4 months in
 

Hi- my name is Kasey. I was diagnosed with post concussion syndrome about 4 months ago. I’ve had about 40 loss of consciousness events from blows to the head in my 31 years of life, but the two most recent have really taken me out of things. The first happened at work- I stood up in a low attic doorway while doing electrical work. The second happened 8 days later when my business partner and housemate drunkenly attacked me. I think because of the traumatic nature of the second concussion, I am having a particularly difficult time managing stress. I had to move out and find new work in the middle of winter at 8800 ft, all the while fearing for my safety and operating at a much slower and less intelligent feeling capacity.

Once I found new work, I over did and launched myself into the worst symptoms I’ve ever dealt with. That caused me to lose my housing and be briefly homeless.. at the time i was so sensitive to light and sound that I was barely able to interact with anyone enough to get help. Since then I have been sleeping on a sofa but in exchange a certain amount of farm help, and it’s hard to get anyone to understand that some days I genuinely cannot deal with any stimuli - even the sound of a purring cat accross the room can send me over the edge.

My main question pertains to hypnagogic twitches. Is it possible to have them sometimes hundreds of times a day, in a manner so violent that it pulls ribs out of alignment? Sometimes a ‘twitch’ is more like a 30-45 second long total tensing of my core muscles, and occasionally my arms and or legs. Researching this symptom is difficult, as there doesn’t seem to be much discussed middle ground between hypnagogic jerks and tonic seizures. Tonic seizures as defined by the epilepsy foundation most closely resemble my symptoms; however they are rare if not unheard of in adults that have not previously experienced them, and the Eeg I had came out normal.

I’m curious if others have dealt with this, have any tips etc. My main concern is that these twitches might be leading up to a more intense seizure, as I experienced partial complex seizures for about a year after getting 7 sports related concussions in one year. Those came about unexpectedly, twice causing me to hit my head quite hard on the ground when I lost consciousness. I’m afraid another blow to the head like that could be very damaging.. so if anyone who reads this has had a history of concussion induced partial complex seizures, I’m wondering if you have ever had a relapse in symptoms that began with intense twitching.

My second question is related to rest. I just read through several threads that mentioned that too much rest can be bad. I spent the first 2 months resting in the dark as frequently as possible, felt decent (but mostly was out of savings and didn’t want to lose my housing), attempted to return to work, (I’m a carpenter)and I built a 20x20 room with dropped ceiling alone in a week, then the day after I finished I relapsed hard into some of the most terrible symptoms I’ve ever felt. Now, obviously, I didn’t go about things correct there, but I’ve had a really hard time balancing how much rest or activity to engage in.

Lately I haven’t had much of a choice but to be in a cycle of doing too much at once to try and catch up from needing to rest for days from the last time I did too much... but maybe I’m going about it wrong? Is it bad to sleep for like 2 days straight if your body seems to want it? Perhaps I should be forcing myself to be more active on days where I feel extreme fatigue? When I try to be active on my ‘tired’ days I usually find myself cranky and emotional and unable to do much other than sit and stare off, occasionally twitching.

Okay, so i know I had other questions, but I can’t think. I’m not proofreading this, as I don’t have the energy, so my apologies if it’s a bit rambling.

kaseyjetpilot,

Welcome to NeuroTalk.

First issue. I took gabapentin (1200 mgs at first before bed) for hypnagogic jerks. It worked well. I still take 300 mgs to help my body let go. Time for my dose.

Second, sleeping on a couch is not advised. Strange sleep positions can cause neck inflammation that can disrupt sleep quality and breathing making it so you have sleepy spells during the day. If you have access to a recliner, you should be able to sleep in a safer position. Your head and neck should be as in-line as possible.

Living at altitude with multiple concussions can be a problem for many. The compromised brain does not absorb oxygen well.

Some people with PCS experience a symptom called postural rigidity where the abdominal/thoracic muscles spasm.

Are you taking any meds?

You should read the Vitamins sticky at the top and follow the link to the update on page 46.

I’ve been taking b-12, fish oil, Klamath algae, a potent ‘green drink’ called vita mineral green, lions mane and juiced celery. The celery is supposed to be good for inflammation and I notice at helps reduce the amount of pain I experience.

My doctor has not put me on any medication. I live somewhere quite rural and the only neurologist in the part of Colorado I live in has admitted he doesn’t know much about concussions and doesn’t want to try any medications. I have been referred to a Multidisciplinary Concussion clinic in Denver, but because they will not accept outside referrals, i first have to visit their Epilepsy clinic (even though I don’t think I’m actually having seizures) to get a referral to the concussion clinic. The soonest available appointment isn’t until July, so I’m just operating under the instructions to ‘just rest as much as I can’

Good advice about the sofa- it’s definitely hard on my neck. Unfortunately I don’t have another option until next month when it gets warmer and I can move into my camper (which has a tempurpedic bed) .. do you think the twitching could be due to neck injury? I’m not totally clear on the extent of what happened when I was attacked. I had two large painful lumps on the back of my head, and evidence that I was struck in the nose, but total amnesia of the attack itself. My best detective work has worked out that I was likely shoved into a brick wall multiple times and punched in the face. I’ve had a lot of neck pain since, but my doctors refused to do any further imaging when an X-ray came out normal.

"Hey Doc, the sofa I sleep on is hard on my neck. What should I do?"
'Stop sleeping on the sofa'
"Can't do that."
'Have you considered that you need to find a different position on the sofa?'

You don't need any imaging of your neck. You just need to find a way to sleep with good head and neck posture. Try working on this for a few weeks. You should also ice your neck, especially when it is stiff or sore.

I'm not impressed with the algae and green drink. The nutrients they contain are in low doses.