PCS - does not resting cause collapse?
 

Hi I'm new here

I spent the day in Accident and Emergency yesterday having collapsed at the son's football class. I've had PCS for nearly 5 weeks.

There's a lot going on in my life and I've been trying to stay busy despite the daily dizziness, fatigue, loss of concentration, intolerance of noise etc.

I collapsed two days after I hit my head (minor injury at home, broke skin but no other symptoms to suggest major trauma). I've had some wobbles where I've had to lie down for a bit but yesterday it was like my body went into shock or a fit or something. I pretty much passed out and was sick too. The CT scan showed no damage so they discharged me.

I've taken to my bed for a couple of days. I'm scared now.

Thanks for reading.

Ali,

Sorry to hear of your struggles.

I've never experienced a collapse like you had but I know that the motor control brain area can become overloaded. One researcher talks about doing a neuro-exam where they test your reflexes (the rubber hammer ) and after repeated negative results (the nerve causes a reflex action) the nerves can finally fatigue and cause a positive result (the reflex action is fatigued and absent).

It is not a good idea to keep busy after a concussion. You may not need bed rest but you do need a very low stress environment. It is more important for you to sleep well than rest in bed. When you are sleeping well, you will enter REM (Rapid Eye Movement) sleep. This is when the brain repairs itself.

So, the rest you need should be quiet (no chaotic noise), no visual over-stimulation, only light physical work load (household tasks should be OK), and not time demands on completing these tasks. Take is slow until you get a sense that you can focus better and slowly increase the intensity of your day.

You may need weeks of this low stress rest. So, simplify your day and over time, things will get better. Search NT for nutrition and you will find some vitamin and other supplement recommendations. The brain needs these to purge the toxins from your injury and heal.

My best to you.

Thanks for your reply, Mark, and all the other useful stuff I've read in your posts while I've been researching PCS on this forum. I've also got hold of the TBI survival guide you've mentioned on here.

I really am wondering what happened yesterday and am considering the possibility of seizure. I am so fatigued today and dizziness is worse than ever when I move around. I'll try to do a bit more tomorrow.

I'm seeing a neurologist in a few weeks if symptoms aren't improving.

Home is nuts while extension building work enters its, thankfully, final stages. But still I plan to stop racing around pretending all is well when clearly my body is crying out for me to take it slower.

Ali,

If you have commotion at home, you need to find a place of respite. I can imagine the chaos if there is building/remodeling going on, especially for the woman of the house. You need to find a place of comfort. Your home is not likely that place right now.

Do you have a friend with a comfortable home that would be gracious enough to put up with your needs for part of the day?

The female need to protect/order the nest can be taking you for a wide ride. Your hormones may be screaming and especially your stress hormones.

I can not comment about whether you had a seizure or not. I have a friend who experienced the same thing after a concussion. She was at the chiropractors office and became immobilized by a similar event. The first thought was to call an ambulance. They waited and she recovered enough for someone to pick her up and take her home. She was also left in a very weak state for a few days.

Strange events can follow a concussion. Many are unexplainable. Any effort to get a proper explanation will likely lead to being dismissed as a hypochondriac by the doctors. If doctors don't understand an event, most will question your description of it.

Hope you find some respite.

My best to you.

Good advice indeed and my husband is keeping the house as quiet as possible by taking the kids out this weekend. I do find their and the builders' noise / disruption so so stressfull since my accident. I have keys of neighbours and relatives to use their place but my kids are often with me and it's easier to look after them at home, even if it's noisy.

I've been reading about non epileptic seizures and found an article mentioning this phenomenon in PCS, which I can't post here until I'm a more established user of this forum.

I'm not sure if I should try to work out what happened and mention it again to my doc and the neurologist whenever I get to see him / her, or just keep quiet and hope it doesn't happen again.

I have young children that I often look after in the absence of another adult, and I do drive. I don't want to risk others, and myself.

Hope you are feeling well today.

I would suggest being very careful with driving. If your brain is like mine, you can tell when you are less able to perform at your best. My wife will look me in the eyes and ask if I am 'good' to drive. Some days I am definitely not good to drive.

My best to you.

Opinion
 

Having suffered TBI's and an inner ear canalysis. I had two types of Dizziness. The TBI produced a general feeling of vertigo that was worse with exertion. The second was positional and severe. I got to the point I could duplicate it at will when I turned my head a certain direction from rest. With therapy movements from a balance disorder physician "local medical school professor" and a treatment to remove the particles from my inner ear the second problem abated over 4-6 months.

Most PCS is undiagnosed. It doesn't show on the MRI so it didn't happen. You do not have to bleed to have damage. Look at Muhammad Ali. He never had a bleed and his MRI is "fairly" normal. He has MASSIVE PCS and trauma induced Parkinson's. They call it punch drunk.

Your brain is trying to tell you to rest. I had a second "issue" we will call it, and what would have been a "non incident to most" put me on the couch for 5 days. My wife made me go to the hospital day 2 cause my hand writing changed as did my speech. MRI and hours later we were sent home "No New Bleed". The sheet we were given with 13 symptoms to return for, nine (9) of them were why I let her take me in the first place. I was taken aback by her disgust with the physicians, I had expected the outcome. I was concerned I might actually have a new bleed. The MRI was my only desire. After a few years, I realized 50% of physicians are complete IDIOTS, 25% are ruled by kickbacks from pharmaceutical companies, 15% have blinders on, and 10% are awesome.

I worked in hospitals. When a Physician needs to know your type of insurance before they agree to see you. He is focused on if and how much he will get paid. We had one called Dr. Paycheck.

Rattling your brain, causes severe fatigue to protect you. Ever heard of a KO in boxing? Have you ever had a sore spot that didn't bruise but still hurt like $%^& for a week or so. Your brain is more fragile than your body.

TMI The short of it. If you experience the symptoms of PCS after a blow to the head "YOU HAVE PCS". The severity or degree and expectancy of life long implications can be drawn by whether you had a detectable bleed or not.

I wish you the best. and REALLY REALLY hope you will STOP and NOT opt. to just slow down. You unlike me can have a complete recovery..

A brain bleed or not makes very little difference in long term outcome. A bleed causes localized damage and if allowed to continue, can cause swelling or pressure on the brain and more seriously, the brain stem. Although a bleed may seriously damage that local part, if there is no diffuse damage such as diffuse axonal damage or high intracranial pressure, the PCS symptoms may be minimal.

Most PCS symptoms are from the diffuse injury. A bleed will have more stroke like symptoms if it is not treated right away. CT scans are the commonly used to look for bleeds. Research shows that a bleed is more likely imageable with a CT or MRI at day three. Earlier it may not be noticeable. Later and it will be absorbed by the body.

My condolences to Gibson if he has had to deal with a bleed. I am sure it is a scary experience.

Muhammed Ali has, in medical terms, demetia pugilistica. He is very fortunate to have lived as long as he has.

Gibson, What is inner ear canalysis? I have never heard of it nor can I find a reference to it.

Was your send 'issue' the result of a head impact?

My best to you.

I have had PCS for ten years
 

I still collapse and have tremors. Noise and light is intolerable after a collapse. I take Neurontin and these symptoms COMPLETELY go away. Generics do not work. Cognitive therapy does help! If you have more than 1 collapse keep in mind it may, or may not, take a long time to heal. Drinking a gatorade or G2 in the morning helps and staying away from alchohol or anything that dehydrates the brain. A PET scan can show what areas of the brain are not operating correctly. My MRIS and CAT scans were and are all clear. EEG s without light and sound stimulation are clear, but, with stimulation EEG is off. Unfortunately, most neurosurgeons have no idea how to help you.

Hi,

I had about 6 months of fainting/convulsions which my neurologist explained as a phenomenon that wasn't really understood but often resolves after a few months.

I am happy to say that I have not fainted for 2 months now, which I am happy with as it was every week or every other week before. I am now on Gabapentin too and it has reduced my headaches and dizzyness, Elavil has helped with sleeping.

I am about 14 months PCS and am happy to say that my life is improving every week. I have more energy, and feel like the fog has lifted. I gave myself a lot of rest, took it easy and took Mark's advice to "accept" that things are different and that this was ok.

Rest and quiet is so important and I only wish I had been a little more careful and gentle with myself a year ago and not pushed it and gone back to work. Live simply, let yourself heal and I wish you all the best.

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.