3 years ago i was the victim of a crime I had a serious injury to my head (tbi) since then I get really bad headaches when I’m active everytime I bend over or strain even if I get too hot they last for about 5 minutes but they are extremely painful iv tried alot of different medications to try an fix the problem with no luck I’m to the point now where I except I will have to live like this the rest of my life… but until recently I haven’t really considered trying to better my mental situation my problems are I find myself not wanting to do anything anymore I have no motivation I forget things (appointments meds ect) I have a hard time staying focused on what I’m doing it’s hard to absorb an process the things people tell me, learning new things, its hard to get my words out sometimes… that’s not all but as I write this I’m noticing I don’t want to finish even tho I know there’s more I can name if I sit here longer an think it’s really frustrating haveing to live like this I have a regular neurologist I see but I would like a second opinion
Hey Jeremy,
For a start, Welcome. Lots of good people round here with lots of good info.
From my experience with medications there is a fine line between managing pain and being so intoxicated I can’t function, let alone think clearly. I have trialled all sorts of meds from the obvious painkillers to heart meds to psych meds to anti epilepsy to migraine meds, even botox. And for some people, depending on the cause, the damage and the mindset these meds have been of benefit for them, just not much benefit to me. Now for me its all just a case of pain management.
Previously I was working, productive and motivated. Well, that’s all gone. I can’t work, I’m non productive and my motivation is next to nil. To say I hate it is a massive understatement. This isn’t me, this isn’t the life plan I had, but this is where I am at and now I have to manage it all the best way I can.
The mental side of any brain injury can be huge. For some people the injury can mean that they have very little self awareness, this can, in some ways help with the acceptance. But for those of us who are aware of our previous abilities and now lack of ability, it can be soul destroying. Some days my acceptance of my situation is OK, other days I fight against it. I know full well that this is about as good as it’s going to get, but I still don’t want to accept it. To be honest, who on earth would want to accept this? Not I, that’s for damn sure.
I can tell you your frustration is not unusual, in fact, I’d say it’s normal, it certainly is for me anyway. As I’ve recommended to others before, get a second opinion (even a third, fourth and fifth opinion) I’ve seen many neurologists, neurosurgeons and therapists. And they all have differing opinions. What I have tried to do is to exhaust all of my options. If someone has suggested another option I’ve tried it, everything from medical to alternative therapies like relaxation, acupuncture, hydrotherapy, manipulative physio etc. You never know someone may just have the key to relieve your suffering. If someone told me standing on one leg screaming at the moon would help, I’d give it a go, anything that would help I’d try.
Just know that you are not alone in all of this and although some dr’s think they know it all, they don’t. Come talk to the people who are in a similar situation to yourself, we don’t have ALL of the answers, but we do understand and not an understanding from a book but from our own personal experiences.
Merl
I been trying to get on disability i did drywall/construction my whole life but with my head aches it makes it impossible since there’s alot of lifting and bending my dr has tried alot of different meds with no change but now I’m to the point where I feel like I’m just his guinea pig with all these pills… the drugs he tried to give me are scary one pills side effect could be death another pill was to try an actually shrink my brain to release pressure and I refuse to take something like that and the thought of trying to even get a lawyer and have to answer his questions honestly intimidates me just thinking about it makes my stomach hurt idk what to doi made an appointment to see my neurosurgeon to hopefully get sent to a neurophysiologist to hopefully figure something out so i can hopefully see a difference in feeling like a stupid blob all day it’s alot to deal with by yourself on top of haveing bad memory, poor focus, no energy ect I think I will take your advice tho an look into another dr for a second opinion thanks for the reply
I’ve tried all sorts of meds, I have enough pills here of every colour and creed to start my own chemist. Some space me out so badly, some block me up so badly, some mess with my mind real badly. It’s all bad. Then the damn dr’s give me another pill to counteract the side effects of the other pill, which in turn has its own side effects. Like WTF.
Now I manage all of this for me, not them. Sure I still take an opiate to control (not eradicate) my pain, but at way lesser dosages. I could eradicate it, but be so ‘stoned’, so blocked up and even more mentally screwed to the point I can’t even function. Ahh, no, like I say “…I manage all of this for me, not them…” I go to their appointments and go " yes sir, no sir" at all the right times, then go home and manage all of this for me, not them.
I have not recently refused any of their suggestions. I have in the past and this has comeback to bite me, being labelled a “Non compliant patient” which resulted in all treatment withdrawn because I would not take their recommended advise (even though I believed the treatment recommended to be of detriment to me.) So please be careful, if they suggest a course of treatment you’re not sure about, don’t reject it outright. Tell them to write it down for you to investigate. Then go online and look it up. Just remember that no 2 injuries are exactly the same and how a certain treatment affects one person may have the opposite effect on another and so your personal reactions maybe different to others too. But if you have 10 people saying “It doesn’t work” take their advise into account, some dr’s make out they have the ‘miracle cure’ and sure for some people it may well be, but that doesn’t mean its ‘your’ miracle cure.
An example of this is Botox. I was told by a dr that it was the cure, the new wonder drug. So I pinned all my hopes on it, but sadly for me, it was not the wonder drug. The dr was less than impressed when I told him and he told me I had exhausted all of his treatment options. ‘Good bye’ and kicked me out of his office.TSK. But, he could not say that I rejected treatment outright and this was one of the reports I used to obtain disability. At the very least it showed I had tried an ‘alternative treatment’. If they can say you haven’t tried treatment ‘X’, then that treatment may still be an option. But if you can show you have exhausted every avenue open to you, you’ve tried and that can help with disability.
Hope it helps
Merl
Thank you for your reply i forgot to mention the dr wants me to get a spinal tap but I don’t like the idea of it can I get out of this test dummies stage an still get disability
Can you get out of the test dummie stage? IMO, nope. Well at least not without someone giving you a concrete diagnosis. If you can get a decent diagnosis that you can use as evidence then no further testing would be needed, then you can say “Here’s a cause”. Until you have a cause/diagnosis every dr who thinks or believes it has another cause is going to be sending you off for every test or scan or investigation they can think of. Until you get a report with a firm idea of the cause, you are going to have issues. If you go looking through the older posts here, in some cases, when dr’s have been unable to obtain clinical answers the symptoms have been labelled as ‘psychosomatic’ or ‘idiopathic’. So instead of a dr admitting they have no idea, they end up blaming the patient. Patient blaming is very common, by doing so the dr saves his reputation but tarnishes yours. You could try a second opinion, but there’s nothing to say that the 2nd dr won’t come up with the same treatment options.
I agree, even the idea of a spinal tap makes me sick to my stomach but, as I say, if you reject the advise they are highly likely to reject your claim. You may be able to find another dr who is willing to send you for every other test, short of a spinal tap, but, if after all of those tests and examinations they still can’t give you the answers they (and you) want, a spinal tap may be the last test option, then you really will have no choice but to have the procedure.
Merl
I say test dummies because he’s guessing treatments an I have to suffer from the side effects of these pills it could be immediate or when I’m 50 my dick falls off or something I don’t want to gamble what’s left of my life so this dr can experiment on me this ain’t right
I TOTALLY agree. You call it “test dummies” I call it being “a guinea pig”. They all play the guessing game. I’ve found it’s a case of elimination rather than a confirmed diagnosis. For example they do a test, if the test is negative then that eliminates a specific condition, so they send you for another test. This can continue until they can give a firm, concrete diagnosis. When they can’t give that diagnosis the labels of psychosomatic or idiopathic come into play. “Ohh there’s nothing wrong, it’s all in your head…” (as if I don’t know it’s in my head, but they mean psych and not physical) Why they simply can’t admit that often they don’t know annoys the daylights out of me. I have queried the dr’s previously on why they don’t know and whether a procedure had resulted in an adverse effect. I had a rather heated conversation with a neuro where I was accused of trying to obtain information to sue them, like WTF, I’m looking for answers, not money. They WILL NOT admit fault.
I had a nasty reaction to a dye they used during a scan, when I informed them of this I was told this was highly unlikely. But when I got home and investigated about the dye I found reactions to the substance was in fact actually quite common, no one wanted to admit to this at the time. This is why I say “Tell them to write it down for you to investigate” for yourself. As the saying goes “forewarned is forearmed”. Again, like I say, see if they can send you for every/any other tests before the tests that concern you. Those other tests may show an issue prior to the need for the lumber puncture. They may say that even after every other test you still need the procedure but at least you would have exhausted every other avenue open to you.
Merl
I would keep appealing for disability, two of my friends got disability for depression so I would think you should definitely be able to get approved. I don’t know how old you are but I will say now that I am getting older my balance is pretty bad. I had been roofing most of my life and its to risky for sure now. So you may definitely need disability as you get older. Good luck bud