I mix up words every day all day EXCEPT first thing in the morning when my brain is really rested.

jena,

As a speech pathologist, I am surprised you do not have a better understanding of the word finding struggles we have. Mine are definitely not an attention issue. I can struggle to find simple words or complicated words.

My neurologist suggested it is a gating problem deep inside the brain. The information flow does not make it down the correct maze of circuits.

Sometimes. like I said before, I can think the word but struggle to get it to my lips. It is like my lips do not know how to form the word. I can put together a very complex thought but not be able to find a single word to express that thought. It is like someone has shot holes in my vocabulary library. When I go to 'pull' the word from the library, it is not on the shelf

I will frequently use a word that starts with the same letter or even first few letters. For example, discover might come out as disconnect. This limitation causes me to speak in very simple terms.

The diffuse axonal injuries common to concussion are quite different than the focal injuries of a stroke or penetrating injury. The inconsistency of function can be simply humorous to outright devastating.

I have a repeated issue when I am under stress due to physical effort. Instead of a grunt or groan as I exert force, I will say 'ouch.' It is an involuntary response to the physical strain. When I actually hurt myself, I rarely say ouch. Go figure.

I don't believe mine is an attention issue either. I already talk slow because I'm trying to find the right words. My neuropsychologist said my mixing up words is part of my tbi/pcs.

I also don't like when people make it out that real problems aren't anything other than mental issues or, in this case, attention issues.

Jena,
I was looking in here for my husband, who is still suffering from pcs nearly 18 months after we were all in a really bad car accident. But I have a question for me, not pcs, but I don't see another forum that applies. due to shoulder/clavicle/etc injury in the accident, I now have vascular thoracic outlet syndrome which is also causing subclavian steal syndrome and vertebral-basilar insufficiency (recently diagnosed by ophthalmologist as my right eye is "not working" right). most of the other symptoms listed for the sss and vbi fit frighteningly well. But one thing I don't see, but wonder about, is that I'm losing words. I'm talking, and I know there's a right word for what I want to express, but I have no idea what it is or how to get there. In the past, a trial of topomax (different problem re fibromyalgia) had me dropping words, I'd get right up to what I wanted to say, then whisk! the word was gone, I'd know what I wanted to say, often I could see the first letter of the word in my head, but that word was blocked, but I could push past or find an alternate. This new thing is different. I know what I mean, but I cannot get to it, not just the word is gone, the whole set of words I might use is gone. Much later on, an hour, several hours, the idea and the specific words for it might come back, usually triggered by something someone else says. Do you know anything about this kind of problem? Is it related to the sss or vbi, or is it just I am so exhausted from lack of decent sleep from all that has and is going on injury, complications, & painwise?

I am putting in a call to my neurologist today. But it takes forever to get an appointment with her. And mostly, my finding the answers myself before I go in to any of my many, mostly clueless doctors, works best.

winic1,

You problem sounds like it is likely manifesting as cerebral ischemia. This lack of good blood flow can cause many symptoms similar to PCS. Many with PCS have inflammation in the upper cervical vertebra than can occlude the vertebral arteries. This blocked or reduced blood flow would cause the same symptoms regardless of where the blockage or restriction is.

The word finding problems you are having will likely continue until you can increase the blood flow. Have you been examined by a vascular specialist?

I am concerned that your reduced blood flow will cumulatively slowly damage your brain. Speech rehab will likely be unsuccessful until the blood flow is corrected.

I hope you can find a doctor who will aggressively work to return your blood flow to your brain. Besides the word finding problems, I would suspect you also have nightmares or other stressful dreams. The many symptoms of poor cerebral blood flow can be very frustrating and elusive.

btw, I have believed I have had a cerebral basilar ischemia since 2001. I have been hard pressed to find a doctor who will look into this possibility. I get inflammation in the upper left area of the neck near the left occipital condyle. When this happens, that side of my head tingles and I will have stressful dreams and even central sleep apnea.

My best to you.

I don't dream at all. Maybe once every few months. I don't sleep worth a damn either, takes too many pillows propping too many parts of me, fall asleep, move, pillows shift, wake up again. But as sleep-deprived as I've ever been in the past (including two nine-month total insomnia pregnancies) I've never had this problem before.

Got message back from my neurologist's office, she's away for another week, I am supposed to call back then. But I'm going with hubby to his this Friday morning. Will get some info out of him while we're there for hubby, this guy is great.

I do a great amount of sleeping in a reclining chair. I get some of my best sleep that way. I need support under my left arm so the weight of my arm does not pull down on my shoulder.

I have also learned that I need the 'just right' combination of sheets and pajamas. Quality cotton is all I can sleep in. Synthetics do not have the same consistent feel. As you try to sleep, pay attention to all of the different sensations. Then, slowly work to remove or negate those sensations, either with fabrics or support or such.

I need minimal air space under the sheets/blankets. As a result, I have heavy afghans on top of me. My wife has only a simple sheet and blanket but I have tons on me. I also need my bed preheated to a normal sleep temp. We have electric mattress pads. i start it at 2 a hour before bed. then, turn it to 1 as I get in bed. No sensation of a cool bed. I get in my good position and will often wake up in the same position.

I would love an adjustable bed (medical style) but my wife does not want one. We have a semi-firm mattress with a pillow top plus a thick pillow top style mattress pad. The pillow tops make it so the bed seems to cradle the sleeper without having a saggy bed. And, we did not spend a fortune on our mattress set (High $400's)

It took some time to find the right combination but it was well worth it. The simple concept of resolving ALL of the sensations so the brain can relax made the difference. I used to wear velour gloves because my hands had some Carpal Tunnel symptoms. The soft gloves removed the tingling sensation.

The basic problem is due to the brain not being able to ignore the odd stimulations/sensations. So, they have to be addressed individually with other means. My gabapentin (Neurontin) helps my brain resolve the minor sensations that I cannot resolve otherwise.

btw, I have learned to use foam ear plugs recently because my wife has needed a humidifier on during the night. They usually fall out by the time I wake up but resolve the sounds so I can get too sleep.

I am not trying to say this is an easy task. I was paranoid to try to sleep for some time because of the problems I would experience. Now, I know how to prevent them in most cases.

My best to you.

A water pillow made a HUGE difference for me when it comes to sleep. It took a few nights to fill it the right amount for personal comfort. I don't sleep anywhere without it.
http://www.chiroflow.com/en/index.html

My husband got the concussion, which just won't let go, even now almost 18 months later (they even just sent him for a sleep study, he finds out the results next week), and a smashed wrist that's had surgery 3 times and will never be the same. I got multiple broken bones in my trunk, back injury, knees, surgery to finally fix non-healing bone in shoulder, subsequent scar tissue causing circulation problems to my arm, some breathing issues, and now messing with blood pressure, pulse rate, and now up into my head. So, to sleep, I have to satisfy head, neck, shoulder, arm from shoulder to hand, back, hips, knees, avoid certain reclining angles where I just sort of don't breathe...have been using recliner, couch, bed with wedges, 5-7 pillows of various types, shapes, sizes...what I need is a giant foam packing pillow with the shape of me cut out of it, just pack me up for the night like I was getting shipped somewhere.

winic1,

Sorry to hear you suffered such a broad level of trauma to your body. I can't imagine what you are going through.

I would not discount the possibility that you suffered a concussion, too. You don't have to hit your head to suffer a concussion. The body jolts can easily jar your brain. With your condition, the doctors were likely focusing on your other trauma with your head being a distant second or even tenth issue. As long as your pupils were equal, they would not often get concerned about your brain.

It is not uncommon for concussions to be missed entirely due to the other pressing injuries from an auto collision. Insurance companies will use this situation to discount the later PCS complaints. One concussion specialist has even lectured about the need to get "possible concussion" entered into the medical record just because there is evidence of strong impact forces to the body. This sets up a situation where later complaints can be better explained after the other physical injuries have healed.

He spoke of the need to have the appropriate IDC-9 (International Diagnostic Code) of usually 850.9 (Concussion unspecified: A violent jar or shock, or the condition which results from such an injury.) entered into the medical record.

Your husband likely has an IDC-9 or IDC-10 code of 850 in his medical record.

I can fully understand the need for a custom foam packing form so you can be packaged to be sent off to sleep. My wife calls it my cocoon. She can tell when it is working because I get this contented and "dead to the world" look on my face. If I am not sleeping right, I will often have a grimace on my face.

Right now, it is 4:00 AM. I forgot to take my gabapentin last night and just got up after struggling to get to sleep for the past so many hours. Now, I need to wait a hour or so for my body to settle down.

I just though of a favorite thing I do when I have access to a pool. I like to hold my breath and sink under the water and just float under the water. It feels like being weightless. It sounds like you need something like that to sleep. Sort of a suspended existence while you get some rest.

My best to you.