rubytuesday

You're in my thoughts and sending virtual hug. Safe travel!

I push myself too (and sometimes suffered the consequences--but I'm obstinant like that and hate the thought of being dependent). With just me and DH for the most part, I have to keep functional if he needs me and for myself (he travels for job). On the other hand--I understand how the POTS is like either something pushing you down or sucking you up (like a vacuum). I didn't know what was happening to me over the course of the spring, summer and fall til I saw the cardiac specialist in dysautonomia. I started with 2 mos. of treadmil in aquaciser at therapy and now do 25 min. day on stationary recumbent bike (was biking before POTS but not safe for me with fainting and legs are too weak for the hills now). But I am moving. I have to for the fibromyalgia and the arthritis. That being said, I was shocked when my immunologist threw out 'failure to thrive' because I'd lost weight (after 2 mos of treadmil in aquaciser and puking guts out/diarrhea for mon. on the Mestinon before cardiac specialist returned my call to tell me to stop the Mestinon). I clean our big house (on good day), go out to eat and meet with friends, to to church, participate in church volunteer activities (although I had to give up working the polls on election day). I am able to make bed/do laundry/fix easy meal if planned out and done in stages. I drive myself to local appointments and go to pharmacy (DH likes to do the grocery shopping thankfully). I sit with g-children (unless it the baby and am having iffy day and DH is not in close proximity). And I dog sit from time to time. I don't use assistive devices--yet failure to thrive--really?? (I think she was totally oblivious to what was going on with POTS). Support systems are imperative. DH tried to stop his Cymbalta cold turkey (which both pharmacist and myself told him could kill him). He wouldn't pay the deductible and co-pay that increased this year. He had terrible headache and his high blood pressure was higher. I kept telling him to see his doctor it was from stopping his Cymbalta (but was like talking to wall). He was on road on his way home and I'd mentioned to him the toilet he'd worked on I found still running a little after DS had been in there earlier in the day. I thought I would tell him while fresh in my mind as memory is not so good. He started to tell me how to fix it but then blurted out how I couldn't do anything--he had to do it all. When I mentioned all the stuff that I do--he says, it's all things for you. (The house/laundry/houseworking is keeping up with 4/sometimes 5 people here). The pharmacy may be for him or for both of us or for me. He was upset because he had to go pay insurance bill due (closed that weekend and he'd forgotten to do it Fri) but the thing is the ins. co. is right beside where he works--he looks at that as 'me not doing for us' when I look at it as stupid to make unnecessary trip across town to go right beside a place he passes right next to his work. I told him I was glad he shared that I was being a burden to him (I know it was the withdrawal from the Cymbalta). He saw his PCP the day he got home/got started on something and never said anything more about it. He was my 'rock' as I am his rock when he needs me. When your greatest source of support blurts out something like this--well, it's like a punch in the gut. He never got the POTS until he was with me one day when I had a faint (all episodes before then were alone/once with DGS). DS never got it til he'd witnessed faint (and still don't think he really gets it since I'm dog sitting after his dog's surgery tomorrow--but have to be careful with bending/lifting and it's supposed to be freezing/snow--will have to take dog out and I have vocal cord dysfunction and asthma with cold air being triggers. Dog probably won't want to 'go' being not so familiar ground/will hurt him when he goes, and being short haired/getting feet wet when he's house dog is not his favorite thing. That's what is great about the wonderful sites like this where there are resources and super nice people who share your experiences and give good tips. I take each day as a gift and one day at a time. I always think of those much worse than me and feel blessed. Keep your chin up!

I know that athletes run low heart rates but not in 30s. Am surprised no 30 day event monitor to look at things. When I went from POTS to more of the OH with dysautonomia, the cardiac specialist told me that my autonomic nervous system was failing and that I would (down the road) probably need a pacer. My BP runs low but now heart barely gets up to 120 (stark contrast from my POTS) but now the heart rate hangs in 60's to low 70s and when I do 5 miles in 25 min. on recumbent stationary bike, I barely break a sweat and heart rate may get up to 91 at most. I have caught the heart rate in 40s (but was just incidental finding and rare). Am glad he thinks you're in good shape (heartwise). Congrats for that!

I have Ehlers Danlos to boot. Faulty collagen/connective tissue even in the blood vessels. I cannot wear even the milder 'compression stockings' without bursting vein on top of my foot. When I sit with the legs elevated, I pump the legs periodically. I ride recumbent stationary bike 20-25 min/day to try to keep things conditioned (and am taking midodrine). I find (here in cold midwestern winter), I have not had to take my water pill (was started on Bumex around July) for about a month now. Legs still pool a bit but I'm getting up and down more and it's not seeming to accumulate as bad as it did this summer/fall (before the Midodrine and ability to do recumbent bike). My cardiologist/PCP know why I cannot wear the stockings. My cardiac specialist explained to me that with my ANS failing and the EDS my legs just cannot return the blood to the heart (but I pool blood and fluids). I did have 2 mos. of treadmil in aquaciser before I was able to get on the recumbent bike). I, too, asked PCP to check dopplers (negative) and heart echo was neg except for the 'normal for age' mitral/tricuspid regurg and small pericardial effusion, My cardiac specialist told me when standing to cross my legs (like you've really got to go potty) and/or to 'shevel'--sway from side to side or back and forth (that also seems to help as long as the blood isn't pooling so quickly that I don't have my wits about me before faint).

I've been on Midodrine first 2.5 mg then gradually up to 10 mg morning, noon and supper (tells you not to take several hours before bedtime). I find that my BP is at it's lowest (OH) when I first get up and I freeze like crazy (plus sometimes get a little scalp tingle but not always). Once I have my coffee and Midodrine, I've been pretty good to go--I do seem to get really tired right at the time the next dose is due but cannot say if that is the Midodrine, the dysautonomia, the chronic fatigue, but blame it on the hypersonomia (2 sleep studies confirmed). I have had fewer incidents of syncope/near syncope but have also added isosource nutritional sustainance. So my energy seems to come more in morning and as day wears on and with the more I've done, I don't have much left for evening--have to force myself to do things like laundry or something not too strenuous (but before the Midodrine laundry was big challenge). But I must say, it is midwest winter (albeit not nearly as frigid as last year with record days below freezing). Spring, summer and fall knocked me down (I didn't really understand what I had then 'POTS'). So I'm thinking I'm doing more inside than I had ability to do this summer but I don't know if that is a factor or not (just scares me to think of trying to get through that again this year, although I was told some things to avoid).

Hope this will leave you feeling much better. Best wishes for a speedy recovery.

I took the Rx vitamin D as well and then a D-3 1000 iu every day (plus got a little vitamin D in my Calcium Citrate and diet). Re-checks have been in normal range ever since. That being said, as you get older, body (gut?--cannot recall right now) does not process the vitamin D from sunlight anymore (or at least to same degree as when younger). In addition, I find that if I cannot wear pierced earrings that are not sterling silver or gold without the earlobes getting very red, angry looking, painful, swollen and draining. My immunologist/allergist told me that it is because I am sensitive to nickel. Many vitamins/supplements contain a minute amount of nickel and she says that ingesting the nickel does the same thing to the GI track as it does to my earlobes (wearing costume jewelry). She tells me to throw away all vitamins/supplements and go with only a nickel free muliple vitamin. I found 1 A Day makes nickel free and has a 50+ (for women/for me) and where we shop at Kroger's, it makes a generic version. It has 1000 iu of vitamin D in it. She tells me to get the rest in diet and sunlight but I remind her about aging gut absorption issues with vitamin D from sunlight and of the fact that on my medication, I have to avoid sunlight, and wear sunscreen. I just thought I would mention this since we are all different. Bottom line--I just have my PCP check on things from time to time.

Thanks, jangle. Since moving more from POTS to OH with autonomic nervous system failing (as I understood specialist to say), even though my BP hangs around 90's/60's-70ish and HR 60's-70, when the BP post the bike goes 121/81, HR hangs in upper 80s to 90 ish. Am doing about 25 min--go about 5 miles, no resistance. Am afraid to add any resistance due to BP. Barely break sweat but do have to mouth breath due to vocal cord dysfunction (have to keep respirations fairly shallow in my case).

I take Midodrine and am waiting for second agent to add. I run low, low normal BP typically but when I do recumbent stationary bike (and when I'd done other exercises before the POTS hit), I notice that I get pretty hypertensive. Is this normal with exercise. Before full blown POTS when I had 'neurocardiogenic syncope' and was riding bike 10 miles/day, sometimes my blood pressure bottomed out as I dismounted the bike, finishing my ride. Now it seems to go up. Is that the Midodrine? How high is 'ok' to let it get with exercise (have to exercise)? Am just a little worried if it does this with just Midodrine--it may go even higher with another agent added. I still have the near syncope/syncope but not nearly as much now that weather is cooler, am indoors more and know the dos and don'ts. I try to get my exercise in first thing in the morning (when my BP is at its lowest--if I'm feeling ok).

I was diagnosed with fibromyalgia in 1998 (but physical therapist suscpected it in early 1990s--even gave me newspaper article about). I was diagnosed with POTS last spring. Having both--I can definitely seperate the fibromyalgia from the dysautonomia, albeit there are common triggers for me--high humidity, intolerance to cold, weather changes, barometric changes, poor sleep, the constant pain. The pain I feel from the fibro is different than symptoms I have with dysautonomia (profuse sudden sweating, nose running like a faucet, vision dimming, ears ringing, extreme weakness to point of legs collapsing beneath me). I had chronic fatigue with my fibro (also hypersomnia/narcolepsy) so is hard to say the fatigue is from the dysautonomia but there was just a post regarding chronic pain (in fibro) and link to ANS (I think by firewatcher). I had cognitive issues 'fibro fog' before my diagnosis with POTS. I'd tried boat load of stuff but either couldn't tolerate or did not like feeling like zombie or sleeping life away. Cymbalta made me sleep all the time and Lyrica did nothing for me. Everyone's body responds differently. I have a lot of medicine allergies and sensitivities. I'm glad you are getting treatment--exercise is a must with fibro and can be challenging with POTS. I use recumbent stationary bike (per recommendation of cardiac specialist) since we have no pools locally that are heated conducively to needs of those with arthritis/fibromyalgia. No hot tubs. No hot showers (that used to help ease the pain--but are no-no's with my orthostatic hypotension and syncope). DH had to stop his Cymbalta that really helped his depression (and pain), due to rising copays making it out of reach. You might check the manufacturers website (all have patient assistance programs, but varying guidelines) to see if you qualify for their program. DH had his PCP switch him to generic Rx that serves same purpose but am sure your physician should know of other interchangable drugs to try. Best wishes. My fibromyalgia was diagnosed by rheume who did complete exam, ordered sleep studies, took thorough history, and checked my body for trigger points. I know of no 'nerve test' or blood test that proves fibromyalgia. It is a complex of symptoms that is categorized as a 'syndrome'. Believe it or not there are still some 'doctors' who do not recognize/acknowledge it. A nerve test (EMG?) may have been done to assess for problem with nerve conduction from some anatomical problem. Also rheume told me proprioception problems stemmed from Ehlers-Danlos III that was added (3 years before POTS diagnosis).

I wanted to clarify my response for my answers, standing was taken away from me in 2004 when my glutteal muscles and tendon were torn off my hip bone when I got hit by car. I could stand in lines at grocery stores/restaurant but needed to sit as soon as I could as hip pain could not withstand weight of standing. Before (and for year after I got hit, I tried to work at least part time), my job was 50-65 hours week--lot of standing/walking but sitting intermittently, stair climbing (quicker than elevators--5 floors--2 buildings, really ideal for someone with fibromyalgia). When this POTS hit I don't know if it was more like something knocking me down or more like sucking me down like a vacuum. Whoa. Had never felt that way in my 50+ years and have always run a little low on BP. This summer I thought I would wither away and die before they'd get me treated (cardiologist had tried so many things--either didn't work--got me too hypertensive--am thinking now I get hypertensive with exercise on just Midodrine whereas BP was crashing w/ exercise before exercise--so now worry about how hard to exercise when just doing stationary recumbent bike--20-25 min at aroun 13 mph). If I got up to go change (2) hummingbird feeders--I could get to one closest to door, get it to kitchen and hurry to lay down before able to clean it--get out batch of food/lay down again/rest--go back to kitchen to get it to hang it--go to back of house to get other--hurry in to get it to kitchen/lay/rest longer. You get picture. I'd go out intending to do light weeding in flower beds. was lucky to get 2 or 3 spaces in 1 bed covered--had to rush in to lay down. Took all day if even then to do simple outdoor task. If took walk--had to make sure it wasn't humid and early morn (not shadey on streets of out neighborhood) and had to carry water and cell phone for first time in my life. Had to stop riding my bike that formerly was riding 10 miles/day March thru most of Nov. here in midwest (even with asthma/upper resp. obstruction/copd)--would don under armor and layers and use inhaler. This spring felt like my legs were like lead. Paliptaions. So lightheaded (sometimes in past, in my dismount/pushing bike up hill of our drive BP would crash a few times but this was first time I'd ever felt this way while riding bike. Put it away til cardiac specialist say me and they figured things out. It was only then I learned I souldn't be active outdoors if 90 or above or high humidity or to bend at waist/squat/stoop/raise arms above heart level or lift. Knowing these things, being on some medicine and colder weather, and back on a stationary recumbent bike after physical therapy to help recondition and build endurance for 2 months has at least for now helped me to regain function. Now I will still have occasional episodes but cardiologist is trying to figure out agent to add. And am struggling to maintain weight even with Rx nutritional sustanance (nausea/GERD so bad, presuming due to dysautonomia/gastritis--having seen GI). All I know is that now I'm afraid of the gorgeous spring, summer, fall days and my flower beds that I'd taken such great care to landscape when we moved into this yard 'barren' house. It was a bigger house than our other but thankfully (didn't know I would need it so soon) had walk in shower with rails in one bathroom--we got shower seat for me, had one bathroom with raised toilet and it has the handheld shower attachment--but it takes a lot more reaching/bending/ground to cover to clean with higher ceilings, 2 bathrooms, more floors to mop and carpet to vacuum and reaching to dust. That is huge challenge. DH may help carry laundry to hamper/make bed/help put laundry away on occassion when he's here, does most of grocery shopping but I can get out--cannot stand/kneel during church services and with the vocal cord dysfunction was now told not to sing as it sets the cords in spasms that shuts off airway, so I feel kind of sticking out like a sore thumb, sitting, not singing (when nobody but pastor and song leader) knows of my plight. But I get out and at feel so much better being in our Lord's home with my parish family, celebrating. I can go to store with someone, albeit, I may find that I have to sit down right away (hits me out of blue) but it's so much more than I could do this summer. I look at what ever little part of a task I can get done as a positive. I could never continue working in the position I'd had and had to retire early as they needed a full time body able to do all the duties.

Could be POTS, could be from being deconditioned (which is why I neede Phys. Therapy and am dreading hot spring/summer/fall months which seem to really knock me down). I do recumbent bike (per recommendation of my cardiac specialist in dysautonomia) when bike riding was no longer safe with me. Since I was doing treadmil in aquaciser with Phys T for 2 mos, I waited to start my rec. bike (stationary) since therapy felt good, but then I'd crash afterwards. Had to build myself up at slow rate but do 20-25 min/day and have added some arm exercises while pedalling. I thing the more I can ease up to vertical/build endurance with my upper airway obstruction, asthma, COPD, the more I'll be able to stand for kitchen/shopping/restaurants. Another trick heart specialist told me was when standing to cross my legs (as if having to pee really bad--not meaning to be offensive). He also told me not to stand still when standing--to shift from side to side/swaying from front to back (in efforts to try to keep the blood/fluid from pooling so bad and a faint). He called it 'sheveling'.

I have EDS/POTS/(now more OH) with dysautonomia. Cardiac specialist (and rheume lit. i.e. Prof. Rodney Grahame, rheume, University of London suggests same), knew exactly why I was hemorrhager while Von Willebrands was twice neg. (still put under that umberalla diagnosis). I had Delta Granule Storage Pool Deficiency and test being positive was sent to hemeoncologist. Dr. Grahame suggests rheumes who find EDSers/dysautonomia should check for both VW and DGSPD since they can co-exist. But DS, DM, g-parents on both sides have history of clots. And I know people with DGSPD who have had blood clots even tho they hemorrhage (something I was surprised to know). I can't seem to wear even mild compression socks as every single time--bursts vessel on top of my foot which takes a long time to ease up enough to let me try again. I have to elevate my legs because the blood/fluid pools with the OH and the EDS but I get up and walk room to room--fairly long hallways from front to back--repeated trips thru day and use the recumbent bike 20-25 min/day. When legs are up, I make effort to rotate feet/ankles periodically. I ride in car with seat back/feet on dash board. We stop and stretch legs if long rides.

I've only seen him once. I do know it took a month or so for his PA to call back to tell me to stop Mestinon (awful stomach cramps, diarrhea, vomiting, nausea)--explaining to his nurse when I'd called that my PCP told me I had to call him. I don't know when I go back--they would only tell me that I would get a blue card. In the meantime, I am seeing gastroenterologist (who really doesn't get EDS/dysautonomia) and brought up the nausea/GERD as poss. dysautonomia w/ my cardiologist but he didn't answer. Asked my immunologist who tells me fatty pancras and liver I have can cause issues with malabsorption/inflammation and told me to go off all vitamins/mineral supplements save only a 'nickel free' multiple vitamin (since I can't wear 'cheap' jewelry--she says same thing goes on in GI track if meds contain nickel). I seek out specialists who manage the particular problem as I think when I see cardiac specialist in dysautonomia, his interest/scope of practice is more in what is going on with my faints/blood pressure/heart rate/fluid retention and things like that but I could be wrong. He found my Delta Granule Storage Pool Deficiency and was well versed about my EDS but was not there to treat those things--just told me I needed to have PCP get me referrals to certain types of doctors.

It's funny, about 4 years ago when I began having the symptoms of near syncope/neurocardiogenic syncope--before pursuing cardiologist--I'd asked my rheume (I have fibro--osteoarthritis and pain 24/7 where glutteal muscles + tendon were avulsed off my hip bone in 2004 that was still not yet found at that time, plus EDS) if the constant pain in such a big joint could be stressing something since it is 24/7 except for when I get what little sleep I get? She said it had no bearing. Nothing has ever touched the pain (including RFA) so it's something I just tolerate as best I can using Lidoderm patches sparingly (due to high copays/authorization mandates--and I don't see the interventional radiologist who Rx'd them anymore and my ortho is readying to retire), Therma Care wraps or heating pad. I've always known there must be a link as things seemed to turn south since that happened. Thanks for posting.

I saw my cardiologist in follow-up today (last saw him early Dec). He had intern with him. I gave him my graph of the BP's/near syncope and syncopal events and updated him about the IV Ig, the vocal cord dysfunction (also seen in EDS--and showed shiney/cold hands/fingers and told them feet were like that too and that otolaryngologist who'd scoped me put me on Rx used for Sjorgrens and scleroderma) and updated that I'd seen hemeoncologist for the Delta Granule Storage Pool Def. and that that phys. mentioned it is also seen in EDS ('both rare'). I'd told him that I'd been reading Prof. Rodney Grahame's literature after hemeoncologist mentioned this and found that his research supported that. My cardiologist said--'yes--I've been looking into EDS' (YEA). Anyway, I told him that it seems to me that my BP is running lowest in the morning. I told him I'm doing recumbent bike and Rx nutritional sustanance but worry if I burn too many calories, I don't want more wt. loss so I keep it to 20-25 min (before POTS I rode regular bike 10 miles/day--about 50 min). He asks me about the cardiac specialist and I reminded him about how it took them about 1 month to call me back with instructions to stop the med that was causing such terrible abdominal cramps and vomiting. I reminded him of his goal to get me hypertensive then treat the hypertension. I told him that the specialist's PA said they would let the Mestinon get out of my system then start me on something else (over 2 mos. ago and no call back). He told me he was looking at a list of meds I could use with the Midodrine. He said he has never used any of these, but he knows they do use them at UTMC (where my specialist is). He asked if it was okay for him to look into those (also asked for hematologist/immunologist's names). I gave him their cards (to copy) that I carry with me. I'd told him that hemeoncologist told me I must wear medic bracelet and showed him I was (and that must have platelets before even having tooth extraction as I felt he should know in the event I had to undergo any cardiac procedure). I go back in a month but anticipate a call from his nurse once he studies/gathers the info he needs. I just feel so blessed (how many doctors would learn/study us). The resident asked me how I kept track of all that (I forgot to show him the Care Medical bracelet--how it inserts into computer port and has all the relevant info and contact info on it) but I smiled and said 'you learn to try to keep these things made known when you're a zebra'. My cardiologist smiled and said or a 'fascinoma'. (I'd not heard that one).

Wow. It's terrible to have a physician who is not taking you seriously. You must be your own (best) advocate. I find that being female--if I have a doctor that seems to be getting nowhere--if I take my husband with me, (must be a guy thing), then things start happening. I so wish you could find a good doctor. Some times we all have run into excellent ones who go above and beyond, and frankly some who have been very arogant and dismissive. I have IBS and GERD (am on Prilosec and Ranitadine and Miralax) but go from one extreme to days when I cannot get out of the bathroom--shiver, chill, get weak. And I never no when those days will come. My DH had bad diarrhea for long time and colonoscopy (bx and pathology) showed lymphacytic colitis. Hope you get a good, thorough eval. (it's taken me decades to get this far and have seen more doctors than I can count. I currently have a team of 9). Seems like all I do is go from appointment to appointment--some I may have a 7 hour drive to see (but do not see often--but when I do--the appointment is uninterrupted/very thorough and about issues with me/care plan). Sending welcome and virtual hug. This is a wonderful place to find support, information and resources. Best wishes.

I'm so happy for you--am doing the happy dance, singing in the rain (and it's not even raining here!). Much health!

firewatcher, I'd forgotten about this question but did see hemeoncologist for my Delta Granule Storage Pool deficiency (have EDS III). He told me that the Delta Granule Storage pool def. is rare, (but confirmed by lab and not disputed). He added that this is seen in EDS ('that is also rare) (only I think it's one of those under-diagnosed zebras). Treatment would be what they'd tried with me before which helped as far as stopping the heavy menses (DDAVP) but since it didn't help in other episodes of hemorrhaging, he tells me to have platelets transfused before so much as a tooth extraction--the more complex the more platelets, and sometimes postoperatively, too. He gave me his card to carry so that if any treating dentist, surgeon or ER doc has questions as to treatment, for them to call him.

Yea, Katybug. I know stuff products like that are scarey. One I take costs around $5,000 mo and the other (just for the product--not including pump, tubing, dressings, tapes, nursing, etc.) is around $8000. My ins. authorized the IV Ig but then when the immunologist wanted to change it to a product I can take in my home, they denied it. The letter mentioned something about needing to meet my pension system's criteria (letter was from our pharmacy benefit). I called pension place to request a copy of its 'criteria' to wage an appeal. Pension place told me they do not have 'criteria--we contract/negotiate with pharmacy and they have criteria--you have to call them' (this was supervisor). I called pharmacy--of course had to climb (nicely) to supervisor and explained it's letter (that he could/had to reference) and pointed out it cited 'criteria' twice, and that it was my right as the insured to have a copy to wage a timely appeal. He tried to say it was 'pension' system that had criteria when I told him pension says they pay you to administer the plan. Pharmacy supervisor says he's off next day but is sharing w/ his co-worker supers who cover him and is sending to accounting to get the criteria and if nobody gets it Fri (when he was off), he would definitely call me back on Monday and would get a satisfactory resolution. In the meantime, I 'MyCharted' immunologist and wrote reason cited and what was needed on her part for appeal. She drafted an appeal that afternoon and faxed it the next morning and nurse called me that afternoon that it was approved. I never did get any call back from pharmacy super. It is terrible what hoops these specialists have to jump through when the one's reviewing for insurance are seldom of equal specialty (altho you can request your appeal be reviewed by a board certified clinical immunologist). And they do it on their own time. I realize that history has proven that certain criteria be placed, one to prevent harm to the patient and secondly (but probably truth be known the primary reason) to contain costs. I am so glad they are figuring things out--something black and white that can help you feel better. It's scarey being on this stuff--side effects (well--for one, my hair went from straight to curly with one of my meds). What's it doing to other body parts? And with the Ig you can get whatever the blood doner has brewing--including Hepatitis C. But they outweigh the risks against the benefits. I trust in my immunologist so have proceded with her plan. If/when I get side effects, will cross that bridge when I come to it. Wishing you better health with your plan. I hope the insurance isn't a barrier. As much as we get frustrated and aggravated by them, it is a blessing that we have health care coverage at all. Best wishes.

I was found to be critically low on vitamin D and had to take the Rx form. Then I sustained daily 1000 iu. My vitamin D levels were and continue to be monitored from time to time and they are always within normal limits. On the other hand I was taking 500 mg Calcuim Citrate twice a day (osteopenia) and my calcium level kept coming back a little high at 10.5. I wondered if that was contributing to my nausea. My immunologist took me off the calcium and vitamin D, fish oil, folic acid (she can't take my mg from me as it helps with sleep and migraine prevention). Instead she wants me to take a nickel free multivitamin like Centrum (I found a generic One a Day 50+). My PCP was not in total agreement but we'll see how monitoring bone density/labs go on close watch. Too much vitamin D can be damaging, just as too little.

I've only been on it since Oct. Now take 10 mg 3 times/day. I was on Mestinon with it but could not tolerate the Mestinon, so it was discontinued with the intention of later adding another agent to get me hypertensive. Just taking the Midodrine, I find my BP usually runs in 90s or low 100's over low 60s or 70s. If I am anxious (i.e. doctor's office it may get up to around 132/84--but not usually). When I got my gamma globulin IV, it stayed in low 90's over low 50's but did go up once to 102/44.

I was on Mestinon from Oct. to Dec. but it made me sicker than a dog. My stomach cramped terribly and I was never sure which end things were going to come out--caused terrible nause, vomiting and diarrhea in me. They had to stop it.

This morning I found myself staggering from bedroom to living room to turn light on, then on to kitchen to turn light and coffee on when things start to go dark--the near syncope (close call this morn) BP 68/38. I had to call my DM to come stay with me one Sat. as when I got up with headache (later turned to migraine), BP was 75/44 and DH was on trip. I hadn't been up long at all and was prepping a dish for Christmas when I turn to throw something away--staggered and passed out. I printed off my BP graph to take to my cardiology follow-up and noticed that the times it seems to be lowest in the day (unless for some reason I have an episode) is first thing when I get up. I have had a few times in my sleep where the bed including my pillow is just saturated from an episode of profuse sweat (not typlical for me). Now I am wondering if my BP went too low in my sleep when that happens. Anybody else like this? (my endocrine system is fine).

RichGotPOTS, I hope you get some answers (but hope you don't have to do the gamma globulin--unless the frequency/severity of your infections is affecting the quality of your life). Seems I bounce from bad infection to pronounced dysautonomia. Either one can wipe me out. After I spent all those hours being transfused with the vial of antibodies, another doctor drew 10 tubes of blood 3 days later (taking antibodies with it). Best wishes.