CharmedLinz

I was attacked by a hive as a child, and Docs were shocked that I didn't have too horrible a reaction and was told that such an event could lead to being allergic later on in life. Got stung several times since. Last summer I got stung right on top of my pinky toe of my left foot. Went out at night during a rain storm to check on our down-spout; we have a hive that lives in the top of the drain spout or rather in the canal thing that brings water from roof to the spout. anyway long story short, poor bee tried to save itself by using my sandal as a life raft, I didn't notice and got stung. I had feeling in 3 of my toes in that foot for 5 days!!! That was a first for my left foot in many many years. Didn't find out for 4 days that I hadn't gotten all of the stinger out, my Mom had to dig it out. After the 5 days I was feeling pretty positive, then it started hurting and itching for an additonal 3 weeks. I have a huge quarter sized "scar" darkening of skin there now. I never scarred before from over 50 stings. I called a bee keeper to ask and they said with Apitherapy you only leave the stinger in for 30 min to an hour. The fact it was in for several days is probably what caused the lingering problems and skin change. Love my bees!!!

Well before DX of POTS and Dysauto and before Florinef when they thought I had diabetes insipidus my outpout was anywhere from 6500 to 7800 in 24 hours. I drank a lot, but rarely that much, I put out more than I took in. I filled up 3 containers once. About 6 months into Florinef my drinking and peeing got less, I wasn't constantly thirsty. Now my outpout is between 3500 and 5000 and I usually don't take in that much. I'm guilty of not drinking enough now. However my urine has almost always been clear. In fact when I had my hysterectomy in June of 2011 my surgeon had told me how much to drink and I had to do Go-Litely, he said properly hydrated people deal better after surgery with everything. The first thing he told my Mom after surgery was that I was the first person in YEARS whose urine in the cath bag was CLEAR which is how it should be and how he knows if someone has hydrated correctly. When I woke up I got high praise for knowing how to hydrate correctly. Strange thing to be proud of I'm sure.

Quick and to the point ??? Fingers not working well, Mom had to go get me Dragon today, haven't installed yet. Just wondering if anybody has had a Doctor that has actually made the connection between the Hypothalamus being in control of the ANS and Endocrine System??? Both my Endocrine System and Autonomic System are really messed up and it seems logical to me to blame this on a malfunction of my Hypothalamus. Since the Hypothalamus controls both things in a trickle down effect. Every time I mention this to a Doc and the fact that I have had head trauma and birth trauma they just blow off the Endocrine part as being related at all.

Sure thing Sue, I will keep you updated. If the NIH thing happens at all I'm going to try for fall. We've had enough trips recently...well Phoenix next week. Will probably be going back to Phoenix in summer for some invasive tests. Hate to go in summer, but at least the hotels will be more reasonable and we can hide inside. I remembered one of the things the Hemo said was that I really need genetic testing, all my Docs have said that. We only have a pediatric geneticist here, who I've seen on a consult. Apparantly any genetic testing is pretty much impossible to get covered by any insurance. He also said he suspects Polymyositis, that's a new one that nobody has said to me yet.

Hi Sue, Well he said it would be submitted as entire work-up evaluation. Possibly in the Metabolic/Endocrine/Neuro group. I tried to look at their website a little last night and it's all very confusing. The only thing helpful I found was the group for rare diseases. But it says they stopped accepting new cases last July. So I'm really not sure how they do things there, it all looks seperate like you are saying, and you have to be a trial. The Hematologist said they could do the whole case just like Mayo or Cleveland does, the difference being that NIH won't look at insurance. Then after they figure things out they ask to use the info for research and possibly ask for more testing done for some of the trials. So I'm really not sure what would happen or how. Just hoping Phoenix can figure this out next week, or at least partially.

Hi All, No energy left, so this will be quick. Saw a great Hematologist today, about the last specialist I haven't seen. He's perplexed as well. He thinks my best shot after Phoenix next week will probably be to travel to the National Institute of Health for full evaluation there, as they are the only place that won't worry about my insurance. That's a very long way from New Mexico. Anybody have experiences there??? How do they work it there....inpatient, or clinics like Mayo, OR.... Thanks!!!

this was the first time I read the spoon theory and I love that article....thanks for posting. What I was going to say is that I tell most people that it's like living with a really bad case of the flu, a head cold, and a nasty stomach bug all at the same time. That usually makes them stop and think.

This is good to hear about the recorded BRADY. My Local Cardiologist has always said I couldn't have actual POTS because my HR is not always high. Watkins in Alabama took one look at my month long halter readings this past November as said......POTS, I don't care what your Doctor believes....this isn't normal. I did a month long halter monitor in September-October 2010, my local Cardiologist just said it was all normal. Before going to Alabama this past November I picked up everything from my local doc to take to Watkins as I knew he would want it. So I had this little paragraph that said my halter monitor was normal with heart rate from 41 to 135. That's NOT normal......so used my contact to get the actual recordings from the company that records the device. Got all 30 days worth of EKG outputs and took to Alabama. They recorded Brady at 41, Tachy at 135 and every where in between and several arythmias. Now I never did anything really during this month, no BB's and the most exercise was a slow stroll. I couldn't record during my worst times which is during and after showering. Alabama said the bad arrythmias weren't significant, just part of the MVP or little glitches. But the HR's of 41 to 135....NOT NORMAL The highest my HR has ever gone at home that I've recorded was 167. I'm sure it's been higher, but I didn't have my checker with me on a walk or in the shower. Stress test at the docs I've gone up in the 190's. The lowest HR I've recorded at home was 37. My Internist actually recorded a 32 when they had me lay down during an appt I went to, after having a bad episode where I had a temp of 92.3 degrees and a fever of 99.8 later the same day. So good to know that the BRADY stuff is being looked at too and not just dismissed.

Sue-- The cortef on me acts like a major stimulant, major coffee type rush but worse. They want me on 20mg a day, I'm able to do 10 right now. A pharmacist with a lot of expertise in Bio-Identical hormones had me try progesterone instead of cortef, as a rub in gel, I tried an 1/8th of the normal dose and almost wound up in the ER. She had me then try Prenenolone which turns into whatever hormone your body needs. I tolerated that better in a tiny dose so have stayed on that since it seems to help with the Cortef a little. Her explanation was that my body had been without cortisol for so long that it doesn't quite know what to do with it. My Estradiol had always tested extremely low, and my Progesterone had always tested non-existent. She said that what happens is that your body can't live without Cortisol, but it can live without Progesterone, so your body will actually turn progesterone directly into useable cortisol. It was a long process to get as bad as I am, and it's a long process to undo. My last AM cortisol draw was a 12 which is way better than a 1 or 4. My Internist will be happy when it's around 18-25 in the morning, as then I will have some room to play for it to drop when I'm stressed. I should have mentioned with all the Endocrine stuff that my reproductive parts were NOT spared in this either. When I started menstruation at age 12 things went haywire. I never had a regular cycle, usually anywhere from 20-60 days. Usually only bled for a day. Cramps that would get me close to passing out. Skipped an entire year when I was 16. Things went downhill with my cycles as my POTS got worse. My Estradiol had always tested lower than even menopausal. So I had a total complete Hysterectomy last June, 2011. I'm 30. My surgeon was even surprised to find my ovaries all shriveled up like this raisins with cysts on them and cysts in my tubes. Good thing I never wanted to kids...Someone would have to pay me massive amounts of money to pass this illness and everything that goes with it on to a kid. I wouldn't wish it on my worse enemy. We have other people in the family that have this besides me, so I know it must be in our gene pool. The surgeon said more than likely I never would have been able to conceive. He said it was early menopause and ovarian failure. His thoughts were autoimmune, pituitary, or endocrine failure. He was glad he had done the surgery, even though it had taken me a ton of convincing for everyone to beleive that I never wanted kids. He was really surprised at what he had found. Plus he found other stuff that he couldn't explain but was helpful to my GI doc. We have a heads up on more weird stuff. My abdomen was full of fibrotic tissue and I had adhesions on my appendix, cecum, sigmoid colon, and bladder. He had to cut down a lot of them. It's just another mysterious connective tissue or autoimmune thing because I had never had surgery or injury to cause adhesions or scar tissue.

Well I was a driver, for a living, before I had to quit working. There is nothing I like better than a road trip, so this has been particularly hard. I was the strange one growing up that wanted to be a truck driver, big rig, now my best friend has that profession and I've at least gotten to go with her a couple times. I have been under a strict no drive for the last couple years, and I obeyed especially in town because I feel like they may as well stick a drunk behind the wheel, my eyes don't focus fast anymore so traffic distortes things. As of last week, now my license will be turned into a NO DRIVING, and it's in my record, it's hard to swallow. I have some interesting things to add for this topic. When I drove for a living I always did better at night, my eyes tolerated darkness better than light, and I worked extremely long hours, sometimes 36 at a time. Unless I got dehydrated or ignored an ear infection I never had a problem. I have never tolerated flying well, neither does my Cousin with POTS. I discovered through trial that I tolerated a small engine plane and helicopters just fine. Taking off and landing is fine as well, as long as I can feel the plane moving I'm ok, I like turbulence, weird I know. I don't get sick as in vomiting or motion but as soon as we are up high and things are still my ears start acting up and I get dizzy, vertigo, and very light headed and limbs are hard to move. My Father who was a pilot believes that my body reacts badly to the high altitude not the flying itself, as I seem to only have reactions when the plane is at the 30,000 foot mark or whatever the height is when you reach max elevation. It's definitely not part of my anxiety because I'm completely calm when it happens. To go along with this I have another weird one. I grew up river rafting and kayaking, always on the water, moving fast water. Even on a speedboat a couple times. In 2006 on a road trip I decided to go whale watching off the coast of Boston. It was a freezing cold overcast day and I took my benadryl (same as dramamine basically) just to be safe. I was fine until we got out to where we found some whales and they shut off the boat. The water was very swelly but just big rolling swells not stormy really, and we had several whales very close that were showing off and making the boat rock as well. By this time everyone was sick, running to the bathroom. I had known better than to eat much that morning so I was ok. All the sudden I started feeling like I do on an airplane only worse, and my legs would not work and I was chilled to the bone. I went inside and sat and one of the boat attendants came to check on me, asked if I had taken dramamine. I told her my symptoms and she called over her boss who told me....Gosh you don't have just motion sickness you have actual sea sickness. Apparently Sea Legs isn't just a saying, it's a phenomenon that can affect some people and cause your blood pressure to not regulate and do all the other fun things we know POTS can do, until your body adjusts to the movement of the sea. It took 12 hours after that boat ride for me to stop shaking. I got no pics of the whales, I just stayed inside with my head down and legs up. I think it just confused my autonomic system more than it already was and my body couldn't figure out what to do. They had to help me walk off the boat. Had I known then about my POTS what I know now, I would have loved to know what my HR and BP were doing, and my temperature. I still do ok in a car but not like I used to. In 2010 we made the trip to Alabama from NM to see Dr. Watkins and we did it really fast, whole trip in 6 days, it was really tough. This year, we did it in 18 days. I could only stand about 6 hours in the car at a time. Plus things get so weird to me in a car especially in traffic that my adrenals can't take the major freeways especially with my Mom driving, she's a bit of a nervous driver when she's in an area she doesn't know. So we took all secondary highways. Took longer, but was very pleasant and we got to see more. I would say to just plan and take as long as you can to get there, enjoy yourself, don't tax yourself. If you starting feeling icky lay down or stop for a break before you get really bad. We are driving to Phoenix next week, 8 or so hours, which will be rough. I plan on starting the trip with good meds and laying down trying to sleep as long of the trip as possible. Oh yeah and suck on candied ginger. Try to have fun.

KLUSYK---- You sure we aren't long lost twins....LOL I believe my problems arose from birth, I was born blue and have always had left sided weakness. So a Hypothalamus problem, heart problem, any problem could be from that. Or it could be from falling off one too many horses. I did hunter/jumper and landed on more jumps than I can count. I have had at least 3 concussions. My Mom noticed my health change drastically when I went through puberty. I'm also on Cortef for the adrenals, but I don't tolerate it well so I'm not on as much as I should be. Though I have to say the day I had the ACTH stim test was the best day I had in a long while, both times. So I wish they could replace my ACTH daily instead of my cortisol. Same with thyroid, I didn't do well on synthetic, do much better on natural desicated. It was a chore to get a doc to prescribe it with my TSH being low. My internist finally did hoping it would raise my blood pressure and lower my cholesterol if nothing else. My MRI's show no problems with the pituitary or hypothalamus, which doesn't mean they are working right.....just nothing easy or obvious.....like everything else. Only thing that shows up is some venous anomalies, a mild chiari malformation, and several white matter lesions. All my Docs and Radiologists are concerned with the lesions.......except for the Nuerologists. I even have the top Otologist/Neurotologist in the state saying it's concerning. No luck yet, maybe in Arizona at the end of the month.

They are very interesting tests!!! Those tests were how I got a DX of Sensory PolyNeuropathy because everything looked fine on the screen and test results. BUT, I felt NOTHING. The Neuro that did my tests, 2 actually, even added on extra things after I said I couldn't feel it because they didn't believe me. My Mother was in the room to witness. They had me close my eyes and tried to trick me by telling me what they were doing next. I felt nothing, none of the shocks, none of the needles. So I'm hoping Phoenix Neuro at the end of the month will have more answers. Good Luck Lemons, and Good Job, keep it up!

Hi Sue, Pretty much every single thing Endocrine in me is OFF I've had to ACTH Stim Tests, Both ACTH and Cortisol is always low, pointing towards adrenal insufficiency caused by my pituitary. I also did a 24 hour urine cortisol once, my cortisol in urine was a 3. My Aldo and Renin were always LOW before I started florinef, now I can't test accurately. With those tests to get accurate results you need to be sure to FAST all salt or sodium sources for 24 hours prior. Fast everything but water for 12 hours. Be up and around for 3 hours before the test, and make sure it's drawn right at 8AM. The 8 AM thing goes for ACTH, Cortisol........and PTH too if you ever get there. My ADH was always in question, along with if I had diabetes insipidus but we had no way to test here. The florinef helped the polydipsia and polyuria so they stopped worrying about it. Just for reference before Florinef I did have my Urine Osmolaity tested once while fasting water for 12 hours which almost killed me, the level should have been over 800 and mine was 136. Before Florinef, my 24 hour urines, took 3 containers, my totals were always around 7 Liters of output. Now I've been on Florinef for 2 years my output is about 3 to 4 liters. I have never been under 3 liters. The containers we get here hold 3500 ML and I've always needed at least 2. As you know I have glucose and insulin problems as well. Don't know the answers but I did found these articles a while back that I found interesting, and I think all the Angiotensin talk has merit as well. Seems the Hypothalamus controls both our ANS and Endocrine systems. http://webspace.ship.edu/cgboer/limbicsystem.html http://www.psas-support.com/files/Hypothalamus%20and%20the%20Autonomic%20Nervous%20System.pdf

Thank you for the information and input, much appreciated.

Yes I see Dr. Watkins at the Prolapse Center. My Cousin was diagnosed by him 14 years ago, and then I was in May 2010. I live in NM so it's quite a drive for us, but he only requires you seeing their office 1 time a year to stay as a patient. The first appt I had all the testing done here and took results to him. He spent about 3 hours with us and diagnosed me with Dysautonomia and Neurocardiogenic Syncope. He sent me home to follow Dr. Grubbs protocol of Florinef, SSRI, and Klonopin. Saw him again in November 2011. Had a new month long halter monitor recording for him. He diagnosed POTS. Did his own stress test which was ok, and his own Echo, which he found MVP and regurge which wasn't found here locally. They will NOT address any other issues regarding dysautonomia. It is strictly from the Cardiology standpoint. Dr. Watkins is great, the nurses are wonderful, and the front desk staff is like family. They can usually schedule within a month. Good Luck!

Did the CT's or MRA show anything other than or different than the Echo's if you've had them?? What was the conclusion of the tests for you?

My GI Doc finally decided to try me on Creon. I have not taken it yet. I take loads of other Digestive Enzymes and it helps a little but not nearly enough. The Creon makes me nervous, not sure why, just the fact that one of the side effects listed is...."swelling of the big toe" Good thing it's covered by medicare too.......... $397.98 for a 1 month supply......why???? Anyone have experience with this drug???

I know most of us has had an Echo done. Has anyone ever had an MRI of your heart done to look at the entire anatomic structure and surrounding structures??? Adding on: I'm tired and forgot: If so, what was the outcome, did your Docs find additional things due to having this test or a CT versus just an Echo? Why did they order an MRI or CT instead of just an Echo???

Saw my PCP today who is an Internist and the only one of my Docs that never gives up. He mentioned maybe getting images of my Aortic Arch. Said he would need to check some things out about it first though. I've had 2 Echo's done, one by my local Cardiologist and the other by my Dysautonomia Doctor, Watkins in Alabama. The one done here showed nothing. The one done in Alabama showed MVP with Regurge. Does anyone know...... wouldn't aortic arch defects show up on an Echo???

The daily living stuff is really important and that part has to be submitted by you, since your Doctor can't see you at home. Your Doctor isn't thinking about the before and after stuff pertaining to being at a job. Have a friend or family member write a letter saying what they see what you are living with too. I know it stinks big time, so sorry. It shouldn't be this way.

Oh yes all too familiar with Endocrine Docs, wonderful aren't they. I gave up after 6, now my Internist deals the best he can. It took my Cortisol dropping to 1 after surgery for an official diagnosis of adrenal insufficiency. Your labs are within range was do some searching, neither number is a "good" number. My morning Cortisol levels have been anywhere from 4 to 12, my lab range starts at 2. Most addison's patients don't test that low. My morning ACTH has been from 7 to 17, lab range starts at 0, well if someone had 0 ACTH you'd be dead, so don't know where they get these ranges. As for hope I'm fresh out, until someone can see how all this stuff really does fit together not sure what else I can do, or any of us can do. One day at a time and when that doesn't work, I try to remind myself that once upon a time they didn't know what Lupus was, or HIV, or Lymes, so maybe someday this will be figured out too. Are you on any meds? Have you tried anything OTC for the bowels, like teas and such?

Well I have to make this list for an upcoming appointment anyway, so here goes......... Things that are ALWAYS off: Low Cortisol Low ACTH Low Aldosterone (before florinef) Low Renin (before florinef) Low Ferritin Low Iron, TIBC, and Saturation Low TSH Low Free T4 Low IGG Low IGE Undectable PTH before hysterectomy: Undectable Testosterone Undectable Progesterone Low Estrogen High Eosinophils High Platelets High Growth Hormone High Cholesterol, Triglicerides fine Now onto things that have popped up here and there........ Low Vitamin D, fixed with RX Low Red Blood Cells Low Calcium Low Sodium Low Glucose High Calcium High Phosphorus High Insulin Borderline High A1C High Seratonin High C-Reactive Protein High IGF-1 High Histamine Bodily Fluids....... Protein in Urine. Osmolality was way off before Florinef. Diabetes Insipidus Suspected until POTS Dx and Florinef helped. Fat Malabsorption (stoole, sorry TMI) Spinal Tap had a Low Albumin Ratio, but nothing else Other Things.......... HLA-B27 Positive CU Index result very HIGH EBV Positive for past infection CMV Positive for past infection Long Tests with Multi-Reads.......... ACTH Stim Test High Dose; Low base Cortisol, Low base ACTH, response was minimal and gray area. ACTH Stim Test Low Dose; Low Base Cortisol, Low Base ACTH, barely any response, DX adrenal insufficiency, pituitary origin Growth Hormone Suppresion; High Growth Hormone Base, followed by Suppression at 90 minutes but didn't stay down and jumped back up. No one has explained. 3 Hour GTT with Insulin; normal baselines, all subsequent Glucose readings every 30 minutes were high. Insulin every 30 minutes was double the high end of the range. No DX yet, but probably Hyperinsulinemia as I do suffer from Hypoglycemia. If I remember more I'll add them on.

I have an appt with Dr. Levine at Phoenix Neuro at the end of the month. Got my fingers crossed. They pre-ordered some tests that were ordered by my docs here in NM that no one can do. The front desk is great as is the research person who does the scheduling. I have a lot of Neuro stuff going on that is pointing towards auto-immune so here's too hoping. My other choice, actually first choice, was Goodman, but when I called the Mayo about my insurance and directed to billing I was told it's hard for them to work with Medicare. So will start with Levine and if it's not progressive and something he can work with then I will try to get to Goodman. Have a very good friend here who I'm sure I can catch a ride with every 6 months or so. As for climate if you don't mind a drive or short flight, NM is pretty nice, I'm biast though, was born here. It's dry air, not as hot as Phoenix, more of a winter but rarely more than a day with snow. We don't have tons of great docs. Neuros are slim pickings, and POTS Docs are pretty much non-existent. We do have some awesome Gastros and Allergists. I've noticed I don't do well in the heat, but I absolutely melt in any type of humidity. However I've also noticed when we go to Alabama that my symptoms are slightly better and I've linked it to lower altitude, as soon as we start back up the ears and dizzy kick in more. I do ok with the cold here, better than the heat. Again the humid cold is way worse. Good luck with everything!

Been on it since I was diagnosed in February 2010. The Doctor my Cousin (with POTS) and I see in Albama has a standard treatment for POTS, it gets tweaked, but it starts with Florinef, Klonopin, and an SSRI (preferably Zoloft). I did not tolerate the Zoloft at all. Had to stop it after 6 days, it was way too much for my body to handle. Supposedly the Klonopin is supposed to level out the adrenaline surges. I feel it does do this. I doesn't get rid of them, but I just feel smoother. It doesn't do as much as it did at the start, I do feel you build a tolerance to it. I used to have more of a reaction to other Benzo's and now don't really have a reaction at all. Versed didn't hardly touch me for a colonoscopy. Watched the whole thing on the monitor and talked to my Doctor during it asking questions. Seeing the operating room before my hysterectomy was really fun. They gave me the cocktail, I had told them I would need more than most people. They wheeled me in, my surgeon talked to me, introduced me to the other Doctor, all the nurses, and the anasthesia Doc finally said.....she wasn't kidding give her another. Then I don't remember anything. In fact now that I think about it the only time during this illness that I felt completely calm and my symptoms were very diminished was the 3 days after surgery that I had a Scopalamine patch on. I was dizzier and my vision was fuzzier and more hazy but everything else was better. When I took it off though my heart rate was in the 30's for about 4 hours which my cardiologist had warned me about, and then took a violent turn back to tachycardia. Just had 4 root canals. The first 2 the first day on 4 Halcion tablets which I had never taken before. It did NOTHING Second day went back to the Valium my previous dentist prescribed, 35 mg barely took the edge off. The look on the Docs and staffs faces was priceless. My new favorite person behind the desk said they have had over 200 pound men that had to be half carried to the car on half the dose I took of both drugs and I weigh 135. My theory is that the adrenaline and the tachycardia just burns it off. I used to have horses and be a vet tech and the first thing we were taught is that if a horse is alreay in flight mode, you could literally give it a lethal dose of sedatives and nothing would happen. Give 1 cc when he's calm and he's out in 15 minutes. I also think somehow the mast cells has a role in this for some of us. I have very high histamine levels and I have bad reactions to all drugs except Benzos and Antihistamines. Even on high doses of both my histamine blood levels are very high. I take 2 half mg tablets of klonopin a day. One extra on days where I know there is something stressful coming. I do notice if I forget one because a few hours later my tremors in my muscles will get worse and I feel like I'm being chased by a bear. My cousin has tried to go off several times over 14 years and every time she gets to a point that she can't handle the tachycardia and has to go back on it.

Now if all of us "over-achievers" could get us together is one room with a very interested Doctor. We could sit there forever until they figure it out. Sound like something we could do. Seriously un-canny how similar even the personalities are. Every job I ever worked I was at the top within a month, and wasn't liked very much for it. Giving 110%, not good enough, I gave 150% becaue I had to be the best at what I did. Yup even if it meant hurting myself. Wound up in the ER once from working a 48 shift, taking a 3 hour nap, and then working a 36 hour shift. Got through the shifts, got to the ER in the closest city. Nothing wrong except exhaustion, dehydration, and a massive ear infection that I had ignored. Other jobs, work all day 10 hours, and then on call 24/7 all on my own. Never got much sleep as I always heard the phone ringing even when it wasn't. I had no limits. Other people would say no to the boss at work, and I would say yes when I shouldn't have. Probably why we've figured out more about our disease than a lot of others too. I have a friend with MS who is completely ok with letting the doctors run his life. He follows blindly. He was diagnosed without an MRI and without a lumbar puncture. He says he feels better on the meds and that's all that matters to him. Don't have any idea how he keeps going like that. Like others have said above, the fact that I can't keep going like I used to, that I can't figure things out on my own, that I can't fix things on my own, that I need help with the most basic of things, is a very hard thing to come to terms with. I'm probably dealing with that part worse than the actual illness. Hugs to all