rubytuesday

I have neg. ANA and multiple allergies/sensitivities but IgEs are ok. WBCs are ok. I do have CFS, fibro, EDS, and have Delta Granule Storage Pool Deficiency (platelets) and low T cells, T helper cells, IgG1, IgG2 and other IgG subclasses and low gamma globulins. I have to see hemeoncologist day before Thanksgiving.

I miss my bike. It hasn't been out since spell on it this spring and doc restrictions to stationary recumbent bike--says I'll have fewer warnings. I rode 10 miles every day on my old standard bike. I won the first 100 mile 2 day bike trek on my old bike, too (when all these guys had these really fancy, expensive bikes). Just something about breathing in the fresh air (and I have asthma/COPD), the wind and the sun. Congrats! Congrats! Congrats! I'll bet it feels like winning a marathon. Travel safe.

I do mostly microwave or fresh fruits/veggies/packaged salads that I can throw things into. I have one of those 1960s telephone stools (has back to the stool and steps that can be pulled out) if I feel able to stir something on stovetop. Yesterday, I helped at DSILs t-giving family dinner and I didn't think I could--I stirred gravy but it was on back burner (nothing in front burner) and I would go from crossing my legs when standing to moving/shifting weight from leg to leg as I would stir (Dr G told me when standing to shevel--if I'm spelling right--like swaying). It worked. But if heat was getting to me, I would back off to a stool. When I hope to be able to do Christmas dinner, it is going to be prepared meat that I can just doctor a bit and have DS or DH put in and remove from heated oven for me. I plan to try to do little things day before or morning of--seated on stool if the legs begin to feel weak at all. I probably won't be taking my water pill that day as it makes my BP even lower. I have to eat small amounts (fist sized) portions through the day, anyway, so for me, it's cereal or toast and lots of fruits/fresh veggies. I've got to watch salts and fats, too but I have found some low sodium crackers and really am not comfortable being around hot stovetop or oven for big meal preparation. If I'm having bad day and g-kids want kids meal, they are just as happy w/ spaghettii-o's w/ franks, hot dogs, PB + J or lunchtable (the older one who's 7 understands as he's seen the episodes. the younger one who's 3 seems to be fine with my suggestions. She'd eat ice cream for b-fast if I'd let her). There are a lot of pretty good healthy choice both frozen and steamable that are not too bad.

I did not have fibroids either, but did end up with hysterectomy after 3 more years of these profuse prolonged bleeds still persisting after transphenoidal hypophesectomy. I was 28 at the time. They did find endometriosis on the ovaries and uterus. They removed 1 ovary and I always had big problems with ovarian cysts. Probably is connection with vascular uterus and poor connective tissue.

I too have fibro and at one point POTS, but now chronic orthostatic hypotension with the ANS failing.

I am a bleeder. Years ago before technology available the hemeoncologist diagnosed it as Von Willebrands. It was only recently that I had cardiac specialist who knew exactly what it was (rather new technology). I have EDS III (and maybe classic or mix--seeing geneticist in couple of weeks). My EDS was not dx's at time of my menses. I would have to go in to get injections from gyn to stop hemorrhage (I have Delta Granule Storage Pool Deficiency). EDS is faulty/lax collagen that affects every lining of every organ structure and eyes and skin, and even the vasculature. That being said, my gyn wanted to put me on 'hormone pill' to regulate my menses better. I would go for 20 days (heavy) stop maybe 10 days (if lucky) and start back up again. That was my 'cycle'. Before trying the hormones, I went to endocrinologist to find out why a hormone problem (if I needed hormones by gyn) before taking anything. Seemed with blood work and CT scan, I had pituitary tumor (benign). According to my hormones they ran, they were so low I should not have menses at all (guardian angel watching over me). Women can have metromennorhagia who do not have EDS. If your gyn isn't getting any answers, perhaps it''s time to see an endocrinologist (doctors who specialize in all the hormones of the body). I was probably the first and last patient this endo had seen, as he looked so surprised at me when I told him that I was there b/c of the 'periods' (they are more used to thryroid, diabetes, growth hormones). But I was so glad I went. It was never suggested by gyn so I sought one out on my own (nobody close to where I lived either). I don't know your age but cycles can get all mixed up as you enter perimenopause. But I would definitely keep with it at gyn + or endocrinologist. I wish you the best.

Yes, you've been in our thoughts and prayers, Sue.

Do you hae to have a Rx for this droperidone, as it seems my doc and cardiologist do not see necessity of prescribing an antiemetic? Is it something I can get OTC? Thanks for responding.

I had DI once but it was after I had transphenoidal hypophysectomy (fancy way to say pituitary tumor removed surgically). All I remember is that all the water put in front of me (and IV) couldn't satisfy my thirst. They had me void in a recepticle and the urine would almost look like water nealy clear very light. They would dip it (but I cannot remember what it was they were measuring--weight of something?). I had to take DDAVP to concentrate the urine (same thing they use when I hemorrhage)--some hormone that works on the kidneys. I'd never had problems with this since coming off that med--about a year out from the surgery 30 years ago. Now in the past 2 years I've gone from POTS to orthostatic hypotension with ANS failure. My cardiologist was stumped doing all sorts of tests, having me back at endocrinologist and neurologist as he was sure there was connection with pituitary surgeries on all of this but nothing ever showed (and I don't have that insatiable thirst and really really diluted pale urine. I don't think it was so much the frequency as it was the volume and the gravity or whatever they were measuring. I had to keep track of the intake and output for long while.

Katybug, I do have Phenergan suppos. that I use (only if I have to) with migraines. I also have Bentyl for abd. cramping. Both make me drowsy. I never thought of trying this to settle things down. Dr. G (cardiac specialist's) nurse who told me to quit taking the extra ('as needed') Mestinon, but still take a.m. and noon dose and she'd get message to doctor to see what he wants me to do. That was this morn. It's Friday night, weekend here, no call back so perhaps they would rather I have the '4th leading cause of death secondary to falls from syncope' than the weight/fluid loss/gut wrenching pain and misery, or maybe he hasn't got to message yet. I had just asked for Zofran but nurse commented 'I see you're already on so many meds and pain pills'. I explained to her that I list all my 'as needed meds' seperately but that it is rare that I take 1 pain pill (while I per doctor I can take 1-2 every 4-6 hours as needed). I explained for me the pain pill only takes edge off and not worth effects on the IBS. The other 'so many meds' I am on are Fish Oil, Calcium and Vitamin D (osteopenia), Folic Acid, Mg, Mestinon and Midodrine (orthostatic hypotension), Bumex and Potassium (blood pooling with the autonomic nervous system failing), Lipitor (high cholesterol), Singulair (asthma/allergies), a rescue inhaler (rarely used), an eye vitamin, 3 different eye meds for dry eye, and an antibiotic and antifungal that I must stay on for life (for osteomyelitis), plus Prilosec OTC and Zantac. (Meds listed 'as needed' that I put frequency on his form include Imitrex for migraine, Bentyl for GI cramping/spasms, phenergan suppos for nausea *** the migraine, vicodin that I probably haven't taken since back strain this summer). I have fibro and chronic myofascial pain and EDS--I'd tried Lyrica, Cymbalta and a list as long as my arm of meds to help reduce pain that either made me too drowsy or feeling detached or I had allergies/sensitivities like urinary retention with. I take no anti-anxiety meds. I take no anti-depressants, but I really got the feel when she made that comment that I was drug seeking. She may have not realized how condescending her comment sounded so I can only hope that he just didn't get through all his messages yet (especially when he told me goal was to get me hypertensive and that there may be lot of trials with different meds, but she told me 'you know we just can't always get peoples' blood pressures up--you're functioning aren't you?'. How confusing is that when I'd called to inform that I was hugging the toilet, wretching and puking and ask if it could it be the Mestinon, and since I'm still hypotensive, would it be possible to have Zofran called to pharmacy or possible change made. DH's family's t-giving dinner tomorrow that I'll not be partaking in (probably just as well with a lot of sodium in those comfort foods that I cannot have) and told DSIL that I may have to excuse myself to lie down. This is a totally new experience for me, who was always in the kitchen helping. I still can't stand long--can't get too close to heat (she has double ovens and recessed stovetop and huge family so will be plenty warm in kitchen). Am feeling not only miserable with this but overwhelmed and not pulling my share of the work for once--plus we will be taking 2 g-kids with us (and I can't be 'out' with the phenergan with them). I was thinking about holding the Mestinon altogether tomorrow hoping at least to get through this. Thanks for your suggestion and shoulder to lean on, Katie. ruby

Steve, I'd just called my cardiologist in Toledo and reported BPs that are still low, still near syncopal spells and the problem with the Mestinon. She told me that I'd been on the med around 6 weeks so I shouldn't be having it so bad, now, so it is probably something Dr. G will want to get me off of. Am waiting for call w/ his instructions. Just thought I'd share.

My PCP called me this morn (internal med) and won't add Zofran--wanting me to call Dr. G in Toledo. Nurse was quick to call me back to gather info to message to doctor. She told me it's the Mestinon and he'll probably have me stop it. I told her that his goal was to get me hypertensive and I'm still low. She told me that 'we're not always able to fix that. . .some people will just always stay low'. Now this is confusing as he distinctly told me he wanted me hypertensive and that it may take many trials of different things to find right match for me. I just told her that in any event, if he wants to keep me on this Mestinon to please try me on some Zofran.

mwise, Thank you for the info. I too hae to watch my fats not only b/c of high cholesterol/triglycerides but always makes GERD worse. I have lactose intolerance but was making smoothies using yogurt/bananas/frozen strawberries/ice cubes this summer but I was able to stand at the blender to pluse the ice/berrier when I could stand longer. I have to have fiber with the IBS plus Miralax (which I'm finding is puzzling too as sometimes this Mestinon works in evacuation without softening). When I do feel hungry, I want/do eat but find myself full very quickly and when not 'really' hungry ask for kid's portions when eating out (as they are less than the senior portions), unless I just plan on taking the rest home to eat as another meal (which is never as good reheated). When you get sick at your stomach once you throw up, then it turns you away from eating that food again. I can't have salt. Do you think it would be better for me to carry with me (if I have to use the Mestinon when out) something light like 3 Musketeers bar or something like a peppermint patty or something like dry cereal? I can't see how I can get in 6 small meals. I've never been a night snacker and so many of my meds have to be taken either with food or on empty stomach (3 of those with 2 on different schedules as taking every 12 hours). So if I eat, I have to wait at least 2 hours (maybe more with delayed emptying of the stomach) for my stomach to be empty to take those pills, and then would have to wait another hour before I could eat. My morning meds (with food are around 7ish), my next 'empty stomach pill' is around 9-ish, my next round of pills are noon-ish with food, my next empty stomach pill is 3-ish, my next round of meds are 5-6-ish and the last round are on empty stomach around 9:30-ish. So I eat small when taking morning meds but if I eat aroud 10-10:30 I won't be hungry to eat again at noon. Then have to keep stomach empty to take the 3 p.m and keep empty for another hour (when DH gets home around 5-ish for dinner). It seems if I eat at night with the gastritis and GERD, I don't sleep well, and I have to have the stomach empty for night meds so if I eat supper 5:30-6, and it might take 3 hours to empty, then it's about time for my night meds that have to be on empty stomach. I may eat banana or some fruit or cereal as my inbetween meals but it's really more like a little snack. I used to grab pack of crackers but no can do with the salt restrictions yet. Used to eat the pretzel rods, but with the reverse on salt, cannot do that either. I did have pill cam and at first GI thought I had Celiac disease but then since the cam was defective, he repeated it and said that I didn't. I have this EDS so I imagine everything is pretty loose and boggy down there. I truly welcome ideas and suggestions. I'' have to look up this Paleo diet as I am not familiar with it. Thank you, again.

I have been having similar issues now (didn't know which end something was coming out but something was coming out)--severe cramps and vomiting/wretching. I hadn't known til kind poster recomended I take with food and another suggested getting Zofran for nausea (hoping it'll help with cramps, too). I'm on baby dose--15 mg in a.m and at noon and then repeat if I have symptoms. I suspect gastroparesis as I had nausea even before starting these meds in Oct. (Mestinon and Midodrine 5 mg morning, noon and supper), probably from combination of my EDS and dysautonomia. I've got message in to my PCP tomorrow to see if she'll start me on Zofran. (Will probably need auth'd by ins). I have the phenergan suppositories but can't do the treadmil/aquaciser when it makes me drowsy (and after the therapy session was when I tossed my cookies). I also have taken Prilosec OTC and then Zantac at bedtime (have gastritis, GERD and IBS). I can't get the stomach Rxs increased because with my Lipitor and another potent Rx I take, all 4 of the meds are hard on the liver. Am hoping the Zantac will be ok w/ PCP and ins. and even more so that it works. I'd been taking the Midodrin and Mestinon about a month and a half and these symptoms have just gotten progressively worse. Now that I know to eat with it, hopefully that will help too. I'm so glad you posted this and so thankful for people who have taken the time to respond to suggest things that might help and support us.

Thank you, mwise. I am on such a baby dose compared to you and have since the Midodrine was doubled 3rd week of Oct to 5 mg breakfast, noon and supper and Mestinon 15 mg morning and noon (and if needed for sx), and I'm still running low/low-normal BP when goal is hypertension, I have to get something to get me through this before another dosing adjustment. I was told you didn't have to eat with the Mestinon but it looks like I need to not only carry it with a bottle of water (for the prn use) along with a candy bar or something non-salty. I suspect gastroparesis from the dysautonomia and the EDS. I've been on long time treatment with Prilosec OTC and Zantac at bedtime (they couldn't increase dose due to taking Lipitor and being on potent med hard on liver). I can't imagine how much uglier it's going to get. I sure hope this will do the trick. I'm trying to get through 4 more phys therapy aquaciser. And I suspicion that it won't hurt to have something on-hand if/when doses are adjusted. I'm trying to stay positive and told my therapist as I left not to set me back.

Dysautonomia (POTS) may occur in EDS but not all EDSers have POTS. I have EDS III but suspect Classic or mix which you can have. I am in 5th decade of life and am a bleeder/hemorrhage (nobody in my family like this but I am older of 7 kids) coming from DF with no sibs and mother w/ 3 brothers (males less symptomatic). My son had injury (mirrors me health-wise except for hemorrhaging and IBS not quite as pronounced) that was slow to heal. He's in his 3rd decade of life and in exploring this he was found w/ congential dilated aorta (on one end of the spectrum of the connective tissue problems). My POTS/later orthostatic hypotension with ANS failing, did not become pronounced until my 5th decade. Many genetecists here (there is one well-versed in EDS about 2 hours away) have long wait lists. I felt like since I've had this for so long (diagnosed in 2005 and again in 2011), I didn't feel 'pressed'. I think I called to make appt in July and get in on Dec. 8th (so I feel lucky). They told me to keep calling that if they have any cancellations they would put me in, but when I checked in Sept., the genetecist was already booked into May. Having purple feet, a g-father who died of ruptured AAA, and being a bleeder I asked Dr G (cardiac specialist in dysautonomia and well versed in EDS) told me that I do not have vascular or I would already be dead. EDS III also affects the connective tissue of the veins and vessels, but is not considered EDS IV (vascular type). EDS is more than just how stretchy the skin is and how hypermobile your joints are, there are other complexes of systemic processes that are affected and vary person to person. Best wishes.

Do I feel like a baby or what? My Midodrin was started in Sept. (can't remember the dose) Then Dr G In Oct instructed Midodrin 2.5 mg three times/day plus Mestinon was to be continued at 15 mg. at noon and as needed for sxs of near syncope/hypotension. That was beginning of Oct. By 3rd week of Oct. the Midodrin was increased to 5 mg three times/day (breakfast, noon and lunch). But I have been having now (mid-Nov.) much worsening abdominal cramps and vomiting. I'd had the problem with nausea that waxes and wanes (from dysautonomia? and I have EDS/gastric motility issues anyway). From what I read on package inserts it looks to me like it's the Mestinon. You are on such big doses compared to me (and I'm still low/low normal BP--far from goal of getting me hypertensive) but I'm scared to call about the low BP still with the effects on low doses of these meds. I have call into PCP for tomorrow to see if perhaps adding Zofran might help me in tolerating this issue before the BP meds get adjusted again. akavelle, you're the bomb! Did they try to get you hypertensive, too, and then work on the hypertension. Nursing is very physically taxing and stressful work. My hat's off to you. Congrats for getting so much improvement and being able to get back in there.

Thank you, Brye. I have a call into the PCP for tomorrow and will ask about that. Does it help with the bad stomach cramps, too? I am really thinking after reading literature on drug insert it is the Mestinon that's making things worse.

I read that the midodrine can cause itchy scalp (to some probably perceived as hair standing on end). It would make sense that it might affect bladder receptors. My BP is still running low on the Mestinon and Midodrine and I've not noticed retention (hope I don't). What I have noticed is worsening nausea that was present before the 2 meds were introduced, but I think it might be more from the Mestinon as I also get intervals of severe stomach cramping and vomiting now (probably because the stomach is so vascular and it is vasoconstricting which my stomach seems to be rebelling). I'm down to about 93 lbs now and I sure can't afford to lose more weight (plus the vomiting makes the BP drop lower and makes the esophageal irritation worse).

Mine became most pronounced in menopause.

I have had waves of nausea off an on that I am assuming is from the dysautonomia. I have gastritis and GERD and take Rx's for those but sometimes these wave of nausea get pretty bad. I am trying to finish up physical therapy aquaciser--4 more session. When I left on Tues., I thought I was going to toss my cookies in parking lot when leaving. Well, today the cramping was so be while in treadmil but again was off and on and I kept drinking water. When session was over and I started to shower, had to run out of shower and hug the toilet, puking and wretching (no good for the low BP I already have). Since I had that cramping and nausea so bad on Tuesday, and my BP was only 92/64 before therapy, I took extra 15 mg Mestinon before therapy this time (thinking maybe things wouldn't be so bad, but they were worse). I didn't want to pull the call light--could not have got to locked door and wasn't even dressed. I managed to get semi dry enough to get of of bathroom and lie down on one of their empty beds. Therapist came running over--HR was 115 (that was few minutes after I'd been laying and with my OI, my HR has been around 60s when BP drops now). BP systolic was 82 and she never could hear the diastolic on different attempts. I was started on Midodrine in Sept. (but had nausea before that--not so severe). In Oct. Mestinon was added (had been on higher dose of that in past without effects). Later in Oct. the Midodrine was doubled. Could this worsening nausea be the affects of the vasoconstriction in the stomach? Do these meds cause nausea worse? Should I have eaten something with the Mestinon (heart doc said didn't need to)? Can anybody offer insight/share experience? I imagine in down to around 93 lbs. I try to eat small frequent meals when in between the nausea.

Debra. Eat yogurt with your antibiotic course. It doesn't matter what kind it is. It doesn't have to be they hyped-up stuff, just something you like or can tolerate.

I had about 1 epidsode a month for about 3 months, then month 5--boom. But studies over the next year and treatments were aimed at neurocardiogenic syncope and the meds did nothing to control the spells that were becoming more frequent. By 1 year 4 mos. into things, they changed it to POTS again with multiple medication trials that didn't seem to work. By 2 yrs 4 mos, cardiologist had me on list to see cardiac specialist in dysautonomia (year-long wait list). When he saw me in follow up this Sept 2 yrs 10 mos after beginning sx's he was so concerned by my debilitation and weight loss that he called the specialist personally who got me in within a couple of weeks. I have orthostatic hypotension (he told me looking at my records, a year ago it was POTS) with autonomic nervous system failing. He told me this was the most debilitating summer for all his patients b/c of all temps above 90 and high humidity. (That explained why I had to run inside or would pour buckkets of sweat when I'd done nothing but step outside and wasn't a 'sweater' before). I had learned not to take hot showers and to sit while showering (on a stool). But I didn't know that raising my arms above heart level, bending at waist and lifting could also trigger this. He told me at this stage I could expect fewer warnings with faints. I spent most of my summer on sofa with legs elevated. He explained the purple feet/blood pooling and the relationship with my EDS. I already had fibro and chronic fatigue but had never been so debilitated in my life (except when I had the C-diff). I am back in therapy (again) to recondition the hypotonia in the legs (muscles and veins), in the aquaciser treadmill. I'm still having episodes and one med was already doubled so am just waiting til my Dec.follow-up w/ reg cardiologist to see if he feels comfortable w. tweaking the meds (they're trying to get me hypertensive but still running low/low normal just not tachy anymore--usually around 60s w/ spells. He tells me to anticipate pacemaker down the road.

Hope all goes well at your appointment Thursday--nothing serious. (BTW, since it seemed to be a blood drive, I would have asked for the cookies and juice). I'm getting more and more nervous about visit with hemeoncologist next Weds. When I had CT scan of brain (2 1/2 hour ride away, I was in orientation at hospital) endocrinologist's office called me to come in tomorrow. I told them I couldn't until orientation was over and the schedule out. DH made me call them right back and tell them we'd be there tomorrow. I felt like you--must be something found or why did they want me to come back in so urgently. It was a pituitary tumor. So I'm well aware of the gambit of vials for tests that they use but have had maybe 9 at the most (and I did feel lightheaded when going home). Sending gentle hugs to you.

I vote 1-3 years with dysautonomia as that was when symptoms got very pronounced and diagnosis was established. That being said, I believe I have had some ANS quirks all my life (i.e. motion sickness,blood pressure and temperature always running on low side, proprioception problems,GI problems,fatigue and lack of energy, tachy problems off and on for 20 years before this diagnosis).