MRI results today

[RisibleGirl]

Hey gang,
I visited the Neurologist to get the MRI results today. She said the MRI shows a "reaction" in the brain where I hit my head. She also said that the front shows signs of bruising and said that probably happened when my head whipped forward and then back again after I initially hit my head. She likened it to shaken baby syndrome.

I'm glad, of course, that the MRI didn't show anything other than injury from hitting my head (brain tumor, other neurological diseases, etc.), but I feel even more defeated than I did before this news. I guess it's just the finality of it all.

My neurologist is a wonderful doctor and I'm very confident in her abilities. I cried a little, and she said she understood and is there to help me in any way. She asked me what the most frustrating thing is 'right now' and I told her that I feel 'dull'. I started in a new department 2 months after hitting my head and they don't know the 'old' me. I used to be on top of my game- ya know?

Anyway, she prescribed Provigil- something that she said she prescribes for people with Narcolepsy and said that this might help me feel more alert. I'll let y'all know how that goes. She assured me that it's not going to make me more jumpy or anxious (something she's given me Klonopin for).

So, there we have it. I plan to have a very short pity party, and then I'm going to soldier up. :rolleyes:

[Lucy]

HI Lori. I have meant to reply to you some time ago, and let you know my story, I still haven't but I will get there sometime in the future. I actually have it written it is just somehow attaching it.

I just felt it was really important to let you know - good grief - what!!! The feelings are there, but I can't get the words! Anyway - very quickly as I am at work - my biggest problems have been from pushing myself - soldiering on etc and not making allowances for the on going symptons. I carried on so much that I literally fell over. The pyschologist that I am seeing now says that with my personality type - and you sound like me - has the worst problems with dealing with PCS. Like "I will keep going until I finish this, I'm lazy if I have a rest, I don't like asking for help because I used to be able to do it and all the rest of that kind of "stuff" "

I think that how you cope with this at the beginning has a huge effect on the end result. At least you know early that it is PCS and can go easy on yourself - I won't want you being like I am now 6 years on. I also don't want to scare you, but please please don't push yourself - be kind to yourself and I do know that it is like the reverse of all our ingrained habits!!

Take care, Lynlee

[PCS McGee]

Hey gang,
I guess it's just the finality of it all.


What's so final? Did your doctor say you'll never recover?

[Lucy]

Very true PCS McGee!! Who said it was final - I still have hope!!!! Lynlee

[RisibleGirl]

Wow- you totally nailed it on the head. I *am* that type. You got me to thinking that maybe this is a lesson that is way overdue....

I am an overachiever, take pride in how much I'm able to accomplish, and am always being told to slow down. My husband brags that I'm the smartest person he's ever met ('course he could be prejudiced), and I have to admit that I've always taken my ability to do anything placed before me for granted.

Now I feel like wearing a sign, "I *USED* to be smart" or "I used to be able to talk in front of large crowds without a worry"...

This is slowing me down, no doubt about it.

I think I have some attitude adjustments to make. You are SO right- I need to be kind to myself.

Thank you for that. I really did take it to heart.

[RisibleGirl]

I know it's not a death sentence and I still DO have hope that one day all this will go away. Even though I'm normally the optimist in the group, hearing from my doctor that I need to lower my expectations of a full recovery made me a little pessimistic. I was having a bit of a pity party when I wrote that.

Pessimism is always temporary with me. I'm going to blame the 'tude on being tired.

Thank you for putting things into perspective. I really do appreciate it. :grouphug:

[Lucy]

HI Lori

I WAS a perfectionist, workaholic who was picky, critical, inpatient, always looked immaculate, had the perfect house, husband, son and daughter,and golden retriever and was and still am (on my good days and when I am not tired) reasonably/very intelligent. I could try anything and be able to do it and do it very well and easily. !!!! I have now come to realise what I had and what I have lost. (the husband is included in what I have lost). I am always saying I used to be able to do this - that whatever - work 8 hours, have 20 people for barbeque, play interclub tennis, sew fantastic clothes - on and on. I now can work 3 hour days, have 2 people for a barbeque, don't sew - sewing is stressful in fact any suprises are stressful - inpromptu does not exist any more for me. As a result I think I could be a nicer person - I am now far more tolerant, but do get annoyed with people who have got all day to do something and make so little effort. I have found out who my true friends are - they don't care if I can't go out, have a sleep during the day or have an untidy house (I hate having an untidy house but then it only seems to bother me). Have to go, haven't checked this for spelling grammar whatever so excuse me! Oh - my psychologist said that on my grave stone it would have "she always coped" - that because I have not yet been able to sit down and cry and won't ask for help!

Lynlee

[RisibleGirl]

Wow- we could be emotional TWINS! All those things you've listed are me too!
I love what your psychologist said, that's priceless!

I'm sorry that you lost your husband. That's my greatest fear, even though hopefully this fear is unfounded. Every night when I start jerking around, it makes him very nervous and he asks me if I've taken my medicine yet. I can't imagine that it's very relaxing to sit next to me when I'm unable to keep still.

I have a feeling I have a lot to learn from you. Thank you for your kind and thoughtful responses. You have no idea how much I appreciate it. :hug:

Lori

[Lucy]

Hi forgot to tell you Lori that you are so lucky that you have physical evidence so soon! I was constantly told there was nothing wrong with me because I still looked and sounded ok - in my good times and as the tests - neuropsyc tests were always scheduled for the good times I passed with flying colours - was even told that most people would be happy to have achieved my results - big deal it didn't trash them doing the tests and they didn't have to have a sleep afterwards. It was about 4 years before I had any physical evidence and that was a QEEG that I went to Australia for - at my expense and not the insurers. I was constantly looking for physical proof as there was always that self doubt eating away at me - could I be crazy and the ex having told me it was my attitude for the reason I was no better.- Once I did see the physical evidence I felt a little better and did make some allowances for/to myself. But it is extremely difficult to change your self image. I have decided to get another opinion of my MRI pics after reading on this site.

We are going to Crosby Stills Nash tonight - I can tell you now that I will be a zombie for a week afterward but that is a sacrifice I am prepared to make.

Lynlee

[RisibleGirl]

You are SO right about that. The last appointment I had with my neurologist, I told her that I felt like a hypochondriac because I had so many different things going on.

It was nice for her to assure me that I was not being a hypochondriac, but now having the physical evidence of why all this is happening gives me permission (for lack of a better word) to just deal with it and quit trying to make it stop.

It's a real blessing to have found this forum to read the thoughts and experiences of other people who are dealing with the same things. It makes a huge difference.

:grouphug:

[Lucy]

Concert was good - (we get some good performers out here) pity Neil Young still wasn't with them - of course after all that noise I couldn't go to sleep - I will probably be in for about 4 days of not being able to sleep. Thank goodness it is Friday and I can be lazy all weekend.

Giving yourself permission to take it easy with yourself is exactly what you have to do - except I seem to need permission from the world to do that. The pyschologist is has been saying to me that if it was somebody else what would you think - would you think that they were being lazy etc - of course I answer no - then she just says "well........"

Anyway off to work - put a smile on my face, act extremely cheerful, throw paper and files around, make lots of noise, drink coffee, charge fees, hope my settlements happen early and survive until 1.30pm without anybody knowing how grotty I feel.

Then I can come home fall onto the bed and hopefully manage to go to sleep.

Lynlee

[RisibleGirl]

Sleep problems has been one of the issues I've had since the head injury. My doctor prescribed a low dose of Seroquel (75mg) to help me sleep and it's been a God send.

You might ask your doctor to try that on you. The Seroquel also has an added benefit of leveling your emotions (not like a zombie- just less anxious) during the day because it has a half life of about 12 or so hours.

I now get at least 8 hours of sleep, and don't wake myself up whilst doing wacky things (sleepwalking, sleeptalking, other strange things). I only wake up my husband. tee hee.

Sadly, as you know, 8 hours isn't enough- but that's what naps are for.
~Lori

[Lucy]

Hi, are you taking both the seroquel and the provigil?? I shall ask my GP about both this week. Do you need one because you are taking the other?

Are you working full time at the moment or have reduced hours??

Also are those that you are in contact with at work aware of what has happened to you?? I don't think my clients have realised - my standard thing if I have forgotten something is that I will research and come back about it. The amount of other people that just don't understand head injury has stopped me wasting my time attempting to explain.

Do you find it hard to cope with noise as well?? And how are you dealing with that? I find the hum sound that comes with a crowd really hard to handle.

Sorry about alll the questions!!

Lynlee

[RisibleGirl]

Yep, I'm taking both the Seroquel and Provigil. I'm also taking Klonopin.

RE: Seroquel
The Seroquel was prescribed because I was getting little to no productive sleep after I hit my head because I started sleep-walking, sleep 'watching tv' (I call it that because as I slept, I'd lay on my stomach, with my head propped in my hands trying to balance all night), LOTS of awful dreams, etc. every night.

My Neurologist explained that I was doing this because it was something I've always done when under stress (but not to this degree, of course). She said that with some people after hitting their head, their ability to handle stress diminished. She said that she couldn't prescribe me Ambien (I think that's the one) because that drug causes people to do weird things in their sleep even though they're not prone to it), so she gave me Seroquel, starting back in July.

RE Provigil
The Provigil is new to me and I've taken it twice now. She prescribed that because she asked me what was bothering me the most after I cried in her office last week. I told her that it was my inability to concentrate and I felt that it was affecting my work. She said that Provigil was mainly prescribed to narcoleptics, but it has an added benefit of giving clarity of mind and more focus. So, I said "sign me up!"

It really DOES work well for me. I thoroughly enjoyed working the day I took it, because I didn't feel 'stuck' so often. It is great stuff.

RE: Work
I started a new job in the same company two months after I hit my head. Thankfully, the hiring manager has known me for years and knew what I'm capable of, so when I was totally flubbing the interview (I couldn't even remember my job title and things like that), she was understanding. I told her about the head injury and what was going on. She hired me anyway. :)

As for the rest of the team, I've told one other person that works closely with me because he sees a lot of the head fog (hopefully no more, now with the Provigil). Since he didn't know the 'old' me, I wanted him to know that I was not usually like this. I also told my manager's manager because my manager is out on medical leave at this time. I gave her permission to tell anyone that might ask her why I'm acting like a loon. ;) Seriously, I got lost on my floor the other day and someone caught me and chuckled at me. I also jerk around sometimes and I'm fairly certain that it's noticeable.

Yes, I'm working full time, and have been since I hit my head. I've taken two days off (the day I went to the ER with seizures and the day I had a bunch of tests all in the same day). I'm afraid that I'm hard-wired that way, but I do NOT push myself the way I used to. I couldn't if I wanted to.

I think of it this way, all of my previous managers have commented that having me is like having 3-5 employees because I was able to accomplish so much. Now? I think I'm like having one employee- and I'm OK with that. I've given 18 years to my company (times that by 3 to 5 if you want....). I plan to retire in January 2015- so they get one employee until then. The other 2-4 retired when I hit my head. :rolleyes:

I'm fortunate in that I've always telecommuted 3 days a week (it's an ADA thing because of my liver condition), so I'm in the office for two days and home for three. I leave the house at 5:20 a.m. and am at home at 6:00 pm on those days. I sleep on the train going to work and coming home and pretty much zombie out the minute I get home. The days I'm at home, I work just as hard- I'm just a heck of a lot more comfortable in my sweats and I don't have the commute. Sometimes I'll even have a nap :)

Noise
Crowd noise doesn't bother me a bit, unless someone screams or something. Surprise noises (surprise anything- lights, touch, noise) are what set me off into myoclonic jerks. Hence the Klonopin. :o

Yay! End of the novel! :)

[Dmom3005]

Honestly sounds like the perfect kind of job for you.

Donna