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
Quote:
Originally Posted by Mark in Idaho
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.
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