Saffire aka De Etta Lerch

"All the days ordained for me were written in Your book before one of them came to be." Psalm 139:16

Age: 64

Diagnosis: Vestibular Migraine

I have yet to find anyone who has my symptoms, so I thought that maybe if I wrote my story here and shared it, maybe someone could relate.

Most of my life has been one stress battle after another. As I get older my body does not respond to stress like it once did when I was younger. Everything that is wrong with me is above my shoulders! I underwent a 9 hour jaw surgery in which the checker of my limbs forgot to make sure I was properly positioned during the surgery. I was nervous & cold and had put my left arm under my side to feel the heated blanket… my hand was flattened under my butt…and woke I woke up nine hours later with numb hands and fingers. It was some years later that I was finally diagnosed with “Thoracic Outlet Syndrome.” A condition of over stretched muscles in the Brachial Plexus & that extends to the Sternomastoid muscles. If I lift my arm getting the elbow out from against my body with even 15 pounds this will send those muscles I mentioned into spasm. But I do not feel this… What I feel the next next morning is a head ache. This is because C1 & C2 in my neck shift during these spasms and resulting in pinched nerves. This gives me a headache that only a Chiropractor knows how to treat to get my symptoms to subside. The pain is merciless. If it were not for this form of care, I may have been long dead for committing hare kari!!!

I started to realize that more weekends than not I was getting some very painful migraines. I put up with these for a long time until I finally saw an ENT. It was with that I learned that most of my triggers also had to do with certain foods as well. Sure enough… I learned what it was. Sugar!! Clearly a poison, but I am so addicted to it! I came to realize that my “End of the Work Week Treats” were making my days off horrible for me.The following week I would have a migraine. But I finally knew the root cause! Add this with my life stress and my muscle aches and these all cause my migraines. Driving on a fast lane highway on a freshly snowed morning or and seeing a car slide in front of me, wondering if I can stop, can bring a migraine on in an instant too.

Somewhere in those years I was also diagnosed with Chronic Major depression. This is the least of my ailments but I was finally matched with a good medication & with doctors who listen. I had one bad one who insisted I was Bi-polar and I had a time of it with him for about eight months switching all of these my treatment meds on me. But I finally escaped him and I got put back on Effexor, a med that makes me feel downright upright human, whole, and painless (in the chest) again.

About three, maybe four years ago, I was passing time reading and I read about a person who gradually realized something was the matter with him. I think he eventually discovered he had MS. I could be wrong on this… but he kept dropping things and at the most inappropriate times such as lifting an expensive dinner plate and dropping it… and so on until his was was diagnosed. This story in particular struck me because I was dropping things very randomly but it was odd because I really thought I had a decent grip on the item… and bang it would clatter to the floor! I barely missed my foot with scissors once, I walked a little too far or “weaved” into space to the left, while awaiting the balance to go right, went into the elevator, and would bump into doorways as I entered a room. Once I was carrying a jug of tea into the kitchen and went too far forward, lost my balance and mashed the top of my hand into a knob! Ouch! Another time I was holding a ceramic water pitcher after filling the dog water bowl, and it just dropped out of my hands to the floor, thankfully I was still leaned over and it and it did not break. My first very rude awakening to taking all of this seriously was a trip down the basement stairs. I was carrying a screwdriver across the front of my stomach and a small tray. Suddenly I was pitching forward and beyond recuperating my upright posture! I remember sudden thoughts, reach!… but there is nothing to reach for!.. then throw yourself backward because you do not want your face to hit the floor! I let out a holler so my husband would come check on me. My face now up and back allowed my knees to hit the steps first and my under chin caught on a square drawer knob slicing my skin wide open and I crumpled to the floor on top of my arms, which is where still mysteriously in the very same position as they were when the fall started near the top of the stairs. Arms still across my waist with screw driver clenched in hand. This was too weird. This is not a normal fall. Not a normal reflex? My reflex was unresponsive. I fell walking thru a parking garage while looking back over my shoulder at someone, only I recall nothing but looking one moment and with stuff still in my arms, one of the items flew ahead of me out of my arm. My arms again were not in an outstretched format to catch me. My knees and under arm were quite skinned and someone behind me saw me fall but I was so embarrassed I got up and took off for the train. The time between looking back & hitting the ground was a black-out moment.

Another fall I was headed down the train station stairs, watching a beggar but not particularly rushing. As I stepped down the stairs something happened and again I fell down the stairs with no natural reflex to reach for the rails. I was just falling at the mercy of a fall until I came to a stop. I was in pain and agony from a twisted ankle. Also embarrassed by a gal trying to re-coop my flying shoe and bracelet, and I could hardly stand for the pain. I was able to catch my train.

I grew weary of all, dropping things, knocking them over, dropping a knife. I wanted to move a delicate glass hanging ornament. I reminded myself not to drop this thing & to hold it tight. As I reached to take it off the hook where it was and wrapped my fingers around it, lifted it off the hook, before even moving from the spot, slipped right on down through my fingers and shattered on the floor. How in the world could this be when I so decidedly made note of what I needed to do to keep it safe? I must have some slow killer disease.

I took the train on my daily trek to Center City Philadelphia. I started falling more. Everyone around me blamed my boots, my shoes, my heavy backpack, the sleet, the rain. No one thought that maybe something was wrong. Well almost nobody. But someone on the train said to me, after another ankle twisting fall, “You fall too much.” And I knew by now that I really did. I am not obese, I am not a couch potato, I am not an athlete either but I had never fallen like this before.

I finally made a call to Jefferson for testing for balance. One thing led to another and I was diagnosed with Vestibular Migraines by the ENT. They tried a number of meds on me, but I could not see living out my life seated with absolutely no energy for being so drugged by extreme calming medications. So I told the doc I would rather fall. He turned to Botox.

Today I am on Botox injections every 3 months, which are injected around my hair-line, in my cheek bone joints, above my eyebrows, twice across the back of my head two different levels and a bit down the back of my neck, all done in an effort to control the invisible, painless muscle spasms that certainly must be happening to cause the falls. They are clearly there I believe, because my Chiropractor felt them on the lower back of my head early this year 2017. He asked if I felt this, I replied “No,” in fact I did not! This actually made me feel better because it gave credence to something I cannot feel!

I have falls now once or twice a year. I don’t look like I am a weaving drunk very often anymore except for when the Botox is wearing off. Then I start to weave and bump into door jams, drop things as my fingers are acting stupid, and my arms haphazardly knock things over. It takes about three weeks for the Botox to take full effect. I have absolutely NO dizziness, NO HINTS, NO Warning signs that I am going to fall any second. In one instance I almost smashed my face into the marble floor, another time I fell right into a flower bed on my side.

I think the Botox makes them happen less. A surgeon who works at Jefferson, in Philadelphia, is the doctor treating me with these injections, and also an oral surgeon who has taken a special interest in these Vestibular Migraines, recommended to me by ENT who diagnosed me He says I am his first to get the Botox for the Vestibular Migraines, and recently he just put another person on this course. I will have to ask more about what “we” have in common! The only way I can tell these falls from stumbles, is the state of my awareness and my lack of reflex movement which is bore out in my landings. Sometimes I have been aware & simply observed my fall, but could do nothing else.The last three falls have been definite short blackouts, as if the blood vessel was suddenly constricted for a couple of seconds. It was just long enough there was no blood flow to that part of the brain which made me topple over.

I have read numerous things on the Internet in search of experiences. I learned of a doc in Chicago who felt “drop attacks” were from instability in the neck, C-1 & C-2 area. His suggested remedy was to stick needles into my cartilage to stimulate and tighten up this area. But I am not ready to look into that.
I have read about “Drop Attacks” which sounds very similar to what I have, however I am not “thrown” to the ground like some describe. I have skinned up my face a few times. I have come to realize that stress, panic and/or anxiety play a role in these vestibular migraines for me too. Due to a history of mounting stress over time I became very effected physically and this contributed to these vestibular migraines. I grew up in a stressful environment, have been through personal stressful events including divorce, an apartment fire and just stressful relationships in general that compiled a stressed out psyche. I have been in “therapy” for more than 12 years. Constantly dealing with new situations, job loss, etc.! Some things we can avoid, some we can change, but I have no looking glass or ball to see into the future and so I take it all one day at a time.

I know that I can very possibly die in one of my falls. The stairs are scary for me, but the deep wells of the train tracks at the station scare me the most! If I fall in, how in the world would I get out? So I stay five feet clear of those tracks! I am afraid at times as I cross the busy city streets of Philadelphia, when traffic is chomping at the bit for the green light. Will I be able to cross without toppling over for some unknown reason? I have bought for companionship a very smart Australian Shepherd pup who is quite sensitive. So much so that I decided to make use of it. I have been training her and the last thing she needs to learn is to stay by my side and bark, or go get help. She keeps me calm in stressful situations, which is a big help. But if I am knocked out or break a bone or fall into a deep place or down cement stairs in public places, she will be useful in getting attention for me or staying with me. I recently went to let her out to potty and I was at the top of the stairs, and the next thing I knew I was thumping down the home carpeted steps on my back, never recalling slipping or falling to my back. I blacked out for a moment. I suddenly knew I must form an L with my body to stop the downward trend.

I am almost like humpty dumpty, but I can be put back into alignment again by visiting my favorite Chiropractor who keeps my body able and takes my health very seriously. He has a small gym in his office and insists with stretches and strengthening of the injured parts for many of his patients. I am often in the darn gym far too many times. It is June and with February & March behind me I wonder how far I can get this time before landing in the gym again!

Feel free to write me if you need a referral to my doctors in Philadelphia.Thanks for taking time to read my story. It is lonely where I live with this diagnosis. I do not know anyone else with this kind of illness! ~>^..^<~ oh

I just got another diagnosis this past month…. Would you believe I am told it seems that I have ADD/ADHD? Oh God, you’re so funny! Why is this all in my head? Might I be adrift in la-la land, while my heart will beat for a long time yet? I sure hope not! Next venture then is that I will be off for some new testing of another part of my head as well. I will also be participating in a research study of the Executive Function. They will check for early dementia, although he says he thinks this is not likely, but it’s all about to be tested. I am getting the idea that a bang to the head can bring about new issues in the thinking and or personality. How bizarre that so many of my ills are in my head! Can you believe I am grateful to God for no pain, dizziness or spinning rooms? You bet cha!

“All the days ordained for me were written in your book before one of them came to be.” Psalm 139:16. Since the Creator speaks this then I may as well live one day at a time seeking Jesus for guidance and answers, because my worry will change nothing! I will ask. What are You going to do? Where are You taking me? He knows my circumstances, He knows I will make mistakes, He will provide, He will speak to me in ways I hear and understand, He will guide me through wrong doctors to get me to the right doctor! I will listen and trust the best that my busy mind can, and Thank You Lord.