arizona girl

I was always very tiny for my age and had presyncope episodes starting in grade school.

When I really flared up in my early 20's though I dropped down to 96 pounds and looked anoerexic, I eat though. Then they put me on dexemethsone and I gained 25 in months. I've always wondered in the dex contributed to the pcos/metabolic syndrome or if I always had the high insulin, and was like putting gas on a fire. So I'm up to 150 now. Though I do loose weight when I'm on glucophage. I'm only 5'2 so that's a lot of weight for me and it's not what I'm eating, as I don't eat much, I get full so fast. I joke you always get two meals for the price of one with me.

I've come across a few articles that talk about the high insulin being linked to the autonomic dysfunction. Any other shorties who've gained or have pcos or metabolic syndrome?

mr dr said i have to get it done at the hospital and my insurance has a $5000 dollar deductible... so good chance i will be paying several thousand out of pocket????

Mr. dr. may be wrong, call your insurance and ask them first, they may know who does it outside of the hospital. Yes, that's extra effort on your part, but it may save you a whole lot of money. Let your doctor know how much it will cost you this way, so maybe he/she can find a cheaper way to do it.

From my own experience this test does not have to be done in a hospital setting. But hey, if you don't want to challenge the doctor, then for sure it's going to cost you.

I agree see about your insurance. Your hospital deductible should only kick in if you have it done at a hospital. Mine was just done at the cardiac center where my doctor is. I didn't have to pay anything out of pocket at all. See if you can find a cardiac center in your area, that's set up to do there own testing.

They also did a 24 halter (heart rate), echo, stress echo, cartoid ultra sound, renal ultra sound. My echo and stress showed some dysfunction, as did the 24 hour holter. You might want to consider a full work up. Of course, what you pay does really depend on your insurance. Even if you do have to meet $5,000 before they pay for anything, by going through your insurance they will get the negotiated discount rate that they contract out with their providers. So stay in-network if you can.

Jana, in addition to outright fainting I also get what you describe with just suddenly falling. It feels awful. I just suddenly feel like I have no muscle control, like I am made of jell-o, and down I go. I read somewhere about this loss of posture, but as usual I have read so much I can't rember where I read it. Do you get a jell-o like feeling when that happens?

Suzy

Hi guys, this is so interesting. Since I was a kid I would get episodes where I'd get queasy, light headed, pale, clamy, ringing stuffed ears, heart pounding, and things would look orangey, then I would slowly fall to the ground and not be able to get back up, I'd be crawling around kissing the dirt, don't think I ever totally passed out. Then it would pass and I'd be fine again. Sometimes years would go in between the episodes. So fast forward...

to my recent TTT test finally, stand there with hypertension and tachy for 20 minutes, then nitro, then BP starts to drop, heart rate shoots way up, still standing, then they say we can't get a BP on her, then all my lovely episodes symptoms hit me and then I collapse and pass out. Which I didn't realize I had when they put me down. So by the time I collapse I pretty much have no blood pressure and it happens very suddenly.

So it's seems on a daily basis I get the orthostatic HYPERtension and tachy and then something happens once in a while, or more often if I wasn't so good at avoiding it, I get the pre-syncope, that if I don't get off my feet would be outright syncope.

I get the jell-o thing, I always called it rubbery legs, like you go to take a step and your leg turns into bendy rubber, like you don't have any bones in your legs.

Could be a medication fighting against you maybe

I got mine done at Chandler Regional Hospital. I went through 2 cardiologists and my 2nd scheduled it and about 15 mnutes into it he looked at the tech and said POTS....I had no idea what he was talking about, or that he was talking about me for that matter...brain fog had already set in haha....I was put on Topiramate for supposed migraines by my neuro and now trying Bystolic for POTS symptoms from my cardio

Actually not to far from chandler regional, south east of the ocotillo area. I was wondering if bystolic might work better for me. I've been on the increased dosage of inderal for 6 wks, ever since my tilt table was done. I'm still struggling with supine hypotension and standing hypertension, heart rate is getting as high, but is still hitting the lows when I'm sleeping. Love to know who your cardios were.

Do you know how to pm yet? (private message someone on the forum)

Well this new topic one made it, so now I don't know what happened with the others

I've pm'd pots girl and replied to another post and they haven't posted yet? Anyone else having trouble?

I was jus recently diagnosed with POTS. I am having the same problem. I do not have much of an appetite at all, I pretty much pick at food but I am still gaining weight. I am on 2 medications and I did read on them and I know that some side effects are weight gain, but I keep reading on here that most people with POTS have a problem trying to gain weight!

Could be a medication fighting against you maybe

Hi another arizonan, there are a few of us here, so your not alone in arizona. Welcome!! A long time a go, they put me on dexamethazone (steriod) because they thought I had lupus. I too gained a ton, and I ate like a bird. Having first dropping down to 96 then gaining to 156 in months, I knew it wasn't what I was eating. Having been both thin and heavy, I believe people when they say they don't know why they have put on the pounds. For sure medications can do it, sometimes your hormones aren't right. I turned out to have PCOS/hyperinsulinemia. Steriods were like spraying gasoline on a hot fire. So what meds did they put you on and why?

Where here did you get your tilt table done? How did you get to the point that they decided you should have one? It's hard to find the right doctors here in arizona.

Hi, just turned 52. I also remember pre-sycope symptoms and dizzy spells back into grade school. They always passed fast, so I never said anything as a kid. Me mom had toxemia with me. After looking at the list of causes I've had car accidents, inactive (supposedly) thyroid/adrenal nodules, mild left diastolic heart dysfunction, high insulin, endometriosis & PCOS and used to have a positive ANA. So any or all of the above???? I guess at one point, I would have fit into the young womens' group, but it doesn't appear I ever aged out of it It would have been lovely if I had though.

Right now it doesn't feel like it will ever go away I am trying to be hopeful now that I had a recent positive TTT, that I will find something that helps. I suspected I had this when I found this sight about 4 years ago researching that adrenal nodule. There used to be a long list of symptoms here, and most of them described what happens to me when I get what, I now know is syncope. I found Dr. Yan Go listed at UCLA, and she is the one who told me to do the poor man's tilt at home for 2 months. After doing this it became obvious, I had no idea my BP's and HR were doing what they were doing, until then. I think when you've had your heart doing that your whole life, you don't know the difference, you just know you have a lot of pain and fatigue and it's hard to do things and some things make you feel really sick. Without realizing it you become very good at compensating.

Yes, I am the Queen of compensating and avoidance!!!

I don't know about the rest of you 40/50 something's but I don't feel like an oldie, moldie, at all. Maybe because I wasn't able to have kids, I missed all those rights of passage, so I still feel very young at heart. Not to say the body doesn't feel oldie moldie a lot, but it's been feeling that way most of my life, so I don't connect it with getting older.

Really I do hope we all will improve some day, some day soon, would be real nice!!!

I went to my dr and he did a poor mans tilt table test for me. Laying down my blood pressure was 98/68 and my heart rate was in the 70ths. I stand up my blood pressure goes up to 140/something and my heart rate to 110, but then starts droping fairly fast. My dr said this doesn't make sense for dysautonomia for both increasing. He told me to go to acupuncturist now that he can't figure out whats wrong with me. Does anyone have any suggestions for me ??

Suggestion 1:

That's not true, there are several types where both the heart rate and the BP go up. Dysautonomia is the name for the group of conditions that cause autonomic dysfunction. Pots is just the heart rate increasing at least 30 points on tilt. Orthostatic Hypotension is when it drops after standing. They are separate autonomic dysfunctions that sometimes happen together. You don't need the hypotension to have Pots. Though 140 is not really that high. Heart rate 110 could be pots. Drops to what? You need to get a copy of the report. So you can look at the numbers yourself.

Suggestion 2:

Go buy a blood pressure cuff and do the poor man's test yourself. That's what my doc at UCLA had me do. After three months it was obvious there was a pattern. Take it as soon as you wake up before you move around, then 1 minute after standing up, then at 5 and 10 minutes. Make a log and keep track of date, time, position, HR and BP. If you see an abnormal pattern then you have your evidence. You could also check after you've been on your feet longer, mine tends to go higher the longer I'm on my feet, especially if I'm not moving. Also check when you think your symptomatic. Note the symptoms and document your vitals.

Suggestion 3: Get a proper tilt table test, once you have your evidence.

I have pots with standing hypertension, hypotension lying down, with slow heart rate, syncope, caused by standing hypertension and tachy, which shoots up and then suddenly drops(hypotension). It took about 30 minutes for that to happen on tilt table. A proper tilt table is the test of choice.

Suggestion 4:

May be time for a new doc? Find one who will run the right tests.

Hope this helps!

see i am bendy but so is my mom. but she has the vascular one.. i dont know how it works but she has had her colon, gallbladder and ovaries removed. all of her organs seem to be giving out.. now its her bladder she is having trouble with and they think she has crohns. so i am confused but if i do have the vascular kind atleast i would know what cause my POTS . i hope you get the answers you want! and thanks tons

If your mom has the vascular one then you need to be tested if you haven't already. The vascular one can cause sudden death and needs to be watched closely. It also is very genetic and passed on to at least 50% of offspring. So your odds of having it are very high, if that is what she has. There can also be some crossover between the hypermobile types and vascular. I hope you go and rule this in or out, and you should do it soon. Not dealing with this one will only make it worse, there is so much they can do with prevention. I sure hope you don't have it. I hope I don't have it, but if I do then I can put a game plan together to deal with it.

HYPER-tensive POTS is usually Hyperadrenergic POTS. You'll have better luck looking under that. I also go hypertensive when upright and even further when my arms are above my head. I have many grey-outs, but have not yet fainted. My BB was stopped after 12noon due to nightly bradycardia. My HR without meds (holter monitor results) is in the low 40's-50's, so the docs did not want it going lower on the BB. I also go hypotensive when lying down, usually 90/50.

One thing to watch for with "our" kind of POTS is MCAD (Mast Cell Activation Disorder) which makes BBs a BIG No-no! 50% of Hyperadrenergic POTS patients may also have this. If you have flushing or hives or difficulty breathing on the BB, then you probably don't want to take it, or greatly reduce your dose. I find that I am hyper-responsive to BBs and 10-20mg of Propranolol will do wonders for me.

If you can't find more info by searching that, PM me.

Jennifer

Thank you for the info. I think your right that I may have the hyperadrenergic type, that or eds vascular, which I'm waiting on the results for. I was getting low readings before meds, and that still is happening. Atenonol was making me real hypotensive at night, so I was put on short acting propanonol 25 mg. It bought my heart rate down but not my BP. So my new doc change me to 60mg XR propan. It's only been a month, BP is better, not such great swings, but still getting supine hypo and standing BP pushing through at times. I get red when I'm hot or embarrased, but that's it no hives, or flushing. Though a psuedophede does get rid of my headaches. thanks again for the input! m

Hi Arizona Girl,

I think Suzy is already sending you an email, but there is a group of about 6 of us in central Arizona that are trying to form a support group. Shoot me a personal message (click on my 'potsgirl' name in upper left-hand corner) and we can talk more...Great to have another Arizonan! I'm from Tucson...

potsgirl

Hi potsgirl,

Yes, suzy and I have been pming. However pm is down today so I can't, pm you. She does have an appt coming up in scottsdale in May, maybe we could pull something together then. It would be great to start a group here. I'm in south chandler. Thanks for contacting me

Hey dani

I'm in the chandler area and am waiting on test results to see if I have EDS Vascular. It's just a blood draw. I saw a local geneticist in phoenix named Theresa Grebe, MD.

Don't know what type of insurance you have, you may need a referral to go to one. A rheumatologist may also be able to refer you.

I'm not that bendy, but my colon ruptured and I have family members who are hypermobile. You don't have to be bendy with the vascular type. Have you had any trouble with your veins and arteries and or digestive track? Most people who are bendy have the main one hypermobile type. Hope this helps, I'd go check it out if I was hypermobile.

Hi AZgirl,

I can't tell you for sure what med will help you, becuase I don't do them very well! But I can tell you if you are feeling that way on inderal (that is a beta blocker right?) that you might want to take your heart rate when you are laying down. When I was put on a beta blocker even though I was having severe tachycardia, when I laid down my heart rate was 30 35 and 40! Had heart doctors think I was in heart failure! But it made me feel awful. Just a thought.

Also I really get what you are saying about trying to stay upbeat...I learned to try to not "look" sick, because I was always told it was anxiety. I get severe virtigo sometimes, and can't stand without swaying like I am drunk, and then I would be accused of taking street drugs!! It's funny, because I wanted the doctors to believe that I was sick, but at the same time I was being told all my symptoms were anxiety, or the one I liked the best was I think you are just a little dramatic about your symptoms! And that was when I was trying hard NOT to look like something was really wrong.

Suzy

Hey Suzy,

Sent you an e-mail, I agree can't the personal names and contacts off the board.

You made me laugh, when I read the "your dramatic". I've heard that one! I tend to get keyed up when I'm talking sometimes, now I know it's my ANS system going into fight and flight mode.

My heart rate even before the meds was going from the 50's (occasionally below that) into the 100's every time a changed positions. The holter showed in the 40's after going on the inderal. My echo test actually did show I have left ventricular dystolic dysfunction, which can be the start of heart failure. Because my ejection fraction is still normal, it isn't early heart failure yet, but they will have to watch it. I really haven't had a chance to ask the doc if it's contributing to pots and syncope yet. Oh gosh I've got to get going, typing these things uses up time fast. I'll check in when I get back.

I've tried searching the site, but I'm having trouble finding, you all. From what I've read from Dr. Grubb, it seems to be treated a bit differently. I'm having trouble finding what the difference is. The cardiac doc put me on 60XR mg of inderal, but I'm having more dizzyness now and it's more fatiguing. I'm also still having times where the hypertension pushes thru. Of course, my BP is still dropping under a 100 when I lay down. The swings aren't as bad as they were though.

I must say this version of pots seems a bit more managable then everyone who gets hypotensive right after they stand. When I get syncope, I get so sick as I'm collasping. Can't imagine how awful that feels, if it happened every day. My syncope's usually take a trigger, and I realize now, how good I've been at compensating and avoiding, without even realizing it. They gave me a least of things to avoid and that aggravate it. I'm reading the least going, yea, don't do that, have always avoid that. Read it to my husband last nite, hoping he'll better understand, what I've been going thru. I don't know about you all but, I don't really LOOK sick and I try to stay up beat, so people don't always realize and a lot of doc's think you have anxiety.

It's been a very long journey getting to diagnoses and treatment part, I'm so hopeful, I can over come this.

I went to vandy about a year and a half ago. I had a long wait to. Then they had a cancellation and moved my appt up by months. I saw Dr. Raj. He deals with the blood volume issues and salt loading. I had a very bad car accident 2 weeks before my appointment which may have effected the outcomes. The testing they did do mainly showed orthostatic hypertension and they were looking for low, so didn't even address it. Most of my tests were done reclining which is my best position, so I wasn't symptomatic like I am in arizona. He went by my history and recommended salt loading and propranol. The salt really hasn't helped me, propranol lowered my heart rate but not the BP.

I asked about tilt table and he didn't give me one. Big mistake! Insist on one and make sure it is scheduled before you get there.

Through paying attention I realized I was only hypertensive and tachy when upright and that I was having supine hypotension. Fast forward my colon ruptures in august, they don't know why. I avoid emergency surgery and in the hospital for 4 days on heavy antibiotics. I was hypotensive the entire stay. The surgeon's like you need to find out why all these abnormal things keep happening, before we consider any elective surgery. He referred me to rheumatologist, they refer me to cardiac specialist because the hypertension was so bad and I google orthostatic hypertension and end up on this web site, reading about EDS vascular and colon ruptures, which led me to the gene doctor for testing. I'm waiting on those results.

The cardiac doc orders a TTT on me because I was so bad when he checked me. I pass out from a hypertensive spike and crash that happened in 5-10 seconds. He also finds some diastolic dysfunction. Now we are addressing it with compression, higher dose pro, and rehab. To soon to tell if it's helping, I'm dizzier with med change.

If I'd had that tilt table done sooner, maybe it wouldn't have taken so long to start really dealing with this. I will be updating Dr. Raj this week, to get his take on it, because I'm a bit atypical. I do have syncope though and pots, thats for sure. The cause and/or what type remain to be seen.

The only follow-up with Vandy was because I called them. Once you have an appointment you can join their Vandy health online and they will correspond with you that way. I would ask them exactly what tests they will do. Have you doctor request a Tilt table if it's not included before you get there.

Good luck with all this

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.

I wasn't heavy either when I first got sick, dropped down to 96 pounds. I didn't gain weight until they put me on dexamethsone they thought I had a rheumatoid condition. There are a whole bunch of hyperinsulinemia/pcos skinny women out there. We are harder to diagnosis because when your thin they don't think of it. A GTT usually only looks at glucose, they have to add the insulin tt if they want to see what happens between the two of them. And they should look at the two of them because they always work together. If your insulin was out of range during any of the time slots, you have some sort of hyperinsulinemia. They are finding that something is causing the body to produce to much insulin or not be able to utilize it (resistance). An insulinoma can be one cause. I got the impression they rule it out if you don't get hypoglycemic. Though like you I think you might be able to have one (insulinoma) without being hypo. One think against the fasting insulin test (just one blood draw) is that if you are converting to diabetes it will drop down when that is happening.

I forgot to they also did a 3 day continous glucose test on me. They punched this little bug like monitor into my belly. My levels were mostly normal, except they were lower during the day and higher at night, opposite of what it should do.

I'm still learning about the syncope and pots stuff. But because I've been dealing with the pcos for about ten years I'm pretty up on the current research on high insulin. When I searched syncope and insulin. There is some research showing the insulin may be contributing to the syncope. I've always thought all my different symptoms were connected some how. The research is just starting to get there.

Somewhere along the line I realized that just because the docs don't know what to test for, or there aren't any tests yet, doesn't mean something isn't wrong. Though I've gotten tired of doing so, and wanted to give up, I've trusted myself that something was wrong, and I've found specialist that could help me figure it out. So, don't take it's normal for an answer, keep pushing to you find some one who can help you. You know yourself and you know if something isn't right. Love to hear what they find out this time.

Hi!

I'm from Arizona too! I have all over body pain constantly 24 hours a day, but I can't take anything for it. Some days I can't walk for the pain, and when I get up I look like a 80 year old! I have migrains too. I wish I could say I have good advice, but I can say I sypathise. The things I do, do that help are I stretch a lot to try and relax my muscles, I listen to relaxing music to try and get my mind off of it, and I try not to over do it, which sadly it's only 9:30, and I have already gone over that limit. I hope you find something that will help you...Also...potsgirl has started up a group here in Arizona so we can meet. We haven't gotten the first date down yet, so if you are interested here is the post. http://dinet.ipbhost.com/index.php?showtop...t+group+arizona I hope you get feeling better real soon!

Suzy

Well I live in the south chandler area, about an hour out from tucson. What part of az you in? If there are more arizonan's it would be great to have a support group here.

What do you do for doctor's. Though I may have a doc here now that I can work with, I was told there weren't any Pots doctor's in arizona by a neurologist and mayo.

There are days I feel 80, my silver lining is the PCOS I have makes me look young for my age. I don't get to many headaches, but I did with the exercise yesterday. The muscle soreness and fatigue get to me more. I'm not working but I'm not house bound. It can be a bit lonely during the week when everyone's working. I don't have kids, so I don't really fit into the mom's groups or the retired ladies groups. I've lived here since 72, so I do have friends and family, just nobody close to where I now live during the week. Thanks for your thoughts. I'm a search for solutions, so if I do finds something that helps I'll let you know.

Been there, done that! My headache spikes with any exertion. Look under a post about "pilates: my doctor is trying to kill me..."

The ONLY drug that has helped is one I don't recommend: Klonopin. Very addictive.

Actually, the more you do, the better it gets, just anticipate feeling like poo for several days after. I don't hurt all over like I did then, but it has been 4 months.

Thanks for responding. A pain doc put me on a klonopin patch, then I got adhesive welts, so switched me to the pills. Oh my god it was awful. My body just kept wanting more and more and my hypertension got worse and worse. Getting off it was a nightmare. I'll never take that again, it took months to recover. I was never told it could be addictive.

I know it probably doesn't exist, but a pain medication that works and doesn't mess with your digestive track, BP and heart rate would be great.

I will continue to give the rehab a chance, and hope the pain gets better. I'm glad that it is finally helping you. Already feel like poo, not looking forward to having more of it.

How long before you noticed it subsiding?

Hey kansas, I've been dealing with high insulin for years now. I too had Glucose TT w an Insulin TT side by side. My glucose responded perfectly, my insulin levels were grossly abnormal. This test was done after a fertility work up after a miscarriage. They found cysts all over my ovaries. So I do have Polycystic ovary syndrome PCOS. I like to call it female metabolic syndrome. Wasn't able to have children. It's been 10 years for me and I've yet to convert to diabetes.

However they did put me on glucophage and it has helped control the insulin some, but you can have digestive issues with it. You don't have to have diabetes or hypoglycemia to have high insulin. You can just be insulin resistant. If your really insulin resistant a simple fasting insulin can show it. People always confuse this test with a fasting glucose. Most docs won't order it unless you ask.

It is interesting they are putting you in the hosptial to see if you have an insulinoma. I've often wondered if I have one. I have inactive thyroid and an adrenal nodules, but they have not been able to find an insulinomia during MRI or CT.

So how does that test work? What do they do if it's positive?

As I've been researching all this dysautonomia stuff, I have come across research saying insulin can be a factor in the symptoms. Any one else know anything more?

They just started me on cardiac rehab yesterday. I got a headache during it. I had such bad pain last nite I couldn't sleep. It feels like that lactic acidy pain you get in your muscles after a work out.

I had it from head to toe, just throbbing away.

I don't know what to take for it. So many pain meds mess with your digestion and cause other problems.

So what's working for you all?

Hi you all, been reading here for a while thought you might help me understand better what to do.

I mainly have orthostatic hypertension and tachy, when I lay down I sometimes get hypotensive. I now know that I also get episodes of syncope or presyncope. Don't know what kind yet.

When they did my tilt table. I hung out there for a while with hypertension and tachy the whole time. Very painful test with many muscle spasm. Right before I passed out, my blood pressure and heart shot up even higher and then plumetted in about 5-10 seconds. They were like we can't get a blood pressure on her, then my legs gave out, I got real bad nausea and my ears plugged and I passed out. These symptoms were the similar to what has been happening to me over the years. The doctor said that if he hadn't stopped I would have gone to zero and my heart would have stopped.

My echo also showed some left ventricular diastolic dysfunction relaxation phase, but my ejection fraction was still normal.

My doc ordered compression stockings and switched me to 60 mg xr propranonol, and cardiac rehab. The med's dropped everything but I'm getting dizzy easier and I'm still getting push thru hypertension, when I'm up to long, or even when I'm talking of all things, and a lot of pain.

Anybody else like me? How are you managing it?