Heiferly

Have you looked at Dr. Castells' work with desensitization to hypersensitivity to drugs? Maybe contacting her would be a good next step since she is a leading expert/researcher on drug hypersensitivity and desensitization. We mostly discuss her here on DINET with regard to her work with MCAD/mastocytosis, but this is another aspect of her career for which she is renowned. http://scholar.google.com/scholar?q=dr.+mariana+castells+rapid+desensitization&hl=en&btnG=Search&as_sdt=100000000001&as_sdtp=on

I was self employed at the crossroads of home healthcare and early intervention (special ed), doing one-on-one therapy with autistic children in home, school, and community-based settings. Social security set the date of my disability to the date of my onset of dysauto ... I barely worked at all after that day (just a few hours spread over a couple of weeks as I rapidly deteriorated). I'm on home healthcare now and have no illusions about work of any kind. It would be a pipe dream just to do housework for myself or shower safely without assistance. I think the observation that those of us with backgrounds in healthcare (or even science-related degree fields in general) are more likely to have been able to assertively advocate for ourselves and obtain (and comprehend) the information necessary to get a diagnosis is dead-on. My degree is in speech and hearing science, with a firm background in the "hard" sciences from two major research universities. Without my educational background, I'd likely be lost regarding my condition. Without my work experience in home healthcare, I don't know that I would've gotten approved for SSDI the first try around, would've gotten home healthcare myself, etc. It really helps to understand "the system." I imagine there are legions of dysauto folks floating around who either aren't diagnosed or aren't getting any treatment or services to speak of.

It can be attributed to poor cerebral perfusion, but this is generally only in upright postures in dysautonomia. As has been mentioned, various visual phenomena can be associated with migraines (a neurologist who specializes in migraines would be the doc to see to explore this more fully). Also, some forms of dysautonomia can be associated with increased risk of increased ocular pressure which can cause distorted vision. This can be assessed by an ophthalmologist and may require treatment to prevent it from developing into glaucoma. Finally, certain eye- or vision-related injuries secondary to head trauma can result in distorted vision, so if you've had a recent syncope in which you hit your head you may want to consult an ophthalmologist or neuro-ophthalmologist regarding that. Have you seen both an ophthalmologist and a neurologist regarding these vision issues? If both of these have resulted in dead ends, have you tried looking for a neuro-ophthalmologist?

As mentioned above, I think you may be confusing a pacemaker with an internal defibrillator. You may want to read this: http://www.defibinfo.com/internal-defibrillators-what-you-need-to-know An internal defibrillator can't be used for sinus tachycardia like what occurs in POTS. It administers a shock (like a regular defibrillator ... you know on TV when a person goes into a potentially fatal heart rhythm and the docs shout "CLEAR!!" and apply the paddles and shock a person?) so you really wouldn't WANT something like that to be shocking you every time you stand up and your heart rate gets fast!! At any rate, it's designed for a different purpose than sinus tachycardia. Pacemakers, on the other hand, can stimulate a too-slow heartbeat to quicken by "pacing" the heart into a faster rhythm, but they can't slow down a fast heart rate. In order for a pacemaker to be helpful in POTS, the patient would either have to have an ablation to destroy the heart's internal "pacemaker" (which research has shown to be likely harmful and actually INCREASE symptoms in POTS patients, contrary to what one might expect) or the heart rate would have to be slowed chemically (i.e. by medications) such that the pacemaker could then mechanically speed it back up to the desired rate. All this being said, it is important to realize that the tachycardia (despite being the namesake of POTS) is not the root cause of all the other signs/symptoms in the syndrome. It is simply the most prominent sign that doctors observe. The tachycardia is the body's compensation mechanism for the underlying failure of the circulatory system to respond properly to gravity in upright positions. For example, for those who do not have syncope with their POTS, this compensatory mechanism is at least doing that much; if you take it away, syncope may very well be added to the list of woes. This is why you find that many dysautonomia specialists are more concerned with raising blood volume (e.g., fludrocortisone, salt/fluid-loading, IV saline therapy, epogen) , promoting vasoconstriction (e.g., midodrine), reducing pooling of blood in dependent limbs and splanchnic bed (e.g., graduated compression stockings, abdominal compression), and increasing skeletal muscle return of venous blood to the heart (e.g., cardiac rehab, PT, countermaneuvers). These four things are targeted closer to the root of the problem, and if you succeed there you can see less compensatory tachycardia.

Non-epileptic "seizures" such as convulsive syncope (i.e. the convulsions that are due to hypoxia from cardiac causes) will not show up on an EEG. Tia, have your seizures been documented on an EEG? Did they ever do video EEG monitoring on an EMU? Have the seizures responded to anti-epileptic medications? If they respond to epileptic medications, it's rather unlikely they are caused by cardiac events because those type of convulsions are non-epileptic (i.e. anoxic). Your description of your seizures sounds very much like tonic-clonic seizures. The rigidity vs. convulsions pattern of tonic-clonic seizures is not generally seen in the non-epileptic convulsions you see with things like convulsive syncope. Loss of bladder control is also consistent with a tonic-clonic seizure, as is the long postictal recovery period. Especially considering you have known triggers, I would think it wouldn't be terribly hard for your docs to just admit you to an EMU and elicit one of your seizures under video EEG to confirm the nature of it. Has this been attempted? As far as cardiac monitoring goes, if an epileptic cause cannot be found, short term event monitoring might be helpful. If that is insufficient, there are always implantable loop recorders that could offer longer term monitoring if you were willing to undergo the minor surgery (and possible scarring) to seek out an answer.

Although the answer may be different for some (i.e. with chiari, etc.), generally speaking, yes this is from the redistribution of blood that occurs with these positional changes. Depending on how you are changing position and your unique circulatory abnormalities (yeah, different ones of us can have different circulatory weirdness going on ... more on that in a second...), a number of factors can come into play. Sometimes it can actually be a head rush if you bend over and have a sudden influx of blood into the head. This is possible if the arteries leading up to the head are dilated and allowing a great deal of flow in that direction (giraffes do a great job of NOT having that happen when they put their heads down to drink, as well as not letting too much blood drain away from the head when they reach their heads up to the trees to eat leaves, else they could never survive with such long necks ... maybe a better understanding of their physiology could help us someday!!). Then if you stand back up and that blood drains back away suddenly returning you to your state of hypoperfusion (reduced brain oxygenation)?BAM?symptoms. Stooping down into a crouch is actually one of the "coutermaneuvers" against fainting because it ... well, compresses ... your body, helping to 'squish' blood up into your torso so that your heart can circulate blood to itself and your lungs and brain better. This can actually alleviate the symptoms of presyncope and avert a syncope. As some with syncope know, though, the real problem with this countermaneuver is ... once you're crunched up like that, if you try to stand back up, the blood kind of 'drains' back out to your dependent limbs and you're back where you started. It's a handy short-term solution, but I've been left more than once in a crouch going, "now what?" It is actually a known way to purposely bring on a faint to perform such a crouch-then-stand properly timed concurrently with the Valsalva maneuver. Which is to say, if you're accidentally forcibly holding your breath and then releasing it, or straining somehow whilst bending down/crouching over, this can be part of the problem too ... especially since those of us with certain types of autonomic dysfunction tend to have overshoot in one phase of the Valsalva (one of the ways we can be different ... that varies depending on the type of dysautonomia). For any who have read Dr. Julian Stewart's work on high flow/low flow/normal flow POTS, you're familiar with the idea that there can be localized abnormalities in the bloodflow of POTSies. Some who have been through comprehensive autonomic testing may recall being told they have "hyperkinetic circulation" ... some have "peripheral clampdown" (and clampdown may be more notable in those on vasoconstrictors because obviously the medication is promoting constriction) ... etc. Transcranial doppler testing in research has shown abnormalities in the cerebral artery velocity in patients with dysautonomia. I think the takehome lesson is that our blood vessels are on the wonky side when it comes to constriction and dilation!! These are essential functions that normally enable a person to rapidly change positions without experiencing symptoms ... instead, our blood may be more at the mercy of gravity, and this can make us quite symptomatic. One other note: for those who aren't helped by slowing down position changes, those little reach grabbers are available at durable medical equipment supply stores and can be a lifesaver: http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Dhpc&field-keywords=reacher&x=0&y=0

I know you already said that none of the migraine meds worked, but I just wanted to throw this out there because it worked for me on a type of migraines I had that weren't responding to the regular migraine meds either. I occasionally have these "humdinger" migraines that go on for multiple days at a time and cause severe mental confusion (such that I seem like I have full-blown Alzheimer's). Although my "normal" migraines usually respond to oral triptan medication (specifically, Maxalt-MLT ... I had tried Imitrex but had had problems with vomiting it up), these severe multi-day ones did not respond to the Maxalt, even if I took the maximum allowable dose over the course of the migraine. They were miserable and very frustrating to both me and my caregivers. When a new delivery method of one of the triptan medications was developed and my neurologist offered that I could try it, I was skeptical but I tried. It worked like MAGIC. Even though it's not different chemically (at least, I'm 99% sure it's the same type of medication), it definitely works differently for me. I'm guessing this is because it gets into your system so quickly so you can medicate immediately at the onset of symptoms. It's called the Sumavel Dosepro, and it's a needle-less injection (it injects the medication into your thigh or belly using the force of a very strong puff of air, rather than a needle). Each injection comes already "loaded" with the pre-measured dose and they're one-time use, so all you do is follow the instructions to set it to inject, and press it into your thigh or belly and it delivers the medicine. I get a funny taste in my mouth within 30-90 seconds of the injection (yes, that fast) and my symptoms start improving within minutes. I can't say for sure (obviously) that it would work so well for everyone, but it might be worth a try if you haven't tried it yet. http://www.sumaveldosepro.com/

I'm on Depo Provera, which is progestin I think, but I'm feeling too dense tonight to try to figure out how that might apply to the situation you're describing. :-/ My levels are wonky in different ways, and I haven't had some of mine tested that you have results for. I do "third space" fluids like you describe her doing, but not to the extent that you're describing. I don't know if my fluid retention would cycle with my menstrual cycles because on the Depo Provera I don't have menstrual cycles whatsoever, and I've actually been on the Depo since before I got dysauto (was put on it due to reproductive problems years ago after surgery on one of my ovaries). If it's any help, if you DO find out that progestin is helpful and you consider Depo, I personally have been very happy with the Depo Provera injections. Not having menstrual cycles to muck up my dysauto has been *blissful* compared to what I hear other women going through with theirs. Also, it doesn't have interactions with other meds like a lot of oral hormones can, and it's a lot more convenient than taking something daily.

The sensors in your stomach that sense fullness (I believe they are stretch mechanoreceptors but I would have to look it back up in one of my medical textbooks to double-check that as I don't trust my memory 100%) send the message via your vagus nerve to activate your parasympathetic nervous system. Recall that parasympathetic nervous system activity is involved with digestion (and this process is opposed by the sympathetic nervous system, so when for example your body goes into "fight or flight" mode, digestion would be temporarily halted because that bloodflow is needed elsewhere for more urgent purposes like going to your skeletal muscles so you can run away, etc. ... obviously it would be a bit lame if you failed to run away from a predator because you were too busy digesting your sandwich, LOL). I don't know how much gas would have to build up in your stomach to activate the stretch sensors, or if this is even possible to build up that much pressure (I would think one would end up burping before that much pressure would build up unless there were severe dysfunction somewhere blocking its release, but I'm not sure). At any rate, the stomach fullness is one of the triggers for your PNS to get your digestive tract on the move (which is why many feel the urge to defecate soon after eating a meal ... contrary to popular misconception, you're not passing the food you *just* ate, it's that the stimulation of your digestive process via the parasympathetic nervous system has resulted in the urge to have a bowel movement, evacuating whatever is already at the "end of the line" ... i.e. in your colon ... the food you just ate is just making its way into the small intestine (unless you have a GI disorder that affects motility). Aside from mechanoreceptors, another thing for all of us to keep in mind is that some dysautonomia patients test positive for excessive sensitivity to certain hormones that are used to send signals within our autonomic nervous system. This can result in flare-ups of symptoms any time a stimulus triggers the release of one of these hormones to send a message to some remote receptor elsewhere in the body. Personally, I think it's fascinating to read all of the medical literature but when it comes down to my personal day-to-day life it's more useful to just know what my triggers are and either avoid them or (if they're unavoidable) counter them as best as possible, without worrying terribly much about the hows and whys. Most of what I learn in my medical textbook reading isn't going to translate to practical changes in my life, regardless of its applicability to my case. (At least that's been my experience, your mileage may vary.)

Due to the way the anatomy of your ear is, I can't see any conceivable way that a fan blowing near or even directly into your ear could affect your inner ear. There are closed barriers that separate your outer ear from your middle and inner ear (I won't get into a discussion of the middle ear not being a closed system due to the Eustachian tube because it's irrelevant to a discussion of connectivity between the outer and inner ear). Even if you have a rupture in your tympanic membrane ("eardrum") or PE tubes, there still shouldn't be any connection to the inner ear: http://drdavidson.ucsd.edu/portals/0/cmo/CMO_fig01.10.jpg When looking at that diagram, the semicircular canals are the portion of the anatomy involved with vertigo. Speaking of which, the "dizziness" associated with inner ear problems is generally vertigo whereas the "dizziness" associated with dysautonomia is more commonly (though not always ... but this can get into issues of whether there may be comorbidity of other conditions as well) lightheadedness rather than vertigo. See here for a summary of the difference: http://www.questdiagnostics.com/kbase/topic/symptom/dizzi/overview.htm (By they way, if you're wondering if I'm just talking out my tokhes here ... the reason I know all this is due to having a degree in speech and hearing science. I admit it's been a while since I graduated, but I don't think my ear anatomy and physiology is *that* rusty, hehe.) I think the likely explanation is that it was a flare up of your dysauto symptoms; as for what the trigger might have been, sometimes it's hard to say, isn't it? Had you eaten recently? Some dysauto patients do get bouts of postprandial hypotension. Also, while you were on the computer did you have your feet elevated or were they down on the floor? Had you been sitting there an unusually long time for yourself? Some of us have significant blood pooling even just sitting upright with feet on the floor. You may find that you need to keep your feet elevated (or sit cross-legged) if you're going to be upright for a significant length of time to prevent the blood pooling from triggering an episode. When you do have an episode, in addition to loading up on salt and fluids as you did, you may want to try lying in bed with your feet propped up on a stack of pillows to see if improving the bloodflow to your heart, lungs, and brain expedites relief. ... Well, I think that's all the ideas I have for now. Sorry you had to go through that; I hate symptom flare-ups.

All of the info I get on dysautonomia and meds I get from medical journals and from medical textbooks. Sorry I don't know of sources that are accessible for laypeople that provide a more detailed explanation than what has already been given here. However, if your doctor wants to know why fludrocortisone is used in POTS/dysautonomia, it would be extremely easy for a physician to look this up in peer-reviewed journal articles via Google Scholar and/or PubMed or to access autonomic textbooks via a hospital or university medical library (ones that aren't in holdings can be accessed via interlibrary loan). There's really no reason your doctor shouldn't be able to find this information, so if you bring up the name of the drug, your doc should be able to research it quite easily. I'm not a doctor (not in the least!) and I find and read all of this stuff; if your doctor can't, you're in more trouble than you think.

friday7, Considering the dryness, have you been thoroughly evaluated for both thyroid disorders and Sjogren's? Re: fludrocortisone, I'd say it boils down to how well you're already doing without it. You said you already have your BP under control with salt-loading, but didn't mention the extent to which your other symptoms are or aren't resolved. If you're already under good symptom control, I don't see the point in rocking the boat. If you only have mild residual symptoms, you might have luck adding further non-pharmaceutical interventions to your treatment regimen, such as Rx graduated compression hose and/or abdominal compression (if you're not already doing that), or by trying something like physical therapy or cardiac rehab or some other physician recommended exercise program to gradually work up your muscle tone (and skeletal muscle return of blood to the heart). If you're still having moderate to severe symptoms, then fludrocortisone would certainly seem like a natural choice for medication as you've had improvement with salt-loading and fludro. would maximize your salt/fluid retention. I'm surprised to hear you say that you've tried Mestinon but never fludrocortisone. Is there a reason that your docs tried that first? Do you have a contraindication for fludro? Or was there a specific indication that made Mestinon a particularly appropriate choice in your case?

Sarah, Have you gotten any info from your docs on your joint pain? I've had terrible joint pain in my knees and hips that emerged this year (never had this problem in former years of having dysauto), but my docs haven't been very helpful in figuring out the problem. I suspect it could be vascular (perhaps too much localized clampdown, maybe even worsened by the Midodrine? I know peripheral clampdown can occur as a response to the thoracic hypovolemia but am not 100% certain this could be affecting my joints), but my general practitioner doesn't seem convinced and I think she's the one who I would need to get a referral to a vascular specialist. (My cardiologist agreed more with my assessment, so I may try asking him for the referral.) They did x-rays but that didn't show anything, and they also ran blood tests looking for rheumatoid factors, some type of autoimmune marker (?), and whatever other ideas my general practitioner came up with but this GP is new to my case (my last one left the practice--ugh) and I think she's just looking for "normal" things. Is your joint pain worse when your joints are bent? I feel like mine is worse when mine are bent and will alleviate somewhat if I straighten my joints out fully (which obviously isn't practical all the time). Does any medication or anything else help? They suggested I try something anti-inflammatory like Aleve, but it did nothing. I tried pain killers like Tramadol and even Vicodin, but that didn't help either. I wish I knew what the problem is.

tearose, Thanks for clarifying. Sorry if it seemed like I jumped down your throat. Been having a rotten time of things and sometimes I just feel like there's a world between me and the people who can still manage to function in life with this stuff. You're right that the computer is a difficult medium for good communication. It might be better if we had little disclaimer tags on our posts that showed how sick we are on a given day, so people wouldn't take offense when I'm crabby because I feel like poo or think I'm crazy when really I just don't make sense because I'm not getting enough oxygen to my brain.

Pickles are a good source of salt (and won't bulk you up on calories), olives are also salty, I keep veggie bouillon cubes from the organic aisle on hand (to drink or cook with), Powerade Zero (no calories) is my favorite), if you live in an area of the country that has Kroger grocery stores they have a store brand drink mix similar to Crystal light but that has electrolytes including sodium in it (and you can always add more), a potato with skin-on has more potassium than a banana so salting up one of those is a good electrolyte one-two punch (must eat the skin because hardly any of the potassium is in the inner flesh), cucumbers taste great for snacking salted (I salt each bite individually so I get a LOT in this way) and I've heard of people doing the same with watermelon though I've never tried it personally ... that's all I can think of right now. Oh, if you're wary of most frozen dinners because of the other ingredients in them but are jealous of those lofty sodium counts, check out Amy's ... they have frozen dinners, pizzas, "hot pocket" type things, pot pies, rice bowls ... all sorts of stuff ... and it's all organic. They even have diary- or gluten- free versions of some of the things (the soy mac and cheese is the best I've ever had ... as far as frozen dinner goes ... best comfort food for when you're unable to cook for yourself, mmmmmm). http://www.amys.com/index.php

Can you get an MRI? I would think that would be optimal, especially before you get on a plane.

I normally go toward the tachy side, but have on rare occasion when sick (or with side effects from medications) gone brady. Usually it coincides with my BP going the opposite way as normal for me as well ... so instead of me having my usual drops in BP and tachy, my BP will go up and I'll get brady. It has always righted itself once I wasn't sick anymore (or we did something about the offending medication). Hopefully the doc will have something to say that will be helpful. I often can limp along better with a "tank up" of IV fluids if I'm struggling due to the extra stress of being sick with a cold or something, but I know this varies from person to person whether this is helpful or even indicated at all or not.

Don't you think that's a bit of an oversimplification? It's not like every person with dysautonomia is cut out with a cookie cutter. Some folks are medicated out the hoo-ha, getting IV treatments multiple times a week, and are still bedridden much or even all of the time. The severity and prognosis of dysautonomia runs the gamut from mild and reversible to profound and terminal.

I wear custom-fitted Mediven 40-50 mmHg thigh-highs. Remember that compression is graduated so the bulk of the compression is at the bottom and very little is at the top, so if you need substantial abdominal compression you're better off addressing it with a separate abdominal binder than relying on waist-high compression stockings. Moreover, using the restroom will be much more convenient in thigh-highs especially at the higher levels of compression (30-40 or 40-50, which are generally the ones recommended for dysauto folks anyway). However, waist-highs don't have the issue of the elastic wearing out over time and possibly starting to "creep" down on you. (If insurance covers your Rx for compression stockings, they usually cover about 3 pairs at a time, and proper washing can make the elastic last better. Also, there's a special adhesive stuff that can be purchased to help keep them up if needed that some people like.) Knee-highs are specifically NOT recommended for dysautonomia (I can find you the journal article if you need the reference for your physician--PM me if you want it); if I recall correctly the explanation was that the fluids just pool directly above the level of the stocking when knee-highs are worn, which obviously doesn't fix the problem.

I take one med (for cataplexy associated with narcolepsy) that has serotonin activity daily. I have Tramadol available PRN for pain (also with serotonin activity) and both of my PRN acute attack migraine meds (not to be taken concurrently, they're an either/or thing where I choose which one is right for the type of migraine I'm having) also have serotonin warnings. My rule for myself is never to combine more than 2. The cataplexy medicine is taken last thing before bedtime. So, for example, the other day I took a Tramadol early in the day. Later that night I had a migraine and had to use my Sumavel Dosepro for my migraine. To avoid the potential of serotonin syndrome, I skipped my dose of Imipramine (my cataplexy medication) that evening and just recontinued it as normal the next day. My home nurse agreed with my judgment when she came to do my medications the next day and saw the skipped dose, so I think this is an acceptable strategy if you're uneasy about it (so long as it's a medication that you can miss doses of safely ... check with your doc or pharmacist of course if you don't know). I also asked my pharmacist about it when I was Rxed more serotonin meds, because I was concerned that an awful lot of the symptoms of serotonin syndrome sounded like symptoms I already have (at least from time-to-time) with my dysautonomia. She reassured me that the severity of the symptoms and the onset of the symptoms in a cluster all together would likely alert me (and/or those around me) that something different than my "normal" was going on so we would know to go to the hospital. I think it's good to be aware of, and to be mindful of not heaping more and more serotonin meds on top of each other, but not something we have to totally panic about if we have to take two at a time.

I just wanted to chime in that it's not 100% necessary that you be awake (i.e. alert) during the procedure. For personal reasons, this was not an option for me and my cardiologist was comfortable having me fully sedated under general anesthesia for my EP study/(possible) ablation. In doing the EP study, my doctor ended up opting against the ablation, but I'm still glad I went forward with the EP study either way; I think it was just one of many steps for me in exploring the different possible avenues of my case. The procedure was stressful for my loved ones who were waiting for me because it took a little longer than initially anticipated, but with me being "out" for it, it really wasn't bad for me at all. If you're considering it, I would definitely say at least talk to an electrophysiologist. You have nothing to lose in having that conversation at least. From there you can decide together with the doctor whether an EP study is right for you, and consider the pros and cons of a possible ablation. Best, h.

I was expecting something entirely different when I came into this thread, quite honestly. Chrissy, it sounds to me (and I could be waaaaayy off base here because I'm just reading a couple paragraphs off the computer) like this problem actually had relatively little to do with your dysautonomia; the bulk of it sounds like a problem with maturity on the part of the guy you (are/were?) dating. I hope that doesn't come off as harsh ... in a way maybe it can be a relief, because if the problem lies in him, then it's nothing to do with you or your illness, and you don't have to lose hope that you can find someone who will complement your life well and make you happy!! I've been with the same guy since 4.5 months after I first got dysautonomia. I would be a HUGE liar to say that it doesn't put a strain on our relationship; we're in a rough patch right now. But as the years have gone by he has proven to be everything that I could ever hope for and more in a best friend, a lover, and a caregiver. Those are big shoes to fill, and it's no surprise to me that external stressors take their toll on our relationship from time to time. Even so, I believe it is possible to find a "happily ever after" ... dysautonomia be darned!

Sorry, I should have mentioned ... it may be useful for you to know that the research grants are mainly being funneled through Vanderbilt. As far as I know, they've done the bulk of the research on IV saline and OI dysautonomias. They had a current study running on it a while back ... don't know if it's still ongoing or not but you may want to look on the NIH's website to see if that is still going on or not. You can search their clinical trials for it to see if it has ended or not. Send me a private message if you have any other questions ... I'll try to keep an eye out for one (don't know if I'd see a reply in this thread in a timely manner).

Have you tried searching on pubmed and google scholar? That's where I got all the journal articles that I gave my doc as references for this to give to my insurance. There are a TON of them. Here are the links to pubmed and google scholar if you don't have them: http://scholar.google.com/ http://www.ncbi.nlm.nih.gov/pubmed/ Here's what I sent my doc, but seriously you can find more. I just gave up after I felt like I had gotten enough, but if you think you need more ... go fish. Good luck with your doctor!

Yikes! 52/48?! Were you still lying down? Did they take you in for IVs? Have you been tested for hypovolemia? Were you dehydrated at the time, or do your systolic and diastolic always stay that close together (pulse pressure narrow) even after you hit the floor and are supine for a few minutes?