mrsdavidson8605

Yep i've had that happen too. I would suggest having the glucose tolerance test with insulin levels checked. I'm doing mine tomorrow. There have been some threads posted about that. read up on it! I think it's worth at least looking into ,especially if you're not getting any better, like myself.. good luck!

p.s. last year at tax return time, my husband and I bought one of those adjustable bed frames and I sometimes sleep elevated. Not sure if it really helps or not, but I do wake up less dizzy. May be worth the investment.

Thanks for all the replies.. I went to the doc and he was very open to doing the test! yay! it's scheduled for tomorrow morning at 8am at the hospital. I will fast for 12 hours before. They are doing a 3 hour GTT with insulin being checked. They are going to check it every hour, should it be every half hour or does it really matter? I'm just glad he's actually doing the test!!! I hope I find an answer down this road..

After talking with Sandy for a couple hours over the weekend, I am really interested in the correlation between dysautonamia and hypoglycemia. I'm another one who has had fasting glucose levels be fine. I am going to go to the doctor tomorrow and ask for a 3 hour glucose tolerance test WITH the insulin levels checked at each blood draw as well.. just wondering how many of you have had this test done and came back with abnormal results? How many are using the Metaforin and seeing success? (I know Sandy is!!) I'm just so discouraged about any other treatment i'm hoping that something comes up for me here. I was told by Dr. Grubb's PA to try another beta blocker today. I just can't put myself through that, since the last time I tried a beta blocker, my blood pressure was about 80/60...

Rachel

I'm just not doing any better and i'm about to go crazy. I've thought about going ahead and trying the Procrit (sp?) injections. I know most insurance companies won't cover it, which is a big reason why I haven't tried it already. Plus i'm just nervous about the drug itself and possible long term risks. Dr. Grubb did explain to me that it is fairly safe, but my mind can't help but wonder. If you have taken it, do you see any improvement? If so, what specific improvements have you seen? I know every case is different, butI would really like to get back to being able to maybe work just part time, if possible. I know it may not be possible, but if this can help, I guess it's worth a try. Thanks!

Hello,

You're not the only one! I am having sleeping problems as well. I wake up between 3 and 4 am every morning. And I never get a restful sleep anymore. I'm going to look into a sleep study, I think. Take care.

Thanks for doing that! I just joined the cause!

Rachel

I haven't posted on here for a while, bc honestly, things were a litte better over the summer. Not wonderful, but I was able to get out and do things. I went and saw Beverly & Dr. Grubb in July. They both agreed I should try a birth control pill that stops my cycles all together. They also suggested Welbutrin and the injections, which I don't want to do the injections due to the fact that my insurance wont pay for it. Anyway, Dr. Grubb said to start the BC pills for 2 months, then try something else. At the time, I was feeling decent, and thought "I may not even need to take anything else at this point!" ha boy was I wrong.

It seems I have two different scenarios when I get sick. Scenario 1: I am extremely weak, my heart races, can't think straight. Scenario 2: I feel like i'm having adrenaline surges day and night (like i'm on a rollercoaster ride & can't get off). I can't sleep well, which makes me SO tired during the day.

Right now, i'm back into scenario 2, which is the worst of the two. I feel so horrible! I know it's not anxiety, but it almost sounds like it, doesn't it? I begin to doubt that it's POTS again, since there are so MANY different symptoms. I don't know where to turn from here. Should I get a sleep study? I have an appointment with my PCP on Monday. I am going to ask that he draw lab, just to make sure everything is within range ( I had kidney surgery about 6 months ago so that's not a horrible request, I think). Then i'm going to ask that he consult with Dr. Grub, although i'm not sure if my doc will do it or the nurse. I hate it when they have the nurse do their work for them! UGHHH anyway...

Any suggestions? It will be 2 years in January since my symptoms started. They say average onset is 2-5 years, i'm hoping i'm on the low end of that spectrum but at this point, i'm not feeling too positive about it. I think the worst part about this (besides NO ONE understanding) is that you do fairly good for a while, then it hits you again like a mac truck.

Anyway, I've been watching that new show called the "Doctors" on NBC and I thought about writing to them. Maybe if a bunch of us did, they would air a story on POTS/NCS and we could educate more people. I think it's so rediculous that so many doctors don't have a clue!!!!!!!

I had been doing so well (that's why I havent been on here much) then, like a wave, it hit me on Saturday. I've been down ever since. I know that POTS does that, but it doesn't get any easier everytime I go through a bit of a relapse. I think it hurts me more emotianally than anything else... I hate being trapped in this body when I don't feel good... ugh....

Okay so I feel like a freak when i'm sitting at home or out with friends and different body parts start twitching.... i've had my fingers and thumbs do it, my toes, even my eyes! Anyone else have this problem and what do you do about it? Seems like it's a neuro thing but i've been checked over by neuros what seems to be about a thousand times and they haven't found anything...

My husband and i have been praying for Dr. Grubb and his wife since we got the letter... I've never met the man but I can tell he has done amazing things in people's lives and I just pray that God will put healing on that famly.

I saw Dr. Erik Wissner at the Mayo Clinic in Phoenix... he's an electrophysiologist... good luck!

Hi,

I'm so sorry to read about your family. Thank you for going through this painful process so that others like myself may have answers in the future! I will be praying for your family...

Hi,

I'm sorry to hear about what happened to you at the Y! Just know that there are others that have had the same type of experiences in public places! it is soo humiliating!!! Anyway, I wanted to comment about swimming. I have been just swimming laps on my own and have really had no triggers from it, except that if I swim too fast my heart beats like crazy... maybe you could just try swimming instead of the aerobics.. I think, for me anyway, it is better than aerobics bc I'm in a laying position the whole time, instead of a standing position.. plus I get the same type of workout! good luck!

I'm actually not seeing Dr. Grubb. I'm seeing Beverly. I do have an appointment to see him in October, but as of now, not sure if that appointment will stand..

there are so many feelings i have...

dizzy

light headed

headaches

muscle aches... BAD!

can't sleep through the night....

trouble with temp regulation (keep it at about 70 degreese in the house plus a fan on me at night and still get hot when I sleep)

can't keep fluids in

weak

foggy brain A LOT... forget my train of though quite often

clumsy

unsteady gait

heat racing

chest pains

rush of feelings (some would call it a panic attack but I know it's the POTS)

See how different we all are?? that's why we all have trouble accepting the diagnosis bc we think there must be a better explination to all these different symptoms!!!

Hi,

I (along with many others here) have dealt with the same problems. I have often told people that if I had cancer or something like that, people would understand bc they can put their finger on something like cancer. POTS and other dysautonamia problems are almost invisible bc on the outside we look fine (unless we're sheet white and about to pass out! lol)

When I was first diagnosed, I had a hard time coming to grips with what POTS was. I was kinda like you (I read some of your other blogs) about really not believing that POTS was the right diagnosis bc I had been through so many other tests. So I had to first come to terms with it myself (which I am still working on) and then explain to others the best I could. Now that didn't always do the trick bc there are some people who, no matter how much you try to explain, they are going to have their own ideas. The biggest thing I have learned over the past 6-8 months is I would rather spend my energy (or what's left of it) figuring out how to feel better than trying to persuade others to believe me that I really am sick. I've had close friends treat me like i'm crazy and depressed. It really hurt but I can't change their minds so I have to move on. Just know you're not the only one struggling with this same exact thing... I always did think it was terrible that not only do we have to struggle physically but we have to struggle emotionally too sometimes... I'll be praying for ya!

My husband and I leave for Toledo a week from Monday and i'm starting to get a little excited/nervous to meet Beverly. Just wondering what others' experiences were with her... has she been helpful? It's about a 16 hour drive from Wichita to Toledo so i'm hoping it's worth it!

I was feeling so much better and I even posted a blog about it but then, about a week ago it all hit me again like a truck. Please keep me in your prayers. I think the most frustrating part of POTS is going 2 steps forward and 10 steps back all the time...

I hope everyone is doing okay. This Kansas heat is killin me! Not only is it about 100 today but it feels like 120 with the humidity! yuck!!! Can't wait till the leaves start falling again

Hi,

I saw Dr. Wissner (sp?) at the mayo clinic. He is an electrophysiologist. He's a very nice person and was helpful to an extent for me.

My cycles have not been regular since before I had my daughter over a year ago. I've had horrible cysts in the past few months which have also caused problems. My OB changed my birth control pill from YAS to Loestrin 24 last month. My cycle is now shorter but I feel like my POTS symptoms are even worse than they were about 6 months ago when I was really bad. I'm just wondering if the change in hormones could have anything to do with it...

Just wanted to send a quick update to say that I have ssen a little improvement over the past few months (knock on wood!)... I've been swimming at the YMCA and am now up to a little over 1/4 of a mile each time. It wears me out but I can see a difference. My heart doesn't race as bad. I'm leaving Ks on the 28th for a trip to Ohio to see Beverly on the 30th. I'm hoping she can add to this improvement!

Hi,

I would encourage you to find a PCP that is supportive, even if they don't have all the answers. The first step is getting a team of docs who are behind you. I probably wen through at least 5 PCPs before I found one who was willing to do pretty much anything to make me feel better. Also, maybe see if your cardiologist would be willing to consult with either Dr Grubb's office or the Univeristy of Columbia. My doc has been doing that and they have been giving ideas of which meds to try. Hope this helps.

HI,

When my symptoms first started, I had a lot of numbness/tingling all over. It's not as bad now. Maybe every few months I will experience it. I drove myself crazy for about a year or so, going to docs, determined to find an "easier" answer than POTS. POTS doesn't make sense and a lot of the symptoms seem soooo far out there. don't get me wrong, you should definately make sure and rule out things like neuro problems, but many of us have been down that road and come up empty handed... just don't be suprised if all those crazy symptoms are because of POTS. I think once I came to terms with that and started trying to manage my POTS symptoms, I didn't go quite so crazy. I hope your daughter is better soon!

Every few months my thighs start hurting. like i've been out running 10 miles or something. They ache so bad! Does this happen to others? If so, what do you do for it?

Sometimes I get really worried that I am going to have problems with this POTS thing forever. I know there are some who have recovered, but not many. Just wondering how long everyone has had it? I've officially had it 1 1/2 years, but I think it's actually been longer than that. The doc at the mayo said that if it's caused by having Mono that it usually runs it's course between 2-5 years. That seems like forever to me!!! I really want my life back! (don't we all!!)

That is really neat! Anyone know where you can get one in the US?