Now suicidal thoughts
 

Hi,


So for those who don't already know I'm around 10 months in with post concussion syndrome.


Now, I feel done. I cannot bare this one symptom any longer. There's just this one symptom that has been bothering me this whole journey and I've had enough. It's this dreamy/numb/foggy feeling in my ENTIRE body.


It's been here all along. Ever since I hit my head. It's usually at a moderate level which I can handle, but with activity it gets so high it's hard to tell whether I'm in a dream or it's reality. It can get so bad that I can't even talk to someone in a conversation, or walk around cause I can't feel my body.


I don't know what it is. And I almost feel like no one else does. I try to discribe it to my doctors and they all look at me like I'm nuts. Some people on here have thought it was a bunch of things, anxiety, neck issues, etc.


I'm still not sure. But I just had it. Been going to camp all week and it's making it so much worse. It gets worse with activity. I feel like no one with PCS has this and no one understands it around me. I honestly don't know how much I can take it any longer and I've been crying a lot and having suicidal thoughts.


Also been trying all different treatment.. Nothing has worked yet.

Sam,

Have you had your Thyroid hormones and other Thyroid issues checked ?

It's a simple and common blood test. Ask about it.

Thyroid problems can also lead to depression.

No I haven't gotten it checked. I think my depression is just mainly because of this crazy symptom.

Could this be something else other than the concussion? I've had incidents BEFORE my concussion where I felt like this for a short time.

Could it be something like derealization or depersonalization ?

Or a combination ?

Like I said I honestly don't know. Which makes my depression and suicidal thoughts worse because I feel like no one can help.

Derealization or depersonalization are not conditions. They are just symptoms of something else.

Your previous issues would support getting this blood work done. Thyroid issues and such can make all of these other symptoms, depression, fatigue, dreamy feelings, etc., much worse.

And, stop trying to day to day critique your condition. You need to endure day to day but your recovery is a week to week and month to month situation.

Sam I saw some studies online that seem to think de realization and depersonalization can actually be caused by head truma so it could certainly be this.
As you mentioned, who knows, it could even be something else.
My advice to you would just do you best to relax, as hard as that is, and consider getting on some medication.
I felt a lot like you , and about 6 weeks ago I started lexapro, and it really helped with my mood swings and my depression. It made me feel hopeful that someday it will get better.
Finally remember that you are super young. You have lots of time. Certainly someday, someone will be able to help you or things will naturally get better, and you wil be a stronger person for having to go through it.
Ps I saved a kitten a couple weeks ago and it has also really helped distract me. He's great company. This might apply to you if you are an animal guy

Sam, was it you who was taking Amantadine?
Are you still taking that or tapering off that?

Yeah that was me. I am now off amantadine. Was on it for about a month and a half and it did not really do anything. Was not helping nor making me worse.

I think I was doing 50mg twice a day? Don't remember

Thanks Sam.

I just wondered. I thought it may have had something to do with the way you're feeling right now. I guess not.

Mark, who do I ask to get this blood work done? My pediatrician? Or someone else?

Hey Sam,

I experience similar issues.

I believe you've identified a significant factor in why you may feel this badly at times, but I don't think you've completely put things together. That is, I believe your activity level is putting your mind into a dark place, and that this dark place can be mostly avoided by curtailing your activity.

I know that every concussion is different, as are the resulting issues we experience. However, since my concussion I've learned that activity and stimulation have a profound impact on my physical and mental state.

For me, too much activity and/or stimulation have a tremendously negative impact on my physical and mental state. The impact of such events (I call them triggering events) typically lasts 4-7 days, but sometimes for 3-4 weeks. During this period I am a very different person in every way; my wife and children have come to learn this and tend to give me space and time alone. In this state I look for conflict, can feel extremely depressed, I ruminate, feel alienated, and am impulsive, and do not see the good in anything. My head feels different, I think very negatively and darkly.

So, in my experience, these things ALWAYS correlate with too much activity; if I am careful and not in a recovery state, I have humour, can tolerate more family interaction, I don't brood or look for fights, and I'm more open-minded.

Perhaps what you should do is keep a daily activity and headache/mental state log. My guess is that you'll see a correlation between too much activity and how you feel during the next day or days that follow.

If that's the case, and as Mark has pointed out in other threads, try to learn what your indicators are for too much activity or over-stimulation. Once you are familiar with them, you can taper your activity so that you avoid triggering events. I used to be good at identifying these for myself, but recent changes to don't allow me to catch the early queues.

Anyways, I hope this might be helpful. Once I learned that could avoid being in that "bad" state, it helped a lot with my hope. It also made me think that "healing" is likely hampered by the stressful state associated with my recovery periods.

Thank you Micro Man and to everyone else for the replies. Really appreciated.

Sam, please make sure you talk to your parents, your doctor, a loved one or even your closest friend if you continue to feel extremely low and depressed and especially if you're having suicidal thoughts. That's a very scary place to be for someone so young and it's important that you tell someone that you trust and feel comfortable with just how bad you're feeling. It's sometimes easier to keep it inside, but it's times like this that we really need a strong support system in place to help you through it all.

Will do. Will probably tell my doctor next time I see him. Do you think actually going to therapy and talking to someone would help? That's what my doctor recommended. He said that just even talking to someone about my concussion every week and getting it all out could help.

I do Sam, especially as you've mentioned having suicidal thoughts.

It will Sam.

Sam,

My worst moments have been associated with to much activity/ stimulation and lasted for several days after. Depression, anxiety very little sleep were the results. My wife could tell it was coming on before I figured out what was happening, I usually just sensed something weird taking place before it hit me full bloom. I am much better now and can tolerate much more physically and mentally.

Talking does help, I have had many a time over the last year that I break down in tears and let it all out to my wife. It really did help.

I also had some dark thoughts but God helped me through them and they have disappeared.

Bud

I'm re posting on this thread because I still am extremely worried, upset, and absolutely shocked at this point.


School is going to be starting up again soon and I am having massive panic attacks. This dreamy/numb feeling is ruining my life as we speak. I cannot seem to bare with this any more. 10 months of this constant symptom is making me insane. I cannot picture myself being able to do anything within school with this feeling. If I don't feel better before school I don't know what will happen. Probably a repeat of last year.

Getting bullied, made fun of, exclusion, etc.

Last school year I suffered it out and got D's and C's.


I have breakdowns and cry so hard over this a couple times a week. Every single day its there and I try to have strength and not think about it. But I just cant do it anymore.

I've tried every treatment you can think of, nothing has seem to really work.

Been getting into fights with my family because no one knows where to turn anymore. They think I am crazy and need to talk to someone.


This dreamy/numb feeling is always there. Its like a devil haunting my life. It started as soon as I hit my head and has NEVER gotten better since.


Hopeful that someone will have a new answer. But all we can do is 'hope' right?

Sam,

Can you get your family to take you to the concussion clinic at Mass general Hospital ? http://www.massgeneral.org/children/...s.aspx?id=1689

It is one of the best.

Looks good. But the question is would they be able to get me back to normal?


I will show my family this and talk it over with them. I'm willing to try anything.

The Mass General program is the best in Massachusetts. You local care is light years behind.

Sam,

There is an old saying.... "one step at a time." Try to not let your mind wander into the worries of what can go wrong tomorrow or even an hour from now. It does take practice.

I sort of adopted this idea of not allowing tomorrow to ruin today and it has helped. I try to limit thoughts of tomorrow and the future only to what is necessary for proper planning.

Do your parents ever read this site,maybe they can read this and see if it helps them understand you any? I have owned my own business for 20 years so I have plenty of experience at my job. I missed 4/12/14 through 1/20/15 from my injury. It has been difficult this year....I have had a hard time making decisions and what was normal and easy for me prior to my injury became very uncertain, I had to ask my sons who work with me lots of times if I was making the right decision.

That is the bad side. I AM GETTING BETTER and you will too. In fact, I believe I will actually come out of this better for the things I have been forced to learn and I think the same can happen for you.

I imagine that this is very difficult at 15...it has been for me and I have much more life experience to draw from. Be patient, be courageous and stay real close to your parents, talk to them and ask questions.

I don't know if this will help any, I hope it does...your going to be ok again. I will be praying for you.

Bud

Thank you mark and bud,


Bud, I just don't know about patience anymore at this point. People keep telling me that you'll feel better soon, you'll feel better in a couple weeks, weeks go by then they tell me a couple months, etc.


And with school..


I'm so scared. I'm actually going into Freshman year and I BARELY made it past last year.

And the reason I'm so scared is that freshman year is a huge adjust alone..

But for me I'm going into this year with the same feeling I had last year. (My dreamy symptoms that make life miserable )

They make everything extremely worse. and I'm just speechless cause I don't know how I'm going to do work, find my classes, pay attention, be in conversations for so long, and do everything all the "normal" kids do with my symptoms.

I thought I would be better before school starts...
It starts in a couple weeks.

Sam,

Have you and your parents spoke with a school counselor or the principal about your situation?

I remember starting freshman year 3 days after I broke a collar bone, dislocated my right shoulder and concussed from a motorcycle wreck. It was intimidating.

I have found that when something out of the norm pops up I get really worried now. I have been able to alleviate a great deal of the worry if I remind myself to gather information and plan before I decide only bad will happen and I won be able to handle the situation.

The more information you can gather the more of a comprehensive plan you can develope so contact a school official asap, always with your parents.

Find a simple motto you can remind yourself of to stay calm when you start to worry...like "plan, not worry". I have used one for me when I feel out of control coming on to remind me to settle down and ask for help or plan. Mine has been a bible verse.

Bud

Sam,

Back to the patience thing. I am 16 months out now and things are finally changing.

1 month ago I did not think that I would ever change, that I was doomed to be a helpless child. Sleep is returning and many other symptoms are easing. My head isn't done with me yet but I am becoming less scared and more hopeful finally. I even got up on water skis this weekend for a couple of minutes...I was sure that would never happen a month ago.

I know patience is hard but it is your best ally now...in life really. You are learning hard lessons for a young age but by no means is success out of your reach.

Bud

Sam,

My daughter also has symptoms like you. Today she totally zoned out. She said it was like being in a bubble watching everything / feeling robotic on auto pilot /not plugged in / something messed up in body-brain and nothing makes sense.

She is starting high school and the thought of school works scare us both. We do have a team of professionals working with her. You should consult with a neuropsych, they usually work with the school to put together a remedial academic plan.

We went from "hope" to "cope" mode now. Just living in the moment, because there will be good days and bad days....

Hang in there!

Thank you so much bud and mystical.



Bud,

Last year I talked with my guidance counseler and school nurse a lot.. After a month they completely forgot about it.

They thought it was short term. I remember visiting the nurse when things got bad and she was like "YOU STILL HAVE THE CONCUSSION? WOW YOUVE HAD THIS FOR A WHILE!"

And my teachers and staff really did not think much of it. Like I said I feel like they all forgot about it.

Sam,

You would be eligible for temporary accommodations and/or modifications depending on your individual situation and individual needs. You should ask your parents to look into that before your return. Any school staff who have contact with you should be informed about your condition and educated about that condition AND your specific symptoms/needs.

This is a PDF file and outlines steps that need to be done. It also outlines formal support services such as IEP which is an Individualized Education Plan, or a Section 504 if temporary accommodations are not enough and your symptoms take longer to resolve than at first expected.

http://www.cdc.gov/headsup/pdfs/scho...o_school-a.pdf

Returning to school after a concussion: A Fact Sheet for School Professionals

Hope
 

Hi Sam,

I have read your thread and my heart goes out to you. :hug:

I, too, have had dissociative types of episodes since head injuries. Not fun. :(

Members are giving you excellent advice!

Possibly a consult/care at MGH.
Possibly an Individualized Educational Plan.
Possible therapy/support for you.

I'd like to add: Sometimes family therapy is also helpful, even short-term.
As Lara has pointed out, it's very important that everyone around you understands your needs.

I was very sad (and a bit angry) to read that the school guidance counselor and school nurse had "forgotten" about your concussion.

Both understanding and support are critically important for your healing.

I am so glad you are reaching out here. :hug:
There is hope, it's just hard to see it, to feel it, at times.

Warmly,
DejaVu

Sam,

I have to admit that I would not have been able to do high school when I was at 10 months. Heck, I'm at 22 months and I still can't do it. However, things overall are better than they were in the first year.

Take Bud's advice and try to not let your imagination and impulsivity get away from you. When this starts happening, find a non-taxing distraction that gets your mind off things. Lastly, I think you really need to limit your acitivities... too much activity will make everything worse, and will hamper your recovery.

Take a look at Lara's suggestion to see if it can help you out.

Also, show your parent's this forum. We all understand the stress and worry you are experiencing. And we all want to see you get better.

Hang in there Sam!

Thanks again everyone. Really appreciated.




I'm trying my Hardest to look at everything more positive. But it's just hard.


I'm going to definetly be talking to my parents about the concussion clinic, and school. And keep In mind all the advice you have all told me.


I look back to when I first got this injury... Would have never thought I would still be struggling so much 10 months later.



Sam

Sam,

I can understand your disappointment in the nurse and others dropping you....I was supposed to have been seen by my neuro surgeon at 6 months. They forgot and took another 3 months to get me in.

He was surprised to see me in as poor a condition as I was at 9 months and said," I didn't expect you to be this bad, I've done all I can." No recommendations as to where to turn were given.

A successful guy I knew told me once, "Don't be afraid to kick the door open to get somewhere." Sometimes schools respond to a squeaky wheel if you know what I mean.

Bud

There are online schools, K12, and up- many are free, those might be worth looking into you can set your own pace and take breaks as needed..

http://www.onlineschools.org/

I thought of that too but they mean computer screen time.

Sam really needs to find a concussion specialist like at Mass General rather than a pediatrician and alternative therapy system.

Exactly my feelings. This is our new reality though and we both have to move forward to regain some sense of ourselves. I completely empathize with you.

Hi Sam,

A couple thoughts:

1. About school: when my daughter had her concussion, we were under the care of Children's Hospital of Philadelphia, so her Return-to-School plan was amazing. They controlled how the school parsed out her work in a very slow manner while she continued under their care, and the school could not increase work without the doctors' sign-off. All her teachers & nurse were aware of the plan. I've no doubt it's because we were able to be in the CHOP system. I have heard very different stories from many other people, not just you. If you can get to Mark's suggested hospital, GO. It makes a difference and you need it now, and yes, you probably need/qualify for a 504/IEP but your parents should contact the school district now to start getting info.

2. About therapy: Since my concussions over the past 13 months, I have struggled with suicidal thoughts. Seeing a therapist does help. First of all, it is a lifeline to someone who is not bogged down by us at home. Second, they are professionals who can help give us practical skills on how to manage these feelings when they come up: our brains are messed up, so it's even harder to work with intense feelings on our own. I do Dialectical Behavioral Therapy, which is mindfulness based and teaches lots of practical skills, but you can see any recommended therapist you are comfortable with.

I would recommend really prioritizing finding the therapist.

It's very hard to feel so humbled and ask for all this help, right? I've been there.

Be well.
Julie