First Concussion not going away
 

Hey,

Just thought I would share my story. (Sorry for the length).

My name is Nick and I am 22 years old and I have been dealing with my concussion/PCS for almost 10 months now. Seems like a very long time to me even though I know plenty of people here have been dealing with PCS for years. I was in the camp that thought Concussions only take a week to heal so the fact that its been 10 months has made it a very frustrating journey. Basic symptoms have always been the same: light headache (more of a pressure inside the head and feeling of compression), cloudy/foggy thinking, fatigue, stress/anxiety, irritability, and sensitivity to noise.

I got my concussion during the spring semester of my senior year of college in March of 2015 when I was out drunk with my friends and hit my head right on the side of my eye by the temple on an icy snowbank. I was drunk when it happened but I started to feel a headache pretty much right away and had a cut. The next morning I woke up feeling not so bad but definitely as if something wasn't right. First 24 hours weren't very restful.

I had an event the next weekend where I planned on drinking and legitimately thought I would be fine by then. I ended up not being fine obviously and from that point became week to week in my own mind. Ok I need one more week. Another week. I ended up flying home to stay with my parents and stayed there for a week. I actually felt better when I went back to school at the end of it but as soon as I got back to school I felt worse again. At that point it had been 3 weeks and I couldn't believe I wasn't better! How Naive I had been...

The fact that I wasn't getting better was extremely stressful. My peers didn't understand why i wasn't better and there were all these fun things going on that I desperately wanted to be better for. All these dates and deadlines that I was like ok I have two more weeks to get better. Long story short I ended missing out on everything, barely got my schoolwork done (handwrote a 15 page research paper because I couldn't use the computer), and graduated. Graduation night I had a beer or two because I was so sick of it and wanted to celebrate my four years of college with my friends.

What I was doing to help myself along was taking supplements (took a B vitamin, NAC, Magnesium, Omega 3s, and a new supplement called EHT by nerium). I saw a cranio sacral therapist who helped a lot actually. Every time I saw her after the session I would leave and it was like everything I was seeing was in HD. She told me that the swelling/inflammation in my head was having trouble draining and what she was doing was opening up the pathways in order to get the brain to drain. It helped a lot and I was convinced it was going to make me 100% better.

As soon as I graduated school I moved to NYC and once I was removed from that stressful school environment I started feeling so much better. At that point it had been three months. I attribute a lot of it to being removed from the stressful environment at school. At that point I thought I was 100%. I stupidly started doing all of things I had been wanting to do for so long. I went out with my friends to bars and got drunk, I played video games, went to the movies, had a beer after work or wine with dinner. Along with all of that I had just started a new job working in Finance. At a certain point after a few weeks the drinking and the stress of the new job became too much and my headaches came back. This was August and now I have not recovered since.

The best way for me to describe it is that I am 90% better but that last 10% feels like it is not getting better. Currently supplements I take are Brain Magnesium by Drs best, NAC by drs best, Curcurmin, omega 3s, and Neuro Optimizer by Jarrow. I try to see the cranial sacral therapist when I can but she's not local. I have become very knowledgable about concussions and try and help others and friends of mine as much as I can but its frustrating to see them get better in only a few weeks while I am still dealing with mine...

My greatest fear is that I will not make a full recovery and I will feel debilitated for the rest of my life. When I was 18 I had a herniated disc in my back and dealt with very stressful back pain. Today it is a lot better but it is not 100%. Im worried that is what is happening with my head. I fully recognize the role anxiety has in people's recoveries and how stressing about when you are going to get better is going to do the opposite. I just really hope it gets better soon and this nightmare that we all can't wake up from is going to end eventually...

Nick21,

It sounds like you are living a very intense life. It also sounds like you are expecting a quick fix. You take some exotic supplements but are not taking the basics.

When a concussion does not recover spontaneously, usually in the first 6 weeks or less, it means other issues are at play and a longer slower recovery is likely the case. NYC finance does not sound very conducive to recovery. You likely need to find ways to moderate your daily activities.

btw, Research shows that cranial sacral therapy has no consistent value except for the spinal manipulations. Studies show the cranial work is meaningless. For some, if the cranial work is aggressive, headaches can result.

Nick,

Be patient...some things we can't set timetables on, we are more participant than director in some aspects of PCS. You will learn the fine lines.

Bud

I am at 13 months since my concussion. There have been some dark moments I can tell you, but this is a long term thing. Little baby steps at a time, month after month. PCS does not respond well to pushing your limits or trying to work through pain and discomfort, even at advanced levels of recovery, never take for granted that you are feeling better. It can and will come back and hit you hard.

PCS does respond well to dicapline. This means limiting stressors on your brain, regular sleep and eating patterns, a healthy attitude towards making progress, no drinking, eating well and generally being sensible about what your injured brain can handle. Staying up until 3am playing call of duty won't help.

You brain will have a lag to it, over do it and expect to start feeling ill a couple of days later. A broken leg will let you know in real time if you're aggravating it. An injured brain will let you know, much later. This has cost me many set backs.

Mark is the most knowledgeable poster on here, the guy knows his stuff.

Hi Mark,

Thanks for the reply. I think I need to get on some of the basics mentioned in the Vit sticky like a B complex.

In regards to NYC finance its actually weird but I feel better when I am at work than when I am at home... Its almost like the mild stimulation is good and I am not just sitting at home fixating on my symptoms. In a way I am distracted and the distraction is good. Does that make any sense?

Also in regards to Cranial Sacral Therapy. I have never really researched it or read any studies regarding its efficacy. I also majored in Psychology in college so I studied the brain and Neuroscience quite a bit so I am well aware of the role stress and anxiety play in not only brain injuries but almost all disease and illnesses. I also understand very well the Placebo Effect. I will say though my Cranial Sacral therapist was a very good one and after every session I noticed a serious difference. My cloudy thinking was gone, headaches went away, and my senses were heightened (like seeing the world in HD as if before I was in standard definition.) That being said, it has not "fixed" me.

My mother is a nutritionist and is VERY into alternative medicine. As a psychology major I was very much a proponent of western medicine and sound methodological scientific research. After this injury especially I have come to accept both as being right in their own ways without necessarily proving wrong the other.

But then again what works for me may not necessarily work for someone else vis versa.

In regards to expecting a quick fix, I was like that for a very long time and have made my peace with the injury but there's still a part of me that's kind of like "ok, I'm being patient and I'm not stressed out about it but when is this going to end....?"

Are there people out there who've had PCS and took them over a year to get better and then they did and never had symptoms again? Or is it overwhelmingly a sense of once you have PCS you will have some degree of it for the rest of your life?

If you get a sense of decreased symptoms while working, you might want to still take short breaks to give your brain a chance to not develop a fatigue from an 8 hour day. Maybe 10 minutes of quiet ever 2 hours. You symptoms at the end of the day could also be due to hitting your limit.

A B-50 Complex is much different than a B-Complex. A B-50 Complex plus 1000 mcgs of B-12 methycobolamin or more should give you a good balance.

Yes, placebo effect can be strong (60% is common). Or, maybe she is helping you relax as she works on you. That is also beneficial. Heightened senses are normally a sign of fight or flight brain function. It increases blood flow to the brain and ratchets up the speed of processing with the adrenal system. Maybe she is increasing blood flow at your neck.

The research shows that 10 CST's diagnosing 10 patients craniums will all diagnose different conditions with no consistency between CST's.

The valuable point is that you may benefit from gentle neck mobilization and relaxation training.

Most people who have long recoveries find they need to moderate their lives in some ways even after they have made major recoveries. The injured brain often remains sensitive to stress. Alcohol sensitivity is a common lingering issue. Many of us plan on needing time to rest and recover after stressful events. We don't have to shut our lives down. We just need to plan appropriately.

Those who have had long recoveries have usually pushed too hard before, in desperation, slowing down and starting recovery. Others have needed to take measures to reduce their anxiety with meds when other efforts failed.

As you say, everybody is different. The saying goes, "If you've seen one brain injury, you've seen ONE brain injury."

There are some basics that have broad applicability. The brain needs the correct vitamins and such to strengthen the myelin sheath and blood brain barrier. It also needs to detoxify all the damaged tissue.

Then there is a genetic component some think increases sensitivity to neuro-fibrillary Tau tangle malfunction.

I'm curious what your thoughts are on the role of light aerobic exercise in the treatment of PCS symptoms. Have you ever tried this personally or are there people on here that have spoken of its benefits or lack thereof?

About a month ago I joined a gym here in NYC and started doing very light cardio/aerobic exercise such as 10-15 minutes of light exercise on an elliptical. I found that breaking a small sweat and not doing anything more intense actually feels like its circulating some good blood flow through the body especially to the head and release endorphins. It relieves stress and anxiety and is just plain healthier than being sedentary. I haven't done it long enough to know whether it has any long term benefits or if it feels that is helping the course of healing. Of course it is also important to stay hydrated and drink a lot of water afterwards.

Nick,

Hey. I just turned 25. Have a very similar story as you. Got concussed back in April and haven't recovered. Also live in NYC, working in consulting, and the drinking definitely made my concussion worse. I have been seeing Dr. Cantu in Concord. I would recommend his clinic because they're very extensive and been great in explaining everything I've been feeling.

What I've been told is that these things do get better. They definitely do. It does have its own timeline that is just hard to gauge. It's been horribly difficult for me to accept this slow slow timeline of improvement. I have been resting now since October 2015, away from work and finally beginning to see minor minor changes. In my case the anxiety and depression from not getting better became uncontrolled, and I ended up actually checking into a suicide prevention clinic. Just make sure you have a handle on your anxiety as well. Good luck with this. It definitely will get better, just make sure you have doctors you trust.

Best,
Herm

Nick I get it even though I am only 6 weeks out. I admire your courage and honesty. I have a lower back issue as well and yes, you can always strengthen it and you have to keep it in mind. I think acknowledging is a BIG deal so one can be honest with themselves. It may get all better but it will be a vulnerable spot. I can't speak about concussions but I think once you have been vulnerable you are vulnerable again. I remembered that I had whacked my head moving a box on the front of my head on a beam. The tears rolled. I broke the skin, had a bump for a few days. I believe that hit to my head may have compounded this injury. I too shared the same thoughts about concussions - oh, I'll be all better. I too have put my activities on hold. Hard on the family. I think injuries are an Achilles heel so to speak. Know you are not alone. This is a great support group and your parents sound like they may be too. We all need that more times than others even when we are physically fine. Hang in there. Hugs

Herm,

Thanks for your reply. I am very sorry to hear about your anxiety as I can definitely understand where it's coming from. Hopefully, you can surround yourself with people who support you and remain optimistic and positive in your recovery as believing that you will get better is half of the battle.

I have been recommended to see Dr. Cantu by a friend who has also seen him. Would you recommend going? It's not exactly convenient for me considering I don't have a car and he's in Mass. What was your experience there like? Did they do any kind of treatments? Tests? Did you see Dr. Cantu himself?


Best,
Nick

Nick,

If you can do 10 to 15 minutes of light cardio without causing symptoms, it is probably OK. But, if you are doing it while you are symptomatic, you might want to back off to a sweat free level. The Buffalo Protocol has information about exercise levels.

FYI,
It is helpful if the Post Reply button at the bottom left is used rather than the Reply button in bottom right of the last post. The Post Reply button does not quote the entire post. When the entire post is quoted, it is easy to miss a post and question that someone wanted addressed. I missed the exercise question because it was buried with the long page of quoted posts. I can't imagine what it is like to try to scroll through long pages on a tablet or smart phone.

Many just have not noticed the Post Reply button.

Ya I didn't notice the post reply button in the bottom left. Thanks for the heads up.

Where can I find information about this Buffalo Protocol?

Nick

Google Buffalo Protocol

Regarding exercise, I am someone who exercises six days a week. I found not being able to exercise the most difficult part of recovery. Around the beginning of month 3 post injury, I decided to get back to my Leslie Sansone DVDs. I started slowly but progressed pretty rapidly as I noticed it helped tremendously with how I was feeling and my attitude. For me, the activity does not give me issues. At one point I was so desperate to move that I marched in place slowly while watching a mindless TV show. hahaha. I can exercise at a moderate to somewhat intense level for an hour. I don't do that much every day but I do try and exercise for at least thirty minutes 6 days a week. Hope that helps. That being said, I wouldn't go out and play tennis or run a marathon or anything. Leslie Sansone is basically walking really briskly with some jogging, arm movements and light weight training.

Mark In Idaho

I did not know about that post reply either on the lower left. I left you two messages tonight on the thread of PCS 2.5 years. I too am going to Google the Buffalo ...

Thank you and all the best.

Anita

Nick,

I feel that our injuries are very similar. I sustained my concussion early in the morning this past June when I got up to go to the bathroom, tripped over something and smacked my head on a wooden cabinet. I was also probably still drunk from the night before :(. I always wondered if having alcohol in your system when you get a concussion makes it worse or prolongs recovery? But anyway, almost 9 months and still experiencing symptoms. I can't imagine living in NYC with PCS, with all the noise and constant stimulation. How do you handle working and living there with your current symptoms? Anyway, hope you are doing better!

-Ashley

Ashley,

I hope that was a GOT reference :). Thanks for the note. This week is actually going to be my one year anniversary of my injury... Congrats to me I guess...

I too have always wondered the role alcohol played in my initial injury and then again three months post injury when I was feeling back to normal and drank for a few weeks before symptoms returned. Working and living here isn't always easy I'll say that much.

But at a certain point the negative emotions and stress of feeling limited and held back and stuck just felt like it was doing more harm than good so I decided to get on with my life and not let myself be stuck in this mode of self pity where I was just not doing anything all day. I wanted to live my life. I also had this job that I had lined up for me after graduation in may that I didn't want to throw away the opportunity. (I got concussed after I took the job and before I started working there.)

On the surface I'm the same as anyone else. I wake up in the morning put on a suit, commute to work, work at least 8-9 hours a day, and then come home at the end of the day pretty tired and crash/relax on the weekends. I also had to pass a 6 hour Industry exam called the series 7 which i studied for several months all while having PCS. I ended up passing with an amazing score which was a triumph for me considering my PCS. The one thing that I've sacrificed with this PCS is any social life as I still can't drink alcohol so on weekends I just stay in. I can't go out with my friends on saturday nights, can't get drinks with coworkers after work, avoid parties because of the noise, and that's whats getting old for me. Thankfully I have an amazing girlfriend who has stuck by me throughout this whole ordeal and has supported/hung out with me during all the down times.

I think if I don't feel any improvement by this summer I will have been at my job for about one year and may consider quitting to take some extended time off to just try and get better once and for all but we'll see when we get there.

Nick,

I am not trying to be a smart a&@ here but if your friends need alcohol for a good time maybe you should find new ones, lot more to life than a party.

Sounds like you have a great girlfriend...tell her for me please as another PCS person that she has been invaluable to your recovery, I sure couldn't have done this without my wife.

Again, I hope I did not offend you.

Bud

Bud

Haha of course I'm not offended. To be fair I am 23 and straight out of college and that's just what my friends like to do. That's what I liked to do pre injury and hope to return to once this is all over. I'm never going to be drinking the way I did in college but I enjoy casual drinking and hope to be able to return to that eventually.

Nick

Nick,

Yes, my username is absolutely a GOT reference (can't wait for the new season).
I know exactly what you mean about the social isolation this condition can cause. I am 24 and like you, have friends that spend most of their non-working hours at the bar. Since I haven't been able to tolerate that environment, I spend most of my time at home as well. I feel like at our age, it is hard to find social activities that don't revolve around alcohol or over-stimulating environments!
Also, not exercising is a tough thing for me, since I was so active before my accident. I am currently doing 30 minutes on a stationary bike almost every day but all I want to do is to go running or hiking again. Like you said though you can't sit around feeling sorry for yourself so I've adapted and picked up some low-key hobbies to keep me occupied (apparently I can draw pretty well, who knew!).
I'm glad you have a girlfriend who supports you, that is so imperative in this type of situation. My boyfriend for over a year gave up on me after the 7 month mark :mad: , so you are definitely lucky!
I think maybe taking time off work for the summer may be good, full-time work could be hindering your recovery. I'm in the opposite situation, I've been taking it easy for almost a year (very little work and no school), but think I need to start doing more and getting back to a normal routine, because who knows when this will end and life must go on! But like you said, we will see.
Anyways, sorry for venting, but I am discovering that this forum is a great community for us survivors and since nobody I know personally can relate, I figured I would just throw my thoughts out into cyberspace haha.
-Ashley

MOD,

Sorry to hear about your BF that's never fun on top of dealing with the injury. And ya it is tough considering most social activities around our age are centered around stimulating environments with either music lots of people, screens, or drinking. Can make you feel a little isolated. I hope the exercise is helping a little bit and that you can start to find things that make you feel better.

Hang in there.
Nick