WOw, I didn't know all that about the different medications.

Can I ask if the pain medicine is like tylenol with codeine or if it
is something different. I have been debating asking my pain doctor
if I could try a different medicine.

Donna

Hi Donna,
None of them are narcotic (thankfully). Most of them are focused on nerve pain i believe. you may have seen Mark's post that one of them is often for rheumatoid arthritis. It came with a bunch of awful info from the pharmacy about causing strokes and heart attacks. it does seem to help the pain though. While taking that one I can't take any over the counter pain medicin like tylenol, advil, aleve, etc. only the prescription.

hope this is a little helpful,
marilee

Thanks for letting me know.

Donna

Hi Mark,

So sorry for the long delayed reply to you. This is my 3rd attempt! Hopefully the 3rd time is the charm!

After suffering the after effects of a fireworks display in town and then trying twice to post back to you and inadvertently deleting my post, I’m back for a 3rd try and drafting in word so I won’t lose everything I’ve written again.

I started looking into the NUCCA after your last post and can see it’s very different. Not the usual tons and tons of visits, popping, twisting, etc. The next step is to find one locally and figure out the insurance part. It would be great to find something else that would help.

Thanks for all the insight on the medicine mix I’m on. I think the gabapentin is the most helpful so far. Amitriptyline has helped me get to sleep at night but doesn’t work without an extra kick from Lunesta. The pharamacist also said it helps with nerve pain.

If I could get off of meloxiacam I would like too. I worry what its doing to my stomach, liver and kidneys. Your experience with Indecin sounds horrible. I’m glad you found the enteric aspirin. I wonder if that might be a solution for me over meloxicam.

The motion sickness/dizziness has changed a lot since the accident. For the first 10 weeks or so it was horrid. 10-15+ times per hour I’d have a vicious spinning episode where the room spun around me and I held on for dear life. Its eased off a lot and causes the most problem when I’m stressed or when I’m in getting too much sensory input – usually in a store or someplace that is overwhelming. I get dizzy, the floor moves and I feel I’m going to fall.

I know exactly what you mean about riding in the car. If I look out sideways its not good. I’m best to look straight ahead and not move my head too much. The best is to sleep. My brother in law is a PT. He came up with putting a bath towel folded longwise about my neck. It supports my head and neck in the car an makes it easier to sleep. Of course I look like a boxer so my husband calls me “Champ” when I put the towel around my neck.

Thanks for your notes on Lunesta + gabapentin. I’ve noticed bouts of shortness of breath at times and it contributes to the intense fatigue. I plan to call the pharmacy to ask for more info on this. I also have asthma so the last thing I need is not enough oxygen.

I did do quite a bit with sleep hygiene a few years ago when trying to beat insomnia. It wold be good to revisit that from PCS perspective. Since your post on apnea I’ve vowed to try my CPAP again. I wore it last night until 4 am which is a big win for me. Generally I only manage a couple hours.

The educating you’ve done for me on the sensory/auditory/visual processing disorder has been tremendously helpful. I’ve had difficulty trying to explain this to family/friends. Most people don’t get it and I couldn’t explain why some things just don’t work for me right now.

The fireworks display that happened in town is a good example. We could see/hear it from the house. I thought I would try watching it since it was probably 2 miles away. After 3 minutes or so I got nauseated. Then the sound of it became overwhelming.

I got to the bedroom and put my hands over my ears and earplugs and a pillow on my head praying for it to be over. My husband was very concerned and comforting throughout, but afterward was struggling to understand. He said it wasn’t very loud.

I’m going to try to re-explain to him using your words “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.” His brain can does this while mine can’t right now. This may help him to better understand.

I’ve also found that being around in groups larger than 3 people is hard. Multiple voices at once are painful/overwhelming. Do you know, by any chance, where I can get more information about this online? I’ll check the TBI guide again for more info too.

I’m excited to hear about your transmission! What a triumph. Congratulations to you! Be careful on those icy roads…

I am better. Thank you for your kindness. God Bless you Mark in Idaho. Its comforting knowing you and all the folks on this forum are out there.

Marilee

Marilee,

I found that the more I could avoid or reduce the over-stimulation, the better I did over the long term. With enough days and weeks of these good times (over-stim limited) linked together, I improved to a point where I could tolerate more stimulation.

It is like the over-stimulation is causing a relapse or worsening of symptoms. By having more good days, it appears that my brain heals enough to tolerate more.

What ever it takes to achieve these continuous periods of good days, even if it is living like a hermit, it is worth it.

I have a cabin in the mountains were we spent a lot of time during the early days. Other than the occasional car driving buy, the only sounds are sounds of nature. When I am up there, it's like I am like a different person. I had a myriad of projects from building a garage with a guest cabin above it to doing landscaping work, etc. I did these projects without any time pressures.

They allowed me to exercise my brain but stop when I felt like I was overloading. This is how i do it when I am working on cars. It took me two months to finish rebuilding my transmission.

You will likely benefit from finding some busy-work/hobby/craft work to spend time on. It will need to be something that you can have set up 24/7. This way, you can start and stop working at your own leisure.

I have had multiple tasks available at the same time. This way I can stop one, take a break, then go to another. The stop is in response to the space cadet feeling that comes over me. It may be I find myself staring at the project or rereading the same instruction, or anything that tells me my mind has lost track of what I was doing.

I stop, take a break ofr even a nap, then go back to the project or one of my other projects. Family needs to accommodate your need to switch back and forth.

Your husband needs to understand when you just need a break. He may be in mid-sentence and see your eyes glaze over. It has nothing to do with him. You just hit your limit. He can try to back away and finish his comments later. He may even need to write you a note for you to read later, like when he is gone.

Remind him that you need simple communication. No long drawn out sentences. No overly complex issues.

My comment to my wife is simple, "You lost me." She knows what this means.

Has your husband read any of the TBI Guide or other books about living with someone who has suffered a TBI/mTBI? You really need him on the same page as you. He will become your biggest advocate. He just needs to understand how to protect you when he can and accept you as you currently are.

Regarding riding in the car, You can buy horseshoe shaped pillows that help or you can get blow up travel pillows in the same shape.

Regarding telling others about the sensory overload, maybe this will help.

Imagine a number of strange people throwing tennis balls at or by you continuously from all directions with out a break. Now imagine trying to catch one tennis ball thrown to you by a friend. No matter how well you concentrate on that person and the ball they throw, you still need to dodge the other balls and decipher which ball was thrown by your friend.

Now pretend your friend is invisible. The ball they throw looks different but you do not know what direction it will come from except they will yell catch as they throw it. And, the strangers are also talking and playing catch with each other as they throw the balls back and forth past you.

Now, try to tell this to your husband. Highlight the previous two paragraphs and click on file/print. Select Print selection, and your printer should only print the highlighted paragraphs. Or, you can paste them into word and print them out.

If your husband say this sounds unbelievable, tell him it seems unbelievable to you too, except you live it 24/7.

I can't tell you how often I doubt my own experiences like this. It is usually when my wife confirms it by asking if I am OK that I realize that I am not imagining it.

Hope he will take the time to try to understand.

My best to you.

"It is like the over-stimulation is causing a relapse or worsening of symptoms. By having more good days, it appears that my brain heals enough to tolerate more."

This comment of Mark's is KEY. I definately noticed that giant strides were made when my daughter would limit input, have a few good days, and so on. The bad days started getting fewer and further apart. Now a bad day is rare. There is simply no way to push through these symptoms.

Hi Mark

i'm finding the hermit-like lifestyle is the way to go. right now its the only option for me. I've been worried that at 4 months post injury i should be doing a lot more. The neurologist keeps saying 6 months for recovery.

it does seem to help if im able to string together some good days of being quiet, resting and sleeping as needed.

i also notice that too much stimulation does set me back too. it is like a worsening of symptoms.

we are blessed to have a mountain cabin too and have been there almost every weekend since the accident. it's peaceful and quiet there and lets me rest. no garbage trucks, sirens or lawnmowers!

i really like your idea of having projects to work on with no time pressure. I can see how this would help me with exercising my brain little by little but with no deadlines and the ability to stop and start when i need too.

the info you've shared with me on the how to explain the over-stim/overload is going to be helpful. I'm going to print it all out for him. He has the TBI guide but I don't know how much he has read. One of the other folks here suggested i give him sections at a time which i thought made lotst of sense. i gave him one today and he read right away.

He is anxious to help and advocate for me. He just struggles to understand b/c he's not experiencing it tho he sees what happnens to me in those situations. And, I've struggled to put words to what it feels like.

I've found a few other posts you written to others, specifically advise to caregivers that I want to share with him too.

I had a VNG test today at the ENT/Audiologist. Recovering from the experience. outcomes were good and I got the audiolgist to try to explain what happens when i get too much input from voices (2 at a time doesn't work) or other sounds, etc.

thank you for putting your time and energy into helping me. I appreciate it so much. I'm hoping I'm feeling well enough to start to share this with him tonight. Knowing him it will be a very good, supportive experience.

God bless you,
Marilee

Marilee,

Sounds like you are headed in the right direction with your husband. When my wife finally read some of the neuropsych reports and saw me struggle to put together a Worker's Comp claim, she finally began to understand. Dr Johnson's TBI Guide was the final information she needed. Before, she did not know how to help me except to run interference/pull me away. Even that was more to spare her the embarrassment from my behavior.

We had been married for almost 25 years and she was used to me being able to do anything I set my mind to. Now she understands.

Your husband will benefit from attending a brain injury support group if you can find one. Even if he just listens, hopefully, he will hear others talk about their struggles to understand their injured loved one. Ours has a good number of caregivers/family who meet to support each other.

Spouses have a more difficult time with PCS because they have lost part of their life partner. Those spouses who are willing to try to understand are saints. Consider your husband and your marriage as your top priority in your recovery. What ever you need to do to help them tolerate the new you is of utmost importance. Never blame them, They are as confused as you are.

My best to you and yours.

Thank you most sincerely Mark for the words of wisdom. It's helpful for me to hear and then to share with him. He definitely falls in the saint category and has been a rock throguh all.

and yes, you are very right when you say how hard it is for the PCS spouse who has lost their life partner and best friend. he has been wading through that. me understanding it helps a lot and you've been a part of facillitating that.

i'm amazed at how you can help so many people via this group. i pray for you to keep having the ability to do it as it makes a difference.

take care and Merry Christmas to you and yours.