Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


advertisement
Reply
 
Thread Tools Display Modes
Old 11-19-2010, 03:07 PM #1
MarileeG MarileeG is offline
Junior Member
 
Join Date: Nov 2010
Posts: 29
10 yr Member
MarileeG MarileeG is offline
Junior Member
 
Join Date: Nov 2010
Posts: 29
10 yr Member
Default New Member - first post

Hi everyone,

First of all Mark in Idaho: I want to thank you for your many helpful posts and esp for posting the link to the TBI Survival Guide. I don’t know what we would have done without it. Please know you’ve made a positive difference for me.

My accident just happened august 2010. I was mountain biking – with helmet - at high speed downhill on a trail I’d been on many times before. I hit a big boulder in the trail and flew forward over the handlebars. I landed on my head.

After a couple ER and primary care visits I was fortunate to be referred to a neurologist who diagnosed me with PCS and has prescribed lots of medicine.

I’m 40, female, have a history of sleep disorders, and had concussion as a kid. It was amazing to see that primary care dr’s know very little to nothing about PCS.

I’ve been dealing with terrible headaches, unbelievable fatigue, difficulty walking / weakness on the right side of my body (in PT for this), problems with balance, dizziness (has improved) nightmares and disturbed sleep, foggy brain. Sometimes I feel like I have a bobble-head.

I’m very sensitive to noise – I haven’t had a lot of success being in large groups of people / in public. Going to the neurologist is a major undertaking – all the stimulation and long way to walk in that enormous building can make me sick for days. Last time I was down for 8 days afterward.

Ringing in my ears. Some days I wake up with blurred vision. Reading and using the pc for more than an hour or so generally brings on the headaches. Light sensitivity. I spend a lot of time resting and/or sleeping

Has anyone else experienced weakness on one side of the body or difficulty walking?

I'm to see an ENT on Monday about the ringing ears. My expectations are low. I think he is going to tell me to do biofeedback. Has anyone done this?

I found this community a couple months ago and read through many of the posts. I haven’t joined this group before now because I was convinced I would be well 100% and back to work after 8 or 10 weeks. When 3 months since injury passed last weekend I started to realize this is a serious injury.

the emotional side of this has been really challening as well. I go through periods of being tearful. I can be emotionally "up" but i still cry at things i would never have cried about before the accident. Anyone else have this?

I'm glad to have found this group.
MarileeG is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
vini (11-26-2010)

advertisement
Old 11-20-2010, 12:09 PM #2
ConcussedinPA ConcussedinPA is offline
Junior Member
 
Join Date: Oct 2010
Location: Pennsylvania
Posts: 17
10 yr Member
ConcussedinPA ConcussedinPA is offline
Junior Member
 
Join Date: Oct 2010
Location: Pennsylvania
Posts: 17
10 yr Member
Default

Welcome to the forum. You are not alone. I will relate some of my experiences in the hope that they help.

I am also female, early 40s. My accident happened over a year ago. I was rushing to a meeting and fell due to a loose paver. Like you, I too landed on my head.

For me, I spent the first few months in denial and trying to push through the injury. Pushing though is not an option: I found that out the hard way. You are already one step ahead by actively dealing with the injury. It took me over six months to come to the conclusion that I had a severe injury.

I had and have many of the same symptoms. For me, getting associated with a good medical team (neurologist, TBI specialist, and TBI rehab team) has helped. I live near a major city and am lucky to have one of the nation's best hopsital systems available to me. Searching out the specialists and working with the insurance companies is very exhausting. Unfortunately it is something that must be done. Hopefully, you have a partner to help you with this process.

From your description of your symptoms, some of your problem might be vestibular. An ENT might be able to diagnosis this issue. I'll let others weigh in this one.

Large groups/crowds are unbearable for me too. Wearing sunglasses and earplugs has helped. If too much stimuli is added to my environment, I suffer from extreme overload and horrible headaches.

The emotions are hard to handle. Read the TBI Guide as it is part of the process I have done my share of crying and expect more to come in the future. Now, every day, I thank God I am alive and try to cope with this new life. Humour helps. Familiy and friends help. This forum helps.

Best wishes,
ConcussedinPA is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Concussed Scientist (11-20-2010), Grady Lady (11-26-2010), vini (11-26-2010)
Old 11-20-2010, 02:36 PM #3
Concussed Scientist Concussed Scientist is offline
Member
 
Join Date: Jul 2009
Location: England
Posts: 150
10 yr Member
Concussed Scientist Concussed Scientist is offline
Member
 
Join Date: Jul 2009
Location: England
Posts: 150
10 yr Member
Default Weakness on one side of the body

Hi Marilee,

I am glad that you are finding the forum helpful but yet sorry that you have felt compelled to join by the fact that you haven't recovered after three months.

I am sure that you are right to treat you injuries as serious. Post-concussion symptoms are really horrible, especially in the first few months after an injury. I do hope that your symptoms become milder in time as indeed my own symptoms have done.

Your general symptoms sound very like post-concussion symptoms with the possible exception of what you asked about specifically, weakness on one side of the body and difficultly walking.

I myself have, like you, been dealing with terrible headaches, unbelievable fatigue, problems with balance, dizziness and disturbed sleep, foggy brain, as you have described.

However, I have not had any weakness or difficulty with the motor function of walking. I have had some minor oddities in walking due, I assume, to balance, in that it has felt at times difficult to walk in a straight line and I have the tendency to drift in one direction. This has now recovered, but in any case was not due to a difficulty in moving my legs.

So, I wonder whether it would be worth asking your neurologist about any injuries that you might have in addition to post-concussion symptoms. I wonder whether you might have experienced something like a mini-stoke or damage to a specific area of the brain, or have a damaged or trapped nerve in your spine or generally something in addition. (I am not a medical doctor, by the way, so I am not qualified to diagnose these conditions.)

I do know, however, that once a doctor has come to the PCS conclusion they may stop looking for other types of injury. In my own case, I have PCS, but I also had injuries to my neck and back which were ignored. I think that my neck injuries were much less serious ultimately than PCS but possibly more easy to treat, so it was a pity not to investigate them at all.

Anyway, if loads of other people with PCS say that they have one-sided weakness then take the above with a pinch of salt, but I haven't had any one-sided weakness. I have had one-sided headaches and pain but nothing on the motor front, to answer your question.

Good luck with finding a pathway to a better place than where you are at the moment. We're routing for you.

CS

Quote:
Originally Posted by MarileeG View Post
Hi everyone,

First of all Mark in Idaho: I want to thank you for your many helpful posts and esp for posting the link to the TBI Survival Guide. I don’t know what we would have done without it. Please know you’ve made a positive difference for me.

My accident just happened august 2010. I was mountain biking – with helmet - at high speed downhill on a trail I’d been on many times before. I hit a big boulder in the trail and flew forward over the handlebars. I landed on my head.

After a couple ER and primary care visits I was fortunate to be referred to a neurologist who diagnosed me with PCS and has prescribed lots of medicine.

I’m 40, female, have a history of sleep disorders, and had concussion as a kid. It was amazing to see that primary care dr’s know very little to nothing about PCS.

I’ve been dealing with terrible headaches, unbelievable fatigue, difficulty walking / weakness on the right side of my body (in PT for this), problems with balance, dizziness (has improved) nightmares and disturbed sleep, foggy brain. Sometimes I feel like I have a bobble-head.

I’m very sensitive to noise – I haven’t had a lot of success being in large groups of people / in public. Going to the neurologist is a major undertaking – all the stimulation and long way to walk in that enormous building can make me sick for days. Last time I was down for 8 days afterward.

Ringing in my ears. Some days I wake up with blurred vision. Reading and using the pc for more than an hour or so generally brings on the headaches. Light sensitivity. I spend a lot of time resting and/or sleeping

Has anyone else experienced weakness on one side of the body or difficulty walking?

I'm to see an ENT on Monday about the ringing ears. My expectations are low. I think he is going to tell me to do biofeedback. Has anyone done this?

I found this community a couple months ago and read through many of the posts. I haven’t joined this group before now because I was convinced I would be well 100% and back to work after 8 or 10 weeks. When 3 months since injury passed last weekend I started to realize this is a serious injury.

the emotional side of this has been really challening as well. I go through periods of being tearful. I can be emotionally "up" but i still cry at things i would never have cried about before the accident. Anyone else have this?

I'm glad to have found this group.
Concussed Scientist is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grady Lady (11-26-2010), vini (11-26-2010)
Old 11-21-2010, 12:05 AM #4
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,417
15 yr Member
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,417
15 yr Member
Default

Marilee,

Welcome to NT. Sorry for your struggles.

My first suggestion would be to find an upper cervical chiropractor. Your right side weakness may be related to an upper neck injury.

You mentioned a history of sleep disorders. Do you have sleep apnea? If so, are you being properly treated for it?

Sleep apnea and PCS can combine to cause a miserable cluster of symptoms.
The terrible headaches, unbelievable fatigue, nightmares and disturbed sleep, foggy brain can all be both PCS and sleep apnea.

The recommendation to get a good vestibular check out is also worthwhile. Not all ENT's are equal. Try to find one with experience with PCS vestibular issues. Search this forum for other vestibular posts. There have been many.

The 'lots of medicine' sounds like your neurologist is taking shots in the dark. Not many drugs will help with PCS.

You said: < I’m very sensitive to noise – I haven’t had a lot of success being in large groups of people / in public. Going to the neurologist is a major undertaking – all the stimulation and long way to walk in that enormous building can make me sick for days. Last time I was down for 8 days afterward.

Ringing in my ears. Some days I wake up with blurred vision. Reading and using the pc for more than an hour or so generally brings on the headaches. Light sensitivity. I spend a lot of time resting and/or sleeping >

These are all classic symptoms. Have you tried dark glasses and foam ear plugs? At least for the time being, you will benefit from reducing the sensory stimulation both auditorily and visually.

Have you started a journal? It will be helpful. Also, make notes to take to your doctor's appointments.

You might ask for some help at your appointments. Even to the point of asking for a volunteer to push you in a wheel chair to your doctor's office. Then, use the ear plugs and keep you eyes down or even closed. This may sound extreme but your ability to communicate with your doctor is important.

I tell people that I have an auditory processing disorder. They will usually accommodate me. Your sensitivity is a processing disorder. Combine auditory and visual disorders and you get overwhelmed and exhausted. Been there, done that.

Women can be extra sensitive to concussions during the low progesterone part of their cycle. This is right after their period. Also, hormones can get whacked way out of balance by PCS.

Regarding reading, you might experiment to see if you tolerate different types of reading better than others. For me, fiction easily overwhelms me. More technical or analytical writing is easier for me.

Also, a page covered with print may be visually overwhelming. Try using a blank sheet of paper to cover parts of the page that you are not reading. I have to do this when filling out forms. If there are too many empty boxes or lines to fill in, I get lost with all of the blank spaces.

I am interested in what meds your neuro has tried to help you with.

Let us know how you are doing.

My best to you.
__________________
Mark in Idaho

"Be still and know that I am God" Psalm 46:10
Mark in Idaho is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grady Lady (11-26-2010), vini (11-26-2010)
Old 11-21-2010, 03:28 PM #5
MarileeG MarileeG is offline
Junior Member
 
Join Date: Nov 2010
Posts: 29
10 yr Member
MarileeG MarileeG is offline
Junior Member
 
Join Date: Nov 2010
Posts: 29
10 yr Member
Default Thanks for sharing your story with me

Hi C in PA,

Thank you so much for relating your story and for your words of encouragement. It helps so much to find that I'm not alone and/or crazy.

I hope that you keep getting better and better. I can't imagine what those first few months were like when you forced yourself to power through back to work. I can't imagine being at work trying to communicate right after the injury. at that point I could hardly speak to my family. It must have been so difficult...

I relate strongly to your coments wrt insurance paperwork and doctors appts, finding doctors, etc. ARe you able to drive? Not being able to drive has made things tough with all the doctor and PT appts.

I'm thankful I have a wonderful partner to help me through all of this. I worry about him carrying the load for so long and we're only 3 mos in. I'm hoping to be much better by the 6 mo mark, but preparing for it to be longer.

I'm seeing the ENT tomorrorow at our neurologist suggestion and hope he can help with the tinnitus and will ask him about the vestibular stuff. The PT is working on the vesitbular stuff as well.

I've tried to explain overload that results with too much stimulation to my husband. its so tough. The best i've come up with is it's kind of like when you hit your funny bone really hard and it hurts so much all down your arm. except its 25 times that. and its happenign in your brain.

I'm now trying to slowly add activities/interactions with others. If you have any suggestion on this I would love to hear what you've done.

Thank you for the suggestion on sunglasses and earplugs. I wore my sunglasses most of yesterday and that helped. I'm going to try earplugs too. Lawnmowers and garbage trucks are awful...

Am I remembering correctly that you are trying an airplane trip? If so, my best wishes for a quiet and peaceful journey.

I too thank God that my injury wasn't worse and for all I've learned about life and myself that I never would have without having experienced this. The TBI guide has helped so much - but i have to keep re readign it since my memory isn't the best. I think its time to pick it up again.

Its comforting to know you're out there and understand, and at the same time I wish you were well.

thank you again for sharing your story with me. it means alot to be able to hear it. my best to you

p.s. i'm still learning how to use the forum so please forgive any mistakes, etc.




Quote:
Originally Posted by ConcussedinPA View Post
Welcome to the forum. You are not alone. I will relate some of my experiences in the hope that they help.

I am also female, early 40s. My accident happened over a year ago. I was rushing to a meeting and fell due to a loose paver. Like you, I too landed on my head.

For me, I spent the first few months in denial and trying to push through the injury. Pushing though is not an option: I found that out the hard way. You are already one step ahead by actively dealing with the injury. It took me over six months to come to the conclusion that I had a severe injury.

I had and have many of the same symptoms. For me, getting associated with a good medical team (neurologist, TBI specialist, and TBI rehab team) has helped. I live near a major city and am lucky to have one of the nation's best hopsital systems available to me. Searching out the specialists and working with the insurance companies is very exhausting. Unfortunately it is something that must be done. Hopefully, you have a partner to help you with this process.

From your description of your symptoms, some of your problem might be vestibular. An ENT might be able to diagnosis this issue. I'll let others weigh in this one.

Large groups/crowds are unbearable for me too. Wearing sunglasses and earplugs has helped. If too much stimuli is added to my environment, I suffer from extreme overload and horrible headaches.

The emotions are hard to handle. Read the TBI Guide as it is part of the process I have done my share of crying and expect more to come in the future. Now, every day, I thank God I am alive and try to cope with this new life. Humour helps. Familiy and friends help. This forum helps.

Best wishes,
MarileeG is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Concussed Scientist (11-22-2010), vini (11-26-2010)
Old 11-22-2010, 11:47 AM #6
ConcussedinPA ConcussedinPA is offline
Junior Member
 
Join Date: Oct 2010
Location: Pennsylvania
Posts: 17
10 yr Member
ConcussedinPA ConcussedinPA is offline
Junior Member
 
Join Date: Oct 2010
Location: Pennsylvania
Posts: 17
10 yr Member
Default

Hi Marilee,

I am glad that my experiences can help. You are definitely not alone and are not crazy. I had these same thoughts early into this injury. I still have my moments.

A hard thing is remembering that you are not alone. Friends and family help. You need to ask for help. You may be very independant like me and find this an issue. Also some friends/family may not understand. My circle of friends is much smaller since the accident. I also just gave my family a copy of the TBI Guide. You might try this with your husband -- give him a section at a time. I also try to remember to tell my family/friends at every opportunity how much their support means to me.

You asked about driving and for me that's a tricky subject. I live near a major city with a great transit system. In the beginning when I could not drive, my friends and family stepped up to the plate and drove me if needed. I greatly limit my driving to nice weather and short trips. I do not drive in the city. I ask friends to drive me to doctor's appointments, etc.

As for doctor's appointments, Mark had some good ideas. Also, my TBI doc gave me some great advice that works for me. Ask a friend to drive you if possible. Wear your sunglasses and earplugs. Have your friend actually guide you into the office so you do not have to deal with all the crowds, etc. When you get to the appointment, explain that you suffer from light/noise sensitivity and ask to be put in the first available exam room. In the exam room, turn the lights off and do relaxation techniques. Doing this has worked wonders for me. Every doctor's staff has been very accomodating. I always make mention to the doctor how much I appreciated the staff's help.

I am glad the sunglasses and earplugs worked. If you are self-conscious of the earplugs, you can add a Ipod. Some people play classical music to drown out the background noise.

My reading is very slow and I also have memry issues, so I also keep re-reading the TBI Guide.

Mark and CS had some great comments in their posts. Check out your other possible injuries. Keeping a journal is a great idea. Be wary of meds.

As for you questions about social activities, I'll respond in another post. My energy is low this morning.

Good luck with your appointment. Remember recovery is a marathon not a sprint.

Best wishes!
ConcussedinPA is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Concussed Scientist (11-22-2010), vini (11-26-2010)
Old 11-22-2010, 12:16 PM #7
PCSLearner PCSLearner is offline
Member
 
Join Date: Jan 2010
Location: middle of nowhere
Posts: 158
10 yr Member
PCSLearner PCSLearner is offline
Member
 
Join Date: Jan 2010
Location: middle of nowhere
Posts: 158
10 yr Member
Default

I'm so glad you found this forum! Lots of great advice here. One more thing about doctor visits: ask the doctor or your friend to write down specifically what the doc wants you to do and the answers to your questions. I had to do this for my daughter and I wasn't even the patient. These visits can be so emotionally charged that it's hard to remember. Not to mention the fact that you are learning so much as each visit. You practically have to become a junior neurologist yourself.

I recently read that 80% of patients who experience head trauma will have some kind of problem with the ambient vision system. I also read that the VA is now routinely screening returning soldiers (with and without known head trauma) for ambient vision issues.

The point I'm trying to make is that vision issues are a common problem, they can be fairly easilty diagnosed, and usually can be treated with therapy. Once resolved it can make a huge difference in your recovery. Might not be the case with everyone, but it is definately worth checking in to.
PCSLearner is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
vini (11-26-2010)
Old 11-24-2010, 02:27 PM #8
MarileeG MarileeG is offline
Junior Member
 
Join Date: Nov 2010
Posts: 29
10 yr Member
MarileeG MarileeG is offline
Junior Member
 
Join Date: Nov 2010
Posts: 29
10 yr Member
Default weakness on one side of the body

Hi CS,

Thanks so much for your reply and words of encouragement. It means so much to be able to correspond with people who truly understand. I'm glad to hear that your symptoms have become less severe over time and hope they keep getting milder. I believe mine will as well - the dizziness has gotten much better so I hope some of these symptoms will too.

I can't thank you enough for suggesting that I ask my neurologist about other possible injuries. I feel odd about saying so, but that idea never occurred to me to do. We/the neurologiest haven't talked about anything but PCS since August and I think I've been in "survival mode" since the accident. I have an appt coming up in a couple weeks - I will ask him then about other possibilities we should be considering. I do have some neck and shoulder issues but keep writing those off to too much time laying down. It will be good to investigate other possibilities further to make sure I'm getting the righ treatement.

Thank you for taking the time to help me. Take care of yourself.
Marilee


Quote:
Originally Posted by Concussed Scientist View Post
Hi Marilee,

I am glad that you are finding the forum helpful but yet sorry that you have felt compelled to join by the fact that you haven't recovered after three months.

I am sure that you are right to treat you injuries as serious. Post-concussion symptoms are really horrible, especially in the first few months after an injury. I do hope that your symptoms become milder in time as indeed my own symptoms have done.

Your general symptoms sound very like post-concussion symptoms with the possible exception of what you asked about specifically, weakness on one side of the body and difficultly walking.

I myself have, like you, been dealing with terrible headaches, unbelievable fatigue, problems with balance, dizziness and disturbed sleep, foggy brain, as you have described.

However, I have not had any weakness or difficulty with the motor function of walking. I have had some minor oddities in walking due, I assume, to balance, in that it has felt at times difficult to walk in a straight line and I have the tendency to drift in one direction. This has now recovered, but in any case was not due to a difficulty in moving my legs.

So, I wonder whether it would be worth asking your neurologist about any injuries that you might have in addition to post-concussion symptoms. I wonder whether you might have experienced something like a mini-stoke or damage to a specific area of the brain, or have a damaged or trapped nerve in your spine or generally something in addition. (I am not a medical doctor, by the way, so I am not qualified to diagnose these conditions.)

I do know, however, that once a doctor has come to the PCS conclusion they may stop looking for other types of injury. In my own case, I have PCS, but I also had injuries to my neck and back which were ignored. I think that my neck injuries were much less serious ultimately than PCS but possibly more easy to treat, so it was a pity not to investigate them at all.

Anyway, if loads of other people with PCS say that they have one-sided weakness then take the above with a pinch of salt, but I haven't had any one-sided weakness. I have had one-sided headaches and pain but nothing on the motor front, to answer your question.

Good luck with finding a pathway to a better place than where you are at the moment. We're routing for you.

CS
MarileeG is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Concussed Scientist (11-26-2010), vini (11-26-2010)
Old 11-24-2010, 02:59 PM #9
MarileeG MarileeG is offline
Junior Member
 
Join Date: Nov 2010
Posts: 29
10 yr Member
MarileeG MarileeG is offline
Junior Member
 
Join Date: Nov 2010
Posts: 29
10 yr Member
Default

Hi Mark,

It's wonderful that you are willing to share your knowledge, experience and encouragement with others who really need to hear it.

I'll check into the chiropractor. I've always been a little wary of the popping and twisting stuff, but maybe time for me to get over that. Esp if it can help me get up and down stairs without using my arms to pull me up.

I do have sleep apnea. I've been treated for about 2.5 years for it with CPAP. I've never had much luck with it as I also battle insomnia.

I stopped pressuring myself to use CPAP several weeks ago after trying on and off since the accident to use it. I get frustrated with it, but I'm also waking up exhausted, foggy and headaches daily. I get frustrated with myself for the dumb things i do when i'm so foggy/out of it.

Prob time to bite the bullet and start trying again. My sleep doctor doesn't want to see me until my PCS is resolved. That said he was speaking about insomnia. His first move is to disallow sleeping during the day which I can't imagine at this point. I pay the price when i don't rest during the day.

I've been wondering if the nightmares are coming from the medicine, but hadn't thought about apnea being the cause. I've been going without my CPAP most of the time since the injury since its a struggle for me under the best of circumstances.

I saw the ENT this week and took the advice to use earplugs and sunglasses. It made a significant difference. I appreciate having you clarify that its a processing disorder. that will make a difference when trying to explain to people. family and friends generally have no idea what i'm talking about.

The ENT has referred me for a test called VNG to determine if the balance/dizziness is in my ears or in my brain. the test requires me to stop all meds for 48 hours.

Medicine: The neurologist has me taking amitryptilline, gabapentin, meloxicam, meclizine (as needed) valium (as needed - rarely take this) and i take lunesta to help me sleep. Are you familiar with any of these? They do seem to be helping.

thankfully I have a journal. My husband built me a spreadsheet to track the meds - i was confused and forgetful of what I'd taken and when to take them - as well as how I'm doing each day. I keep a running list of what to I need to talk to the dr. about at the next appt.

I had no idea about the hormone issues for women + concussions. This will be something for me to become more familiar with. I would wonder if hormone issues could be impacting sleep as well.

I'm def with you on the pages of forms with litle boxes to fill in. what a nightmare. I like your idea of covering it with a white page and going slowly downward. that seems like the way to go.

I hope you're having a good week. Thank you again for all the time and helpful information you've willingly shared. I hope lots of good things are coming back to you.

My best to you as well.
Marilee

Quote:
Originally Posted by Mark in Idaho View Post
Marilee,

Welcome to NT. Sorry for your struggles.

My first suggestion would be to find an upper cervical chiropractor. Your right side weakness may be related to an upper neck injury.

You mentioned a history of sleep disorders. Do you have sleep apnea? If so, are you being properly treated for it?

Sleep apnea and PCS can combine to cause a miserable cluster of symptoms.
The terrible headaches, unbelievable fatigue, nightmares and disturbed sleep, foggy brain can all be both PCS and sleep apnea.

The recommendation to get a good vestibular check out is also worthwhile. Not all ENT's are equal. Try to find one with experience with PCS vestibular issues. Search this forum for other vestibular posts. There have been many.

The 'lots of medicine' sounds like your neurologist is taking shots in the dark. Not many drugs will help with PCS.

You said: < I’m very sensitive to noise – I haven’t had a lot of success being in large groups of people / in public. Going to the neurologist is a major undertaking – all the stimulation and long way to walk in that enormous building can make me sick for days. Last time I was down for 8 days afterward.

Ringing in my ears. Some days I wake up with blurred vision. Reading and using the pc for more than an hour or so generally brings on the headaches. Light sensitivity. I spend a lot of time resting and/or sleeping >

These are all classic symptoms. Have you tried dark glasses and foam ear plugs? At least for the time being, you will benefit from reducing the sensory stimulation both auditorily and visually.

Have you started a journal? It will be helpful. Also, make notes to take to your doctor's appointments.

You might ask for some help at your appointments. Even to the point of asking for a volunteer to push you in a wheel chair to your doctor's office. Then, use the ear plugs and keep you eyes down or even closed. This may sound extreme but your ability to communicate with your doctor is important.

I tell people that I have an auditory processing disorder. They will usually accommodate me. Your sensitivity is a processing disorder. Combine auditory and visual disorders and you get overwhelmed and exhausted. Been there, done that.

Women can be extra sensitive to concussions during the low progesterone part of their cycle. This is right after their period. Also, hormones can get whacked way out of balance by PCS.

Regarding reading, you might experiment to see if you tolerate different types of reading better than others. For me, fiction easily overwhelms me. More technical or analytical writing is easier for me.

Also, a page covered with print may be visually overwhelming. Try using a blank sheet of paper to cover parts of the page that you are not reading. I have to do this when filling out forms. If there are too many empty boxes or lines to fill in, I get lost with all of the blank spaces.

I am interested in what meds your neuro has tried to help you with.

Let us know how you are doing.

My best to you.
MarileeG is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
vini (11-26-2010)
Old 11-25-2010, 02:09 AM #10
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,417
15 yr Member
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,417
15 yr Member
Default

The upper cervical chiropractor does not do the twist and pop neck adjustments. In fact, the adjustments are so gentle that you will wonder if it is making any difference.

I have been getting NUCCA chiropractic for the past two weeks. It is making a difference. Now, I just have to convince my insurance company to pay their share of the bills.

Your medication mix is interesting.

I am taking gabapentin (900 mgs) and have been for over 9 years. I take it before bed to help my brain and body relax. It has a short half-life so it is mostly gone by morning. I do not take it again until bedtime.

Amitriptyline (Elavil) is a comon PCS med. The usual dosage for PCS is just 10 mgs or so. It is a tri-cyclic anti-depressant. Many have had good experiences with it in low doses.

The meloxicam is an NSaid. Pain relief and anti-inflamatory plus some fever reducing. It is more common for rheumatoid arthritis. My doc tried me on Indocin years ago but it made me crazy. I lost all sense of direction. I could get lost in a closet. I take enteric aspirin each morning for the same benefits. The enteric means it does dissolve in nor hurt my stomach.

The meclizine is an anti-nausea/anti-motion sickness drug. I deal with nausea regularly. I take high doses of paroxetine (Paxil) to help my brain stop looping on mundane and meaningless thoughts. A side effect of paroxetine is nausea. If I lay down with a completely empty stomach, I get waves of mild nausea.

Are you still struggling with motion sickness in normal situations? I am more sensitive to motion sickness but not in normal day to day activities. This motion sickness should improve over time. It may not go away completely, though.

I have cycled up and down through motion sickness sensitivities with each subsequent concussion or head impact since my first and only 'severe' concussion at 10 years old. For me, it helps to have a distant focus when riding in the car. If I look at the things that go by quickly, I can get overwhelmed and even sick.

The Lunesta and gabapentin have some extra side-effects from being used simultaneously. They can depress CNS and respiratory functions. PCS subjects cannot tolerate slowed respiration with the low oxygen from it. You might discuss this with your doctor or even pharmacist.

Have you tried to develop a sleep hygiene to prepare for bedtime. There are plenty of online resources for good pre-sleep hygiene. I need to have the proper pajamas (cotton), soft sheets, no drafts, and anything else that might cause an interrupting sensation. I even had to sleep with chenile gloves for the first year or two. My brain would detect the difference in tactile sensation and not be able to ignore it.

The sensory processing disorder is due to the brain's failure to properly gate sensory information. It should be able to block some sensory information and only allow the pertinent sensory information through to be processed. This is just a tactile overload form similar to visual or auditory overload.

It can be annoying trying to discover the accommodations that work, but believe me, when you find what works for you, it will benefit you and those around you.

I can imagine the difficulty trying to keep these meds straight. I struggle to just take my morning regimen and then my bedtime regimen.

Hope you are doing better. I had success putting my transmission back together better and getting to drive a bit. More like ice skate. The roads here are like ice rinks.

My best to you.
__________________
Mark in Idaho

"Be still and know that I am God" Psalm 46:10
Mark in Idaho is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Dmom3005 (11-26-2010), vini (11-26-2010)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
New member post ACDF drrcdavis New Member Introductions 4 02-16-2008 02:30 PM
New Member 1st post/ 1-down and 1 to go romotx Thoracic Outlet Syndrome 3 11-25-2007 02:54 AM


All times are GMT -5. The time now is 06:36 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.