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-   -   Things you wish you'd known when you first got post-concussion syndrome. (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/140214-wish-youd-post-concussion-syndrome.html)

Jaystar89 07-02-2012 11:59 AM

Don't wait! If you feel something is off get it checked out and take it easy....

In August I suffered my 6th recorded head injury by september I lost my job, my november I withdrew from school, since, all has gone down hill...

I "ignored" my symptoms, after so many head injuries (from soccer) I just brushed 'em off kept telling myself I'd be fine just a few more days but things kept getting worse. Now 11 months later imy symptoms have gotten a lot worse. So don't ignore it, don't brush it off and keep on pushing. Take a break and slow down. Let yourself rest before you keep going. I've hurt myself worse now because I didn't stop. I was told 3 weeks I'd be better yeah well that wasn't true....

Listen to your body and do only what you can without pushing yourself.

Mrs-B 08-29-2012 08:55 AM

Still learning, but wish I Kwen this a month ago...
 
** Limit your computer time for only 10-20 minutes a day. It will be even better if you forget computer/iPad/smartphone for a while, specially on the first month or so. When you do feel ready to use the computer, make sure to readjust the brightness to minimum. Also helps to wear sunglasses while you are online. **

BTW, maybe this thread should be a sticker one?! I think people joining in could get to this info more easilly if it was a sticker.

lizz4m 08-31-2012 07:16 PM

concussion
 
I am looking for help for my son. He has such an array of symptoms. Is there any assistance for him. He is 19. He had 5 concussions in 14 months. 2 bad ones. The first an accident at school and the last one was a car accident.
He was diagnosed a variety of different mental disorders. Please, is there anything to help him?

Damodar 09-01-2012 02:49 PM

Quote:

Originally Posted by lizz4m (Post 910662)
I am looking for help for my son. He has such an array of symptoms. Is there any assistance for him. He is 19. He had 5 concussions in 14 months. 2 bad ones. The first an accident at school and the last one was a car accident.
He was diagnosed a variety of different mental disorders. Please, is there anything to help him?

I am taking sevral herbs althogh some might be suspicious about it. I heard large dose of fish oil can help, just started. But I would recomend Brahmi (Bacopa Monnieri) for mental problems, it is unexpnsive and widely used in Ayurveda for mental problems and improving memory. Many years ago my EEG became normal for first time in my life after taking it... previously I was diagonesd with epilepsy, although never had an epileptic fit, doctors ar sometimes amazing. There is also one other product, Divya Medha Vati, just google it.... first it helped me a lot, I mean Brahmi,but I had another small concussion which added to previous, anyway, these herb, from my experinece, and what I heard, can make big difference.

Try to contact good homeopath. Try aslo acupuncture.... Important is avoid further injuries... and try to find natural way to treat his mental problems.... with minimum allopatic medicines.

Goods luck to you and your son.

Mark in Idaho 09-01-2012 07:04 PM

A double blind randomized study was done in Australia about Brahmi. The NIH has the results.

" The results show a significant effect of the Brahmi on a test for the retention of new information. Follow-up tests showed that the rate of learning was unaffected, suggesting that Brahmi decreases the rate of forgetting of newly acquired information. Tasks assessing attention, verbal and visual short-term memory and the retrieval of pre-experimental knowledge were unaffected. Questionnaire measures of everyday memory function and anxiety levels were also unaffected."

What this basically says is that if the subject can learn the new information, the later forgetting of this information is lessened by the use of Brahmi.

It sounds like its value is on long term memory functions but not immediate or short term memory functions. Most with PCS struggle with short term and immediate memory functions.

aliciaj 09-01-2012 09:02 PM

honestly this made me cry, thank you so much on behalf of everyone who read this and everyone who will read this!

aliciaj 09-01-2012 09:48 PM

Post- Concussion Syndrome
 
Hey everyone! I need help. I know that I haven't dealt with PCS as long as most people on here, which is only 4 months and a few weeks. But it is hard to think that this is ever going to get better. I am only 16 years old and I struggle everyday. I feel like I am not a normal kid and that my whole life revolves around my head and what I can and cannot handle. I feel like people don't understand because there is never any light shown on PCS. Most people think that you get a concussion and your better in a few weeks at the most. I know this, because I was one of those people. That is what is so hard for me. Knowing that I am in this by myself. The struggle is only felt by me. If anyone has any hope or advice, now would be a great time for me to hear it because I am not so sure how much more pain I can take.

(Broken Wings) 09-01-2012 10:44 PM

Mark, great post.

I am dealing with hubby's medical info and you are so right on the nose with your advice, you need a great big THANK YOU FOR SHARING award!!! :hug:


QUOTE=Mark in Idaho;723686]I take exception to Marilee's recommendation of getting to a neurologist. While this may sound like the logical thing to do, Marilee was very fortunate to find a neurologist who has some level of understanding of Post Concussion Syndrome.

I have been seen by many neurologists. Only 2 out of at least 12 or 15 had a decent understanding of concussion. The wrong neurologist can start a medical record that can follow your quest for help and get in the way of future help. The riskiest neurologist in my opinion, is the one who works in a large multi-specialty group practice or HMO.

I am talking of the clinics of group that share access to medical records. If the family practice and ob/gyn and neurologist, etc. all have access to your complete records, the wrong label or diagnosis can block you access to further care.

In my case, one doctor diagnosed my as somatoform disorder. This can mean three different things. His symptoms are unexplainable, his symptoms are likely made up (psycho-somatic or hypochondriac) or we recognize his symptoms but can not reach a definitive diagnosis. The first two can leave you in limbo land or worse. The last can hopefully leave a chance at further diagnostic work.

After one doctor in my HMO diagnosed me as somatoform, my access to further help shut down. I spent my own money to get further diagnostic work but even then, my health care company (HMO) refused to even consider my private doctor's diagnosis.

So, if your are going to see a neurologist, get a referral to a neuro who has a true understanding of concussion. This will be a difficult but important task. If litigation is involved, do not do this wiithout the advice of your attorney.

My recommendation for early on is to learn to recognize your symptoms. The TBI Guide is a good startat helping you understand them. Telling a doctor that you don't feel right or feel dizzy or confused is too subjective. If you can better define the specific symptoms (but not in medical terms), the doctors can put a better picture together. Using medical terms creates a risk of being rejected by doctors who do not like patients doing self-diagnosis. The modern term for this is cyber-chondriac.

Instead, say:

I get stuck trying to find a simple word. I might know what I want to say but can't get the word to my lips. This has never happened to me before as often as it happens now.

The bright lights overwhelm me.

The voice of multiple people talking at the same time causes me to become disoriented.

If I try to watch TV, I can not pick out the dialogue from the common noises in the house like the heater fan, etc.

Try to define any specific situations where your symptoms get worse. Morning, at the mall, after trying to read, etc.

It also helps if you can bring a family member with you to explain what they observe. They can also take notes for later reference.

And, DO NOT SOUND LIKE YOU ARE WHINING or grumbling. A journal can help take the whine out of your presentation of symptoms to the doctor.[/QUOTE]

Concussed Scientist 04-12-2013 11:24 AM

Don't be afraid to medicate
 
Back to the original idea of the thread (things you wish that you'd known, which might possibly help others who have just had a concussion):

I am now taking pregabalin (Lyrica) - 100 mg a mealtimes (three times a day) and 150 mg before bed. That seems to work well and I am feeling a lot better on it, mainly greatly reduced pain.

I wish that I had been prescribed more medication initially. Of course, you can't just get whatever you want over the counter. You have to rely on the doctors and someone newly concussed isn't in the best place to know what to ask for. However, I do think that if I had started taking something earlier then it might have been easier to get through a really horrible period and cope with a lot of pain.

You have to get to know what works for you, how much to take etc.. That all takes time; years in my case. I haven't found much relief from over-the-counter medication, ibuprofen, aspirin, acetaminophen (paracetamol) etc.. I have found that only daily medication for a period had any effect. Just taking a couple of aspirin seems to do nothing at all.

There can be a problem regarding over-use and side-effects. With amitriptyline I found that there were some side-effects but once you have been on it for a period of time it is really difficult to come off. I have had to cut down by 2.5 mg at a time and then stay on the new dose for a while. I have reached a dose of only 2.5 mg a day now, but that is after a year of gradually reducing the dose. I think that this drug is known for this difficulty, so I would recommend consulting a doctor before reducing the dose.

It is a real drag being dependent on medication but for me it is worth it for the beneficial effects of the drugs, pregabalin for me (I think that the effects should be very similar to that of gabapentin, which I have not tried, because the two drugs have the same target). Somebody else might do better with a different drug. I hope that something works for you.

CS

So,

todayistomorrow 04-12-2013 11:29 AM

For people with post concussion symptoms over a month, the first Dr. appointment you should make is with a neuroopthamologist that can prescribe tinted/prism glasses. I would've saved myself a year of suffering if someone had told me this right away. Instead, I bounced around from neurologist to physical therapist to chiropractor and spent thousands of $ when the issue all along was my convergence insufficiency.

My eyesight was fine so I never thought about getting it checked but the way my eye muscles work and team together was messed up big time.

There is a reason that when Hillary Clinton got a concussion she was seen wearing these prism glasses. People well off get the health care they need right away but it's up to the rest of us to figure it out on our own.


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