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Brain & Nervous System Disorders Message Board


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sorry...this is just an extension of the first....too long winded in it and had to edit.

List of some of the symptoms I still struggle with: But before I forget
If she is willing, please have her log in and talk to me. I will help where I can and help her to understand why things are going on in her head. The biggest thing being is we may be slowed down, but we are still very intelligent, even though we don't feel like it or show it at times.
~sensory integration dysfunction: it hurts when my husband pokes me..it's not hard, but feels like he's poking me on a fresh bruise..the whole sound thing...I also can't tell where the sounds are coming from most of the time..my eyes have a hard time focusing, even with my glasses on...and a few more that I can't remember.
~symptoms that are identical w/ ADD...lack of attention, no follow through, impulsiveness, hard time w/ motivation and comprehension, etc.
~migraines to boot..what worked for me was the tricyclic anti-depressant called doxepin..it's the generic of something...but it's cheap! It stopped the suckers dead in their tracks and also helped me with some of the other aches and pains. I am now on 50mg, second to the lowest dose and probably less dangerous than the one you mentioned.
~hard time winding down after I'm worked up...also, easily physically and mentally fatigued.
~feeling of being left out because people start to avoid you, rather than walk on eggshells...I've come a loooooooooooong way with this one on my own..would have been easier with the rehab and less painful emotionally.
~what's called a swiss cheese memory...the hole is never in the same place! LOL Cuases tons of problems...people think I'm lying a lot because I never tell the same story, the same way, twice, but if they'd listen, they'd know it's just a different piece of the same story...we just don't always remember what parts we told before and sometimes it has to do w/ our surroundings jogging a certain part of the memory. Also causes problems with the doc believing you!
~I used to be a top speller, now I have to guess over some spellings that would never have been a problem before....but now cause great stress because I can't figure them out.
~anger that doesn't seem to be tied to anything..when I get this way, I found that doing something repetative helps me calm down. I amke beaded/silver jewelry and I do this when I'm upset...if the carc. kicks in at the same time it makes for some interesting art work! I'm convinced that all those abstract artists that paint eyeballs in left field, off the face have the same problem I do and in their head, it wasn't abstract!
~help her isolate triggers and also develope some coping strategies ahead of time to stop melt-downs. You guys need to figure out what helps her calm down...be it musci, drawing, writing in a journal, shooting a few hoops, solitaire on the computer, etc. and then allow her to do this regardless of the situation, when you know she's headed for a melt-down.
...I'll be the first to admit that sometimes we use this to our advantage but it's usually because those around us choose to ignore what we're going through and it's our only way around things. I got to a point that when I'd have a narc. attack that I'd pick a fight with my husband so that he would want me to go to our room to mellow and then I'd take a nap...it was easier than saying I'm tired and having him look at me like he was irritated or disappointed.
~watch her for subtle signs that she's stressing or figure out some signal that she can give you if you're around others and she doesn't feel comfortable...then you can make an excuse for an exit or time out...maybe, if possible, send her to get something from the car or something that doesn't seem to point at her directly.

What type of support system do you have? Please, explain it to close family and friends and ask that they be senstive to her changing needs and MAKING FUN OF SOME OF THE STUPID THINGS WE DO IS OFF LIMITS!! Maybe it was funny before this happened, but now, that's traumatic and embarassing and lowers our already declining self-esteem. When she feels understood, we're less likely to lash out at the little things that are no big deal. We already feel dumb and don't need any help proving it. And keep in mind, we're also dealing with the loss of self, because we lose parts of us and things that we used to know and do well.
*********Also, sometimes when you find her procrastinating or getting angry when asked something, it may be because she's afraid to admit that she doesn't get what is being said and knows that she should know it. So, the only defense is anger because many people will just look at you like you're retarded or lying if you say you don't understand it.

~when talking to the doctors about what you have learned, try a few different approaches...depending on the ego behind the doc..."I have been researching everything I could get my hands on because I know how varied these situations can be and this information is what I have found to be the most closely related to our particular situation. I don't understand all of it but got enough of it to think it worth discussing. What can you tell me about this?"

That approach still leaves their dignity in tact and makes them less defensive, usually. Then, if you have no choice and are stuck with a twit, you will have to get pig headed and ask them to document in the charts why they wouldn't acknowledge or discuss your concerns with you...when this happens, they're more likely to take you seriously. But be aware that they're not likely to be real friendly with you after being called on the mat...but if that's what has to happen, it has to happen.

...also, quick thing popped into my head, off this current thought...can you pay out of pocket and have her x-rayed in the same position they did them and that way to you have a copy...granted they may not be identicle, but fairly close I'd wager...-k- back to the subject...

If you find you need more time with the doctor than the HMO 6min hour, ask what time would be best for you to come in (w/ or w/o your daughter) and spend about a half an hour or so with him/her. Also, let them know that you know their time is valuable but you feel it would best serve everyone to take one chunk of time, rather than a bunch of little chunks because you can address all your issues that you've been unable to cover...because when you have a regular appt. you aren't given the time to address anything outside of the exact reason that you're there.

I know, I'm incredibly long winded, but when my brain is working it refuses to stop! I'll get the website to the mods for permission and also get my hands on a free e-book that you can print from a neuro....I think he may be near you...maybe not..where did you say you were from? I think he might be in Illinois, but he had awesome information in real people terms...as well as the symptoms and coping strategies.

Do you think your daughter would benefit from talking to me or someone else here? If you want to keep your "chats" quiet, for fear of hurting her feelings, have her post it on the teen health board and on't tell her about this one. You also need to respect her want for privacy, too...because she may have some fears that she is embarassed to share with someone she knows in real life, not a faceless stranger. If she does want to talk, or to me specifically, tell me on this thread and have her post it to Angel77 and I'll look for it.

I hope this finds you both as well as possible and will pop back in after I track down the heap of papers that have all the info...oh, yeah, also printing out some charts for her, that lay everything out, word for word, will help her. She will probably initially be angry or hurt....I have gotten to the point that I have to take a magic marker to the cake boxes to mark off the ingredients that I've put in and have to make sure I don't do it until after I've put them the mix....or I'll think I put them in and won't be able to figure out what's up with the cake...

...nuther detour...literal thinking! I bought a kitchen timer that says, "flips open" I thought, "Cool!" I wound the little thing up and closed it and watched it as the alarm went off and was disappointed that it didn't flip open when the alarm went off...then it hit me, meant it flips open for use! Or, another example is when I set my cell phone for a timer for pizza. My husband asked if the pizzas were burning and I said, "No, they can't be burning, the timer hasn't gone off yet!" Problem was the timer was set for an hour and ten minutes, not just ten minutes...but in my brain, it couldn't burn until my phone said so!

...Anyway....forgot where I was, time to wrap it up and give your poor eyes a break....back in a bit when I get clearance on the one site! Toodles.





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