TBI - 15 years later
 

Hi,

I am new to this forum. It is the first time that I am posting my problems on a forum such as this, and I am hoping that anyone could help me with some insight as to what I am dealing with. I am at wit’s end and feel as if there is no hope for me.

I was in an accident when I was 12, I am currently 27, where I was hit by a car and suffered brain damage at the back left of my skull (fraction), and a knock on the front right which according to the docs caused a tear and leak in the frontal lobe (right side). EEG and MRI results from back then aren’t available anymore unfortunately.

I was unconscious for 3 days when I started to come by, confused and most of my limbs in cast.

I have been suffering from symptoms ever since which are still a mystery to me, and I am (hopefully ignorantly) doubtful that any treatment would be able to help me other than medicating me into a zombie. Note that before the injury, I was normal, happy, and getting A’s in school, which deteriorated vastly ever since. The symptoms have increased vastly in the last few years.

I saw several specialists and therapists in those early years, but nothing really came from it I think. I was too young to understand I think. And it was basically left at "he will heal eventually".

I suffer from great depression, obsessive irrational fear, anxiety, worry, paranoia, major panic attacks (nearly every day, sometimes several times a day), aggression, mood swings, and a permanent feeling of impending doom, among many other things ever since the accident. Other symptoms are attention deficit disorder, obsessive compulsiveness, extremely bad memory, difficulty speaking (as if I sometimes forget words mid sentence and um and ah for ages). I usually go totally blank when put on the spot, like to retrieve information from memory- or make quick decisions.

All of my symptoms are uncontrollable, especially the anxiety. My mind is like a radio, and that station is always on – chattering away like nothing else. This includes obsessive and irrational paranoia, fear, dread, doom, and worry, and constantly reminding me of previous emotionally hurtful incidents. Dread and doom being the key words, because I always feel as if I am going to be emotionally hurt, that I’m unloved, that I’m going to be deceived.

I generally feel depressed because of the above. To give you an example of how intense this is: I either can’t sleep because of this “radio”, or I wake up in the middle of the night – usually around 4amish – and the radio would automatically and nearly instantly be switched on. If I’m lucky I will eventually fall asleep again, but usually I will just lie awake in agony for hours until I have to get up.

These feelings build up and I would break down crying uncontrollably every day. After crying I feeling somewhat more stable and rational.

To explain the intensity of this feeling is basically.. It makes me have self destructive thoughts to escape the pain. During the peak of the attacks, I just want to die. And sometimes end up hitting the walls- I actually broke my hand this way recently. My mind is like an enemy, it is out to get me, to kill me. It can’t be reasoned with, it can’t be tamed. It is all irrational thinking, obsessing especially about previous incidents which ripped my soul apart. About current problems, and about things that might happen. I am extremely emotionally sensitive and empathetic, and I think I feel emotions much sharper than other people. I can be emotionally hurt by the slightest thing, and being intentionally emotionally hurt is like the end of the world to me. I want to die. I fear being judged for what I am feeling, I fear abandonment the most. Utterly terrified of it. I just want to die when I am emotionally hurt, distanced, deceived or anything by my closest loved ones – wife.

I am also just about permanently in a kind of dream like state, as if I’m walking around in a dream. This feeling becomes extremely worse however during what I’m assuming are panic attacks. It feels as if I’ve had like 3 pints of beer, but am in control and act normally- but have the dizzy feelings of being drunk. Or kind of like shock, when you are about to faint. It just feels like life is going past me, while I’m stuck in this unreal feeling where I don’t even feel awake. Sometimes this feeling would get so bad that I would be walking around aimlessly, muttering random words to myself, nervous and on the verge of breaking down. Or for instance once when I was driving the long road, several times I would be so “in that mode” I would come by and think “What the hell, I’m driving!”. Like I almost forgot that I was. How weird is that? I’ve read something about something called “depersonalization” but not sure. Could very well be.

I had an episode a few days ago where I was at a work function BBQ with lots of loud (drunk) people. I’ve always had social anxiety. I started zoning out completely where I felt I was drunk, asleep but present, like I was a spirit but had control over my body (take note that I don’t drink at all). Just so dizzy and weird. Someone spoke to me, and I did not even understand him. After politely asking him to repeat himself, I somewhat heard what he was saying, but no idea what he was talking about. I just nodded. Felt dread build up, and tears formed in my eyes but I managed to stop it before it turned into a complete breakdown – which I was on my way to. Eventually I started to feel a bit better, but for the rest of the day I was feeling nauseous and tense.

I do not want to drone on too much (TLDR) with further details as I even fear being judged now.

This feeling, this “dread mode” that I get in, and actually feel most of the time. It’s absolutely emotionally and physically draining, I’m an emotional wreck. It is like a world of darkness that I can’t escape, always fearful, depressed, paranoid, emotionally ruined. It’s gotten worse as time went by, and I turned to alcoholism since age 16 to mask it- and I daresay it worked. I however stopped drinking altogether 6 months ago which might be why I am experiencing such a sharp increase in intensity of these symptoms.

I wake up in the mornings with this dread feeling at its most prominent, and then it would slightly subside towards midday. Then it would decline again towards bedtime where it would be bad again. This is important because I remember just after the accident I was absolutely unable to go to school because I would wake up in this complete dread state. Then I would also cry at night around bedtime. It is still present 15 years later. I have a bunch of random bald spots on the sides of my head which I’m assuming are from stress.

I have been put on several medications; I have been on Cilift 20mg (citalopram) for about 10 years now, and been prescribed a bunch of others by GPs which only either made me feel worse – more anxious and panicy – or a complete emotionless zombie. These meds were the following: Miritazapine Sandoz, Aspen Trazodone 100mg, Ativan, Sereroquel 50mg.

Due to financial restrictions I’ve been unable to see a psychiatrist until 2 weeks ago, in which she ordered an EEG be done with a temporal lobe electrode. I went for it in the morning a few days ago, and was so anxious. Tears streamed down my face as they applied the electrodes, and had a panic attack when the strobe lights went. No convulsions, just crying, fear, dread. So I am sceptical that it will show abnormal results as it might just have been a panic attack. I felt sick the rest of the day, sore muscles, dizzy, and nauseous. So, I don’t know.

I have wondered about it though, because I often wake up at night flailing and kicking- sometimes nearly biting my tongue off. I am doubtful, but the results should be here this week.

So basically, I cannot shake this dreadful feeling of doom, and it is present regardless of how good things are going, it’s totally irrational and wrought havoc on my marriage. The feelings build up until I break down crying uncontrollably every day. It had sent me into a deep depression now, and I barely have the energy or will to get out of bed anymore. I just want to cry the whole time. I have lost a lot of weight, I currently weigh 65kg at 5.8’.

Is this normal? For nigh on 15 years I was under the impression that this is life, this is normal, mostly due to the “man-up” attitude from my home support and society. I have been abandoned by just about all my friends afterwards, and can count my real friends on one hand.

Does anyone know what I am experiencing here? Am I alone? I feel miserable that I might have to face the rest of my life this way. I am going for a follow up session with the psychiatrist soon, as soon as the EEG results come through. Hopefully she will be able to make a diagnosis and prescribe the right meds for me.

If this post is not appropriate, please let me know and I will change it accordingly.

Hello Willem,

Welcome to the NeuroTalk Support Groups.

I'm very sorry for the reasons that bring you here. You've certainly had a very difficult journey at such a young age.

When reading about some of your symptoms, I was wondering if you've ever been evaluated for Post Traumatic Stress Disorder? I just reread your post and realize you have not seen a Psychiatrist until recently though.

Obviously I am not a doctor but so much of what you have been experiencing would make me wonder; especially the part about the "radio" always being on.

Hi, thank you for the reply. Regarding PTSD. There is something I left out of my post which is influencing me greatly at the moment. I had a marital issue 6 months ago that lead me to the most traumatic experience I have ever had. I have been an emotional wreck since, much more than usual. As if it happened yesterday, I am living the hell every day. Obsessing. Reminding. Hurting. Even though everything is ok now, it still bites at me in my world of darkness :(

Maybe that can also shed some light on what's going on with me. Apologies for being vague.

Willem,

Welcome to NeuroTalk.

I'd love to try to help but your post is just too long and too many paragraphs are too many lines. I can't follow from line to line when there are more than 5 lines. Plus, many of your sentences are too complex with too many issues.

I guess you are in Europe or Canada.

From what I can follow, it sounds like you have a severe case of TBI induced depression and anxiety with possibly absence seizures or brain/cognitive freeze. An EEG may or may not show a problem.

It sounds like you need a full battery Neuro Psychological Assessment to properly identify your problems.

Other than meds, you don't say what you have done to try to reduce your symptoms. My first real improvement came after a psychiatrist started me on vitamins and supplements 30+ years ago. There is a list of vitamins in the sticky at the top as "Vitamins and Supplements" Check out post 101 on Nov. 2014. It has the latest information.

I'll try to read more later.

My best to you.

Here's a link to the vitamin post that Mark has mentioned above.
It might just make it easier to find if it's posted here.


http://neurotalk.psychcentral.com/post1106982-101.html

Thank you for the response, and apologies for my jumbled post. All I have really done to improve my symptoms were basically trying the meds the GP prescribed to me.

Only recently had my situation gotten so bad that I am actively seeking help.

My biggest fear is that there is not much that can be done about it. I also fear that the EEG will not show anything useful. I just e-mailed the neurologist's office, and was informed that the results will be by the psychiatrist tomorrow.

I keep being emotionally harrowed by irrational fear and doom to the point of becoming disorientated and crying uncontrollably. This happens about twice a day, and already had this happen this morning.

I am definitely going to check out the vitamin and supplement section that you pointed out, thank you.

Just wanted to let you know that I'm feeling for you, man. I thought your post was well written and quite gripping. I can't imagine what you've been through and are going through now.

You should be proud that you have given up drinking. This is a huge plus! Alcoholism destroys people and families.

The vitamin/supplement regimen seems like a logical place to start to try and fix some problems. Your nutrition is really important for mood and body healing.

Anyway, you came to the right place for guidance! Hang in there. "One day at a time" is what I tell myself.

Hi, thank you for the inspirational post. It really lifted my spirits this morning.

I received an e-mail from the psychiatrist's office this morn, and unfortunately the results are "quite normal at this stage".

I'm actually a bit disappointed to be honest. Thought we were finally going to have something, a cause, to treat medically. :(

Will try not to let this discourage me. Just uncertain if the 56 pound follow up session with the psychiatrist will be worth it. But something tells me I just need to bite the bullet and go for it.

I'm still struggling to sort through your post. My cognitive struggles make it difficult. I'm not surprised the EEG did not show anything. Absence seizures rarely show up. A qEEG read by a true specialist likely would show some dysfunctions. But,.... Even in the US, it is difficult to find a good specialist.

You might ask to try olanzapine. It can help you with weight and some of your other symptoms. It is not a long term med for most but can help with hard times.

Have you had any opportunity to lower stress levels in your life ? Stress is a killer for people like us. Surviving TBI is often about what we do in our lives rather than the meds doctors prescribe.

Did you read the thread about Debbie Wilson and her success with CBD oil (canabidiol oil) ? It may be worth a try if you can get it.

Here is the thread about CBD oil:

http://neurotalk.psychcentral.com/thread216523.html

Hi Willem, Like Lara my first thought was it sounds like PTSD you're suffering from. Glad you kicked alcohol, that doesn't help any psychosis, it can take months for the brain to overcome the effects. Do you exercise at all? I was thinking maybe the endorphins would help your anxiety and doing a team sport would help your confidence.

Thank you for the response. I used to gym intensely before then, and stopped when the issues started. I lost about 10kg in a month. How does one treat this? It feels like I am going to be a irrationally nervous, anxious, depressed, fearful person for the rest of my life. :(

Everything that I am experiencing had been present since the injury, but now it's intensity is a hundred fold.

It also feels to me personally that therapy would make things worse, or just not better at all. I am so scared.

I'm currently on Cilift (citalopram) 20mg, and have been for many years. I am worried that it is actually making my symptoms worse. I tried to wean myself off of it over a span of a month or so before however, and it turned out really badly.

Like you I lost weight early on with PCS, I lost about 12 pounds, which I've put on again.

Anxiety leading to depression seems to be a common thread regarding PCS, most of us on this forum have suffered from it to some degree. Most doctors prescribe AD's for it, first Amitryptaline then SSRI's or SNRI's like citalopram and mirtazapine which helps the majority. I didn't find them particularly helpful so had to find other ways to cope which wasn't easy. I found walking to be beneficial, gradually increasing the length, I found it made me feel healthier, took my mind off myself. I also try using mindfulness, thinking about positive things, happy memories and such like, basically day dreaming I suppose lol.

I would give talking therapy a go, you might find it unlocks doors for you.

Regarding your citalopram I think you were a little ambitious trying to wean off it in only a month after being on it so long. I think it would take 3/4 months of very gradual tapering, ask your doctor to see if you can get it in liquid form for easier dosing. Also, sometimes doctors can prescribe another AD for limited time to wean you off the one you're on when you get to a difficult low level.

Personally I think getting drugs fee is the way to go but everyone has their own view on this including doctors.

Good luck!

I am glad I was able to lift your spirits! I hope that I can give back to this forum as much as it has given to me.

Sorry to hear about your disappointment with the EEG results. My opinion is to just bite the bullet, as you say, and attend the follow up appointment. As I'm sure you know, there seems to be a lot of chasing nothing when it comes to seeking help for PCS symptoms. Who knows, maybe the next test will show something.

Don't get discouraged! There is always hope. I know that as long as I am on this Earth I will continue to fight. You should do the same! I'm pulling for you, my friend :). We are all stronger if we join together in this battle.

I would be grateful the EEG came back negative. It means your brain is working correctly, at least in the recognizable seizure category. An EEG is not going to show how your mind is thinking. It looks at how your brain is functioning. The brain and the mind are two different things.

Have you had any blood work done ? Thyroid and other hormones would be good. Weight loss can indicate a thyroid problem. Thyroid malfunction can effect thinking processes, depression, etc. Also, a good blood sugar test may be in order. Getting B-12, folate, D3, mag and some other levels tested would be good.

Are you taking any B-12 vitamin supplements ? It would be a great start to finding solutions. Weight loss is a symptom of B-12 deficiency. 2000 to 5000 mcgs per day would be good. Methylcobalamin B-12 is best.

Hi,

It's been some time since I have made this topic, and there have been vast improvements with my mental state.

I have experienced such major improvements, that I feel more alive than I have in many many years- all through the power of God.

Have been baptised since, and given my heart to the Lord Jesus Christ, and gotten rid of all negative influences in my life.

Going strong now, almost a year, without alcohol and illegal drugs :)

I am still struggling a lot with certain things though, mainly: focus, attention span, major memory issues, and mental processing. Major distracting issues.

Major hyperfocus and boredom/distracting issues.

It is affecting my work negatively, and I even avoid driving anymore because I get distracted so easily, and zone out that I forget the rules of the road.

Have nearly caused a couple of accidents, so I'm driving as little as possible now. Fortunately, I have an amazing loving and understanding wife that helps me in this, and many other regards to my weaknesses.

So, now I am wondering if it would not be worth approaching doctors with the possibility of the treatment of ADHD symptoms via example Ritalin. Because that is exactly what it feels like, after reading somewhat into the symptoms.

It's hard to explain. It feels like my mind is everywhere, but nowhere at the same time?

Could anyone please share or give some advice to this?

Willem,

There is an Adderall thread just a bit back, maybe a week ago. Have you tried caffeine to see if it helps ?

Regarding driving, I find I am safest in a vehicle with lots of steering feedback. Cushy seats and soft power steering allows me to lose track of the task at hand.

Congrats on your new birthday.

Thank you, especially for the new birthday comment!! :)

Coffee, I have about 2 in the morning which I do think helps me wake up somewhat from the hazy feeling.

I have enquired about Adderall before, but it's not available in my country (South Africa). So I've been wondering about Ritalin instead.

But will have a look non the less :)

Like Mark, it's taking me time to work through your post.

I echo the suggestion of a neuro-psychological test. It really is the best way to access how your brain in working and how that is impacting your day to day functioning. Once your issues/deficits have been identified, therapies can be targeted accordingly.

Just from the symptoms you've described, you sound like a candidate for intervention to help you with PTSD. Attention processing therapy might also help you improve your focus and get those racing thoughts under control.

The point is, once your neuro-psych identifies your problems, there are medications, therapies and adaptations that can improve your life. Knowledge is power.

Hi Willem,

Here are some things the psychiatrists suggested for focus/attention issue:

Stimulants - Vyvanse, Concerta, Adderall
Non Stimulants - Intuniv, kapvay, Strattera, Aplenzin

But definitely see a neuropsych, they are very helpful in determining what your brain issues are.

Hang in there!

Willem,

Glad to hear you are doing better...and I like your testimony. We will meet someday as I too am a believer in Christ.

Good spouses are a real life saver when long term injuries occur. Your wife sounds like she is of great character.

Praying for a strong future for you two.

Bud

Hi Willem,

Welcome. In reading your thoughtfully articulated post, it's clear that you've been dealt some difficult challenges to face. I think it's fair to say that anyone put into your shoes would be struggling to cope and move forward, and it's probably good to remind yourself of that fact. To me, the fact you have the courage to post your challenges and are looking for help is something that is really, really positive.

While I can't relate to all your issues, I can relate to a fair number of them. Know that you're not alone, and also that finding the right help can make a significant difference in your life. I think it's fair to say that a Psychologist and Psychiatrist seem like a great start... both experts can likely tweak your meds and provide strategies for dealing with those gloomy, dark days that we all dread so much.

Keep up the fight Willem :)