margomills,

Do you take the Neurontin after the collapse and tremors to make them go away? Or have they stopped after you started taking the Neurontin? Neurontin has only an 8 hour half life. To maintain level blood concentrations of it, you would need to take it three times a day.

Regarding the G2, I am a proponent of staying away from artificial sweeteners, especially for those with PCS. Acesulfame potassium can cause problems with reactive hypoglycemia. Reactive hypoglycemia can make PCS symptoms intensify and take you on a roller coaster ride. I have lived with reactive hypoglycemia for decades. The jury is still out on the long term effects of Sucralose, which is sucrose with three chlorine atoms added to replace three hydroxyl groups . Organic chlorine (versus ionic chlorine as in salt, NaCl)) is the active ingredient in many pesticides due to its toxicity.

I would stay with the Original Gatorade. It is much safer.

Tengboche, what has the Elavil ( Amitriptyline ) done to improve your sleeping? I use the gabapentin for improvements in my sleep. That reminds me, time to go take my dose prior to bed time.

btw. I have been on generic Neurontin ever since Teva started producing it. Makes no difference to my system.

I think most of us agree about the usefulness of neurologists for most PCS.

I have been trying to take life much slower since my collaspe / seizure or whatever it was last thursday. I rest once or twice a day in a quiet room if I can find one (at least two more weeks left on the house extension project!). The doctor at the hospital was not at all interested in me once he saw my CT scan was ok.

I'm only 6 weeks into my PCS. I am a mother of 2, one 3 years old, one 5 years old. I'm finding my role as a mother the hardest, despite using lots of help from friends and relatives.

I only use NHS here as I've always found it more than adequate for me and my family's medical needs, even though my daughter has complex and rare respiratory problems. However, my mum really wants to pay for me to have an MRI privately, as it'll be weeks or months til I get to see a neurologist on the NHS.

Do you think I should wait and see how the symptoms are. I'm gathering from posts on this thread and others that scans don't always show anything worth seeing, especially this long after the injury was incurred.

Ali,

CT scans and MRI's are worthless for 99.9% of PCS. An MRI needs to be a high Tesla (6 Tesla or more) to adequately show the microscopic damage from a concussion. Even then, it does not show anything that is treatable.

As I stated before, CT scans will show brain bleeds best at three days post concussion.

If you have sudden onset of extreme headache or vision or hearing difficulties, then go immediately to medical help. Nausea is not uncommon but if it becomes so bad that you cannot keep liquids down, seek medical help.

The test that shows the dysfunction best, in my opinion, is a qEEG. Quantified Electro-EncephaloGram. They wire up your brain with 18 to 20+ electrodes and measure your brain waves while you watch a screen and hear sounds. A good qEEG tech and diagnostician can tell what is going wrong. qEEG's are hard to get done because many neuro's do not accept the technology. They tend to rely on a generic EEG with the flashing lights and such. Such EEG's are intended to only show seizure activity.

So, for now, rest and avoiding as much of the chaos is best.

My best to you.

Thanks again, Mark. This PCS has genuinely scared me, but i have found, by following the good advice from you and others on this forum, and accepting that doctors either don't know or aren't really interested, my symptoms seem to be more controllable.

I will divert my mum from organising an MRI for me!!

Best wishes

Tengboche, what has the Elavil ( Amitriptyline ) done to improve your sleeping? I use the gabapentin for improvements in my sleep. That reminds me, time to go take my dose prior to bed time.

I have tried many many different medications to help me sleep (prior concussion had about 9 months of scattered sleep). Various medications would help (mixture of anti anxieties, sleep inducers etc) and then after 2 weeks be back to sleeping 2-3 hours a night.

At 30mg of Elavil in the pm I can get a decent night sleep, and now with gabapentin 3xday it feels even better. It isn't often restorative but it helps which makes dealing with the other issues such as headaches, concentration etc easier to handle.

I just have to remember to take the medications!

I have an odd sleep process. I take my Neurontin and then sit down and watch TV. I watch movies or things that do not have a emotional response. This mindless amusement allows me to let my brain relax. When my eyes start to get heavy, I go to bed. I have been doing this for about 6 years. Trying to go to bed in my bed is problematic. If my brain wont shut down, I will toss and turn.

So, rather than fighting an awake mind, I just give it something mundane to do, TV. It is amazing. I can watch a mundane movie until 2:00 am and go to bed and still wake up at 8:00 am. No alarm needed. 8:00 am has been my wake time for over 25 years. I have always been self-employed and chose to not fight with early morning commute traffic.

Some nights my brain will shut down earlier. I have no understanding of why. I just go with it rather than fight it. Some of you may need to start a 'go to bed routine' early in the evening. The PCS brain often does not shut down for sleep without a serious effort started hours earlier. I know that peanut butter on toast will help it shut down for me. I need the complex carbs for sleep energy.

Other than the Neurontin to help keep my body from twitching, I do not use any sleep meds. Never have.

My best to you.

Sorry about your injury!
I get really interested when I hear of your colllapses since I have experienced similar things myself.

What happens is that when I exert myself to much, from having a long conversation or things that takes a lot of concentration, I get shaky and dizzy. The brain cant keep up with the metabolic demands it seems like. If I take short breakes I spare more energy and I have less of these incidents.

I use to think of it as when streaming a movie online. If you try to watch it while it hasnt downloaded enough it lags and get stuck and doesnt play smoothly. '
If you pause it for just a little while and let the buffer build up you will be able to watch the whole thing smoothly. I believe this is exactly what happens in the braincells. Probably it is a combination malfunction including energy-conversion (ATP production which is a cells energysubstrat) and transmittorsubstance production.

The cause for this "malfunction" can be either damage to single cells or as for the most PCS-patients with diffuse-axonal-damage due to tear and shear loss of axons. This means that other neurons have to take over for the lost ones which axons has been damaged. These "compensatory" neurons have more job to do than regular and therefor get more fatigued! This is MY hypotesis of the less severe PCS. NOT PROVEN


I have one comment to Mark also. I am a medical student in the beginning (2nd year) of my education and have just had 5 months of neuro physiology. (We have more of that here in Sweden than other medical educations around).

When I read your comments I see all your experience and trial and error info etc which is THE MOST IMPORTANT thing for people here to learn. Keep posting that stuff!!You help tons of people!
What sometimes (but absolutly not always) is lacking is correct medical info. People CAN get confused and learn the wrong info which they than see as the thruth and tell their doctors, believe in etc.

For an example: You said that its during REM-sleep you "recover" and regain your energy. This is not true. During the REM you have almost awake activity in your brain. (Therefor the motorneurons get inhibited so you dont run and move in your sleep). In deep-sleep its the opposit. I asked my doctor if there is any way to get more of the deep sleep and less of the REM. With farmacological ways that is. He didnt know anything about it.

Since many people that use "antiepileptica" and other drugs that reduced the activity in your brain in generel have positive effects on the fatigue my hypotesis could be correct.

HOWEVER if you could mixture with the sleep and have only deep-sleep you would have severe problems with establishing new memory which is one of the things happening during REM-sleep!

People try to cure themselves (I do it myself!) by searching online and reading medical reports etc. This is good in a way but bad in another.

If you really want to learn how the brain and nervous system works you better get yourself a neuroscience book instead of spending the time reading online.

Many medications seem great but what is NOT sure is its safety. The mileu in the brain is SO complex. Adding a drug that fixes one thing CAN have effects on cellsignaling, metabolism, toxicity, and other things.

Some random info from me...my brain is now tired and I shall quit writing!

Emil

My comment about the neuronal recovery during REM sleep comes from a published medical article. I follow a number of publications that report on the current research. Sometimes, I may mistake the details but not the principle. A recent report mentioned that the brain shuts down some brain cells while the others are active during REM sleep. This alternating of shut down cells vs active (REM) cells is thought to be when the cells recover. The shut down cells are in addition to the motor cells that are shut down and cause paralysis.

I follow a sleep disorders newsletter due to my own struggles with Central Sleep Apnea and what CSA did to my father's life.

My brain may mix the details so feel free to correct the details.