Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).

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Old 03-03-2016, 07:09 PM #1
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Hello all. I am three years in to PCS now and although started to come to terms with the new me, quite scared some days that I will never get better. I was off work for almost 2 years and now being back at work for approximately six months I am experiencing severe symptoms. When I am at my desk or at home doing work on the computer I feel 80%. The issue lies in that each time I go to lunch or coffee meeting I feel very dizzy, out of sorts and shaky. Today I had to leave my meeting twice ( made up an excuse to leave the table), as I thought I was going to pass out in front of my customer. The feeling is unbearable and comes on very strong. Generally when I am at a restaurant. The initial stages are usually not so bad but approximately 15 to 20 minutes in I feel as though I'm going to pass out. It is the same feeling that I used to get is a child when you would hyperventilate and feel on the verge of passing out. When the symptoms come on my vision gets quite blurry and all that I can think about is getting out of the situation. I honestly couldn't remember just about anything from the meeting today. In the middle of the meeting I was thinking to myself that I should probably do a will soon, as the symptoms feel life threatening in the moment. I no longer feel in control of my symptoms and they are to the point where some nights before Falling asleep I wonder if I will wake in the morning.

I have been to countless specialists, physiotherapist, doctors of all kinds, masseuses, vestibular rehabilitation therapist, etc. As most of you, I am showing nothing on MRI, or CT and have been told that everything looks fine. The insurance company pushed me off of disability and urged me back into the workforce. I am now starting to think that this is the worst thing for me. That said I am now feeling helpless and working was feeling quite good in the beginning.

I had a follow up appointment with a vestibular therapist, Who said that he saw an abnormality in my left eye. He attributed it to my brain injury and potential distributor damage. The other therapist that I had been to told me that my tests were all normal. This specific therapist focuses more so I'm brain injury and vertigo. I will be seeing him for 7-10 sessions to see how I respond. The last go-round with vestibular therapy was not effective for me however upon reading more maybe I didn't get it long enough.

After the meeting today I came home and slept for 2 1/2 hours. I am still exhausted. I know I am preaching to the choir here but I wonder if things will ever get better. I will admit that I am quite a bit better than any year and a half ago, however I still have very nasty spells of the faintness dizziness and lightheadedness. Stress of any kind amplifies my symptoms and I truly feel helpless. I am going through a divorce and my ex does not take into consideration my symptoms and feels as though I am completely normal. She puts a lot of mental and financial stress on me. I feel like my life is falling apart.

If anybody has found any relief of their lightheadedness, dizziness, extreme mental fog and lack of energy I would love to hear about it. Practically begging for something at this point. Based on the supplementation thread of this forum I have been taking vitamins and minerals supplements every day for the past two years. This also includes a very expensive probiotic which I find helps with my stomach issues and in turn my brain. Circumin I have also found helpful at relieving neck issues and also providing some mental clarity and easing depression on the worst of times.

Anyway, after countless hours of research, forums, trying to take it easy, finding my threshold, suplementation, etc. I am still very ill and although a resilient person, at my whits end and some days truly fear I am dying.
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Old 03-03-2016, 07:33 PM #2
Mark in Idaho Mark in Idaho is offline
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Randomguy,

I see two issues. Meetings and restaurants are full of voices. That is very difficult for a struggling brain to process. It can cause an anxiety attack. That is what your symptoms sound like.

Second issue. If you neck is giving your trouble, that needs to be resolved. Neck injuries are often very subtle and only respond to gentle treatment and more importantly, discipline at home during rest and sleep.

I have to sleep on my back to get good sleep. If I roll onto my side, my neck gets inflamed and I have stressful dreams and a lousy day. So, I have learned to sleep on my back. I can wake up in the same position I was in when I went to sleep.

It helps to not go to bed until you are ready to fall asleep. I'm asleep within a minute or two. If you lay in bed longer, chances are you will change positions.

Stress and worry can cause too much thinking when you need to let your mind fall asleep. It would help to find a way to get your mind distracted into benign thoughts before you start your process of preparing to sleep. I have a few videos and CDs I'd listen to than did not cause stimulation and took my mind away from active thoughts.
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Old 03-04-2016, 01:07 PM #3
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Hi Randomguy,

Like your situation, I went back to work being told I was ready. WCB had sent me to all sorts of specialists as well. It felt great being back at work with everyone, but I started to backslide Into a relapse within the first few days and I continued to push through it for the next two months. When I followed up with a neuropsychologist, she told my husband and I that I needed to stop everything again. It's been about 2 months since my relapse and am now able to start doing things slowly testing my symptoms.

I highly doubt that you are going to die, but it's always a good idea to have a will.

The Have you paid attention to your breathing during these meetings? I only ask because you say it was like as a child when you would hyperventilate. Perhaps your breathing has altered during these meetings and you could take some control over that.

It sounds like you've been part of this group for longer than I have. I am only about 10 months Post concussion, So forgive me as I'm missing some of the background I'm sure.

When you say that lately you've been having trouble, would the trouble have started when the divorce started. Like you said, added stress can make symptoms worse. I know it does for me, and I'm sure it must be very difficult having someone who was so close to you completely disregard your condition. Do you have children from this marriage as well?

This is a lot for anyone to deal with, and it might be an idea to check into just temporarily going on something to help fight depression, or reduce anxiety, and although vitamins help, there are times that people need more than that while going through a tough situation such as yours.

Try to relearn some of the strategies of relaxing if you learned them before. If not, try listening to some guided meditation (even if that sounds lame to you) at least at bed time.

I hope things start getting better for you soon.


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Old 03-04-2016, 02:04 PM #4
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RG,

Sounds like panic attacks to me....I'm familiar with them.

That being said I have a couple of questions.

1. Do these business meetings take place in the same physical environment...if you meet a customer in a different setting does the same thing happen?

2. Do you have the same sort of reaction in the same setting when you are with family or friends?

3. Can you have business meetings in a less stimulating physical environment?

I ask these questions because as we know with PCS, environment has a lot to do with anxiety, it's not necessarily all in our heads.

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Old 03-04-2016, 03:02 PM #5
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When you are in these meetings are you breathing properly? It sounds like you may be not getting enough oxygen in, perhaps due to anxiety of feeling trapped in a situation. Do you do any exercise to relieve stress and anxiety, exercise is very good for mental well being.
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Symptoms overcome: Nausea, head pressure, debilitating fatigue, jelly legs, raised pulse rate, night sweats, restlessness, depersonalisation, anxiety, neck ache, depression.
Symptoms left: Disturbed sleep, some residual tinnitus.
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Old 03-08-2016, 12:54 PM #6
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Thank you for the replies all. To answer some questions:

-Yes, I do have a child from the relationship. Although my ex is a little hostile and tried consistently to get at me, I have ignored all confrontations over the past 6 months. I just shut off, as I know if I give in I will be sick. Very sick. It's passive aggressive, yes but my survival mechanism at this point. I just can't do it without getting extremely ill, so I completely avoid.

-I have always been a little bit anxious. Nothing serious and have been in speaking/presenting in front of people for the past 5-7 years. I was always pretty comfortable doing so and never experienced a panic attack of any kind in the past. By far the biggest issue I have now is every single time I meet with a client for lunch, or coffee there is usually a lot of background noise and lighting that immediately sets off my symptoms. I'm sure some of you can relate, but I instantly feel almost an out of body experience, like it's not even reality anymore. I almost completely zone out and feel extremely foggy. When sitting the chair sways ever so slightly enough to cause further disorientation. I then get a little shaky and about 10 min in each time, after speaking back and forth, head nodding, etc. I feel extremely faint, as if I could pass out at any moment. It's that feeling of hyperventilating as a child and seeing stars/getting faint and just plain out of it. To the point where i have considered of going to the hospital a few times over the past couple of months as I feel as though something very serious is happening and life threatening in the moment. Although I am more relaxed with friends/family the symptoms still come on in restaurants. Maybe just not quite as bad as I am not under pressure to exert as much mentally.

-Regarding exercise, all that I can do at this point is brisk walks/light cardio. Anything more than that and I am sick/completely out of it for days and bedridden. I am still not well enough 3 years in to complete any sort of vigorous exercise that gets my heart rate too high. I used to workout 3-5 days per week pre-inury for stress relief and I loved it. One of things I miss most.

I have tried to remain aware of my breathing and now bring a colleague with me to most meetings to lessen the amount of time that I am speaking, in order to breath. This hasn't helped at all lately. My brain is having a very difficult time filtering out background noises and I have a lot of light sensitivity. Not to the point of squinting my eyes, but on a subliminal level. My brain just cant' handle it and a major trigger. I wish it were as easy to just not be in those situations, but it's a big part of my job and a necessity. I also need to keep working to pay the bills and looking for a new job right now would be hell.

I really just don't know anymore. I have spent 3 years telling myself that things will get better, but some days I am worse than I was 2 years ago. Others I feel 70-80%. Relapse is so easy with this and finding that threshold is hard, especially being a single parent and having to make a living.

I was in for another vestibular assessment a few weeks ago and they noticed an issue in my left eye (very slight), which they attribute to the head injury/vestibular damage and have recommended therapy, which I have tried in the past and made me quite ill. Although now understand it can take months to see positive results. If anyone could share their experience on vestibular rehabilitation and if it had a positive impact with that I am experiencing, it would be great. Something has to give. If I could just get over the dizziness/faint feeling I deal with other symptoms and rest when needed. I am also still nauseas almost all day every day, regardless of sleep, although amplified if I don't get 8-9 hours.

I have seen 10's of docs/specialists and nothing has helped in any regard, aside from ruling other things out. The last thing I have left is vestibular therapy and if that's exhausted with no success, it's just the waiting game.
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Old 03-09-2016, 02:01 AM #7
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randomguy,
We have some what similar symptoms : lunch time dizziness, meetings overwhelming me etc.,

I went to about 3 or 4 ENT specialists in Washington DC area and their tests didnt prove I need therapy or any complex surgery like Perilymph fistula (though I still suspect on that line and it is an explorative surgery and no tests to prove it).

Even one specialist agree and another one completely say No to surgery and scares me

One thing helps me sometimes is ear plugs (still, unbelievable). Go ahead and try the vestibular therapy. You can always stop it any time.

I am still trying things. I take a break from therapies. Recent one I tried is dry needling on neck and head for headaches. I doubt it helped any.
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Old 03-09-2016, 05:12 PM #8
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Quote:
Originally Posted by pcslife View Post
randomguy,
We have some what similar symptoms : lunch time dizziness, meetings overwhelming me etc.,

I went to about 3 or 4 ENT specialists in Washington DC area and their tests didnt prove I need therapy or any complex surgery like Perilymph fistula (though I still suspect on that line and it is an explorative surgery and no tests to prove it).

Even one specialist agree and another one completely say No to surgery and scares me

One thing helps me sometimes is ear plugs (still, unbelievable). Go ahead and try the vestibular therapy. You can always stop it any time.

I am still trying things. I take a break from therapies. Recent one I tried is dry needling on neck and head for headaches. I doubt it helped any.
I just got out of a coffee meeting and man, oh man. Was on the verge of passing out the entire time...Just sick of this...I get so lightheaded and faint I think I'm going to fall over at any moment. My vision then completely gets messed up. If I haven't had been to a ton of docs and tests I would honestly be going to the hospital in suspicion of a stroke or something. It just feels terrible.

I have tried the needling too. Did nothing for me. My neck is a problem too. I have what feels like chronic inflammation in the area due to serious whiplash from my accident and triggers easily. I have found Curcumin to be most helpful keeping it at bay, however still a daily struggle and the dizziness/vision issues are always there in restaurant scenarios, regardless of the neck acting up or not.

Really just lost at this point.
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Old 03-09-2016, 09:29 PM #9
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RandomGuy
I experience these symptoms as well. I have been doing vestibular therapy for 9 months and it has been helping me. Dizziness and lightheadedness have slowly decreased. They helped me do an exercise threshold test and I've been able to slowly increase my heart rate threshold. I have also been doing acupuncture and getting my neck treated by a PT at the same time. I believe all have helped.

That said, I still have low level lightheaded, dizziness and more intense episodes if I over do it. I am not sure what will ever make it go away completely. I get the lightheaded/can't breath feeling when I am in meetings. I know it is not anxiety, but once it starts, getting anxious about it and not breathing correctly makes it work. I had to learn to "make myself breath" into my stomach rather than chest. I know, it's ridiculous that we have to also think about breathing, but I guess that's the way it is. I think we get this feeling in meeting because of visual stimulation but also because of concentrating on people talking and moving eyes/neck a lot to follow conversations. That's just my theory.

One thing that also helped with lightheadedness and reaction to stress - I got my adrenal hormone levels checked by an integrative doctor. They were all out of whack and he prescribed some herbs and supplements that really helped.

My neurologist wants me to try amitriptyline because she thinks some of this may be migraine/headache related. Have you tried any of the headache meds? I am apprehensive but thinking about doing it.

Thanks.
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Injury: March 2014. Hit hard on top of head by heavy metal farm tool. LOC. MRIs and Cat Scans clear. PCS ever since. 33 year old female. Trying to stay positive!

Persisting Problems:
fatigue, dizziness, lightheadedness, vestibular balance and vision problems, vision static, tinnitus, hearing loss, slight sensitivity to noise, sometimes the insomnia comes back, sensitivity to stress, exercise intolerance, emotional problems - But I still have much to be thankful for.
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Old 03-09-2016, 10:47 PM #10
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RidingRollerCoaster : I tried amitriptyline for a year and did nothing for me. But some had good success I heard. It makes you sleepy at first and when you get up you feel very dizzy. Then it subsided.

You can start with minimum dosage (10 mg) and see how you feel. I tried few other SSRIs too. SNRIs made my condition worse. I stay away from Narcotics and I doubt any doctor will prescribe that for you. No doctor ever mentioned Narcotics to me. Only once I got Dialudid in ER and ofcourse my headache and all other symptoms gone for a day and then it came back with full force. It was scary.

randomguy : I feel you. Think I get better to some extent I move on to next step when it comes to life but this new normal doesn't help to move forward. I am also lost at this point.
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