Brain Injury Support Group
Traumatic brain injury occurs when a sudden trauma causes brain damage. TBI can result from a closed head injury or a penetrating head injury. Symptoms of a TBI can be mild, moderate, or severe, depending on the extent of the damage to the brain. Outcome can be anything from complete recovery to permanent disability or death. A coma can also affect a child's brain.
Hi everybody, I've posted on Daily Strength before, but only in the pituitary section. I have not suffered a TBI myself but our son did when he was seven, and he committed suicide 18 months ago at the age of 31. We discovered after his death that he had never managed to consummate his four-year relationship with his girlfriend and we think he probably suffered damage to his pituitary gland which affected his sexuality and caused depression. We found a mass of research showing that head injury can have this effect (google 'brain injury' and 'endocrine dysfunction' or 'hypopituitarism' to check it out)
We are updating our website http://www.headinjuryhypo.org.uk which is about this problem. We'd like to make the website more personal by including stories of people who've had a head injury and are suffering from pituitary problems. If possible we'd like a few stories with happy endings but we welcome everybody's. Even mild head injury can cause hypopituitarism, though you are more likely to be affected after moderate to severe injury. Symptoms don't necessarily occur straight away, they can appear a long time after the injury as we think they did with our son.
We're hoping that if Daily Strength members can share their stories, it will mean that anyone surfing the net for help with sexual problems, infertility or depression, or uncontrollable weight gain, who have never connected these things with a past head injury, may come across our website and read stories that will make them think "This is me!" Then perhaps they will get themselves checked out by an endocrinologist and their lives will be turned round. Hypopituitarism is treatable because the missing hormones - whether growth, sex or stress hormones - can be replaced.
So if you have a story that you are ready to share, I would love to hear from you and we will publish it on the website.
I've been trying hard for the last eighteen months to make sure this problem is more widely recognized and I'd be grateful to hear any ideas. Consultants are helpful and some hospitals have changed their protocols, but the response from government organisations and charities has been disappointing.
We are updating our website http://www.headinjuryhypo.org.uk which is about this problem. We'd like to make the website more personal by including stories of people who've had a head injury and are suffering from pituitary problems. If possible we'd like a few stories with happy endings but we welcome everybody's. Even mild head injury can cause hypopituitarism, though you are more likely to be affected after moderate to severe injury. Symptoms don't necessarily occur straight away, they can appear a long time after the injury as we think they did with our son.
We're hoping that if Daily Strength members can share their stories, it will mean that anyone surfing the net for help with sexual problems, infertility or depression, or uncontrollable weight gain, who have never connected these things with a past head injury, may come across our website and read stories that will make them think "This is me!" Then perhaps they will get themselves checked out by an endocrinologist and their lives will be turned round. Hypopituitarism is treatable because the missing hormones - whether growth, sex or stress hormones - can be replaced.
So if you have a story that you are ready to share, I would love to hear from you and we will publish it on the website.
I've been trying hard for the last eighteen months to make sure this problem is more widely recognized and I'd be grateful to hear any ideas. Consultants are helpful and some hospitals have changed their protocols, but the response from government organisations and charities has been disappointing.
Tom B. aka Ihman
Depression is a very common problem with TBI folks. I am lucky enough that I recognized mine and that I knew I needed help. I started with a pyschaitrist 2 weeks ago. I have been put on meds. And Today I met with a licensed social worker (therapist) to begin some talk therapy. I am going to be getting Cognitive Behavioral Therapy. Google it! It covers lots of aspects of mental health.
As for the pituitary, I have no idea. I am also finally just going to start seeing a primary care doctor and not just a brain surgeon. I will ask them about the pituitary.
You may be here to look for help, but you just helped me by posting this. Thank you so so so much!!!!
Kara
You're right that this is helpful for us TBIers,too because I didn't realize that the pituitarty gland can be affected by a TBI.
Tom B. aka Ihman
Tom B. aka Ihman
I didn't understand it when they told my husband & I both that sex may be either nonexistant or over loaded...can't get enough. He never explained the cause, so...from what I've read here...yes, I've been affected, but not as your son was. It went the other way...and we are still in the process of running tests to see what has been affected and if it does need correction.
I am sorry I can't offer any other information at this time.
Tom B. aka Ihman
IhMan, Tom, thanks for your point that head injury often causes depression and it doesnt necessarily mean the pituitary is damaged. Yes I agree, and Ive read three research papers highlighting the issue (Simpson and Tate, Teasdale and Engberg, and Lori Wasserman) which claim your risk of committing suicide is tripled or quadrupled after head injury. I know this isnt exactly cheery news, but I think its good for families and friends to know this, so that they take the TBIers depression seriously and dont think its somehow the persons own fault. I so much wish wed known this before our sons death. Anyway re hypopituitarism growth hormone deficiency is common after brain injury, and there are reports that replacement therapy improves quality of life and energy levels and lifts depression, so if you had swelling from your concussion it could be worth getting your IGF-1 levels checked. Im saying all these things without backing them up with references, but Ill gladly send you the links if you want.
Karaoops, Im so glad you recognized your depression and got help. Ive heard the cognitive behavioural therapy is effective and I hope it works. It was so kind to say my posting helped. I was interested that you said you had DI in hospital, because this happens when the more protected, posterior, part of the pituitary is damaged, and can be a sign sometimes that theres been damage also to the anterior pituitary, which is a fragile stalk-like structure and isnt protected by bone. So what I said to Tom about growth hormone may apply to you too, and you may get treatment that helps your recovery, I do hope so. Remember Im not a doctor though!
Michaelgb, I am so very sorry about your daughter, I cant imagine how you and your family coped with such a terrible blow. Its excellent news that all her hormone deficiencies recovered except the DI, and even with that she is down from 8 pills a day to one. It is very encouraging, and a tribute to how wonderful the body can be at healing itself. Id love to put your story on our website if you are happy for me to. I hope shes recovered equally wonderfully in all the other respects too.
08sporty, thank you, it is good that you were warned about the risk of an overactive or underactive sex life patients usually dont get warned in the UK, the standard hospital discharge letter doesnt mention it. I hope the tests youre running turn up with something that gets you back to normal. I would be so interested to know how the story develops.
Wallacesmom, you and your son and your circle must all be going through such a dreadful time and I am so sorry. At least it sounds good that hes not diagnosed vegetative any more and I hope the coming months may bring improvement. I think your sons ravenous appetite could be linked to pituitary damage. If you go to www.pituitary.org.uk they have a section on pituitary and hypothalamic damage and eating problems, under the heading Why do diseases of the pituitary and hypothalamus lead to weight gain? http://www.pituitary.org.uk/content/view/166/185/ The article says diagnosis of hypothalamic disease can sometimes be confirmed by MRI scan. You mentioned about the erections, but this doesnt rule pituitary damage out. The pituitary makes a variety of hormones and damage can cause deficiency in just one, leaving the others OK.
Well, thats enough for now, Id just like to thank you all again, and say Ill keep looking at the thread this time and not rely on alerts!
Tom B. aka Ihman
Joanna (Caroline is a pen name)
Tom B. aka Ihman