My Visit With Dr. Grubb

[Angelika_23]

Well, the visit was not everything I had hoped it would be.

I had a 3 hour wait, then we spent 3 hours with him. He is an extremely nice person, and so very smart! He explained and explained with flowcharts and presentations. My husband was very intrigued. I simply cannot process that much information.

He did confirm that I have post viral POTS (from viral meningitis), and another nervous system problem due to the meningitis. He is going to start me on Mestinon. I am picking up the prescription tonight to start it in the morning. I am very nervous about taking new drugs. Let's hope I react well to it. I am so sensitive to medications.

The thing that bothered me most was he kept on about my weight. Yes, I am overweight. I know I am overweight. Not being able to even go up a flight of stairs, or walk up the street, or stay upright period pretty much keeps me from exercising. Which is the reason I sought him out. I need to get my life back, or at least as much of it as possible. Anyway, he kept lecturing me on future health issues if I don't lose weight. It's not like I want to be this heavy. I'm not considered morbidly obese... Anyway, at his suggestion I am going to join weight watchers and see how it goes. If the new med works, then maybe I will be able to go to the Y and exercise again.

More good than negative came out of the visit - I was just upset at how much my weight was discussed when I really consider the weight to be a symptom, not the problem. He acted like I didn't understand what he was saying.

Anyway, wish me luck with the mestinon...

Angela

[ljoeb]

Hey Angela... I'm right there with you. I, too, put on some weight with the onset of my disorder. I've been doing Weight Watchers for about 4 months now and it is an easy plan to stick with. I think you will do well!! If you need any help with it, just let me know!! Joe

[Sophia3]

Well after ALL you have been thru with doctors not GETTING it locally (the one who gave you a TTT with meds and compression stockings comes to mind !) I am sorry to hear Dr. G was so focused on your weight.

Many have had weight issues in both directions with this illness and I am curious to see if others who are over weight have gotten this response from Grubb? I know he is a cardio doc but still. Many pts have gotten lectures from any doctors but I can't remember if it was any of the ANS experts.

I know nothing about W Watchers except they get money for calling calories "points" instead of calories to get folks into their program! But I have always heard it's a common sense program. Many moons ago my weight fluctuated 30 to 40 lbs my entire life...after working briefly in healthfood store and then the exercise field (always the heaviest on the staff in the latter places) it was the glycemic index that helped me....I have hypoglycemia and have my whole life. I have little appetite now and sitting up to eat is tough as being upright keeps my stomach in knots from adrenaline surges.

Anyway, I am glad he confirmed your ANS issues but sorry you did not feel better understood.

Be careful in this DREADFUL swampy, hot high dewpoing weather. Be nice to yourself.

[Ernie]

Hi,

I am overweight and it is because of the meds and the inactivity. I don't know if my docs tell me about it but I don't care if they do because what is the most important thing is that I don't faint or that I have the less syncope possible. So if I have to weight more to be able to faint less then that be it.

[Rachel]

Angelika,

I'm sorry that the appointment wasn't all you had hoped for and that you felt misunderstood. I'm glad you were able to get in for your appointment, though, and receive confirmation on the post viral POTS diagnosis.

I know that Dr. Grubb emphasizes exercise with all of his patients, whether they are overweight or not, so don't take it too personally. Because of our circulation problems caused by veins not constricting properly, exercise is important. When your veins can't help your blood to flow back up, muscles can compensate for that to a certain extent. To keep the muscle tone, though, we must exercise.

I hope the mestinon helps you. Keep us updated.

Rachel

[dsdmom]

Angela,

Did Dr. G suggest testing you for the antibody for nicotinic acetylcholine receptor (AChR)?

I've been on mestinon a couple of months - it seems to help for me. I'm sensitive to meds though so am doing better on a lower dose than what was first prescribed - and I use the brand name syrup, not the generic pill - the generic pill gave me issues. Good luck!

[Maxine]

I'm glad your POTs was validated by Dr. Grubb. I hope the mestinon helps you.

Your not alone with weight struggles, some with POTs have gained weight for various reasons----from medications, lack of exercise due to the (exercise intolerance), or changes in hormones. I gained about 30 pounds from meds, and have lost about half that, but it is really a struggle.

Aquatic therapy is good because you won't have the issues with gravity. Swimming can burn lots of calories. You may be able to tolerate a stationary bike also. Heat is also an issue for most of us, and that also works against you when trying to get some exercise outside. Can't even swim in the heat.

I am very happy that Dr. Grubb DID take your illness seriously, even if he did focus some of the appointment on weight--

If you do go into a weight loss program, it's very important you have a good support system. Weight watchers is good for that, but you can also do it on line if you have good support outside of that.

Maxine :0)

[LindaJoy]

Angela, I'm sorry you had some disappointment with your visit. I know we all get such high hopes when one of us goes to Dr. Grubb.

I hate to say it, but I have a weight problem, as well, but mine is the oppositive. I'm too thin. Now, don't everyone groan yet, please. I cannot keep weight on due to my eosinophilic esophagitis and inability to eat nearly all foods. According to my doctor, because of my disease, I will always struggle with being too thin, and believe me, it's not fun, or glamorous, or desirable. I look ill, I feel ill, I definitely don't feel glamorous.

Take care and know I know how you feel, even though we're on opposite sides of this "weighty" issue.

Linda

[Maxine]

I'm sorry your on the opposite side of the fence Linda. That side isn't fun either. Unfortunately I had this experience temporarily, and know this is also very upsetting. I couldn't eat when my symptoms first started.

The problem with being overweight is that many woman aren't taken seriously when going to a doctor with different health issues that need to be addressed. Often they get a lower quality of treatment, and are treated with disrespect. My Aunt went to the doctor complaining for over a year of different neurological type symptoms----(some of her complaints affecting her ANS), and the doc just kept telling her to lose weight. Finally just a couple of days before Christmas she collapsed on the floor. They found two brain tumors---

Most of it was removed, and a small portion remains in her brain. It was not cancerous thankfully, but still dangerous. It could have killed her. My other Aunt had a very large brain tumor that was cancerous. Both Aunts were overweight, and did not receive adequate medical care until they collapsed. The other Aunt had most of her tumor removed, and lived another 10 years. The Aunt with the cancerous tumor did get better medical care after the tumor was removed, but the aunt with the non-cancerous tumor still gets treated as a "drama queen" when she complains of any symptoms.

My mother was not taken seriously about her symptoms until they found a small tumor in her bladder that was cancerous. They thought this was the only problem, not taking her other complaints seriously. She found out her whole abdomin was infiltrated with cancer and died two days later. She was overweight.

There are serious health risks to being overweight, but some doctors should know better that some health complaints aren't related and still need to be investigated.

I think people who are "thin" are more likely to be taken seriously. A lot of Doctors have trouble looking past the "weight" issue.

I don't mean to be on a soap box about it, but this IS something that needs to change. There's nothing wrong with doctors being concerned about weight issues and discussing them with their patients-----as long as EVERTHING isn't balmed on being "overweight".

Maxine :0)

[Sophia3]

Maxine

I agree about over weight folks not being taken seriously. I was up and down with my weight my entire life as a kid and adult...had 3 sizes of clothes in closet at ALL TIMES and that 4th size of "someday i will be that thin again" twelve years ago as my POTS and ANS issues/fatigue worsened, so did my appetite

I gotta be honest, I am surprised at the lack of response on this thread though I know many do NOT like to admit or talk about being overweight. The fact remains, many POTS pts are.

Many of us, myself included, pushed Angelika to see an ANS expert thinking she would get COMPASSION and kindness compared to the clueless doctors around hear telling her to buck up and relax....or some idiot doc who gave her a TTT WITH MEDS and compression stockings and said "ALL WAS FINE". Well clearly, it was not.

This is not supposed to be a bashing an ANS specialist thread but the fact remains one of the most compassionate docs in the field jumped on her weight and focused on it constantly. And then did his normal 30 minute ANS explanation/diagram spiel. There are many regulars around here whose names I no longer see so I guess that is why there was such a lack of response to this thread. I rarely come here myself but to check on a couple links and wonder how some are holding up....to many new names to keep up with with my limited energy.

I would be MOST CURIOUS as to how many have gone to any of the ANS experts at Mayo, Vandy. Toledo or CClinic and had being overweight be made center stage of the appointment. Angelika was only hoping for a nice understanding doctor visit for once and to help her addess her often progressing symptoms. But I guess it's not PC to ask talk about such things if they have to do with being over weight. .

For the record, I have met Angelika and while she may be considered overweight, she is by no means obese and is tall and carries her weight well. When you add up the difference in our heights and what I weighed most of my yo-you dieting life to her height/weight, it would be even. I only learned to work hard at keeping it off while still healthy (had to work out 3 hrs a week) and then POTS disabled me and now the ANS issues keep me thin and I am not on meds to make me gain weight.

Only in the last dozen years or so have my adrenalin surges affected my appetite and thus worked as a 'natural anorectic' (weight loss aid)

Some docs have tried to invent a "TALL THIN MODEL FOR POTS" but from what I have seen on many boards, not everybody fits into the same mold.

Angelika, I am sorry you did not get the visit you were hoping for and I hope your next autonomic specialist appt can be more fruitful since they will also do many test. If GAINING or LOSING WEIGHT was a fix for ANS issues, we would not need boards like this or foundations.

I hope you are feeling better and can give us an update though I know you have been feeling rotten with the weather (nasty hot and muggy!) and out of touch...not to mention busy struggling to hang on to working full time and being one of the busiest young mothers I have known.

Give us an update when you see fit.

Sending thoughts and prayers to you as you try the new meds.

Soph

[Angelika_23]

Wow.

Thanks everyone for your support. I was beginning to think that everyone (except me) that had POTS was thin. I am glad to hear from others who have the same struggles. I am not happy that others struggle, but it is nice to know I'm not the only one with this problem.

I don't feel that the visit was entirely useless, he had many other interesting things to say and show us. I came home today and found two packages from him - a book and a lot of articles about POTS. Very thoughtful of him to send those. I am combing through the articles tonight.

I still wish my weight hadn't been the most active topic while we were there, but I did go to a Weight Watcher's meeting tonight. I will see what I can manage. Maybe the new med will help and I'll be able to start exercising again!

The new med, Mestinon, seems to be.... okay. I am not having any bad reactions to it today, the horrible stomach issues seem to be resolved as long as I have a dairy product with it. My husband says I seem a bit steadier, and I am now wearing my contacts all day, but other than that, no huge differences. My dose gets upped again on Friday.

Thanks again everyone!

Angela

[mkoven]

I've posted in the past on this topic. I'm overweight and have ans problems. I've struggled with my weight my whole life. I've often dreaded going to the doctor, for fear of having my weight picked on and turned into a moral issue. I do not fit the tall/thin stereotype. My pcp's nurse recently said she wouldn't expect someone with my weight to have such low bp. I'm not morbidly obese. Sure it would be great to weigh less--at the very least for my eds joints. But there's no magic bullet, and it's not like I haven't tried. repeatedly. since I was eight. I've also had docs tell me i couldn't have eds, because i didn't look like abe lincoln. oy. if exercise, diet, and willpower were all that it took...

[dizzygirl]

I've been a patient of dr g now for a good 5 1/2 yrs.. and i have had isues with weight gain since i got very sick in 2002.. i had about a 90 pound weight gain in the spand of 6 yrs.. and its not all diet related.. I believe a bulk of it is medication.. i gained alot of weight on pxil and zoloft.. and in the last 4 yrs my weight has yoyo'd

with that said.. i have seen dr grubb and thankfully he never goes on about my weight... just that he wants me to stay as active as possible.. and when i do see him and there is weight loss he encourages to keep up the god work so to speak..

I think that dr. g knows how devastating this illness is on us.. and he wants to help us however he can...even with recommendation.. though i know how it feels to be on the spot with your weight...

now my next thought to chime in on other response.. as a general statement to other drs i've seen have been very critical on weight issues.. and tell me all issues are b/c i need to loose weight.. mean while not looking at the fact that rapid weight cause is acutally probably a casue of something ya know

i wish you luck hun!

[dawn]

HI,

I am also overweight. Mine is due to SSRI"S. It puts on an automatic 30# when I take them. Stop and I am my ideal weight but anxious to the point of panic.

No one has mentioned my weight but they do stress lower leg strengthening. I know how important that is to help with the pooling in our legs.

I usualliy address the weight issue myself first thing.

I eat between 800 and 1000 calories a day. I have no appetite. I literally make myself eat.

Don't let it bother you. I did join weight watchers about 5 years ago for a year and lost about 10#. My friends had great success, me, it was like 1/2# loss every week. Don't get discouraged if the weight comes off slowly.

Wish you the best.

Dawn

[havefaitherin]

I feel compelled to reply to this. I have seen Dr. Grubb for 2 1/2 years now and have to say, that I too am overweight, but have never felt that he blamed that to be the CAUSE of my illness. As one said earlier, he truly cares about our well being and wants us to be healthy so that we can have the best life possible. He gets this stuff....and I have only seen kindness, caring and compassion when visiting him. Please don't let this discourage others who may be considering seeing him for help. I have been to two other major Autonomic places with lots of test and no follow up. He is one of the best we have here in the states and he just wants us to be as healthy as possible. Spending three hours with a patient is amazing in itself these days!!!!

[Maxine]

I think we all know Dr. Grubb is a great Doctor---

My complaint is about other Doctors in general----------I simply can't believe some of the things I have witnessed personally.

Maxine :0)

[juliegee]

I'm sorry Angela that you felt picked on. I really hope mestinon makes a difference for you. Dr. Grubb, from what I have heard from many here, really seems to be one of very few docs who "gets" ANS issues.

I hate to get off track, but I just wanted to mention that I feel "best", most stable, when I am heavy for me. I wonder if others have the same experience. I have been very thin most of my life, probably due to ANS issues. I'm now "normal", but feel very heavy for me (5' 9"@ 140lbs), 20lbs over my normal, and my ANS symptoms are under good control. It's like I finally have a bit of reserve to draw from...does that make sesnse? That extra weight has helped things calm down for me. I'm also older, 46, maybe that has helped my symptoms too.

Does anyone else feel better when they're a bit heavier? Just curious.

Julie