mrsdavidson8605

I am on facebook way too much and wanted to add some of you that have accounts so we can talk on there as well. Let me know if you do and I'll add you.

Interesting discussion. I live in Kansas (ha obviously from the name).. one of the worst areas to live for POTS. Last visit I had with dr. Grubb he said that San Diego would be ideal for POTS people. How different is that area from Sacramento? I know San Fransisco tends to not be quite as warm. My husband and I have serioiusly considered moving to CA but the economy is just not in our favor right now. So i'm waiting to stick it out here in good ol KS for another scortching summer! (already 85 and humid today ugh)..

ugh this is so annoying to me that the general idea is that people with "POTS" are teenagers who need a beta blocker and are fine after a few years! OMG that is the total opposite of me and several others on here!!! GRRRRR!!!! I get mad just thinking about it. I think a lot of these doctors are not out for the best interest of the patients, but out to get their name out there in hopes of being the one who "finds" the cure if ya know what i mean..

Well I made it exactly 48 hours with no food and had been stuck 28 times when they decided to stop the test, before finding anything significant. They had to stop bc my blood volume was too low to get anymore blood! So now I wait another week before I can see the doc again. GRRRR! she is having me do a 24 hour urine to look at Catecholamine levels.. i've read some about this, but can someone explain it more to me? too weak to do a search. I'm really discouraged and of course now my symptoms are RAGING out of control just due to the stress on my body. Have to go get more blood drawn today, not sure WHERE they're going to get it from. I look like a drug user! I have track marks from so many sticks.. ugh.. it's hard to keep moving forward after being put through the ringer just to go home sick again..

Tomorrow I go into the hospital for the 72 hour fast to check for the insulin secreting tumor on the pancreas. I hate fasting. I get sick just fasting over night then having my blood drawn. anyone else feel that way? Ugh. Well I kind of hope they find something and can make me feel somewhat better. I actually came out of a flare up yesterday so I am feeling a bit better, which just totally baffles me! I don't get how I can be deathly sick for 3 or 4 weeks then wake up and it's gone.. geeze. Anyway it's been a stressful week. Had to take my 22 month old in for a catheter today (frequent UTI's). But everything turned out fine! My husband said he would go nuts if he had both of us in the hospital at the same time. Poor guy. He's a police officer so he's trying to adjust his work schedule around all this... anyway i'm rambling on. I will let everyone know how it goes.. have a good week and send a hamburger my way!

HI there, I'll give you a gentle hug and tell you that I know how you feel LITERALLY! I think the battle you described within yourself is just what everyone with POTS goes through, no matter what the degree. Personally, I have gotten worse in the past 2 years. But it's crazy because I will have bad flare ups then feel much better the next day. I can go several weeks feeling horrible and then feel good for a few days to a week. It is really mentally draining... I know how you feel about church. I started sitting down during the service for the same reasons (standing and trying to sing, then sitting, standing etc! WOW!!) People look but you know what, I got tired of worrying about what people thought (most have already made their assumption about my illness a long time before now) and I just focus on being there and worshiping God. For me, that is where I draw my strength. I hope something that has been said will give you peace. Just take it one day at a time. If that is too much, take it a minute at a time

I agree there needs to be more awareness. I've written several popular talk shows in the last year hoping for something, but never got an answer. I thought that the new show "the doctors" might be a good one for all of us to write in to. Seems like there needs to be more media coverage on it. EVeryone is so flooded with TV now days that would probably be a good avenue. Again though, strength in numbers. I'm sure if EVERYONE from this website wrote in to Oprah or the Doctors, they might consider doing a show, but just one person like me they are not going to listen to. I am willing to help out in whatever way I can! Keep your chin up!

I have trouble getting my thoughts together which is frustrating bc I pause in conversations frequently now. Also my husband is a very loud phone talker so I find myself asking him to lower his voice on the phone all the time bc it makes my symptoms worse..

sorry to hear about the palpitations! They drive me nuts too! And by the time I get to the ER, they have usually subsided to where no one catches them! SO FRUSTRATING! hang in there!

Sorry to hear that you're going to have to climb this mountain! My husband and I were recently in a similar position, although not moving as far, we ended up not moving bc I just couldn't do it. As for the beta blockers I don't have much advice bc they seem to not help me out. Is there anyway you could fly to your destination? From my experience flying and driving cross country, flying is SO Much better for me. Not true for everyone I know, but for me I can handle the symptoms better when it's a short amount of time like that. Just a thought. I will be praying for you. Do you mind me asking where you're moving to? Maybe the climate will be better there!!!! I live in Ks, probably the WORST climate for POTS people! Take care!

I agree with the waiting thing. We waited 3 hours past our appointment time, but were in with Dr. Grubb for over an hour! It's worth the wait (although there are no magic cures to this).. good luck!

Glad to hear that! Sounds so encouraging that you are able to do those things again! Can I ask how debilated you are from POTS? The reason why I ask is i'm kinda in the middle where i'm not bed ridden but i'm also not able to leave the house more than a few times a week. Sometimes, when I am really sick, I think a power wheelchair would be wonderful, but I also go back to the what will others think bc I live in a very small town and I know people would be talking about why one day I would be using the wheelchair and the next I could be riding my bike. that is the most frustrating part for me! Your story is very encouraging! I may think of at least getting a manual wheelchair for the house when i'm really bad.

I think the important thing to do is stay positive, even when stuff like this comes up and doesn't look very promising for a cure/or is a long way off. Even if we wonder if it will actually do anything for our health, we can be positive in the thinking that maybe somehow a better monitoring system can lead to better medical help in the future. That's tough though cuz i'm livin in the moment myself!

Just wondering what MCAD is and what the symptoms are? Also I saw some people take benadryl for their symptoms and was wondering how that helps. Thanks

hmm this is another puzzle to me.. I have noticed that on the nights where I get less than 8 hours (6-7) I actually feel a tad better than the days when I sleep 9 or more.. idk or maybe i'm so sick at this point that when i'm that tired my brain just turns it off!!!!! I actually was wondering if anyone feels better when they sleep less? With me I have some unanswered questions about my insulin and such and i'm wondering if that has to do with it.. who knows, right??!! I wish there was a giant ? mark on the keyboard to express how i feel!

Unfortunately, my endo only allowed me a 2 hr GTT, without catching how the insulin levels were changing. I had a peculiar "flat" curve. After 1 hr, glucose went up about 10 points, then after two hours, it went below what it had started at?! All the while the range of my glucose was always the "normal" kind of fasting range. What was very interesting to me, but not to anyone else, was at the 2 hour mark, I became noticeably sleepy and tired. The glucose reading was like 78, or something fine. Doctor looks and says, goody, no diabetes....end of discussion. I am seeing him again in 2 months and I WILL get answers. Please let me know how you make out, will you? P.S. Do you have any other endocrine issues, like thyroid for instance? I have had thyroid cancer, and I do believe my endocrine system is below average in its functioning. No I don't have any other endocrine issues. At one point they were testing me for cushings syndrome. Can't even remember why now (lol i've been through so much).. I would definately talk to the endo about the insulin thing. Strange that they didn't look at insulin during that test.

Wow my doc said she needed a level of 45. My lowest was 49 but the machine didn't pick up more than 23 hours so I bet I could have had one lower. I would get a second opion on that if it's something you want to pursue. What is nesidioblastosis?

They did do a GTT but were specifically looking at insulin, however, they did get both insulin levels and glucose levels at a half hour, one hour, two hours, and three hours. I have already had the continuous glucose monitoring system that's what got me to this step. I don't understand it all completely, or really want to understand it all bc it drives me crazy trying to figure it all out I do appreciate the advice and I think it will be interesting to find out what the results are. I agree that we have to fight for ourselves. I continue to do this. It's been about 2 years now since all this started for me and sometimes I feel like i'm at day 1.

firewatcher, I know how you feel!! hang in there I've noticed that I will search and nothing will come of it and my doc will start getting annoyed, so I back off for a couple months then go back with something else. Keeps me sane and makes my doc think i'm sane too.. unfortunately i have to make him BELIEVE me...

future hope, have you had a 3 hour or longer Glucose Tolerance Test? That is the first step to see increases in insulin leves.. they're not so concerend with the glucose, although it is interesting to see that glucose levels will increase somewhat abnormally then crash if you have the over production of insulin. I am having the SAME problem. Wonder if anyone who knows how to do polls on here could start a poll about this??! VERY INTERESTING! We're not all the same but what if this is a major puzzle piece. Read my recent blogs. I'm going into the hospital this weekend to get a 72 hour test done to see if i do have the tumor on the pancreas. BUT I have had to fight for this test for 6 months. That's how long ago I found out I had the over production of insulin and I didn't fit the mold for someone who was at risk for type 2 diabetes, AND i keep losing weight. Talk to your endo and get a second opinion, if necessary... We have to find a cure!!!

p.s. I am not insulin resistant bc I have had the fasting insulin test. I did the 3 hour GTT test which showed the over production of insulin then after the 3 hours it was back to normal.

Broken Shell, did they ever find anything when you did your test? My doc said they would hope to catch something within the first 24 hours but if not, then they will "admit" me (I'll be there as outpatient to start with) and continue on up to 72 hours to see if they can see anything with the levels... just wondering if your levels ever got off? Doc said that if it is an insulinoma that it doesn't need food to trigger high levels of insulin (crazy huh!) so if that is the case, she is positive they will catch it.. I have bad luck though. I had the 3 day continual glucose monitoring test on last week and it only recorded 23 hours!!!!! instead of the 72 hours.. grr but she did find a glucose of 49. she said if she would have seen a 45 she wouldn't have to put me through this test, that she would have diagnosed it and moved on! I thought that they just did the scan of the pancreas to see the insulinoma but I guess not. I guess that they have to do the blood test??... did they have to stick you each time or did they put some sort of pic line in.. that's the thing i'm worried about. My adrenaline surges enough the way it is all day, I don't need to be stuck 100 times!!! AZ girl, The doc said if they do find that I have the insulinoma they will do surgery to remove it (i assume they will do an MRI at that point to locate it and see the size, etc). IF not, then she has other things to rule out. Cant remember exact terms but something about other tumors possibly causing it or a rare condition that also causes high insulin. I understand that it doesn't mean diabetes, in fact I am the total opposite of hyperinsulenimia or someone who is at risk for type 2 or even type 1. I am very tall and thin so the puzzle piece just doesn't fit. That's why she's concerned about the tumor bc i keep losing weight. I agree that I've read a lot about people blooging/other posts about insulin and things of that sort. Maybe they'll find something and I can be a case study! I think the doc was thinking that herself bc she told me how she got on here and read patient's blogs about the connection but that she didn't find any medical journals or research talking about a documented connection. So we'll see. I would say that it would be worth it for you to rule it out. The problem is that it's SO hard to get any docs to run any tests, or at least that's my experience!

Thanks, Suzy! Yah i'll be in the mood for a gigantic burger and fries when i get done

Well i went back today to the endo and she wants to put me in the hospital for 3 days fasting! I think i might die!!!!!! lol I know i won't but it's going to be tough. She said she's concerned I might have an insulin secreting tumor (like I suspected).. she actually stayed up late and researched POTS, I think she may have even read some of our blogs, bc she talked about patients blogging about blood sugar issues!!! So, see, this website is a blessing for SO MANY reasons! WE just have to keep fighting for ourselves. I just pray that there will be some sort of treatable answer in the near future! And I would suggest others get this stuff ruled out as well... thanks everyone, i'll keep you all posted when i'm out of the hospital and have had some food to eat!!!

I am about 6'0 or 6'1 and I used to weigh about 180lbs now i'm at about 160 so I definately fit the tall skinny type. I too get tired of people telling me that I need to gain weight or i'm too thin. Not like I can control it..