mrsdavidson8605

You should write novels (or maybe you already do! That was a great read! And it was just about laundry :) I totally understand your frustration with going up and down stairs. I feel so guilty that our laundry is NEVER caught up. Ours is in the basement so it never gets done! I feel your pain!

Thanks to all the replies. I had this long reply about all my insulin levels, etc, but it didn't go through and got deleted! GRR.. it's hard for me to get back in a schedule and get extra sleep when I have a 22 month old to take care of, but i'm sure others have their obstacles as well.. I think the provigil isn't helping much and i may just stop it all together. Going to talk to the doc about this. Dr. Grubb acutally called me HIMSELF and left a message, but of course, I missed the call My insulin levels are very high. I did a 3 hour glucose tolerance test about 6 months ago and found that after 1 hour of drinking the sugar drink, my insulin levels were over 3 times the normal range. I just now finished a 3 day glucose monitoring system and go to the doctor tomorrow to get the results. It's sad that i'm hoping they find something. I'm just frustrated that they have known I have this insulin thing going on for so long, but they write me off because i have the POTS label and they say everything is related to it.. which is true to an extent, but POTS people can also have other medical conditions complicating the case. SO FRUSTRATING!!! It's this big question mark that we have written all over us!!!! I think the blood sugar/insulin thing is a problem for more people than we know, just from talking to others on here, but that's just one of many many theories... ugh.. just tryin to hang in there!! Thanks everyone! going to bed now since it's almost 1 am!

Here I go again.. I did something this weekend I promised myself I wouldn't ever do again.. go to the ER.. it ended up being a waste of time and money (shocking, huh?).. I am soooo fed up with feeling sick! My "relapses" were shorter and now it seems like i'm not getting any remission time and the symptoms keep getting worse. UGH!!! Can't even put it into words! My muscles ache so bad all the time, and i feel like i'm so weak i shouldn't even drive. Sometimes I can't even think straight enough to know what day it is but if I even mention that to my doc I know he's going to say it's depression.. i'm s o tired of hearing that word! I know it's a real problem but it's not what i'm dealing with!!!! I am taking provigil and feel more cranky on it.. it doesn't seem to be helping so i'm just taking it when i am in despereate need to stay awake. My doctor has pretty much given up on me. I can't see dr. grubb that often obviously for several resons, including the fact that i live so far from him. I am having difficulties with my doctor communicating effectively with Dr. grubb's office... ugh! This probably doesn't even make sense i'm just rambling all my frustrations. And then there's this whole insulin thing. It's still messed up and I am not doing anything to treat it. I went to a dietician and she told me i DONT fit the mold for hyperinsulinemia (i'm tall and pretty thin). I keep losing weight so the endo i'm seeing now just had me do a 3 day gluco test to moniter glucose levels. I've had several people tell me to have a scan of my pancreas to check for an insulin secreting tumor since I don't fit the mold of someone who is at risk for type 2 diabetes. ANyone else have this done? I just don't know if I feel like putting up the fight with my docs to get the test run.... On the positive side, did start a support group in Wichita. We are meeting again on April 11th if anyone in this region is interested..

Eventhough I don't have answers to your questions, I have the SAME questions! I am about to take Procrit but am worried about the side effects and long term effects as well. What symptoms has it helped with specifically?

After thinking more and more about this, I actually wrote in to Oprah asking the producers to do a show on "chronic mysterious illnesses". I also wrote "the doctors" as well. Wonder if anyone else would be interested in sharing their story? Maybe they would do a show like that and put more education out there on POTS/NCS. Wouldn't that be WONDERFUL?? Just a thought. All you have to do is get on their website and send an e mail about your story idea. Not trying to promote these shows at all! Just trying to get the word out.

Thanks for posting this! I watched it last night when it re-aired and it brought me to tears. I could relate to him so much! Glad they did that show.

i'm just at the end of my rope. The next step is procrit injections but i'm just worried about the long term risks. My brain is in such a fog though that I don't have the energy to sit on the computer and try to do research on it... any words of wisdom would be helpful...

Hi everyone. I am very excited to announce that a couple of us are trying to start a local support group for those of us with POTS/NCS/Dysautonamia (whatever else is on our lists!) in the Ks region. I have e mailed people that are on the "meet others" list but wanted to post this for those that may be new to this site and/or have not yet joined the "meet others" program. If you are in this area (even if you don't live in Ks but live close and would be interested in traveling to a meeting every now and then, such as NE, MO, OK , etc..) I would love to hear from you! you can send me a personal message on here or e mail me at mrsdavidson8605@yahoo.com I am very excited about this. I feel like i've been swimming up stream forever, ALONE and at least this would help me to be able to identify with others locally.. take care everyone! Rachel

Joint Hypermobility... not sure why I put that.. brain fog I guess.. sorry.

Haven't been on here lately. Things are about the same except my muscle aches are so much worse now. I saw Dr. Grubb and he confirmed what Bev said that I have JHM... I was okay with that until he started to tell me that I may be dealing with this for a long time, as opposed to what I was told before about the 2-5year turn around... so i'm dealing with that. He put me on provigil for the tiredness. Haven't noticed a HUGE difference but have had a bit more energy. Maybe the dose needs to be more... he said that was possible. My other option is the procrit injections now. I'm nervous about the risks and also the big issue that we don't have $10,000 a year.. but if it will make me feel better I think my husband would sell his organs! lol I'm just frustrated, tired (literally and figuratively).. I try to take one day at a time bc the big picture is way too overwhelming. Hope everyone is doing okay..

I am so sorry about your daughter. I sit here and honestly cannot find words that I think would be comforting to you bc i've heard it myself. I have POTS with Joint Hypermobility. The muscle aches have just started for me so I know how she feels about being in pain. And I really went "u huh" with you when you were writing about the fact that others just don't get it bc we don't have a "physical" feature about our disease that pops out at others... I have been to see Dr. Grubb twice now. I will be honest and say there isn't a cure (you probably know that by now) but that at least there are a few Drs who are continuing to research and try different things. Don't give up! As hard as it is, we are all here for eachother. I wish we could all be together in one room for one GIANT hug!!! wouldn't that be nice??

I have an appointment to see Dr. Grubb on Feb 16th. My husband and I will be flying out of Wichita to Columbus, where my sister lives. We'll then drive the 2 hours to Toledo. That in and of itself is scaring me. I haven't flown since '06 and that was before I was dx with POTS. Any suggestions other than plenty of water and salt? I guess my other issue is I feel like i'm getting worse and i've gone in circles for 2 years now. I know to some people that is not a long time, but i'm to the point that I can't remember what it is like to feel healthy anymore. It's so frustrating. I just feel like maybe we're wasting our money flying up there again. I know Dr. Grubb is kinda the guru guy but has anyone else had helpful experiences at other places? I thought about going to the Cleaveland Clinic but just wasn't sure if they would be much more help. Thanks for letting me vent!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! p.s. oh i almost forgot!! Anyone by chance going to be there that day???? I always ask!!!

Hi, You might do a search on this bc I have posted a lot on here about this and I know Sandy has as well. I have high insulin levels and have recently been diagnosed with Reactive Hyperglycemia (also Hyperinsulinemia). Some drugs that help for this are Metformin, Avandia, etc. but these drugs have not helped my insulin levels. I was told the only real solution is diet. Hope this info helps.

I just have to post something. I know we are all struggling, and i'm just greatful to have all of you who TRULY understand what really goes on.. With that said, I am just really at the end of my rope. (although I say that, and somehow, more "rope" keeps appearing). My illness is affecting my marriage, and my relationship with my friends.. or so called friends.. I had a friend send me a message telling me that I neeeded to quit "wollowing in my own self pitty" and "stop taking POTS as a negative thing" after I made a comment about being tired of being sick. I know it sounds petty, but it really hurt! I just don't understand people I think they look at us and think "gee, she's been sick for a long time now, shouldn't she be better? it MUST be in her head!!!" It's rediculous that I have to continually prove myself over and over, ON TOP of being sick. I know i'm preaching to the choir here, but it just makes my blood boil! Anyway, I called the doctor today because my blood sugar has been spiking high. This afternoon it was at 337, 2 hours after eating a healthy meal. Of course, nothing was done about it... grrr.. well I better get to bed. I'm sure this message will not make much sense when I read it in the morning, but I had to vent.. Praying for all of you

Hi, I know how you feel! I was an athelete before all this happened and I really miss working out. I have a recumbent stationary bike I use at home. I also have a YMCA membershp and I go swimming. I really can't do anything standing up so those are my two options. I haven't done a lot in about 2 weeks now bc i've been so sick. I find, that if i'm just completely worn out, exercising will not do me any good. It will just make things worse. I try to find those days where i'm tired (always) but not exhausted, then do as much as I feel is enough. Even if that's only 2 or 3 laps. Hope this helps! Hang in there

Just wanted to say I got my flu shot yesterday and I was pleasantly suprised to find today that it really hasn't made me any worse than I already am ... I will say that i BURNED bad! But i'm glad I got it so I can hopefully ward off any flu stuff this winter.. if you haven't done it already, look into it with your doc.. might be worth it!

what were your insulin levels? Wow that brazilnut/bread snack sounds good

Here are my lab results from my glucose tolerance test WITH insulin checks. My test ended up being 4 hours but they run anywhere from 2-5 hours, depending on what the doctor recoomends.... The reference range for insulin is 3.0-25.0 .... G stands for "glucose" ..... I stands for "insulin" Fasting levels: 91 (G) 5.9(I) Then I drank the sugar drink.... 1/2 hour: 124 (G) / 28.6(I)..... HIGH INSULIN 1 hour: 142 (G) / 70.6(I)..........VERY HIGH INSULIN 2 hour: 114 (G) / 39.5 (I).......... HIGH INSULIN 3 hour: 68 (G) / 5.1 (I).............. LOW GLUCOSE *NOTICE that the glucose levels are pretty normal, with 142 being slightly high and 68 being a bit low... but look at the insulin levels!!! That's what is out of control.. that's why I have the adrenal surges after I eat, then crash and everything goes low.. Highs and lows day and night!!! Hopefully the Avandia will begin to help with this problem

HA, yes if it would get us anywhere on earth I would gladly welcome a rear kicking to the doctor, but I think we would have a lot of work on our hands, kicking a lot of rears!!! lol Thanks for the laugh though..that's the only way to get through this!!!

Well my glucose levels are pretty normal too.. that's not the problem. My insulin is HIGH after I eat meals, which results in the adrenal surges, and crashes... I went back to my PCP yesterday and he still thinks this is what is causing my symptoms and wants me to try the Avandia for another week or so to see if I see any improvement. All my previous labs showed NORMAL glucose results; even fasting. It's the INSULIN that is not right. I didn't find this out until I had my doctor order a 3 hour glucose tolereance test WITH insulin levels checked every hour for 4 hours. That's when they found that my insulin was too high. I think i'm going to just work with my PCP for now. It's really hard to get into see a specialist and the endo I was seeing moved out of the country so I got stuck with the quack I have now. EVerytime I go into his office he seems annoyed by me and I really don't have time for that kind of attitude!!!! Thanks for the reply.

I tried Effexor. It did absolutely nothing for me, except zoned me out.. although, I didn't have any side effects that you're talking about...

Hi, No he said the test results were "fine". He said that my highest level of 70.6 at 2 hours was "fine" when the range was 3-23 or so.. He said "most women your age have levels like this and they are perfectly fine". His bed side manner was terrible.. I went back to my PCP today, and he was still positive that they're too high and wants me to continue to try Avandia, eventhough i've had some side effects from it too.. my PCP thinks I may have had an alergic reaction to Metformin but he's not ruling that drug out, just wants me to take AVandia for a while. He said it could take 6-8 weeks to see improvement!!! that's a lifetime!!!! Anyway, thanks for all the positive words, everyone!

Thanks so much! That is EXACTLY how I felt today... ugh... so frustrating. I feel like I don't even know what to say to my doc tomorrow!!! grr..... oh well gotta keep goin.

Well I had the appointment with the endo today, which I kinda knew wasn't going to go very well bc this guy is a total JERK!!!!! I brought all my stuff in, was ready to go, and he basically blew me off. Told me my insulin levels were FINE and, in so many words, said my PCP was totally wrong in diagnosing me with hyperinsulinemia... I WAS FURIOUS!! of course, I just cried afterwards, and that got me no where, except a headache and dizziness... So i'm going BACK to my pcp tomorrow. Why? I really don't know. I feel so helpless. I know everyone here has these same feelings it's just so frustrating when you think you might have a lead then they yank it out from under you... oh well. My motto is if the doc is going to be that way, then I write them off... if I don't i'll lose my mind!!!! Thanks for all the thoughts and prayers for the appointment. Gotta keep putting one step forward, eventhough, honestly I don't feel like it anymore

Have you had a glucose tolerance test WITH insulin levels checked? I've had the exact same issues and, luckily, Sandy tipped me off to getting this test done, and SURE ENOUGH, my insulin levels are 3 timew what they should be... just a suggestion... seems a lot of us have a lot of the same symptoms and it might be worth looking into...