rubytuesday

When seeing cardiac specialist in dysautonomia who diagnosed the orthostatic hypotension, we discussed my history of hemorrhaging that more than a decade ago the hemeoncologist classified as 'Von Willebrands' even though I did not have that antibody (explaining they did not have sophisticated measures of all of the components involved with bleeding at that time). My cardiac specialist said that he knew exactly what it was and that it was not uncommon in dysautonomia. He said the test was recently found (by staff at University where he worked). He was correct. The lab test showed Delta Granule Pool Storage Deficiency (treated the same as Von Willebrand's depending on the cause). So he instructs me to see hemeoncologist. As I was pondering why the deficiency with things within my platelets, I also got my labs from Infectious Disease specialist that show low T cells, low T helper cells, low IGg1, low IGg2 and other IGg subsets and low gamma globulins. My platelet count and white blood cell count are always ok--it is the things within them. I am wondering and worrying if I will have to have the bone marrow and needle biopsies to compare to the complete blood profile (especially since I am small, have osteopenia and am a bleeder). I'm getting scared because my appointment with the hemeoncologist is the day before Thanksgiving--approaching fast. I was wondering also if this Delta Granule Storage problem is not uncommon (he knew immediately what it was), why I couldn't find any threads about it. And I thought I might throw this out there to you who bruise so easily with this dysautonomia to see if you might need checked.

Yes, that does make sense songcannary. Thanks for the tip. Arthritic hands don't help either. I will have to give it a try. I used to make a lot of hospital beds (sheets) but they're a lot smaller than the queen sized bed, and the mattresses were not nearly as heavy and thick.

Again, I am rather new to all this, but find laundry day a nightmare. So I have to set changing the sheets on a 'good day' which is still quite challenging. I am petite and short. We have a queen sized bed with mattress topper. I buy larger sheets so tugging and pulling isn't as much as an issue but I repeatedly have to go from one corner/side of the bed to the other multiple times, and repeat with each layer of the bedding. By this time I've been on my feet quite a while, bending at the waist while trying to life what I can of the heavy mattress to tuck sheets in with hypotonic arms and legs. I keep water in there with me and have to stop, rest and drink (and it probably looks to DH that the only thing I did today was change a bed). He does try to help when he is here by carrying the laundry from the hamper to the utility room (one less bending down and carrying a load). He helps get dinner as I'm done by that time of day and he does almost all the shopping (I can go short term but never know if it will be successful or if I have to sit right down on the floor if a chair or bench is not close--and I have to go with him). I can wash a few dishes although it may take me 2-3 stops to hurry to sit, rest before tackling again. I do have a stool I could carry over to sit on for that, but not for changing the sheets. I reward my g-son if I can get him to help with dusting things down low when he comes over and while he'd be eager to help, (he makes his bed if stays all night which I have to touch up) he's not big/strong enough to help me change the sheets. I even have the bed on risers. How do you all do this?

Naomi, Under what type I have, cardiac specialist told me definitely orthostatic hypotension but that my autonomic nervous system was failing (and there would be more fainting episodes without warning. Hopefully the Rxs will at least keep the BP up, but he added to expect a pacemaker down the road as the heart rate is no longer tachy when the BP drops). Under what triggered the beginning symptoms, I put trauma or surgery. It is a tough call. My symptoms with the near syncope started Jan 2009 and they progressed to syncope too many times to count until finally getting in to cardiac specialist in Oct 2011.In March 2003 I hemorrhaged after a sinus surgery and then became very debilitated from C-difficile infection from being on antibiotic so long before and after the surgery. In Apr. 2004, I was struck by a car and received a lot of trauma--to this day I have pain every minute of every day in my SI since being struck. It was not until Feb. 2011 that they discovered that my glutteal muscles and tendons were ripped off the hip bone when I got hit. In Nov. 2006 I had a solidified mass of infection (2nd attempt to remove) in my sella turcia (from a transphenoidal hypophysectomy in 1982) removed with a piece dislodging and embedding in the bone. The neurosurgeon/ENT thought they had removed it all, but I was deathly ill with respiratory/sinus infections and pnuemonia until it was decided they did not get it all and in June 2007 I had to return to surgery for another debridement. But the fact is once the infection is introduced into bone, the organisms seed themselves and it is impossible for the infection to be totally removed with debridement. Ergo, I have osteomyelitis (and am immunocompromised). In Sept. 2010 I had an osteotomy/bunionectomy on one foot and bunionectomy on the other--both incisions of the 'bunionectomy' foot split open before even leaving recovery room. I hemorrhaged with both feet. The foot that dehisced had to have the cast removed within days (while ortho had planned on keeping them on a few months). I had to have legs elevated and could only use heels to walk until Dec. 2010. This was when I really noticed the heaviness in my legs. I started the treadmil as soon as ortho gave the ok, and stationary bike until warmer weather, then back on my standard bike (always rode 10 miles/day). I couldn't understand why the legs were so heavy still and I was so winded and the heart palpitations so strong. I had a couple of episodes on the bike, so I put that away until they figured all this out. So I was really not sure. I had fibro diagnosis in 1998. I am a bleeder (life long). Things really took its toll on my body when I got hit by that car. I don't know if it was a slow progression or if the osteomyelitis keeping the body in stress or what. The questionare said to explain below but there wasn't a place I saw to let me explain.

I had the most debilitating summer of my life. The cardiac specialist explained it was due to all the days with high temps and humidity. I spent most of the summer on my sofa with legs elevated in the AC. The least thing I would try to do would send me rushing (if I made it before passing out) to floor to lie down or to sofa. My cardiac specialist has me on Physical Therapy (I go 2 times a week) to build up strength and endurance. He ordered the tredmil in the aquaciser. He also told me I could use a stationary recumbent bike. It is a slow process but I do think it is helping and my therapist said that it is. He was fearful since my cardiac specialist said there will come more times that I have no warnings of fainting, so he had planned to use a life jacket on me but he forgot it. So he cinched a safety belt around my waist and he held the belt through my sessioons. I also learned (after a little spell after the second session) to hand him my bottle of Mestinon that I can take with first sign of syptoms, so that he could get a pill to me right away (even though it takes 15 minutes to work and my syncope happens way before 15 min.). I am a bleeder so that added another concern. But actually, we had a plan and so far, so good. The temperature of the water is kept at 93 or 94 degrees because of fibro and arthritis (another problem as it will dilate vessels). But I find it rather relaxing and almost like a gentle swim. They pace the tredmil at what is comfortable for you. They have jets going. (I'm not allowed in hot tubs or to take hot baths or showers). The aquaciser has handles you can hold on to all the while you walk if you wish. I finally got bold enough to take advantage of the water and let go of the handles and use my arms with walking too since they also get hypotonic. (I used to be a daily exerciser--10 miles/day on standard bike, or a 30 min workout on the treadmil and some exercises with weights, then had to stop all that and go to stationary bike but with problems with BP on that, with this summer, had to wait til they got all this figured out). Now I have all this equipment (I really, really, really miss biking) it sits and I had to shell out for a stationary recumbent bike. DS doesn't get it at all--he asks 'what are you going to do with the stationary bike or the treadmil, or the bike?'. Being a bleeder with this, biking probably isn't ideal anymore. I'd like to sell the stationary bike (it's portable and folds for storage) but nobody wants to give anything with this economy even though it is in like new condition. I feel the same way about the treadmil--I just can't stand the thought of giving it away. But even before I was 'deconditioned' I always would hold on to the treadmil as my legs felt heavy and I didn't trust that they might not give out on me during my varying programmed workouts. It sits in a room that is not heated so I have to heat up the area before--going into cold to warm it up--wearing warm clothes and jacket and gloves that I can peel off as I walk and the cold makes the nose run like a faucet. So it's probably not ideal either--especially if I were to pass out back there (solarium). So I suppose the recumbent bike it is. I just feel like by giving away the other things I loved to do (even though we could use the space) is just such a defeating feel to me. I wish you much success. You have the determination. You can find something to suite your niche.

I was diagnosed in 1981 with pituitary tumor (chromophobic microadenoma surgically removed). My older sister said that my neurosurgeon told the family that it was hereditary but I never remembered that (but have more memory issues since all the syncopal spells). I never started the near syncope until Jan 2009 (new year, new you). I dismissed several episodes at first, rationalizing them to some reason or another until I had a more severe one with 5 year old g-son that landed me in hospital--but with all Rx failures and finally referral to cardiac specialist in dysautonomia when my cardiologist and PCP suspected POTS, specialist right off the bat found orthostatic hypotension. My heart rate is not longer responding by tachycardia when the BP plunges and he says to expect a pacer down the road. This was in 2011. I think what threw a lot of my docs/specialists off was the focus on the effects of the pituitary surgery as cause of all of my symptoms all these years (despite repeated testing of endocrine functioning). I also have Chairi I, fibro, EDS III, am immunocompromised, have multiple drug/environmental allergies, Delta Granule Storage Pool Deficiency and a host of other problems. I believe that all (but the fibro) can be inherited via genes. I am second oldest of 7 coming from a family that never believed in going to doctors--and ten years senior of youngest sibbling. As adults most of the ones with problems are not as severe as mine, and are insurance poor or have such poor ins. plans that they don't bother to get things pursued. There seems to be some correlation with EDS and dysautonomia and Chiari I, so why not the microadenomas, too. I do remember the neurosurgeon telling me that the type of tumor (though benign--but can cause blindness and other problems) has a tendency to recur so I was to have CTs or MRIs about every 5 years to check. Thankfully I haven't had recurrence.

I have always run low temp around 97, but sometimes lower to such degree that the nurses have to warm up my fingers before the temp will register on the finger gadget. I imagine that now I am on vasoconstrictors, it will register lower. I was tested for Lymes and it was negative. Nor did I have thymus, thyroid or adrenal problems.

Thank you for posting this. This is very challenging to me and since having a few episodes where I had to immediately sit down right where I was, or grab and chug any bottle of fluid from the cooler at checkout line while holding myself up with the cart/the checkout counter, my DH does the shopping. Sometimes I go in feeling fine but by the time I make the trek from parking to store, I have to always remember--I cannot bend down to look at items/read labels on things on the lower shelves. I cannot raise my arms up above heart level. I cannot lift anything very heavy. I cannot stand in line for very long--and if I stand in line, I just assume the position--legs crossed (as if you have to you know) and try to squeeze the weak calves while standing (pumping muscles as best I can--or going up and down on toes while standing as another way to pump the calves). Now that I am doing the tredmil in the aquaciser in physical therapy to help build the strength and endurance in the legs, and that they have diagnosed the orthostatic hypotension, ANS failing, and have me on the Midodrine and Mestinon, I am so hoping that I'll do better (but I'm still afraid to go without DH). My son got me a Trak phone for mother's day (I'm not a cell phone person) but I do carry it when I go out. I always pray that if I faint, I don't get seriously hurt (cardiac specialist says its the 4th leading cause of death--falls with this), and that if I am not seriously hurt that nobody calls 9-1-1 as so far I regain consciousness and strength after laying for awhile. By the time an ambulance was hailed and I got to a hospital, I would probably be asymptomatic.

Dry eyes here, too, with corneal abraison and erosion. My left eye is worse currently (and mostly) than the right. Opthamologist has me on Restasis for the one eye, twice day--keeping in fridge. Also use either Sustain Ultra or Refresh in the eyes 4 times day and GenTeal gel in both eyes at night. Optometrist and opthamologist said that it could be from the dysautonomia or from water pill I have to take for that or the orthostatic hypotensive meds. I, too, find computer, reading, wind, sunlight to be extremely irritating. Plus I have to push myself to get in the fluids as I probably just stay hydrated or a bit lower when I should be overhydrated (but the pooling of the blood/fluids in the legs and feet seem to grab what fluid I have which means another water pill).

I was Rx'd Ambien in 2003 after 2 sleep studies showed that I do not get into the deep phase of sleep, spend what little sleep I did get in stage II, with over 200 alpha wave intrusions in my sleep and a narcoleptic pattern seen in patients with fibro (I have fibro but did not reveal that to sleep doc, and tests were done at 2 different labs by 2 diferent docs). Rheume was one who said I must take Rx strength med (Melatonin did nothing for me) and Rx'd Ambien. I got along fine with it until the winter of 2004. I would get up for work very early, so would lay clothes/shoes out soas not to make much disturbance when getting ready for work. When I would get up, maybe shoe would be gone or changed. Sometimes when I got home, I would find empty food packages/candy bar wrappers in my room (I never eat in the bedroom and wasn't a night time snacker). One morning I woke up and my nails had been polished. I worked in hospital and ran into my PCP and told her that I was concerned that I was 'losing time' (had no memory of any of this) but I knew I didn't have Alzheimers. She sent me back to sleep doctor. This was before the black box warning and awareness from drug manufacturer that it could cause sleep walking and sleep eating. My sleep doctor was not aware (nor was I at the time) and instructed me to get an alarm pinned to my jammies so if I were to get up, DH would awaken (not--he's heavy sleeper). He also told me to put alarm on my doors as I could go outside. He said I was doing things subconsciously (I think--but not yet in deep phase of sleep) that were parts of routine for me at different parts of the day. Once I must have gone into our unheated (closed off) room on a step stool to change out a cami. Once I 'awoke' to my DH yelling at me and g-baby crying (I had gone to bed but baby must have been hungry--DH was babysitting but I had come out and made him toaster french toast and had syrup all over the place, including the baby). DH said he'd always thought I was awake as after I'd gone to bed, sometimes I'd come through the living room and talk or go into kitchen. Thankfully, when I retired just a few months later, our Rx plan changed and Ambien was higher co-pay and all the news about its affects were being on media. I was put on Temazepam (Halcion)--very mild, sometimes works/sometimes not, not so good sleeping pill. B Also when I was on Ambien, I thought I would fall asleep fairly quickly but within about 3 or 4 hours I was wide awake. When my Temazepam didn't work so well, my PCP tried the Sonata and the Lunesta but I had the same thing as far as getting to sleep fairly quickly (one of them didn't get to to sleep til later but I can't recall which) and neither would sustain my sleep. After just a few hours, it was like somebody turned the lights on, the sun was shining and wakey wakey.

I have had periods of clustering of migraines. Once it began around Christmas and it was in February (after trials of many things, and I do take Mg every evening), neuro finally started me on DHE infusion for a month. As the month drew on, the medication dose was tapered down. I was on short term dose of Reglan to also help. I've suffered migraines all my life but clustering didn't start til I was in my 40s. I cannot take aspirin or NSAIDs due to allergies. I had tried each and every migraine product on the market. Imitrex works better for me but the problem is it doesn't always work for me and you can only repeat it once in 24 hours. My neuro added that trying to 'reduce' pain by Tylenol was no good as if I took it 3 or more times a week, I could have a rebound headache that mirrors a migraine. I hope this finds you feeling better.

mwise, You are most welcome.

Hello, all. I am a newbie and have had near syncope/syncope with BP bottomming out and tachycardia (which no longer happens when the BP plunges). I wanted to share that this was the most debilitating spring and summer and early fall in my whole life. I could not pull more than one or two weeds in flower bed when I'd have to run into house to AC and lie down. I could not walk into kitchen without things going black. If I would shower (and not hot water) I would either have to lay on bed in wet towel or finish up sitting on floor. I could wash clothes but by time I got clothes out of dryer and to bedroom, I would have to lie on bed to sort and fold. When sitting I would have to keep the legs elevated because the feet were turning purple and toes were getting huge water blisters on top (new to me) that I assumed might be from fluid retention. I had/have been so nauseous that the thought of eating is nauseating (already had been on 2 stomach meds). Had been losing weight. Arms and legs so weak and shakey. I could no longer go to the grocery and bend over to look at things on the bottom shelves. Sometimes if I had to stand in line for any length of time--here would come the profuse buckets of water pouring from my head and nose, staggering gait, muttled thinking, slurred and slowed speach, holding myself up by the counter while checking out--first grabbing a fluid from the dispensers at the ends of the checkout lane--guzzling before even checking out while trying to pan where I might be able to use cart as a walker to the closest bench or place I could sit to lay head between legs. I joked that if neighbors didn't know me but would see me go out into yard, they would think I was drunk. Cardiologist and PCP (internal medicine) had suspected POTS and referred me to cardiac specialist in dysautonomia in March but wait list was year long. By the time of my follow-up with cardiologist in Sept., he was so alarmed at how debilitated I had become (my PCP swore I looked rheumatoid although all the full gambit of tests were essentially ok, save barely any immune response), that he called this specialist imploring to get me in sooner. Thankfully, the specialist did see me and immediately diagnosed me with orthostatic hypotension. My feet were purplish black and swollen from the 5 hour drive and 3 hour wait. I take a potent water pill as needed. He added Mestinon twice a day and as needed should I feel symptoms coming on (or if I am going to a place that triggers episodes--like church or funeral home or store) and Midodrine 3 times a day. He's already doubled the Midodrine and I am still having episodes of ups and downs but right now--not quite as low. Here's the thing. Some of the first words he spoke to me were that 'this has been the most debilitating summer for all of my patients because of all the days over 90 degrees'. I didn't know I shouldn't have even been outside--not that I could tolerate much more than sitting in swing under shade tree. But he picked up on the purple feet and my EDS explaining how collagen affects even the veins/vessels. In another attempt to make the legs stronger to help get blood return to the heart, he ordered physical therapy in the aquaciser for building endurance and conditioning. I have been doing the tredmill in the aquaciser. The legs will still often burn when I stand and I still feel like I cannot stand long, but sometimes I feel like I am able to get off the sofa to do something--not much but more than before. Today was supposed to be my last session as I'd made such good progress over the past 5 weeks, but today the therapist told me that because I was continuing to make such good progress (50 min), he was adding on 6 more sessions. At first it was very scarey--aquaciser has to be heated to 93-94 degrees because of the fibro/arthritis and heat vasodilates. He was more scared than I. He planned to bring in his son's life vest to put on me in case I 'went out' on him, but he forgot it and instead strapped a safety belt to my waist and he held it all the while. After showering and changing the second session, I started to feel the palpitations, SOB and weakness, sweating. I popped a Mestinon and was drinking a cup of water just as soon as I'd found a place to sit. The receptionist hurried back to get my therapist and I kept saying 'I'm alright. I'm alright' (the standard phrase I would reassure DH, g-son, others who would witness an episode with) but I could hear my speach was slowed. He grabbed the pulse oximeter and I was tachy (I think because the shower room was small and the space heater built into the wall was really putting out heat and I'd bent over to pick towels up off the floor and to put on my shoes and socks). From that point on, I gave him my bottle of Mestinon each time I come in so that if something were to happen and I was muddle-headed, he would have those to get to me. I was just curious if anybody else gets deconditioned to this point with this and is this going to be what I can expect every summer? Winters are hard in the sense that where I live, you wear a heavy coat (especially on these vasoconstrictors) and when you're standing with the weight of a heavy coat added, or the space is confined and really heated, I know I can expect it, but I don't really go out so much when it's cold or snowy or icey. Am I going to have to go through therapy each fall? I had been doing a stationary bike but that was making my BP go sky high. I had rode my bike (standard bike) 10 miles/day every day before having a couple of spells with that so I'd shut down the exercises til seen by the heart specialist. He tells me I can only do recumbent stationary bike. I was glad to know that it was not just me (although my heart is with all who have to go through this).

I had 2 TTTs a year apart and did not faint with either. After the first TTT cardiologist put a 24 hour event monitor on me despite my pleas for 30 day event since I was not experiencing near syncope on a daily basis at that time. The 24 hour event monitor showed nothing. I had another episode and always track the BPs/HRs to use in communciating w/ cardiologist/PCP and he did do a 30 day event monitor that showed some kinds of runs of tachycardia. He'd called me within about 2 1/2 weeks of the test initiation and started me on med for that. I continued having these near syncopal episodes (since Jan 2009), randomly. I had multiple Rx adjustments and then to no meds at all. By the spring of 2010, still having symptoms, cardiologist repeated TTT with a different cardiologist/physiatrist. Again, though I did not faint, that cardiologist was convinced I had 'neurocardiogenic syncope' and started me on Florinef. Up through Dec. 2010 it was a bunch of med trials without effect. In March 2011, both cardiologist and PCP were convinced that I had POTS and referral was made to Dr G. By the time Dr. G saw me Oct. 2011, he said looking at records a year ago I did have POTS but now, it's orthostatic hypotension. I feel so blessed to have doctors who stuck with me. And since they have, I have called more attention to the EDS III that I have, trying to sort out issues with immunocompromisation, hemorrhaging, GI problems, all the 'itises'. My cardiologist told me that dysautonomia has nothing to do with EDS and my research shows that there is a correlation and that the very cardiac/dysautonomia specialist, Dr G, he was referring me to was invited to be guest speaker at the National EDS Foundation's Convention this year, speaking on dysautonomia, as was my geneticist. Now both my cardiologist and PCP (although my PCP told me she has never seen someone with EDS before as it is so rare) have been willing to make suggestions as to handle problems as they occur (as far as stomach/GI/sleep/fluid retention issues and now this orthostatic hypotension). I have a complex medical/surgical history and each time I go to a specialist, no matter who refers me, I always ask that my PCP receives a copy of the reports and tests. My cardiologist was a young 'newer' member of the heart group, so perhaps that is why he was willing to stick with this (also could have been fearful that if something was missed without follow-ups, he could be liable). When all these things had first started, I talked to my rheume about the 'sensations' (sudden warmth, weakness, tremoring, nausea, ears ringing, vision dimming). She said 'nothing rheumatological. So I asked my pulmonologist about these 'sensations' (he said nothing pulmonary). I knew it wasn't in my head but didn't know what it was. I dismissed 3 of the episodes since they had only occured about once/month and tried to rationalize them to myself. When the 4th episode hit--and hit me much harder, landing me at doctor's who sent me to hospital right away, that was when I was kicking myself for not contacting my PCP before things got to this point. It takes a lot of persistance and being your own advocate and arming yourself with the research to back it up. Sometimes you play the role of educator of your physicians and as my neurologist said to me when she said 'nothing neuro'--please call me and tell me what you find out because we doctors are always learning. When my PCP said she'd never seen EDS before, I told her to take a good look at this face. So far we are walking this journey together. I think it's pretty much symptomatic treatment and knowing restrictions and following instructions and making sure that everyone in the hospital knows what you have. I wear the CareMed bracelet that stores all the info. It stinks to have professionals dismiss you when you know your body. You know when something is different. One approach I have learned in 'manipulating' the docs if I think I may need tested or referral is using the 'would there be any value' to doing this or that, or 'could you help me understand' this or that. Some doctors just have big egos and cannot stand that they do not have all the answers (citing 29 years as hospital nursing/care management).

Hi, Steven, I am a newbie. I had been seen by Dr. G after 2 1/2 years of near syncope that progressed to syncope with tachycardia and multiple medications and changes. My cardiologist and PCP told me since March that it was POTS. I graft my BPs and HRs using MedHelp monthly and take them to my appointments. When cardiologist sent my records with referral to Dr G, I was put on 'the list'. By the time I saw my cardiologist in Sept., I was so debilitated over the summer. My cardiologist had had me on Midodrine but it was making the BP too high with any activity at all and I was still having near syncope. I must have looked very debilitated as he called Dr G to see if there was any way he could see me 'sooner'. By the time Dr. G saw me the first of Oct. he told me that had he seen me a year ago, he would have concurred with POTS. I clearly now have orthostatic hypotension--my feet were purplish black in his office (and I am tiny--non-smoker, non-drinker). Because I pool the blood so badly and it does not return to the heart, he has me on Mestinon and Midodrine (which he has already doubled and I'm still having periodic episodes). I also have to take a rather potent water pill when the fluid accumulates so bad. What seems to have happened to me as he explained was that the autonomic nervous system was failing. No salt for me. I still have to drink a lot of fluid. My heart rate no longer gets tachy when the BP takes a plunge. He told me that I would probably need a pacemaker down the road (and I'm just entering middle age). I have a terrible time getting the compression stockings on. It takes me an hour and all the efforts of trying to cinch the foot to the proper position, I have rubbed the shin/forefoot raw. I have to wear the garter belt with my thigh highs and having hip injury find it very uncomfortable. It takes 2 of us to get the stockings off. I can only get them down as far as my ankles. Another thing Dr. G told me was no riding my stationary bike--only recumbent stationary bike. He told me to avoid bending at the waist and raising arms above heart level (in addition to not going outside when temps are above 90, using chair in shower--no hot showers or baths, and avoidance of 'warm/closed' places and prolonged standing. He told me when standing to shivel and to stand with the legs crossed. He told me to stay seated through church services. He told me to carry my Mestinon wherever I go along with a small bottle of water as if I felt any inkling of symptoms, I could take an extra dose (similar to concept of Nitro) as it kicks in within 15 min. (unfortunately I get faint way before 15 min. of symptoms). Dr. G did tell me that the warnings were going to be less and less and that the 4th leading cause of death in elderly and cases like this is from falls. He has me on both meds to make me hypertensive as those risks (though very real) are less than those of fall (and I am a bleeder--Delta Granule Storage Pool Deficiency--I hemorrhage). He explained that once the hypertension is at a level satisfactory to him, he will start working on the hypertension. Right now, I still have plunges (not quite as low, but the symptoms are nearly the same). Another oddity is that sometimes I may just be sitting or sleeping and suddenly pour buckets of water from my head, like a soaked mop (and then I chill). Dr. G told me there were a lot of adjustments that could be made with these meds or other trials of meds that may be needed. So, yes, I am on both. And being new to this, it is a very scarey thing.