Saturday, September 12, 2009

June 6-September 12, 2009

So.... I'm starting a blog, because i feel alone. 3 months ago, I was visiting my husband in MS while he was on active duty in the AF. We went out drinking, came back to our hotel, and went to bed. During the middle of the night, my husband found me unconscious and bleeding from the back of my head.

I pushed all my bad feelings aside and continued to have fun for the weekend. I felt tired, nauseous, dizzy, and had a horrible headache. I didn't want to ruin the weekend, so i pretended i was fine. The flight back to NY was awful. My head felt like it was going to explode.

I wanted to go to work the next day, but i had such a hard time waking up and felt so horrible that i went to my dr instead. She examined me, did an xray and a CT, and concluded that i had a concussion, but there was no other damage.

I decided to go to work the next day even though i felt awful. The headache, nausea, unsteadiness, and exhaustion wouldn't cease. Halfway through the day a started vomiting and could barely focus on anything. I drove home and called my doctor.

She referred me to a neurologist, who was able to see me immediately. He prescribed me a sleeping pill to help out at night, and a few migraine samples to fight the migraines. He said if the symptoms didn't improve, he would send me for an MRI. 2 weeks later I saw him again. No improvement. I was tired all day, headaches, nausea, and dizziness. All of those symptoms would get worse if i did anything. He ordered an MRI that i would have to wait a week for.

I went to get the MRI, and saw the neurologist a few days later. The MRI was negative. I wasn't anxious to have something, but something was better than the unknown in my head! I wanted to scream. I didn't understand how i could feel legitimate symptoms if there was nothing wrong with me that would be picked up on any test.

I had some blood drawn by my MD and she also ordered an xray of my neck, because i also have tightness and cramping in my neck. The xray was negative, and the blood test showed a vitamin D deficiency which could be fixed with some prescription vitamin D pills. No big deal. She also said that we should repeat the test because there must have been a mistake in my billirubin levels.

I saw the neurologist every 2 weeks and continued to stay home from work. My husband came home from MS, and life became both easier and harder at the same time. I wanted to be with him and go out with him and enjoy the life i always have, but i was so limited! My head hurt and i was so tired all the time. There was very little i could do before i would go into overload.

My husband came to the neurologist with me and began to understand that what was going on was real. He didn't really get it until then. Every 2 weeks my neurologist would switch up my meds trying different things for my symptoms, but always saying that nothing was going to heal the concussion, just help my symptoms. Nothing helped my symptoms either.

The Treximet works for my migraines, but makes me feel like i'm having a heart attack. I've gotten used to feeling like i'm having a heart attack.

Four days before my 29th birthday, on July 25th, my left leg was numb. Not exactly numb- heavy, i couldn't use it. My leg would buckle when i tried to walk. I didn't think it was that big a deal. Maybe it was a side effect from the meds i was on. It felt like someone was squeezing my leg or something- heavy with a lot of pressure, tingling, weird. I couldn't describe it. I went to bed thinking it would go away.

I woke up in the morning with total craziness. I still couldn't move my leg, and it was worse. My arm started feeling heavy and tingly. I was also feeling very unfocused and confused. I called my MD and she said "Get to Gates". She thought i was having a stroke.

I got to the hospital, and they started all types of tests. MRI, CT, CT with contrast. Nothing was showing anything. They were all confused. They didn't have any beds, so i was turfed to the "observation room". My husband left to take care of the kids and get some sleep.

In the middle of the night, i began having trouble breathing. It wasn't that i couldn't take a breath. I just had to make my self breathe. It wasn't happening automatically like it normally does. I had to physically take breaths in and out. I was making my self breathe all through the night. No one understood what i was saying and i was becoming very tired from it.

I had a chest xray and it was negative. I began to become very distressed because it was so hard to keep myself breathing. I was so tired, but if i fell asleep i would stop breathing. Every time i fell asleep, my husband would wake me up, because my monitors would show that i wasn't breathing.

The doctors didn't really get what was going on until they saw me fall asleep, and let me stay asleep without waking me up. I didn't start breathing on my own when i fell asleep and my O-sats dropped into the 40s. When they finally woke me, I began speaking in gibberish. I couldn't say what i wanted to say. It was so scary.

They did a blood gas- ouch (an understatement) and it was negative. They finally began to see what was going on. It wasn't a breathing problem, but what was it. They put me in the ICU for monitoring and the condition did not improve.

I was taken for an EEG, which was negative, but during that time, i felt new symptoms on my right side. My right wrist felt like someone was bending it back. I wanted to sleep so badly but was being forced to stay awake because i had to be taken off the monitors for the test.

That night, the new nurse wanted to turf me to the telometry floor. She was trying to get me out of the ICU and into a room. There were several episodes of me falling asleep and waking up speeking giberish. It happened 4 times, and was scary every time.

Several times that day my husband and I felt as if we needed to say goodbye to each other. We prayed, held hands, and just cried. The night nurse finally moved me out of the ICU, against the attendings orders and put me onto the telometry floor. My night nurse looked like Florence Nightengale. She must have been in her late 60s and would not have been able to do anything for me in an emergency. She was smart and experienced, but slow and frail. My husband stayed the night.

The night went without episode, but also without sleep. I couldn't let myself fall asleep because i was scared that i wouldn't wake up. I didn't feel as if i was in good hands. The following morning, i was greeted by a new nurse and a new situation. I still couldn't breathe on my own and my leg was still numb. My arm was not too bad, but i was worried more about other things.

My billirubin levels were 8.7, which is more than halfway to dangerous. The attending was very upset that i was taken out of the ICU, but was conceeding that it would be ok. Every specialist in the hospital saw me, and no answers were given. I was vomiting and nauseous and felt a tremendous amount of pressure in my digestive system. I was feeling hungry, but eating made me sick. I was turning yellow in my eyes and my skin.

I was put on a saline IV and in several hours, things began to change. I was able to sleep for longer periods without losing oxygen in my blood. I would wake up only every 10-15 minutes instead of every minute. I was getting a few minutes of sleep here and there and was beginning to feel more confident. That night, i was able to sleep for even longer stretches of time. 30 minutes at the longest, but it was fantastic!

When i woke up in the morning, i was able to move my leg more. I had much more strength and mobility and was feeling better. I was taken for an ultrasound on my belly and an xray of my hip, because that was the only spot that still felt weird on my leg. My breathing was almost all the way better.

All the tests came out negative, all the specialists signed off on me, and the following day, i was released. The attending wanted me to follow up with someone to check out my billirubin issue and my MD and my neurologist. He didn't want me to leave without figuring out what happened, but there was no medical reason to keep me any longer.

I saw my neurologist again, and he didn't have any explanation either for what had happened. I didn't follow up with my MD until she could see me about 3 weeks later.

She said there was a disease called Gilbert's disease that causes your liver to not process billirubin well, so that the indirect billirubin will always be high. Stressful situations will cause the liver to function worse, and the indirect billirubin will rise very high. It isn't dangerous and can be lived with easily.

As far as my numbness and breathing was concerned, she seemed to think that it was the initial onset of MS. She said that legions wouldn't show up on the brain initially, and that my spine would have to be tested to show any signs of that. There was never any testing on my spine or mention of MS while i was in the hospital. She said that there would be no way to make a diagnosis unless i had another set of symptoms or some sort of consistency.

Since the hospital, i have had some instances of weird feelings in my body: tingling, pins and needles, numbness, heaviness. It hasn't been anything like what it was in the hospital, but scary anyway. I may be overthinking things or looking for symptoms.

I continue to see my neurologist regularly and will have more bloodwork done to ck my billirubin levels. I am blogging daily to try and record how i feel every day.

Maybe i will see a pattern? Maybe i can feel better by getting this all off my chest?

13 comments:

  1. Hello Kate, I stumbled upon your post, looking up sites about postconcussionsyndrome. I was diagnoised with pcs in the beginning of 2008. I was in a rear end car wreck; the only thing I remember after coming back into consciousness, I believe I was knock out; I remember fluid, (which I thought was blood) running down the back of my head. I thought my head had been busted open from the impact; but it was not, it was the fluid around my brain settling after the impact of the wreck. From that moment on, my life went down hill. At the beginning I thought it was a regular whip lash injury, I went through all the necessary treatment, like physical therapy, etc. I was seeing an ortopedic. However I notice that I was having real bad headaches, dizziness, problems with my short term memory, my smell senses was almost gone, began to experience depression. I mention to my doctor that I was having problems with my memory, it became more difficult for me to do multi tasking. I was referred to a neurosurgeon( the orthopedic mistakely sent me to the wrong one, should have referred me to a neurologist), lol.....The nerosurgeon diagnoised me with pcs, so did the neurologist, when I finally seen him. That was the first time I ever heard of post concussion syndrome. I eventally had to leave my job, due to memory problems, inability to multi task, dizziness and headached and depression. I am presently drawing workman comp; I still take medications and injections for headaches. I was taking an anti depression medications until workman comp would not pay for it anymore, nor send me to a psy. I will eventually apply for social security, once my workman comp case is settled, which prayfully will be soon. I do not think I will ever be able to work at the pace, strength I was before the injury. I was an social worker/case worker; my thinking has been drastically slowed down, I can not take the pressure of too much activities coming at me at once, I just shut down mentally and emotionally. My personality has changed much, I am more withdrawn, I like u, was very socialble, now I am a recluse....just wanted to share with u.

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  2. Abundance,

    How are you feeling now? I just saw this comment and I wonder how you have been in the last 8 months?

    Thanks, Kate

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  3. Hi Kate. I stumbled onto your blog as i try to figure out my own concussion. Did your foggyness and symptoms go away. I fell and suffered a concussion. When I fell I first thought I was in shock from the fall. I don't remember the fall just looking up at the ceiling with great pain in my hip back and hip. Like I say I felyt like it was i was in shock. So I got up and drove home. Very slowly. I went to work the next day. the following day I was too tired ans soooo much pain i stayed home. then on the 3rd day i went to my doctor when he said i had a concussion. i think the 4th or 5th day when i woke up something had happened when i was sleeping. i was in a state of super slow mode my words won't come out as i search for the right word to say. it has been 5 weeks now. i had a ct scan that shows negative. i'm soon going to a neurologist. i can now think better but the thoughts don't get out when i speak them. i feel like my head is searching.
    i hope you and your bf are still there for each other. my gf doesn't understand. in the past 6 weeks about 3 weeks ago i thought i'd see how my head would feel like if we spent a night together. it felt like my eyes were going to explode so i haven't felt like going through that again.
    i hope you are better cause there is no way i'm going on like this if this is permenant.

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  4. Hi Carl,

    I am not 100% yet, but I am seeing some progress. I am so sorry that you are going through this. It is so frustrating and so difficult. I also don't remember what happened when I got my concussion. My husband found me on the ground bleeding from the back of my head and we just went from there. I thought I was fine, but after a few days of not being able to do anything right I saw a neurologist who thankfully has Post Concussion Syndrome in his beliefs.

    It can be difficult to get a diagnosis, but what's worse is that there is no cure. The damage will not show up on any CT scans or MRIs. Your brain just needs time to heal. There have been some who have healed quickly and others it might take a little longer.

    I am seeing a Dr. Leddy right now who is offering a PCS research study. It is an exercise based study that works with how your brain and heart rate are connected. I am definitely seeing some progress through the study.

    Hang in there Carl! Six weeks is a short time in the scheme of concussions and brain injury. My husband is very supportive, but I really have had to learn that I can only rely on God to be there 100% for me. There is no other perfect support or love in life than that of our great Father in Heaven. He loves you and is there for you no matter what.

    I have a post on a message board that I found that is all about head injury and concussion. Please check it out. There are people there who are smarter than me and have more experience with this than I do.
    http://concussionkate.blogspot.com/2009/09/found-great-message-board.html

    Please keep me posted on how your are doing. I'll pray for you and for your girlfriend. By the way, sometimes it helps me to write everything down that I want to say to someone and use the list while I'm talking to them. When I'm really tired, I still can't find the right word for things, but there are other times when I'm quicker again. I'm here for you, and you will find that there is a community of people who can support you and help you.

    Thanks,
    Kate

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  5. Hi Carl,

    I am not 100% yet, but I am seeing some progress. I am so sorry that you are going through this. It is so frustrating and so difficult. I also don't remember what happened when I got my concussion. My husband found me on the ground bleeding from the back of my head and we just went from there. I thought I was fine, but after a few days of not being able to do anything right, I saw a neurologist who thankfully has Post Concussion Syndrome in his beliefs.

    It can be difficult to get a diagnosis, but what's worse is that there is no cure. The damage will not show up on any CT scans or MRIs. Your brain just needs time to heal. There have been some who have healed quickly and others it might take a little longer.

    I am seeing a Dr. Leddy right now who is offering a PCS research study. It is an exercise based study that works with how your brain and heart rate are connected. I am definitely seeing some progress through the study.

    ...

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  6. ...

    Hang in there Carl! Six weeks is a short time in the scheme of concussions and brain injury. My husband is very supportive, but I really have had to learn that I can only rely on God to be there 100% for me. There is no other perfect support or love in life than that of our great Father in Heaven. He loves you and is there for you no matter what.

    I have a post on a message board that I found that is all about head injury and concussion. Please check it out. There are people there who are smarter than me and have more experience with this than I do.
    http://concussionkate.blogspot.com/2009/09/found-great-message-board.html

    Please keep me posted on how your are doing. I'll pray for you and for your girlfriend. By the way, sometimes it helps me to write everything down that I want to say to someone and use the list while I'm talking to them. When I'm really tired, I still can't find the right word for things, but there are other times when I'm quicker again. I'm here for you, and you will find that there is a community of people who can support you and help you.

    Thanks,
    Kate

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  7. Hi Kate
    And everyone suffering from pc, I hope everything is well with you and your story is touching I just wanted to see if anyone felt alone with no where to turn and know one who understands in their life., I cant believe after 6 months I still feel spaced out and I cant handle much noise and my memory is shot I don't want to sound like a complainer but I'm starting to question if life will ever be the same. best of luck to everybody. I hope this makes sense

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    1. Anon,

      Hey. I'm sorry about your loneliness. It's tough to commune with other PCS sufferers and it's tough to be with people who don't know what you are going through. I find comfort in my friends who just treat me like me. They don't make a big deal when I have a tough time and they laugh it off with me. They also don't push the issue when I'm not well.

      I had to learn to communicate my needs to the people in my life. That was hard, but counselling helped with that.

      Good luck to you! You are never alone. You are loved by the King!
      Kate

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  8. I could cry someone else is like me! I was t boned Oct 2012 17 yr "didn't see me". I believe it was God who told me she wasn't going to stop. Slammed the brakes braced for impact. We were enroute to airport so after police, amb (other driver went to hosp)tow trucks a friend took us to airport.Aa few aches & broken ft wont stop me- a 2 hrs wait -a couple of drinks 600mg of motrin for headache (HA) & muscle pains. At our destination I knew something was wrong- kept it to myself not ruining 7 peoples vacation. The HA never ended no mater what - muscle relaxers, ultram, motrin, Tylenol, ETOH , hot showers, whirlpools. 3rd day muscle spasms weird elec buzz in my rt mid ribs, rt leg got weak & buckles. I couldn't get on motorcycle I couldn't get rt leg over seat. Gait worstening. My husband noticed and was helping me. I stopped pain meds & muscle relaxers day before we left- rental car in my name .Spasms & HA horrible. Drive home I could barely see everything was a blur. God got us home that night. Next day my husband was due back &our grandsons birthday so I stayed off the meds to drive. The receptionist at pcp said a week old is not an emergency- no openings rest of week-went to Faster Care- xrays no fx "jammed up" better get an attorney I would be off work for long time. Muscle relaxers, pain meds shot steroids plus 2 wks of oral. PCP 2 wks later then to PT who thought I was nuts - asks recep I knew -she confirmed I was "normal". Eval some weakness -gave me exercises. Next day I was sore so did half of them Next day did all & 20 min I couldnt move-spasms. Therapy 2 days later didn't believe me again -put me in traction to "help" I lost control of my bladder. I went straight to app chiropractor. OMG your a mess. No more PT! Months of massages & trigger point showing little improvement. She adjusted my low back. Left office downs steps r leg gave out & I fell. Began having heavy numb dead feeling you talked about from then on- if rested ok for short time but the more I did the worst it got -used my hip to get it to move forward. She wanted MRI of back/neck. Burning and zapping- fingers would go numb and tingle get cold burn or hurt like a tooth ache. HA still NEVER left always 8-10 NOTHING helps!! PCP didn't seen to care since I "didn't hit my head" couple of hrs a night sleep because I woke up from nausea/ dizziness, HA, leg, arm or neck pain, int vibration - rhythmic buzz that's I first feltin my rit ribs now in my groin to entire rt side.FINALLY after 3 months L MRI- refused neck"ins only pays for1 at a time " lumbar bulges more steroids! Another month of unrelenting symptoms - MRI neck, Chiro called next day- won't touch neck need surgeon 2 hern cervical disc mod to sev cord comp. PCP took 3 wks to call me results -his nurse said arthritic changes. I wanted a 2nd opinion. Neurosurgeon wouldn't rush me to surgery wanted my concussion taken care of first. I had a dx In 2 days a concussion spec told me I had all s/s &needed a new PCP-started Elavil slept more than 2 hrs! HA from a 8-10 to 3-4. Vestibular tx makes me so dizzy & nauseated room goes blk and almost go out-or pretty colorful orbs.Never know when - asleep - getting up - watching tv- or talking to someone (ooh scared the heck out of people) As a nurse I know I cant work - I lost position now- I cant handle noise, bright lights,even simple math in my head at times- never know when I burst out in tears or angry outburst. My husbands a saint but never knows what he is going to find from minute to minute Days I can shop others I walk in right back out . Therapy takes me 1-2 days to recover.. Anonymous RN

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    1. Hi Anon RN,
      I'm so sorry you are going through this. It is awful! I'm not sure what area you live in, but I have been working with a functional neurologist (sometimes called a chiropractic neurologist). This is the most improvement I've had in the 6 years since my head injury. As I write this to you I'm about 90% of the way back to being well!

      I have some frontal lobe issues still (eye and brain focus, mood swings, etc) and a little bit of trouble with my midline cerebellum (slight balance issues). Otherwise, I'm doing really well! Dr. Carrick of the Carrick Institute has started this field and trained some other doctors. He's incredible and has found ways to rehab the broken pathways in the brain. My doctor – Dr. Shane Steadman was trained by him and is here in Denver.

      I'll give you the links to them here, so maybe you can find someone in your area to help you rehabilitate. These types of doctors don't often take insurance, which is unfortunate, but it is honestly worth the money to be better again!!! Good luck to you and God bless your husband for being so good to you.

      http://carrickchiro.com/

      http://abcnews.go.com/Health/chiropractic-neurology-breakthrough-placebo/story?id=17027630

      http://integratedhealthdenver.com/

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  9. Thanks for the info Kate I will look into it. Sorry about the wording in my first note - had to cut it back a lot due to character restriction. My husband thinks I should get my herniated discs taken care of and see if that helps. It might help with the numbness - maybe take it one step at a time. I too have the eye brain issues and balance issues- going down dark step can be scary. Thank you for your story it has helped me not feel so alone. I know a lot of people think oh a concussion get over it- its not that easy as I have learned. Anon RN

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  10. Hi kate, you are not gonna beleive me but i have through almost the same as u !! Still 8 months aftrr concussions and i am having strange symptoms, difficulty breathing , pain in hands and legs, headache, neck pain, no cure! No one is helping and no one knows whats that. I just pray to god that what i am going through is not a damage that it will take my life one day! Tell me about ur self now, how do you feel? Still having symptoms? Ola

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