Oh my--someone who seems just like me! I felt like I might be the only person on earth with spastic and myoclonic-tonic tremors resulting from an incomplete spinal cord injury (ISCI) Spasticity is a feature of cerebral palsy-- but also can be a result of ISCI. Spasticity means a rigidity which can alternatewith loss of muscle tone--or as you say, it feels mushy. I liken it to feeling like a puppet with someone pulling the puppet's strings every which way. Did your dr say what kind of ISCI? Have you had an MRI?
The "good" thing is, ISCI, Spasticity, tremor and loss of tone isn't life threatening... the bad thing is, there's very little that can control or cure it. Like me, your Drs probably don't think surgery will reverse your muscle problems. However, you should get an MRI and see a spinal surgeon, just in case surgery might help.
The biggest concern is falls. I find a cane better than a walker. You can learn to observe how mushy/stiff you are and take extra precautions to avoid falls. Do you also have trouble lifting one or both feet---foot drop? This can be intermittent but when it occurs, can lead to you turning your toes under your foot. I broke my foot and toes (many times) from the foot drop.
I'm not familiar with Dantroline -- is it helping at all? If not, ask about reducing the dose. Valium at LOW doses like 1 or 2 mg is enough to control spasms... Valium is the oldest anti-spasmodic. Are you also in pain?
I have wild jerking tremors, both arms, both legs. So I commiserate about looking "drunk". I pace myself--but the longer I am up, the worse it gets.
I'm really sorry I cannot offer you some miracle. Perhaps it helps a little to know that someone 20 years younger is also dealing with this... I have injuries at cervical, thoracic, lumbar and sacral and drs misdiagnosed me for over 15 years (including MS and CP, like you). I used to be very active... but am now 99% bedridden--but I don't give up.
Be aware that this problem with muscle rigidity and tremor can contribute to dehydration. Your muscles are not supposed to be constantly contracted, so you will need to have frequent tests of Sodium, Potassium, Magnesium, and Lactic Acid. If you start having headache with stomach pain and lack of appetite, please push chicken broth and fluids, and see a Dr--- you could be dehydrated.
The worst thing Helen, nobody understands... even doctors and nurses! I have severe back pain and cannot sit or walk more than 30 feet. Med personnel make great fun of me when I look "drunk"-- all because they have never dealt with this kind of ISCI. I have to carry a copy of my MRI so they will believe me.
I hope you'll write back, even though my post probably doesn't feel very encouraging to you.
Hi Susie, I'm pretty sick so I very much appreciate you helping with questions. I hope I'll be better soon, but I don't know how long---already been ill since July 1st. If you could keep an eye out for Qs, I'd be very grateful. Any problems, just use Report Abuse button for Staff to take care of it. Thank you so much, LifesView Thread
With intermittent low blood pressure evidenced by fainting spells, Keppra could have contributed.
The problem was or is How much O2 was her brain getting during these episodic periods of low blood pressures? Has she seen anyone familiar with assessing brain injury and Cognitive Functioning, for example, Speech Therapist, or Rehab specialist? Honestly, don't only rely on a neurologist--- Likely male, he will be more apt to blame her age and sex (female). These might (might!) be part of it, but some independent evaluations could help sort it out.
I am on my way out the door, so I can't write a full post right now. But I wanted to ask if you might think about this... You wrote "My main concern is that I have spent 7 years building a career in something that is all of a sudden against my "new" personality"...
I'm wondering, what might your new personality be 'against' about your old personality /or job?
Did he say dura white matter or dura white mater (1 t) ?
White matter (http://en.wikipedia.org/wiki/White_matter) conveys nerve signals.
The dura mater (http://en.wikipedia.org/wiki/Dura_mater) is the thick covering over the brain. It does not transmit signals except cervical and some facial nerves, instead, it protects the brain tissue.
When a person has self-identified the pattern and if they talk to a therapist, the therapist often confirms one of several types of dissociation.
The scariest part of dissociation is not understanding what is happening.
The most comforting part of dissociation is realizing your mind is doing what it's doing as an attempt to "help", not hurt. It can feel "crazy"--but it is the most "sane" event(s) once you understand what's happening.
The most confusing part, though, is the period of time between realizing this is happening...to figuring out what your mind is trying to say. Often, this period takes years. It's a slow process, only because the inner mind (of dissociation) can only "tell" so much at one time and the conscious mind can only figure out so much of the dream-like images at one time. But, like sleeping dreams, the more we pay attention to the images, the more the pieces make sense. It is truly fascinating and actually exciting to realize what the mind can do!
IF you think this might explain your "symptoms" or if you are curious to find out if it is this, one of the best things you can do is write. Jot down ANY pieces you remember. If you can't remember exact images, write about how it felt--even if "I felt nothing" or "It was all a blur". Often, what happens is, once your mind knows it has gotten your attention, it will start giving you more details. Pictures become clearer. Emotions can be clearer.
I understand about no insurance. If this is something you want to explore, perhaps you could call one of the national hotlines, like RAINN.
As I said in the beginning, it may be that this IS something physical. At least get your vital signs checked, like B/P. But if it isn't physical, I wanted to describe dissociation because your description sounds very similar... driving... just when doing nothing... One lady I know had her first episode when she opened a drawer to get a spoon... and experienced 20 seconds of "weird pictures", She started having more episodes, always random... but over time, she figured out common emotional "triggers". There was a theme to what was happening to her.
I don't know your background/history, so I will write some things "generally speaking". You will have to decide whether my descriptions fit or not. And, I want to emphasize that I'm not a doctor, that I'm not saying your symptoms are 'all in your head', or that you might not have something physical going on. I present the info below because it is very common to have strange physical symptoms from non-physical causes... and often, both / either the physical or non-physical causes get overlooked. Women, especially, are disbelieved (docs act like we're just emotional when it is physical, or they send women for thousands of dollars of tests to cover their butts looking for something physical when it isn't).
Often, when a person has been abused he/she will have some disconcerting symptoms that begin between teen years and age 30 (typically in their 20s). Intrusive images start-- They come out of nowhere, are random, and seem almost dreamlike. Some images or feelings can be very confusing or scary---or---can feel so disconnected that there's no feelings.
Normally, people "associate" between experiences and emotions, so "a memory" seems mostly like one unit and something easy to tell in a mostly complete story, even if not all 'good'. For example, a story like: "I had a birthday party. I was 7 and mom baked me a cake with orange flowers or something. I was so happy! She stood me up on a chair to blow out the candles--i can still see the candles flickering-- just as I was going to blow them out, my stupid cousin knocked the chair and it crashed. I fell, broke my arm. I was so mad because somebody hit the cake and smooshed it. My arm hurt so bad." There can be missing sections, but the memory makes a "story".
When kids are abused, they "dis-associate" events, so events become pieces of memories. Dissociation can be experienced in seconds/minutes, or hours. During moments of dissociation, it can feel like what's happening (in the mind or body) is so different from normal experiences, or even that its happening to someone else. Dissociation often comes back strongly from teen years up--normally when the person is away from the original abuse .. but can happen when under stress. It's random, and different triggers can cause moments of seeing images/ having feelings that often don't make sense. When it stops, it's often hard to remember exactly what the images were... It can feel so dream-like that it literally feels like when sleeping...we dream and forget.
Dissociation and 'self-hypnotic' effect is very normal for humans. For example, driving can induce a self-hypnotic state... meaning, driving becomes such a habit that it lets our minds free to roam. We 'dis-associate' from our surroundings temporarily and "see pictures" in our minds---but suddenly, we need to come back to the present. If it only happens once, people shake it off and ignore it. When it happens more than once, we notice. When it becomes a pattern (although random), we go "what the heck is going on!"
Dissociation often appears during stress/anxiety. So of course it has physical sensations--headache, dizziness, palpitations, sweating, cold hands...feeling of being disconnected from the body or a body part being separate. For example, it's common to feel the head has disconnected from the body. Other people know it's their hands but their hands seem disconnected from Self. Etc etc.
People who dissociate and see pictures learn that breathing and touching or deliberately focusing on objects helps "ground" them back into the here and now. Many people discover on their own what is happening, because they try to fix it (so, I deep breathe...discover that helps... and from that connection, begin to rule out other causes)... See next post...View Thread
Rather than epilepsy, I'd first wonder about things like temporary changes in blood pressure or blood glucose levels...and about equilibrium (ears and such)...and your menstrual cycle. You don't say exactly what 'triggers' it or what you do after it? Since it is so short, what you do during it might not give further clues.
Describe what you mean by "feeling dizzy". Have you ever had palpitations? Racing heart beat? Anxiety? Sleep disorders? Do you sleep poorly? Does the symptom correlate to being hungry? overtired? Have you ever experienced what they call depersonalization-- like standing apart from yourself but seeing yourself, or a feeling of being 'detached' from yourself? Has a dizzy spell ever led to passing out? Are the images/thoughts random and disconnected...or...do they have some theme? What is your best guess as to what stops this dizzy-dreamlike spell?
We aren't docs here, but those would be my beginning questions.
The brain is certainly a mystery sometimes! Have you ever seen the email with a paragraph using colored text on the words, like Green, Blue, Black---except, the word Green is in RED, Blue is in HOT PINK, etc? What reading that text shows is that even though we all "know our colors", our brains can be easily confused by the illusion between word-colors and colors, even after we read that email before and know the point of the message.
So I would probably chock this up to a simple brain-eye confusion. However, you might mention this to your doc or eye doctor, just to reassure yourself.
The scalp is highly vascular, meaning, it has many small blood vessels throughout the scalp. This is why body heat escapes more easily from the head, and why even a small head gash or wound bleeds so much more.
The head/scalp also has many small nerve branches, including supraorbital, supratrochlear, and zygomaticotemporal nerves. This website uses medical language, so it might be hard to understand, but it shows illustrations of nerve pathways: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3262995/
Basically, every hair shaft and the skin have dermatomes from afferent nerves that allow us to feel the smallest sensations. For example, wind just blowing against head hair gives off sensations.
With a head wound, the wound itself and sutures (stitches) or staples all interrupt the normal or usual nerve sensations. Certain nerve injuries can cause very strange symptoms, like "stocking-glove" which is the sensation of wearing socks...or gloves... (depending on body area affected). A feeling of a "tight hat" or head "wrapped in cloth" are well known during certain types of headache syndromes or can occur after a stapled or sutured head wound.
Nausea, nausea with postural changes (like bending over) could relate to either a headache syndrome or the interrupted sensations from nerves. I would wonder if it's a headache syndrome?
Either way, this isn't 'in your head', though it affects your head. Talk to your doctor for some ideas about how to lessen this sensation.