Dr. Grubb

[luckygoat3]

Hi all,

I was wondering if i should see grubb again he barely spent 10 minutes with me at my last appt, he is good for the diagonses and explaining it but his follow-ups stink. what do you think?

[danelle]

I really don't want to advise you one way or the other because I know that Dr Grubb appears to be excellent in the POTS field. However, I had a similar experience with my first and only(so far) appt with him. He dx me very quickly and did some excellent education with me on POTS(which I had researched prior to my appt) so I was familiar with all of it. BUt when it came time for our question and answer session, he had to end out appt because he was so busy . I did hand him my list of symptoms and questions that we never got to go over but I haven't gotten a response yet and that was 4 weeks ago.

I have callled the office a few times but IF the nurse does call back it is several days later and they aren't very friendly. I know they are very overworked but if their job is too stressful that they start taking it out on the pts then they need to take a break or work elsewhere(I am a nurse and no matter what kind of day I am having physically, emotionally, or whether you get the pts from h***, I can honestly say that I have NEVER treated anyone without the utmost respect and kindness.

It took me 6 months to get into see him and that was with a cancellation appt. Otherwise it would have been 9 months. I drove for 11 hours to get there So I'm not sure if I will go back either. It was a disappointing trip-just because I felt like I was left hanging. I had a very bad spell on the way home too at a rest area and didn't thing I was gonna make it

Anyway, how far away do you live? When is your appt? Are you going for med reasons or a follow up? I guess I would take all of that into consideration before I would go back. I guess I would if need be because he is great and knows his stuff but if he doesn't get some help, he's gonna be in bad shape himself!!

Sorry I couldn't be of more assistance to you. Let me know what you decide to do!!

[goldicedance]

I agree with Deb. I might also ask myself what are the alternatives? For example, if you didn't go to Dr. Grubb for a follow-up, who else can provide treatment to you. Also, it seems to me based upon what Deb is saying that it is very trying trying to get follow up care from the doctor and his support staff. I always feel with doctors that their support staff reflects upon the doctor. He/she sets the tone for the staff.

Possibly the difficulties in getting answers when you call the nurses is designed to raise your blood pressure and help mitigate your POTS symptoms. That's meant to be a joke.

I really can sympathize and understand how you feel. Are you anywhere near Morgantown, WV? And, if so so, you might wish to make an appointment with Dr. Hoeldtke. He is doing studies using Octreotide. If you have good prescription drug insurance and you are willing to see Dr. Hoeldtke, then I would recommend that course.

Just a suggestion....

Good luck in seeing Dr. Grubb!

[luckygoat3]

goldicedance i got a chunkle with your joke.

Grubb is about an hour away from me, a waste of money the last time, my appt is in dec, in the morning i think the first ones but not sure.

susie

[danelle]

Susie,

If he is only an hour away and your appt is not until Dec, I would wait until closer to time to make my decision. Just because it is SO hard to get an appt with him. And the fact that you have one of the earliest appts may be a plus. You can always cancel it later.

By the way, my name is Danelle, some of my friends call me Dani for short but I answer to pretty much anything-LOL(especially with a husband and two teenage boys)

Let us know what you decide!

Have a great day!!

Danelle(Dani)

[Sue]

Hi everyone!!

Just wanted to put my two cents in about Dr. Grubb. I too have had my share of disappointing appointments with him. He always seems to be pressed for time but even with that in mind, he does seem to be the one with the most knowledge on these disorders.

So with that in mind. I would suggest keeping your appointment, but before hand talk to your physician and see if he/she would be willing to work with Dr. Grubb on your care. He has no problem with this. I still see Dr. Grubb, especially during the rough times. But imbetween he has been very good with communicating with my primary physician. Just a thought.

Take care and good luck

Sue

[danelle]

Hi Sue,

Just wondering, how far away do you live from Dr Grubb? It seems like most, or lots, of people with POTS, etc live in the north. Have you found that to be true?

Danelle

[Lisa R]

I am sorry that you all had negative experiences with Dr. Grubb. I've only seen him one time, but he was absolutely amazing. Yes, it took me about six months to get the appointment, and I drove about 4 hours each way. But, he spent nearly 5 hours with me! Plus, he sent me three envelopes with medical journal articles, a book on fainting for the lay public and other materials. I must have seen him on a good day. There were no other patients -- he was on service, but somehow I had an outpatient appointment that he kept.

I would definitely keep the appointment. You can always cancel it closer to the date.

Lisa

[Jackie]

I guess I'll add my 2 cents.

I really, really like Dr. Grubb and I have faith that he is very good.

I have had 3 appointments with him total and the first one was diagnosis and I was too sick to discuss anything with him, didn't get the education, etc.

The second appointment was just as bad...having a reaction to Lexapro...no help there..atenolol and Florinef to try, f/u appointment for 6 months later and nurse never returned call about medication question so I never started the Florinef.

Third appointment, 6 months later for followup cancelled. This was in April of this year so I decided to put everything on the back burner and keep taking the atenolol and Xanax and live with it the best I can because I need to work more and make more money and don't have time to try new meds and risk being unable to work.

Office calls out of the blue last week and says he can see me 2 days later on Friday 28th. Okay. So now I am all worked up gathering my records and questions, etc.

Went to appointment. Appointment at 11:00 a.m. I arrived approx. 10 minutes early and 2 hours later I think I made it into the room and sometime around 3:00 I think he made it into the room to see me. He was interrupted by his pager at least 6 times and left the office to make phone calls. I had so much to ask him and barely got through questions I had from 6-9 months ago let alone my current questions.

My biggest problem is fear of medication but I've adapted and most of the time can relax about the Xanax and deal with it. What does he do? He makes statements about Xanax being addictive, etc. and just gets me more upset. BUT he says medication is sometimes necessary in order to help a person get into a place where they can do other things....namely recondition and "reset" their system. So my prescription this time is aerobic exercise 3 times a week and a new folic acid supplement he wants me to try. I asked for support hose rx. and he obliged. He did help confirm the confusion between my POTS diagnosis and the jerky psych guy who attributes it all to anxiety so that was a plus I suppose. He also referred me to a psychologist who deals with people who have chronic illnesses which may be of benefit and which may lead to a new psychiatrist if I feel I need one for meds or even a new PCP which I defin. need. These were pluses but overall I went home totally upset the way I usually do after an appointment because I've gotten to where I absolutely hate hospitals and doctor's offices, etc. and had concluded in my mind to just put all this on the back burner and get on with my life however altered the quality and I felt like this appointment was so ridiculous because dredging everything up just gets me upset and makes me think of all the things I still to this day have questions about and they are still to this day unanswered but I got to get upset and think about them all over again and go to a 6-hour appointment to get less than 30 minutes interrupted with somebody and come away with no more info than when I went.

Such is life I suppose! I guess I would recommend keep the appointment but I'm finding at least for me that he is not a doctor to manage things so find a backup doctor for the months in between appointments. As far as getting your most important questions answered at the appointment I don't know what to say...I had everything typed out and organized in sections, etc., but never got through them, we got sidelined on questions not as important and with the interruptions my focus went right out the window. I would recommend handing him a list of your questions FIRST and let it go from there instead of trying to hit them on your own like I did because like I said...I got 2 questions into the list and he started talking about things and everything went out the window and I never got to ask the important stuff.

I cryed on the way home the way I ususally do after any appointment anymore and was upset for 2 days. Overall though, I choose to overlook the negative and see the bottom line...he said I "can reset my system" and maybe meds won't be necessary for the longterm. So, that is my goal to focus on in the meantime I suppose...trying to help my body rebalance itself.

I wish I lived closer to other specialists myself. I live right outside Toledo where Dr. Grubb is and it is of no more benefit to me than people who live in California!

[danelle]

Jackie,

Boy, you're appt sounds almost identical to mine!! I too went through the same thing. I had typed out all my questions, had them in sections and put all my symptoms and problems in order as well. We never got to any of it, I handed him the papers as I was leaving(he was already in the hall) and he put them in my chart. That was in April and still no response.

I live 11-12 hours away and don't forsee being able to go back d/t having problems on the way home last time and my sx getting worse. He did give me an Rx for florinef and midodrine but haven't tried either yet because I have too many questions about them and it sounds like they work for some people but not for long.

I too am on atenolol 50mg/day. I have been on it for 16 yrs but have had to increase the dose over the yrs(I started at 6.25mg) It generally keeps the real rapid stuff away but that is about it, I still can't do anything physical. I am also on klonopin-which is like a long acting xanax, and if I didn't have that I would be in a state of panic 24/7. I have been taking it for yrs and I don't feel bad about it anymore. I feel it is no different than taking meds for your heart or lungs, etc. I do still have lots of underlying anxiety that it doesn't help with but if I took enough to get rid of that, I would always be asleep.

My current problem is that I haven't been able to work much at all lately (4-8 hrs/wk) d/t weakness, fatigue, shakiness and feeling like I am going to pass out all the time. This has been going on for about 2 months now and it is really putting us in a financial mess-which in turn is putting more stress on my marriage which it definately doesn't need right now either.

I just wish things could be half normal again. I have had POTS for 18 yrs but just dx this yr(had many wrong dx over the years) Things are just getting much worse, I think it might be that I am getting a little older(37) and having some hormonal changes. I don't know if that is it or not though.

Gosh, sorry to rattle on. Just wanted to let you know you aren't alone and don't feel bad about the xanax. Wish I had some myself, it would help me cope better(can't afford counseling right now)

SOOOOOO, what do we all do? It's such a guessing game and I too am so sick of dr's, hospitals, tests, etc etc and nothing makes you feel better!!!

Sorry to vent but thanks for listening

Danelle

[Jackie]

Danelle:

I haven't been back to the forum until tonight and looked up your post again. Thanks for the support on the Dr. Grubb/Xanax issue. I do have a lot in common with you. I am 37 also! I saw some other posts by another patient of Dr. Grubb's being referred to a psychologist (Ken Davis I think the name is) and I might try that also because he referred me to him too (wonder if we had appointments on the same day!) but just wonder to myself if I will get worse from dwelling on things and talking about them than I do trying to ignore them. For the most part, I am doing much better (baseline crap like before I got "sick" last year and was diagnosed with POTS) and usually take the meds and forget it but I do have a fear of medication and usually around the time of my period I start getting a little obscessive about things and I start freakin about the medication again. So, I tell myself it is the "thee old hormonies" and it will go away and it usually does. All my symptoms get worse premenstrually and during menstruation and sometimes for a little while after too...

This is a very scary question for me to ask but when people talk about panic attacks are they always just physical symptoms or do they have what I call mental panic attacks. For me sometimes I have scary thoughts/intrusive thoughts about unsettling things (like something I saw in a movie or something horrible I read in the paper or afraid of stupid things or imagine having a car accident, etc....sometimes just this strange fear that I'm going to lose control but do what or why I have no idea...it is bizarre)...is this part of a panic attack sometimes or am I really nuts? I had "panic thoughts" post partum but was really young and just ignored them and never told anybody and eventually they went away (like afraid I would drop the baby, etc., ..just stupid stuff)...now here they are (i.e. the panic attacks) and they started after starting medication (Ativan) from the ER before I was diagnosed with POTS. What the hospital called panic attacks (tachycardia) make me feel a tad unsettled physically because my heart was racing but totally not the same as what I call panic attacks (i.e. physical senastions vs. mental panic and physical sensations)...like a surge of adrenaline that makes me feel like I need to run around the block or something....I guess this is one to ask the psychologist if I go...I was just curious but really afraid to know the answer actually..geez maybe I'm the only one! I wonder if it is hormone changes too since the last time I had problems like this it was post partum but I was 16 years old. No wonder I never had anymore children. Wonder if it was POTS then since everybody seems to say they felt worse or were diagnosed after childbirth? I have always had a higher pulse and lower blood pressure but besides the post partum panic I did relatively well until late 20s when I started having some dizzy spells and persistent fatigue, but still not huge symptoms until 1 episode 3 years ago triggered by steroids and then last year with symptoms unabated for a few months, extreme weight loss, constant palpitations and heart racing, extreme fatigue and muscle aches, nausea..just the whole deal. I truly thought I was dying and treated totally like a nut at the hospital. Anyway...enough of that. I just thought I would note that we have a lot in common including our age and post my scary question about the panic attacks.

P.S. I'm glad the Klonopin works for you. Dr. Grubb had me try it but it made me feel like my legs were paralyzed but my mind was racing. Then again, they had me trying so many things...Ativan and Attarax, etc., I think my body was just reacting to EVERYTHING at that time. Oh how I hate medication....I just bounce back and forth constantly...well, if I need it and it helps well then fine, but then I think, geez I hate feeling like I need something to function...don't want to "need" anything...it is a hard adjustment. Never thought of it until it happened to me...medication I mean. Some doctors compare it to insulin for diabetics, etc., but I'm sorry I'd have an easier time accepting something like that than one that affects brain chemicals. Anyhoo...

[Merrill]

Jackie -- never fear -- you're NOT the only one! (Hooray!? )

When I was in my late and early teens I had the kind of panic problems that manifested in physical symptoms I've described on another recent post ... but yes, now that I'm older (42) and know of all the dangers in the world my panicky moments are usually triggered by thoughts of the unthinkable. With my husband traveling so much in the last year, these days they often revolve around something horrible happening to him--plane crash, car crash, random shooting--you name it, I fantasize about it. Triggers terrible tachycardia, feelings of fire shooting in my veins, and all the rest. It's easy to get caught up in the cycle of negative thinking about things we have no control over.

But I've said this before elsewhere too...the frequency of these episodes has decreased since my diagnosis... and now, when they happen, I think, oh you darn pots--why you make me feel this way? STOP IT ... and I try to distract myself with something else.

don't worry,

m

[Jackie]

Thank you Merrill...that does ease my mind. It doesn't make it any easier to accept but I'm glad I'm not fruit loops. It is imazing to me how complex the mind and body is. Thanks for your support and suggestion! I too just try to get my mind on something else. Like I said it does seem to get worse with my periods I think too so it makes me wonder sometimes if it will go away after menopause or if menopause will be like a permanent state of this crap...I'm hoping and praying for the former!

I think there may be something to this exercise thing too because even though house cleaning isn't exactly exercise, I was really going at it for about 4-5 hours the other day, washing curtains and walls, sweeping, mopping, etc. and really sweating up a storm and when I was finished cleaning and took a shower I actually felt tired but satisfied and relaxed also so I think my goal is to start exercising at least a few times a week like Dr. Grubb suggested (I've never been a person to sweat that much actually but WOW with activity now I really sweat so that is different too!) but it did feel good so anyway thought I would suggest that for others (i.e. something to that natural endorphin release thing but I'm sure all the runners and stuff here already know that...I'm just not exactly what you would call an athlete!)

Thanks again...it does help to know I'm not alone because that was a hard question for me to ask.

[KarenLorrel]

Seeing Dr. Grubb was the best thing I could have done. I didn't realize how fortunate I was to have met him and been treated by him until I got home and started putting the pieces together. His knowledge and research is incredible. I would highly recommend his book too.

He is a compassionate, brilliant, overworked and much in demand doctor. IF you kept your appointment, luckygoat3...I hope it went well and you benfited from his knowledge.

Lorrell