PattiL

You will absolutely love Beverly. She's awesome. Very understanding, takes her time, answers all your questions, and if you go on a Tues or Thurs there's a possiblity that Dr. Grubb might even pop in. She's a PA and is studying to get her doctorate and plans on staying with Dr. Grubb. I really can't say enough about her. Patti

Melissa, I don't know what to say. You are in our thoughts and prayers daily. We wanted to stop by your house when we saw Grubb in December but our appt. was too late in the day. I'm hoping when we come that way again in August we'll find you at home, in your comfy bed with your kitties! We're praying everything goes ok with your port removal and insertion of a new one! We love you Melissa, PLEASE be well and get better. Patti and Chrissy

We live in Ohio also and like Nina said, they cannot exclude for pre-existing conditions. I THINK there's a loophole to that IF you've had a lapse in insurance (I don't know what amount of time). So, if you haven't been insured for awhile, that might be where the problem is? Although not my favorite insurance, I wonder if you could get Kaiser, it would be better than nothing. Patti

Hi, We purchased ours at Target, but I know Linens n Things and Bed, Bath & Beyond also carry them. They come in a set of four and we placed two of them under the casters of just the front portion of her bed. Crossing our fingers, but still no morning nausea! Yea!! Here's the link for the one at Target so you can see what they look like. http://www.target.com/Plastic-Bed-Risers-S...sers&page=1 Patti

I know this has been posted numerous times, but I just thought I'd throw this suggestion out. Chrissy just started tilting her bed this past week and there has been a noticeable improvement in her mornings. No more nausea!!!! Anyway, my suggestion is, instead of using boards to tilt her bed (which we had tried previously, but didn't seem too stable) we bought those bed risers that you can get to raise your entire bed so you can store things underneath. We got the type that stack, so it's adjustable up to 10" (I think). So far she is just raised up about 6" and that seems to be helping. Just thought I'd mention what worked for us. (Although this is probably what most of you are using anyway!!! ) Patti

Hi, Bring a book--or two! Seriously, there usually is quite a wait, so be prepared. You're going to love him once you get to see him. If there's an extra long wait (we've waited for as long as 4 hours), ask SHERRY if you can leave and come back. And ask her what would be a reasonable time to come back. That way if you're up to it you can at least go to lunch or something. I hope your Dr. Grubb visit goes well. Good Luck! Patti

Hi Sandy, Welcome to the club! I don't know who you saw at CCF, but Dr. Robert Shields (Phone: (216) 444-0855) is a neurologist there and an autonomic specialist. There are a few on the board that I believe have been seeing him regularly. Chrissy had her first appt. with him in early Dec. and we are seeing him again this Thursday. Chrissy's regular POTS Dr. is Dr. Grubb, but since we only see him once a year (and his PA, Beverly, in between those visits), we thought it would be a good idea to get someone closer who is also familiar with Chrissy/POTS. He takes his time with your visit, listens and actually understands what she's going through. I hope you find some relief soon. This is a wonderful forum and full of valuable information. Patti

Dr. Grubb does have some health issues, but he is still seeing patients on Tues. and Thurs. You usually have to wait about 8-9 months to see him unless you call frequently to see if someone has cancelled. He does have an excellent P.A., Beverly and it is much quicker to see her, but I don't know if they require you to see Dr. Grubb before making an appt. with her. Patti

Hi Everyone, Chrissy had to go to the Dr. again last week, thinking she might be getting a sinus infection or something. The Dr. said she was all clear, no sinus problems, no redness in her throat, etc. and blamed it on it being allergies. Problem is, Chrissy has been tested for allergies more than once and they told her she is 'somewhat' allergic to dust and some trees, but it really shouldn't affect her. She's also been tested for different foods, which was also negative. Also, with real allergies we've always been told that you'd have watery, itchy, burning eyes. She's feeling better today, but she missed school and work almost all of last week. We've had the a/c on all week (only in Cleveland can it be in the 80's and 90's in October!). Is this just another one of those things where the Dr. doesn't really know what it is, but has to blame it on something? Patti

Angela, It's the same # as Grubb, 419-383-3925. When you call ask for Beverly, every once in a while you could get lucky and she'll pick up the phone (it's happened to us twice), if not, leave a message on her VM. Good luck. Patti

Angela, If you are able to get a referral from one of your Dr.'s to see Dr. Grubb, is it possible that you go and see Beverly b/f Grubb? I know it's not the same, but Beverly is very knowledgeable. Also, If you leave REPEATED VM's for Beverly, stating your situation, there is a chance she might be able to do something for you...like at least get you in sooner to see her. Also, if you do get an appt with her soon, see if you can make the appt. on one of the days that Dr. Grubb is in. It would be in your best interest b/c then if Bev has any questions/concerns she can walk over and talk to him and he MIGHT even be able to stop in a see you. Now, I'm not sure if they'll even let you see Beverly if you're a new patient w/o seeing Grubb first, but it's worth a try. Don't give up in trying to contact her. You just might have to leave a few VM's b/f she gets back to you, just be persistent. Also, if you're having trouble with the front desk personnel, ask for Sherry. She's been there quite a long time. Some of the other girls are soooo new, they don't have a clue of what's going on. (Not just my own opinion). Good luck, don't give up!! Patti

She is doing better today. She didn't mention a headache when I woke her up b/f I went to work, but that doesn't necessarily mean she didn't have one at all. She went to work today for a few hours and has a class tonight also. I hope it doesn't wear her out too much. I just hope this was a flukey (sp?) thing and won't happen again. Patti

Another exciting couple days in the hospital! Late Wed. night Chrissy was talking to me one minute and the next, she wasn't able to speak. Her jaw and tongue were numb and she just couldn't get the words out. We went to the local ER, they did a CAT scan and got a little nervous--they don't have any neuro's there. Chrissy's internal med Dr. was called and they then sent us down to University Hospitals in Cleveland, (Chrissy'll do anything for an ambulance ride--hahaha) which we were grateful for, since they have most of Chrissy's records. Anyway, they did an MRI and and EEG. BY 7:30 am she was able to speak normally. They came up with 'complex migraines'. It's when the blood vessels in the brain become constricted and then dilate; when the blood vessels dilate, the headache develops. (She had complained of a headache (not migraine) around 9 pm and took tylenol, which helped. Scary stuff. We thought she might be having a stroke. Once in the ER, her left arm was twitching quite a bit also. Her jaw is still alittle numb, but they didn't seem too concerned with that. We have to go back to the neuro clinic in two weeks and have a ton of questions. Just curious if anyone has gone through this ordeal and if they've had more than one. I'm glad it's over!!! Patti

Hi Melissa, I'm so glad to hear that you're home!! It must feel great to be in your own bed. Try to take your time getting back into your routine--don't overdue it! Take care of yourself, love and prayers. Say Hi! to Mom and Dad for me. Patti

Thanks for posting Nina. What shocking news. My thoughts and prayers will be with her husband and family. Patti

Hi Melissa, Hope you're feeling better. Our thoughts and prayers are with you. Hugs to you and your Mom and Dad. Lots of love, Patti and Chrissy

In our family, three of us are taking Provigil. I have sleep apnea, but was still pretty tired during the day. It seems to be helping me quite a bit. Chrissy's younger brother (18), started taking it about 2 weeks ago and he's noticing a slight improvement. His Dr. wants him to keep it up for a couple of more weeks with the addition of meletonin 5 hours b/f bed. And, last but not least, Chrissy started taking it about a month ago. She started on only 100 mg. in the morning and today took an additional 1/2 pill and noticed the difference. We'll see how she does on 1 1/2 and maybe work her up to 200 mg per day. My son's Dr. told him to take it on an empty stomach if it doesn't bother him, she said it would start working faster. We pay $50 a month for each of our scrips. Dr. Grubb had mentioned that some people are on as much as 400 mg. I'm wondering if he could write the prescription for (2) 200 mg. per day, so that they would last two months instead of one. I was asking him about the generic version and he said there probably wouldn't be one for another 7-10 years. Hope that's not true So far at least it seems to be helping all of us--we'll see what happens. Patti

Hi everyone, My mom called me tonight and said that Dr. Donohue, who writes a syndicated column, had an article on POTS in the paper today. I found this link from a Detroit paper.. http://detnews.com/apps/pbcs.dll/article?A...040/LIFESTYLE03 Yea, hopefully more awareness. Patti

Just wondering if anyone is seeing Dr. Grubb next Tues. Chrissy and I will be there and thought we could meet up if anyone had a appt. the same day with him or Beverly. Patti

Just curious, did you see Dr. Chelimsky at UH or someone else? Chrissy has seen him in the past, but I've heard there is at least one other Dr. there with him now. If you go to Dr. Grubb you'll absolutely love him. Patti

Hi, Darn, we'd be missing you by one day! We're seeing Dr. Grubb on the 31st. I would say to go and see Bev. I don't know where you live, but if it's not a terrible inconvenience, I would go. She's fabulous and like Lisa said, she can consult with Grubb if needed. Good luck. Patti

Nina, Hope your follow up with your surgeon went well and wishing you a speedy recovery. Take care, Patti

Today I just brought home the newest edition (July 9th) of 'First' magazine and started reading it. As I was reading the article titled "Does the heat make you super tired?", I thought to myself -- wouldn't it be funny if this was finally an article about POTS! On pages 26 and 27 (yes, two pages!) there's a article about NMH. There's even a couple quotes from Dr. Peter Rowe from Johns Hopkins. Anyway, the lady featured said she was helped tremendously by a book titled "From Fatigue to Fantastic" by Jacob Teitelbaum, MD. Has anyone heard of him or has anyone read this book. I'm just wondering if any of these supplements (no medication) have been tried by any of you and if they've been helpful. Of course, tomorrow I'm off to the library, or bookstore, to read this book. Patti

Unfortunately, I think most people that have gone to the CCF have had a very similar experience. The Dr. there is good at diagnosing but not much else. No follow up whatsoever. i'm glad she wasn't the first Dr. we went to regarding POTS, we just went there for a second opinion. Are you able to go see Dr. Grubb in Toledo, or at least Beverly in his office? Either one of them would spend loads of time with you and are very understanding. It's very difficult to find a local Dr. to treat POTS, much less one that has ever even heard of it! Good Luck in finding someone. Hope you're feeling better. Patti

In the past, Chrissy has tried provigil and proamatine (separately). This was when she was constantly getting sinus infection after sinus infection and always on an antibiotic. Now, since she's had her ENT surgery, she's only had one mild sinus infection in 3 1/2 months. This is definitely a record for her. Anyway, she's thinking of asking Dr. Grubb/Beverly to have her try one of these drugs for her fatigue again. Since it's been a couple of years (I think), since she's been on either, I was wondering if anyone's tried both and has had better luck with one rather than the other. She tried Adderal in Xmas of 2004 and it made her totally loopy! She recently saw a sleep Dr. at the Cleveland Clinic (who was awesome by the way and actually knew about POTS!!) and he thought she should be on about 200 mg. a day of Provigal. Dr. Grubb had her on 100 mg. Maybe this could also be why she didn't think it was helping. Beverly is suppossed to call us back in the next day or so, but I just wanted to check with everyone on their opinion. Thanks, Patti