Calling All Fainters!!!! What Kind Of Injuries Have You Had??

[jenglynn]

Hi Everyone!

I am curious about this. I know not everyone *** POTS actually has syncope- but for those of you who do- Do you frequently get injured from your syncopal episodes?

I am pretty much always covered in bruises... all over my body. Not just from syncope, but I have very poor balance. I do not "walk" except very rarely because of my fall risk. Our home is not wheelchair accesible at this point and we have 3 levels. So when I need to move around the house, I crawl. I still have syncope just as frequency crawling as I did walking, but I am closer to the ground and it is rare that I would get seriously injured because I am close to the ground.

SO... my question for my fellow fainters, how often do you get injured and how serious are the injuries? It seems like I have had some pretty severe injuries from my spells. I have had 9 documented concussions and I am sure the true number is much higher. I have had 4 occasions where I have fallen and had such a serious "head injury" that I actually knocked myself out, in addition to the syncope (I guess there is a difference). All 4 of these epiosodes have included pretty serious open wounds in my head. One on the forehead, one right above my temple, and 2 that have split the back of my skull open. I have been told my every neurologist that I have seen the #1 priority at this point is to avoid ANY head trauma for the next year preferably ( well, perferably forever I am sure) but I guess the next year is crucial. So I wear my helmet whenever I am even crawling. All of my neurologists have warned me that howthe helmet will not necessarily prevent a concussion because because I am so prone. My insurance wlll not cover the helmet that the doctors want me to get but it is $$$PRICEY$$$$ It is almost like what some of the helmets a few of the NFL players wear who have had concussions. I had my first round of cognitive testing last week and was pretty discouraged at the amount of cognitive problems I am already experiencing: Retention issues, short term memory, speech problems (I guess I speak haltingly because I have a problem with finding the right word), lots of word recall issues, almost constant double vision, headaches ALL the time. I do have Post Concussion Syndrome- and always will- but again- I have been told by everyone that even if I have to spend a year in bed for a year- preventing another head trauma is absolutely crucial at this point.

So... my fellow fainters have these types of issues as well? I've never actually SEEN anyone faint, believe it or not. I know some people maybe are more graceful when they fall. I am not at all graceful. I tend to always fall straight backward and because the head is heavy- It seems that 80-90% of the time I hit my head. Some people just crumble and don't really hurt themselves. Because I am not awake, It doesn't seem like I can control it. I guess my question is this: Am I the exception or the rule? Do most of you who ave syncope- do you injure yourselves? Or are you one of the graceful fainters who just kind of crumple and maybe get some bruising but not serious injuries? I guess I am just wondering if I am an exception because I have had neurologists tell me that it is unusual for somone with autonomic neuropathy w/ syncope to have so many serious injuries... or do most of us who have syncope have a lot of the same sort of injuries... lots of concussions and loss of cognitive function to that level. I don't know if this even makes a difference but I guess I am just curious.

Thank you!

Jen

[issie]

Not a fainter Jen, thank goodness. Just wanted to acknowledge your pain and hope that you will find some relief very soon.

(((((HUGS))))))))

Issie

[goodnuff77]

I am a fainter and have had so many head injury's I'm labled with Tramitic brain injury. I tend to fall hard. I've woken up in a pool of blood on the floor several times. Fallen down stairs and have scars and my fore head and back of head. The rest of me looks like I'm a skateboarder or something. Scars on arms and legs. I have on my hospital records no more exrays unless absoulotely neccessery. I've also bumped my temple and it sweeled out like a base ball and turned in to a large pecentage of my face bruising like I was in a bar fight.

[Lemons2lemonade]

Do you all get warnings or does it come on suddenly?

[goodnuff77]

I sometimes get warning' and sometimes not. My first episode was while sitting in a car, began sweating, disorinted and chest pain

[Tautologist]

I don't black out, but do collapse without warning most days. I've never injured myself badly because I have sone control over which direction I fall in, plus a bit of luck. The worst was only a cut on my hand where a mug I was holding shattered on the floor and my hand came down on top.

It must be very difficult to disentangle everything that's going on if you keep hitting your head as well.

[kayjay]

Broke my nose!

[jenglynn]

Ugh... Sorry ANY of you have to get injured. Goodnuff, yours sounds like mine unfortunately. I also have been diagnosed with TBI. And now cognitive dysfunction.

Lemons- I used to get a lot of warning but starting around Nov. the warnings got less and less. I've been a fainter since childhood so I'm very used to it- but up until this "flare" I MIGHT faint 2-3 x a month at most- starting at age 10 or 11. In Nov. when I was still walking I was fainting 10-20x a day. And in Nov. alone I had 3 traumatic brain injuries and bad concussions- and one was terrible because I was out so long and my poor 11 year old found me in our bathroom in a pool of blood- I was bleeding to death. Luckily he did not panic and saved my life (I've got a smart boy but I'm always just heartbroken when I think of what that was like for him or if it haunts him. I was admitted after that one and I stayed in the hospital for almost 2 months- not just because of the head injury- they transferred me to Mayo and I began all of that testing. But EVEN at Mayo- they told me NO walking for a long time. I know that conserving my noodle is of utmost priority. I did have one more pretty bad concussion but that came from sitting (kind of embarrassing but. Was trying to pee and suffer from bad urinary retention and I must have sat there too long because I woke up on the floor with a bump on my forehead the size of a grapefruit and 3 gashes. Looks like I hit the sink, bounced and hit the tank of the toilet, then the floor. That was the worst concussion because it totally changed my personality. I was a raving lunatic for 2 weeks and aggressive but didn't realize it. My doctors have the same rule for me- NO X-rays or CTs unless it's a life threatening situation- I've had so many. I guess frontal lobe concussions like that one cause different types of reactions. Oddly, I didn't see any of it do that only made me more angry. That was the beginning of Feb. and have not had a oncusdion since that I know of, but I knocked my head or banged it pretty hard so ho knows? At this point it doesn't take much.

Sometimes it's hard though to differentiate between post concussion cognitive dysfunction or autonomic neuropathy/POTS cognitive dysfunction. Or if there even IS a difference. I just know I can't bang my head anymore. I worry a LOT about what I will be like as I age (IF I get lucky enough to age). The studies so far are not super encouraging!

Thank you Issie!!! I'm glad you don't faint and I feel your hugs from here!

And Kayjay- I usually fall back for some reason but once in my teens fell forward and broke my nose!!!! Ouch! And it healed awful.

And you're right, Tautologist- it is almost impossible and I don't even know that they CAN.

The last time concussion was so strange- usually I faint very quickly after standing... But the last time because I'd been sitting so long I do remember my ears starting to ring- a warning sign, and I looked at my legs and it looked like every drop of blood in my body had pooled down there- next thing I know I'm waking up off the floor. I had 3 gashes, but no bleeding. Two "black" eyes but they were this odd green color and the whole rest of my face was YELLOW yellow. Like I had jaundice, I guess because I had no blood in my face at all when I fell, the bruising was different. It was really strange. I had to get stitches for these non-bleeding gashes because they were deep and future scarring- but my BP stayed so low they never bled.

Jen

[jenglynn]

It's kind of a Catch 22- I will. My autonomic neuropathy will NEVER get better without getting vertical- but I can't injure myself anymore or I won't be me. That last concussion convinced me of that- I'm an easy going person but this rage and anger was crazy.

I do walk a little every day, but only with someone with me- and I stand several times a day, by my bed, again with someone with me. I also do the gradual raising of myself with pillows during the day. Still can't get past that 45-60 second mark. I try to increase.. But never stay conscious beyond 60 seconds. Do my recumbent bike (with someone there) every day- and leg exercises and resistance bands for my arms- in bed- every day 2x a day. I don't feel I'm losing strength...

[janiedelite]

Hi Jen,

I don't faint either, but wanted to say that I think your perseverance is amazing. I'm so glad you found our forum. People like you make DINET the great place that it is. Thank you for encouraging others while you're going through so much yourself!

[Lemons2lemonade]

Jen, thank you for sharing your experience, you are a very brave and determined woman! I read about the expensive helmets that the drs want you to get. Have you ever tried a cheaper helmet?

[jenglynn]

I do have a cheaper helmet, and I DO use it but the doctors have told me it is almost a waste of time. I guess I can get a concussion even with a helmet on. But at least I am hoping to prevent open wounds and maybe reduce the severity of a concussion.

Thank you all for the kind words. I guess I don't think of it as strength or anything other than surviving just like each of you do every single day. We all face our own battles. I just wish that my children and husband didn't have to suffer through this with me. THAT is what makes me sad... I just think of everything my children especially have had to "adapt" to. A bedridden mom should not be the normal for them.

The fainting has become a lot less... but mostly because I am hardly ever out of bed. I crawl around a lot and I still faint while crawling but it is pretty rare that I injure myself seriously. Bruises and bumps, but nothing serious.

Jen

[bunny]

Let's see. Lots of questions.

Injuries: countless bruises, cuts, scrapes, chipped a front tooth, and broken wrist.

I don't find myself getting seriously injured all that often these days, mainly because of the precautions I take and being aware of my body's patterns and health. Still get the occasional bruise.

I've already suffered enough dain bramage from anorexia, and the brain shrinkage thereof makes me even more susceptible to a concussion. I do wear a $30 double-layer foam karate helmet when I'm starting to feel rough or will be putting myself in a situation where I usually am symptomatic (exhausted, showering, eating a heavy meal, sick, etc.). I wasn't anywhere near as compliant about wearing it until I chipped a front tooth just as I was getting out of the shower. I'm still not a real fan of wearing it, mainly because I try to think that I'm not sick and want to live a normal life. I've been slowly getting more accepting of the fact that I am sick and that I do need it. Slowly being the key word.

I also have osteoporosis and have since my teenage years. When I broke my wrist, it was a fall where I didn't go completely out but just lost my balance. That took over a year to heal, with 6+ months in a full-arm cast, another 6 in a hard spllnt. So, I often will put on wrist braces at the same time I'm putting on the helmet. As the many marks on the helmet and braces attest, they've served their purposes many times over and kept me from sustaining any head/wrist injuries. I'm not sure if I'm more cautious when wearing them or if they somehow have helped, but I'm having fewer & fewer "how and when did I get that bruise?" moments.

I keep tabs on my body and have been very open with my friends about my condition, so we all know what to expect. It also saves me from having them panic if I pass out when they're around. It's not uncommon for one of them ask me to check my vitals if they think I'm not doing well. It's nice to have a second (or third or more) set of eyes' objective perspective on what's going on. I do check & log my vitals a couple of times a day, but I don't worry about it. I use the data to see how my body's doing in the long-run and also as a heads-up as to what the day might bring. If my BP's low at night, I know I'm probably going to have a tough time waking up. Low BP in the morning and I know the shower will make me dizzy and to skip a heavy breakfast. If I'm sick (or getting sick & don't even feel it yet) my pulse will be higher than normal. There's more, but you get the idea. I see checking vitals as a tool, rather than goals. I don't obsess over the vitals #s any more/less than I would the temperature gauge outside -- it's just one of many signs I can use if I wish to find patterns. If I go a week without checking them, no problem. No worries. They can be reassuring though.

I've been blessed to have a very keen sense of balance. I can be very dizzy yet still manage to keep myself upright using visual cues. Feels weird but works...until my vision starts to black out and then I'm left with no references for balance and usually feeling quite weak by that point.

When I faint, I crumple to the ground. I don't know that I'd call it graceful. It's more a matter of planning. I usually get a warning so by the time I'm ready to faint I've tried to get myself into a safe place/safe position so passing out won't cause my body to move or at least I'm a lot closer to the ground if I do go down. Sometimes I run out of steam/balance before I can get to a safe place. I do have two friends who faint somewhat regularly and I've seen both of them pass out before. Both of them have had multiple concussions from fainting. One is the crumple-type, the other one tends to fall backwards with her legs locked. Quite scary to see her hit the ground that way, even if it was on carpet.

Kind of off-topic, but is it possible for you to get a tilt table or supine stander for home? I'm wondering if maybe a tilt table/stander at a very gentle angle, nowhere near the normal tilt table test angles, might help. I know physical therapists use this approach in rehab facilities with people who've been bedridden for an extended period of time. I also know that all of the major space agencies out there use this as well. Your dysautonomia may not be due to deconditioning, but bed-rest of any major length will cause deconditioning. Fun blog of a participant in one of NASA's bed-rest studies: http://pillownaut.blogspot.com/2009_05_01_archive.html Of note, she was a "healthy" young woman at the beginning of the study and showed the classic symptoms of POTS after an extended time of bedrest.

Hang in there and stay safe! Some day this will all be behind you.

[jenglynn]

Wow! Thanks for all the info, Bunny!! That's interesting you have 2 friends who faints.. One crumbles and one falls straight back.

We do have a tilt table thing and I've used it a lot since I got home from the hospital, gradually adjusting angles. So far, it hasn't helped anything, but I still use it and pray one day it will. I really don't believe my autonomic symptoms will improve at all until my horribly aggressive autoimmune disease is under control. Its continually attacking my autonomic system... So everything I try won't really "work" until that been calmed down or in remission or whatever you call it.

Sorry about the long, rambling posts and all the questions. I was just talking about this with my dad and he said he noticed this happened to me in Nov. sometime (I received 3 very serious head traumas/concussions) in Nov. My initial cognitive dysfunction test showed a big change from 3 years ago when I had my last one. The non-stop talking/writing rambling and babbling is a result of my brain injuries but I can't remember what she called it. It was something completely new to me and has shocked my family. I had always been a very clear, concise, to the point person, especially in writing. I would say of everything, for my family, this has been the most obvious change after the injuries: rambling, babbling, talking on and on and on, repeating myself.. Etc. I guess I'm making excuses, not meaning to, but maybe explaining a little why my posts are so long and rambling. I am in cognitive therapy to work on all of these things but it takes time and it was certainly a hard pill to swallow. Losing brain function is by far the worst thing to happen to me with POTS.

Jen

[bunny]

Fainting and eating disorders (anorexia/bulimia) tend to go hand-in-hand with the more severe cases. Also with the most severe cases comes long-term damage.

I understand exactly what you feel w/regards to losing brain function. Fortunately my focus is back as long as my brain has oxygen, but speed/agility were substantially less. I used to be one of the top math students in the country. Now I'm reduced to a calculator for even basic math. Strangely, I can still do calculus in my head, which is often how I'll back-door calculations of basic math these days. It's changed my personality quite a bit as well. I used to be hyper-focused on math & science. Now I'm far more balanced in my strengths and my creative side has flourished. I'm also far more laid-back. I used to be a type-A adrenaline junkie. Now I'm perfectly content to sit back and watch the world go by.

Also, some 12 years out of the worst of it, my brain actually has started to recover. I'm noticing memory improvements and occasionally parts of my mind will fire back up again. I think much of it has been re-assigning of tasks to different parts of the brain, but I also sense that some of the damaged areas have somehow repaired themselves. In some cases, I'll remember things I'd completely forgotten or even have blocks of time in my memory reappear. Quite encouraging. So the brain CAN recover from many things. It's just slow and often frustrating. Sometimes I don't realize just how far I've come until friends mention it.

Tilt training didn't start being effective for me until I consistently did it daily and pushed myself well into presyncope, sometimes syncope. Initially all it did was make me feel rotten, but over time it's paid off. Considering I only lasted ~6-7 mins for my first tilt table test and I can do an hour now, it's working for me, even if it's not the most pleasant thing in the world.

[abbyw]

I just want to say that the two of you are amazing. May G-d give you strength to persevere and may you both recover fully and quickly!

[bunny]

Abbyw: Thank you for such kind words. I don't know that I'd ever think of myself as amazing. Others yes, myself, no. I like to think of it as I'm just too stubborn to die. I think some of my doctors would agree with my stubborn theory. They say The Lord only gives us what we can handle. At times I wish I wasn't able to handle so much.

Compared to where I've been health-wise, this is actually the best I've been since I was a young child. As a result, I actually feel fortunate and thankful that my ailments are what they are today. Everything's relative. The lower the depths you've reached in life, the greater the enjoyment you get from the pleasant parts. Yes, even two kind sentences of a stranger on the internet bring a warm smile to my face.

[issie]

Bunny,

I so agree with you. Being a lifer myself - the slightest bit of an improvement is duly noted and appreciated. It makes you pay attention to the small things in life that give enjoyment. And yes, we all need those kind words of encouragement - don't we?

Issie

[jenglynn]

I also want to thank everyone for the kind words. I would never consider myself an inspiration, because this is all I have known. That said, I have gone through stages of relative health and unless you've experienced the difficulties- you never appreciate the beauty and wonder of the good times.

I use the analogy of my first marriage a lot. We married young- he was a jerk. A compulsive gambler. Abusive. But, I grew up in a home with two alcoholic, drug addict, physically and verbally abusive parents who were so beyond the term "neglecting" I can't even describe it. I have a brother 3 years younger- when asked about his Mom- he says me. I took care of him. My dad was a long haul truck driver- gone weeks at a time- by the time I was 10 years old- he gave me the household money or nothing would be paid. 80% of nights, my mom spent the night elsewhere, my dad on the road. I paid bills, bought groceries, clothes as needed, got my brother and I to school. I moved out as soon as I was able, took my brother with me, and he lived with me through high school. He started college the year I graduated college- abd he graduated too- and I put him through myself. All I ever knew was to be a caretaker- so I was immediately drawn to my EX and I lived in a misery of a marriage for 10 years except the four miracles that I call my children that came from it. He spent every spare dime he could at casinos and didn't care if his kids had food, shelter or clothes. He verbally abused me and severely beat me on a regular basis. All the while, I was sick Ith this debilitating illness- but with the help of a lot of adrenaline I guess, I'm a survivor. Finally one day I looked at my oldest daughter, 9 years old, sitting on the couch reading a book while her father and I were in a heated, non physical fight- I realized- this was her "normal" just like mine was as a child. I filed for divorce the next day. He almost killed me in the process, but again, I'm a SURVIVOR.

I tell that story because I re-married the most wonderful, loving and compassionate man. I truly believe I would not value him and love him as deeply had I not experienced what I did. Of course, it's much better not to have to get to it that way- but there are values to be found in our trials if we look. Every bad day makes us appreciate the good ones so much more. I look at life as a gift and even now, when I'm physically at my worst, I value every day I'm alive because that means I'm one more day closer to getting better, one more day with my family, and one more day to love and be loved.

Jen

[issie]

WOW, Jen - you are a survivor.

Issie

[jenglynn]

Thanks Issie! I sure am!! Very proud to say that I am still succeeding. I have often wondered if with my lifelong autonomic and autoimmune issues if the severe stress, adrenaline and cortisol running through my veins for the majority of my life has contributed to the severity of issues I have now? Probably no way to know for sure- but I am sure it didn't HELP at all!

Jen

[bunny]

Jen,

I find your background rather familiar. My family life was chaotic. Mom was bipolar + poss. schizophrenic, Dad was bipolar. Avoidance was one of their favorite strategies, so both heavily self-medicated with various things, usually prescriptions (tranquilizer du jour) and/or alcohol to wash it down. I never knew what I was coming home to. It was a very insulated family, so whatever happened at home stayed at home and there weren't any relatives nearby. I didn't know that this was abnormal and just tried to do the best I could, figuring that everyone else my age was going through the same thing at home and equally was told to keep it at home. Now that I look back, I'm not sure how I managed to make it with so few broken bones and how I stayed sane.

I also found myself falling into a relationship where my girlfriend ended up being almost a carbon copy of my mother. Similarly, I'm now dating a woman who is gentle, kind, and caring -- indeed the exact opposite of what I was raised with. Indeed, what I've been through has made me appreciate her and each day more & more.

I also find you calling each day a gift hitting very close to home. I still very clearly remember my first hospital stay. Well, not much about being brought in as I was out of it -- I was carried in by friends as I was too weak to walk/stand, was having trouble reading/understanding English (but for some reason I apparently could still read & understand Spanish), and fading in & out of consciousness, mostly out as the day progressed. When I finally woke up late the next day, I knew I had cheated death. First that cheesy Hollywood out-of-body experience apparently has some truth to it. I remember my sense of hearing waking up first and hearing the noises of the hospital, the IV pump, the feeding tube pump, the beeping of the monitors. With my eyes still closed, I felt the coolness of the sheets, then ran my fingers over my body and realized I was still alive. It's the most amazing, exciting, yet humbling feeling. I wish everyone could somehow feel that without having to be near-death to experience it. They would never live their life the same.

Indeed, I've viewed every day since then as bonus time. At the end of each day I'm still praying, thankful to have had the opportunity to experience just one more day, even if it was one I'd not want to remember. I still got that one more day nonetheless.

I also think you're probably right on the prolonged stress hormones being a factor in this. Stress has all sorts of physical ramifications.

By all means, look over your past and view it with a great sense of accomplishment. You ARE a survivor, a successful one at that. If you can make it through all of that, you're definitely going to make it through your autonomic & autoimmune issues. This is a mere speed bump compared to the mountains you've already scaled.