ended up going back to a doctor near us that thankfully, pushed us in the right direction. Two days after our appt. with him, he had already contacted her pedicatrician, physical therapist, and psychologist. That is what was needed! This was the first doctor to give me his email address and he would respond back to me within a few days!

I don't mean to say negative things about Dr. Grubb because I do think he's an excellent, caring doctor but I do think improvement could be made with communication. Maybe it's a case of too big of a patient load! I also think that even though he's an expert, there are special cases that he just hasn't seen yet and our daughter's was one of those.

If anyone lives in the Milwaukee area and needs a good doctor, I can recommend the one my daughter is seeing. He may already be on the Dinet list as well.

Brenda