For a good explanation in laymans terms of Dysautonomia click here.

 

Introduction:

This is probably the first time, my voice and my voice only...in adult form has given voice to this. I remember as a child wondering if I would ever be big enough to explain it all. I remember hoping I would be brave enough and strong enough to do it one day. I remember hoping that I would remember back and be proud of myself. My imagination got me thru my childhood. One thought in particular gave me comfort....I remember imagining my future self (of course I would understand my little self perfectly) coming back in time and giving my little self a hug and saying "it is ok, I fixed it."

  

 

“I am not normal, but my blood work is”

-quote from blog at potsplace.com

 

 

My Story:

 

My mother says I may have been having problems by the age of 3-4 years old, as she would find me hiding in dark closets curled up in a ball sucking my thumb. I would say “I was scared” when she asked me why.

 

The first time I can remember having a problem I was 5 years old, standing in the school library behind a stack of books. I got a tingly feeling in my head then waves of hot & cold, then tunnel vision set in, then a sensation of a very forceful and slow heartbeat, I felt like I could not breath, then a buzzing / fogginess in my ears till I could not hear anything, nausea and that horrible yucky feeling in my tummy and head, my heart felt mushy. I felt like I was struggling to survive.  So I did the instinctive thing ,and lay down till it was over. I got up and it started again. For a while I muddled thru it and then went back to the story group and found a pillow to lie down on. Pale, sweaty, hair on the back of my neck soaked, tummy ache, head ache.....sucked my thumb. I can remember what I was wearing and what the library looked like at the time, to this day. Feeling like I was going to die in public, where no one understood, where people were more apt to think I just wanted to avoid school...was to forever alter me. 

Later in school (1st - 3rd grade): At 6 years old I passed out in the car and my mom could not wake me. There is a note in my file "allergy to Carbon Monoxide." Like there are some people walking around who can breath it all day?? I had tests but they found nothing. These spells continued, sometimes I would pass out and my mother could not wake me, the Docs called these Hypersomnolence, but it clearly was not. Other times I would just stare, with no blinking, these were termed, Daydreaming. In class I would put my head down on the desk or lay down on the floor. I would lean on an arm, sitting up straight could be so hard. Gravity was not my friend. I felt like I was on the inside of my body looking out. My ballet teacher helped me with that one. Sometimes I would get heart flutters where I would cough to stop them. Sometimes my glands would swell up with no flu or anything. I would get what looked like colored lightning bolts or colored blobs or sparkles moving thru my field of vision...or partial tunnel vision. I had had them so long I thought they were normal. My teachers would ask me what I was doing, when I would fidget around to see the board, and I would say 'waiting for the floating blobs to go away'. I was not able to describe what was going on. Like I said I had had the tunnel vision and blobs and colors so long, they were “normal” for me. My mother laughed (in a good way) years later when I told her about the colored spots. I was shocked when she said she had never had them and that most people did not... I also had what my mother was sure was a lazy eye but the docs could not see it.

 

When I felt bad it felt like I was spinning or swaying when I was resting. I did not know what it was, and it was kind of scary, so I used to pretend that G-d was rocking me to sleep. I learned to turn my brain off.

In fourth grade it blew up.... months of it, sometimes worse and sometimes better. But it instills a sense of fear. Where will I suddenly go from feeling bad to feeling horrid? What will I do and say? I can't explain anything when it hits...everything is so far away and the words I hear myself say are so garbled. It feels like I am going to die when it gets bad..  I don’t want to have to lay down on a dirty floor somewhere or on a dirty bathroom floor so I can hide it & stop it ..... Sometimes I would just feel very "prone" to it happening, like any little trigger could do the trick. I was always looking for somewhere to lay down or sit down. I had a lot of what they call pre-syncope where the tunnel does not completely close, headaches and tummy aches.. I got used to the pre-syncope and honestly thought it was normal, but I just could not find a way to deal with it. However, other times I was just tired, achy, nauseous and yucky feeling. I had headaches and tummy aches and was finally put in the hospital for a few days to evaluate the stomach part of it. Sometimes I even felt almost like I had too much O2 or pressure in the brain…. Even when I was not having near syncopal problems I still had that malaise, the fatigue, the achy feeling, like I was just maintaining a delicate balance...I was too little to explain really, I focused on the funny "ache in my tummy" and the "worms in my head" (besides the other things were normal, remember?). Abdominal migraines they said and it may have been as I saw squiggles etc.... I also bruised for no reason...like sleeping with one leg resting on the edge of the water bed frame could cause big bruises..Anyway, they ran a ton of tests and tried lots of medicines. Eventually I managed a status quo and quit complaining, because it did not seem to do any good, and I hated being under the microscope. It must have been psychological they said. My parents divorced that year, must have been related to that, they said. Now, nothing happens in a vacuum and I am sure it probably exacerbated it...but it was not the whole shebang. 

 

Then, after a time, it lessened even more to a more tolerable level..or I got used to it?.. I went back to enjoying swimming (for play) and ballet one time a week.

Thru out my whole life my medical record has been dotted w/ bad times called "viral illness's" by doctors. Illnesses that seemed like the flu, only without the flu.

 

At eleven I was hospitalized again with another bad flare up, and then followed up by more doctors. I still passed out or nearly did a lot.... I was so tired!  They chased the symptoms that were enumerated intensely, headache and stomach queasiness, which I definitely had in spades and for weeks at a time. I had aches and pains, bruises for no reason too. The rest of my symptoms were not really understood by them, ie: they dismissed them, so I thought the problem must lie with they symptoms they were concerned with as well. They are doctors, they are supposed to know, right? More medicines and more tests were done. They did a spinal tap.  In the hospital they initially put me in the psych ward, then my mother objected...and I was told that (after being told to rate my headaches, and telling them that what I had that day was a 8) that “8's are what people rate their pain as, after open heart surgery”. So I am guessing I was not being taken to seriously?? Anyway I was then put in the neurological department with children who had facial deformities due to their problems. I was terrified. I asked my mother one night if "my headaches and stuff keep up, will I look like that?" I hated being interrogated, I hated the questions, it’s not like answering them did any good. The medicines 'side effects' were like a list of things that would happen if I took that medication. Half the time the medicines made me feel terrible too, just in a different way than my normal terrible. I just felt so bad and the headaches would not go away and the pre-fainting aura and faintings would not go away. Sometimes just pushing up, on one arm, in bed to roll over would cause it. I was really scared to leave the house and the safety of my mother. What was I supposed to tell people at school if I suddenly felt awful? I had nothing wrong with me...thats what all the tests said... So, I learned to dream and cope. I was so tired of being interrogated and not being beleived that I just wanted to be left alone. I did not want to face people who did not understand. This is no surprise to me now, that I wanted to stay at home, but at the time I was told that “there are mother –daughter separation issues” etc. Not really..It just scared me to get that “I am going to die” feeling in the middle of class or hallways, or goodness knows where, with no one to help me or know what was going on, and plenty of oogling students. Heck, how could I explain it, when I did not even know what was going on.. Plus when I felt bad I could barely form words, let alone think straight. Again I was going thru a ‘prone to it’ time period.

 

Eventually with no good answers,  I decided that the whole problem was just my inability to deal with normal things.. I must be weak or dumb or both. I was not told of some small doctoral wonderings in all the notes in my records till I read them myself much later. 

 

At twelve or thirteen I finally dropped out of ballet. I would have loved to go up on pointe but I was told my body would not do it. In addition I could not handle going so often per week. I still swam like a fish though.

 

So I still had problems for years, sometimes more & sometimes less, but there was no sense telling anyone... Just muddle thru. I was late to school a lot…. The mornings were often terrible, after lunch was so foggy. I figured that everyone was experiencing what I was, and I just could not deal with it. There were days where going to school was impossible. Standing out in the cold waiting for a bus? Walking around a big building to get from class to class? There were days where sitting in class was more a recovery from the last period change..

 

In dealing with the near fainting and all the related orthostatic symptoms, I found drinking lots of water helped, the colder the better. Heat was terrible, hot showers always brought it on. Washing my hair with my head back was a pretty sure way to start a pre-fainting thing. Spending a few minutes in front of the mirror would nearly bring me down.  That was a weird feeling..I can't really describe it. If I stopped and wiggled and rolled my head and shoulders around I could stand a bit longer. Watching TV while looking sideways over my shoulder made me feel, oh so sick. Watching anything that required looking right, then left, then right for example was awful...Instant Dizziness. Malls were terrible too, especially if I was actually being asked to focus on things (look for specific signs, look for specific clothing etc.) I could zone thru it to a point, but never enough.  Something cold on my face helped, breathing slow and steady helped. Laying down always helped. Instinctively focusing on controlling my body helped...Mind over matter type of thing...to a point. I found that things outside my body, things that stimulated my system could help. In other words if I felt hot, I would drop an ice cube down my shirt... Now I can sometimes postpone it from overwhelming me for a few minutes this way (long enough to get out of the room where people are). The headaches and nausea and heavy leg & tummy feeling were yucky.  Hot steamy baths sound nice…but they don’t feel nice unless I do it with the bathroom window open on a cold night or only let the water come down from the shower head and drain out. The fainting "I’m going to die" feeling, when it was in full swing, and I was struggling with it was horrible. Sitting down allowed me to do a prolonged power struggle with it, but sometimes that was all I could do. Can’t tell, can't explain it, can't let it show. I am also really sensitive to light when I am not feeling good.

 

I remember learning about the muscles that control your heart and involuntary stuff in your body in school and thinking...hmmmm I dont think it works that way in me.... but no one listened to my theory.

 

My junior year in high school…. It blew up again (started with a massive…can not open your eyes headache). For two years, I suffered with various things and each seemed to only exacerbate the other. I so wanted it solved this time. This time I was sleeping 20 hours a day. I had been to Lake Tahoe in 1989 and shortly afterwards had a "viral infection" for two months. (so did two of my cousins who were there that summer with me. They were diagnosed with CFS as well.) Whatever I caught tricked my regular stuff out and caused symptoms in addition to what I already had.

 

I remember many mornings where it was seemingly 20 times in a row I would have to lay down or faint…I would nearly pass out or pass out. I always got laying down or nearly laying down, and then I would go out…I thought I had just fallen asleep for a few minutes or I would not be sure what had happened, but they were after all testing me for narcolepsy. Many times in a two year period I could not stand more than 3-5 minutes without the serious yucks, and loss of vision etc, if I persisted in standing. I would get a rocking feeling sometimes when I was feeling really bad. For long periods of time, standing one minute, took every ounce of stamina I had. There were times where just pushing up on an arm to roll over was enough to cause a faint or near faint. I was out patient for this round...Even sitting down felt yucky, especially for long periods of time with my feet down, making a day at school a torturous event and changing classes??? Minutes of walking or standing??? horrible. Only laying down curled in a ball on my left side was good (not right side, not back). I had constant headaches, sometimes dull and sometimes not.

 

I watched a lot of news from bed (this was during the whole Tiananmen square, fall of the Berlin wall thing etc). I was encouraged to drink less liquids (to minimize tummy upset) and get out more. My mother was told to be more strict with me, and force me out. I was seen at the mall sometimes, rarely, but sometimes and oh the talk that made...They would say "She is fine, obviously!!" So sue me for feeling slightly better or for being forced to go somwhere. I was put on beta blockers, calcium channel blockers, pain killers and more pain killers, Zoloft, elevel, Prozac, Ritalin and Valium Etc.. I used bathrooms as way points on the way to doctors appointments...Sit down and breath thru it...feel a bit better and walk on. The headache after a tunnel vision event was awful. I hated anyone who thought I was "sick." Mostly I stayed in bed, which unfortunately kind of makes it worse when you try and get up. No one seemed to give serious attention to the pre-syncope and fainting, probably because I could not quantify it enough for them, or describe it or proove it. The tachycardia they caught when I would stand up, or the other things seemingly small things (like bp drops when standing) were dismissed. Orthostatic problems were not taken seriously then, these things happened to new recruits all the time etc. etc.. I heard 'It can not possibly explain her problems' . I think now that perhaps the science just was not there yet…the autonomic nervous system was a largely ignored entity. 

 

I had a cyst the size of a gulf ball removed from my maxillary sinus. ( I had had recurrent sinus infections a lot as a kid, complete with the oh so fun suctioning.) When I awoke and started crying for my mother they thought I was finally experiencing real pain (they said as much to my mother.) In reality my mouth was completely parched and full, and I mean full, of canker sores and I was desperate for water. They pacified me by giving me ice chips. I never tasted anything so wonderful in my life. I don't remember any actual pain from that, although accidentally blowing my nose a few days later did not feel real good. (-;

 

The focus still, remained on the headache  and also nausea (over the counter pain killers did nothing, so I was prescribed a ton of different things in high doses which really did nothing.) The headache was always there (sometimes dull and sometimes decidedly not dull) because the other thing was always happening I guess. The headaches were variable (sometimes migraine like, sometimes tension headache like, sometimes stress like, sometimes cluster like, sometimes vascular-like, sometimes feeling like swimmers cramp in my head). I think I drove the neurologists crazy. Headache diaries were a joke. My headache was always changing.…. It is no wonder you might get a headache, I suppose, when little blood is making it to your head on a regular basis!...

 

Ate shark one night...Threw up for a long time, blinded by a grey out, no hearing, passed out. There was nothing anyone could do till it was over. All I could say was "help" between heaves and regaining consciousness. My mother called the neurologist, the nice one, who said as soon as she stops throwing up, put her to bed, turn out the lights, walk away (or she will spend her precious energy trying to be OK for you) Let her fight it.  To this day I maintain that was the best advice anyone could give during an attack.

 

I spent a massive amount of time as a kid trying to be thorough, and look ok for others, especially in public. I was a smart kid too and could tell when I was confounding people…. This lead in part to me probably confusing matters in an attempt to be coherent  and consistent. The problem with autonomic problems is that they are typically not consistant..They are a tad transient etc.

 

No one prior to my mother and grandmother, as far as I know, had seen it in full swing.. I got real good at hiding it. My mother saw it, she said I was ghostly pale and felt like an iron, I was so hot. The doctors brushed it off, I was told. My grandmother found me once in a cold shower, blind and with no hearing groping for the shower door...I was facing the opposite wall.

 

At one point I saw a doctor who said it was Fibromyalgia, but my mother thought that was a made up disease and dismissed it, and him.

 

Flew to Denver for chronic fatigue testing etc. Neurologists, endocrinologists.....They did a cybex muscle test and after 20 minutes I had lost 40-60% strength in my lower muscle groups! And I had a zero reading on the IgE in my blood (they had no explanation for this and were unsure if it was significant). The final Dx? chronic fatigue or Post Viral Fatigue, hypoglycemia, migraines, hypotension (although this was explained to me as something most children experience from time to time, military recruits experience etc.. It was not viewed as a major thing as I understood.). Dr. Jones said that he had only come across one other person with this reading (IgE=0).  He said "chronic fatigue syndrome". But that is a 'diagnosis of exclusion'...it isn’t anything else so it must be that...and maybe it is. Either way I was full of skepticism, and tired of it, so I refused to go anymore.... I was home schooled for a while. I was finally put in alternative school (3 hours a day) as the docs would not sign my homeschool paperwork anymore, and the boys and I had a fun day once comparing tracks. Although, I got mine in a very different way. I repeated my senior year in high school and graduated late.

College: .....no use telling anyone. In addition in my first year at a Junior college my mothers depression ballooned and she was finally admitted for Major Depression Severe w/ Psychotic features (I was 19 at that point.) I had learned to control it a lot, but still suffered, so I repressed it completely as far as giving voice to myself. I became the grown up for a home when my mother was put in the hospital on and off. I simply had no choice. I look at it as a kind of blessing now. Something had to force me to deal with life WITH this and also force out the fear of it. Either way, someone had to pay the bills and cook the meals, and make life normal for my little brother etc.... So when I got my AA I took a semester and studied abroad at a small private school. E gads! I was over my head…but I did it somehow. It was very small and individualized, that is probably how I managed it.

 

Then I decided to take large student loans and go to a small women’s college where they said they could work with me on my 'weak constitution'. (it was that or a huge university….no, I could not do that, how could I do that?) And I had to go to college...I mean otherwise I was relegated to standing work in grocery stores or retail and that was impossible for me, I had to find a way to earn myself something I could deal with. I learned not to bother getting out of bed after taking benydryl or Sudafed. Ok, got to get up...I have about two to three minutes before I go blind as a bat and feel like I am struggling for basic function.. Sure...That is long enough to get to the bathroom...lie down on the floor, get up and do my thing, lie down on the floor...linoleum is cold but it feels good when this is happening...go back to bed. That was fun.....If this is normal, how come I can't deal with it?  Maybe I just was not cut out for life after all, G-d made a mistake sending me here.... And why do I always need to go to the bathroom? 

 

I discovered that really I had no depth perception. I thought perhaps that was the case but I did not think about it much, then one day in class and my professer used me as a guinea pig to do a one eyed vs two eyed depth perception test to teach about it in class. I failed with one eye as you would expect, and I failed WORSE with two eyes. Fun!!

 

At this point in my life I noticed red/blotchy feet and legs sometimes. Sometimes when I was really feeling bad, it felt like the blankets or clothes over my body would hurt. 

 

The headaches also were still there. I could go without for a while and then the dull headache would be there for weeks. A storm approaching always meant a BIG headache for me. I could tell how far away it was and how bad it was. It was a joke with a professor of mine...He had a watch with a barometer..We would try and see who was more correct...His watch or my head.

 

I also went back to dancing, in minor amounts really. It seemed like the more I kept my bottom half strong and going the better I did. So I did african dance, ballet, flamenco, sevillanas...whatever there was. I did the classes once a week as doing anything more then that seemed detrimental to my overall health.

 

Post College...(1996+) Still sometimes are worse than others. But the problem is still here despite my denial. I came out to the "far left coast" and found as of yet undiscovered nice father. I decided to not take benydryl or Sudafed for any reason. Stand up jobs were nearly impossible, a four hour shift at blockbuster sends me home in tears... I have to have a stool behind the register... no?? looks bad you say?? Customer’s like me to stand? like I care....well do you want me to faint?? ‘cause I can... I was fired from one job for needing to sit down too much and finding to many things to do off in quiet corners. At another 3/4 time job I was nearly fired for sitting down on the job and putting my head down on a register to cope. I learned a while before this to tell, when I woke up (if not before...I usually will wake up around 3 or 4am and I can usually tell then)  if I was going to have 'a day' or not. I learned to distract myself by say singing "little bunny foo foo" or similar matter when having to walk a block or more. I have been known to be so into it that I did not see or hear my dad trying to get my attention from a doorway I was passing...Once I walked right past my dad on the bus! I guess I was a little too far into 'little bunny foo foo'.

 

I Again I went back to dance and swimming. I did ballet, but you had to go twice a week which was too much for me, so I ended up going for two months, stopping for a while and then going back. I also did a two year stint at belley dancing as that was once a week, I only stopped that when I was a few months pregnant with my daughter. Swimming also was good for me, in moderation. Problem is I like swimming, so it is hard to do in moderation. lol

 

I had a one year period where I commuted on my bicycle to work (3 mi each way). That was very very hard sometimes and some days did me in, but I was trying to prove I was normal I think. I looked darn good for it though. lol

 

Finally I got the coveted Desk job, although this was my first full time work and that, in and of itself, took stamina on my part. I found that just being sitting for extended periods was too much as well. I found a way to do what I needed to do, more or less. I resigned myself to subtely walk with my finger tracing a wall to get to a bathroom, on bad days. I continued to only really like to go where I knew the terrain. I found that paper boxes hidden discretely under a desk made good foot rests. I learned that just because I loose vision and hearing does not mean I am going down right away... I will progress thru it to fainting if I push it to far, but it can be pushed (although it is miserable to do it) . I practiced with it. Standing inspite of it and then would throw my weight forward onto the bed at what I felt was the last minute. I had to know my body better. It is like learning to drive on the snow by purposefully spinning your car out in an empty parkinglot. I loose my balance so much it is silly. A walk inevitably has me twisting my ankle, to usually minor degree's, as my depth perception is non existant. It is a wonder I have any nerves left below my ankles and wrists. lol. I walked a whole city block, in downtown blind and deaf one day in order to get to a bench in a bus stop.  I was dependant on mass transit and would manage to either get to bus stop seats, on the bus, or perhaps into a bank with a chair. Although once I had to just lay down on the sidewalk downtown. A few times I had only enough time to get to a stair that was the entrance way to a building. 

 

I was given warnings for being late or missing work because my body kept insisting on doing this funny thing. They said.... "go to the doctor and get a note”, and what is a note with no diagnosis going to say??? I began getting in more trouble...so I would come to work anyway, I was after all taking the bus. I guessed I could live with those horrible, fainting bus rides. I remember one chat with a co-worker that was interrupted by me saying "I need your spare chair...Ok, G-d I hate this, Hold that thought I'll be back in a minute.." I learned that if I was home sick, in bed, for two or more days I would have to transition back or face bad gray outs. In other words first day back just work 2 or 4 hours, second day back 4 or 5 hours, third day back 6 or 7 hours etc... I had to just resign myself to this.

When I start to feel really bad in public I notice people move away from me, but I don't know what happens...I did it once at work, in a CPR class in front of an EMT. I finally knocked over my ice water in my power struggle with it. He asked one person to clean it up, another to get me more ice water and announced "it is ok, heather is having a little trouble." I was mortified..... I never asked him what he had seen or what he thought it might be. I left as soon as the class was over. Dumb, dumb, dumb. I wish I had asked. But then I was convinced it was just me. I learned to sit on my hands, with my head down, if I had to do this in public..Between people staring at me when I could see again and the bruises I kept getting on my hands and ankles i thought it would be good to immobilize myself.

 

Finally in 1999 I had a full on "syncope thing" while laying down! So...I went to a doc again. They did the blood tests, thyroid tests, tested my kidney and liver function...all fine of course. So they sent me over to a diabetes center to get a blood self test. I tested for a few weeks before and after each meal. I only caught two minor "pre-emanations" and my blood sugar was normal (80 and 90) I gave them my medical file from childhood.... Hmmm, obviously a hypochondriac.... would you like an antidepressant (Prozac was the drug they offered).. After all you said yourself you mother has been in for Depression. No thanks... been there done that. I just need to cope better, that is all.

 

I have lost time, on buses, bus stops, floor of my baby’s room... "Why has she been crying in here for 5 minutes?"…. was it??? Must have been that vitamin I took...

 

I had my daughter in 2001...things changed. I don’t get the full on faint very often (unless I am sick or very unstable) When I was pregnant the grey out's and horrible feelings would happen sitting down and even sometimes laying down, although it was milder and different in some ways. Laying down does not mitigate a full on presyncope episode like it used to, sometimes I just have to ride out those horrible feelings. Laying down used to stop it right away. I also noticed that my warning of "critical mass coming" has shortened and it is still that way, although I have learned, I guess, to control my body to some degree as the bad grey outs do not happen nearly as much as when I was a kid. I am down to a few times a year.  Mostly it will feel like it is coming, but it does not actually happen (beyond minor tunnel vision) unless I push it. Or I will just have my heart rate hovering at 100 or more and feel awful (face tingling and going numb etc.) for hours or days. I wonder if my warning signs of changed.  At the hospital I told the nurses I fainted easily and had hypoglycemia and they put me on a saline & glucose drip during the 32 hour delivery and C-section (complete w/ back labor, oh joy!). I did pretty well but during the c-section I started shaking violently and no amount of warmed up towels helped. 

 

After my daughters birth I noticed that seemingly monthly (I tried to tie it to my cycle but these things  kept moving) I would go thru months were I get flare ups of urinary tract infections and/or canker sores and/or hemmeroids and/or feeling like I had the flu off and on...or all of it at once....and I mean very often. The canker sores could come in 2 week bouts with anyware from just a few days to 3-4 weeks between bouts... At one point I registered 13 canker sores at one time, I almost always get upwards of 3 at any given time. I have upwards of 10 outbreaks a year.  Before this time it had been mercifully rare. The headaches were still there...bright lights, florescent lights, mold, standing, prolonged sitting, weather changes, altitude changes etc can trigger a headache and general unstableness. The headaches, when I am having an unstable time can last for 3 or more weeks…more or less constant. Sometimes they are dull and sometimes they are decidedly not. Sometimes I have a few seconds where it feels like I have swimmers cramp in my head. Sometimes I feel as if my body is just dragging, like gravity is just trying to pull me into the ground. I started having bouts of swollen glands and "flu's" w/o the flu"... a lot more.