to sum it all up....
 

i honestly believe i would feel the exact same as i do right now if i had seen zero doctors since my concussion

i know i have been to atleast 50 doctors or therapy apptments throughout the last year and i feel as if not one has helped me out at all

my symptoms are all the exact same

if i would have to do it all again i would just save the money and time and just sit at home and wait it out i guess....

do yall feel the same way? i feel theres really nothing anyone can do...

Yeah, I see what your saying. I feel like I've wasted my time with all the doctor's I've seen. I don't necessarily regret seeing them, though, because for me it's been a learning experience. It taught me that head injuries are far misunderstood...and I now see what all the fuss has been about when it comes to health care.

I think I've got more help and information on this forum than I have anywhere else.

Im grateful for the amytriptaline which helps my headaches. I like my therapist because he specializes in head injuries. There are a few ive seen which wasted my time. Its seems to be driven by money and not compassion. Politics come first, patients last. Just saying.

Hi xxxcrystal - How has the amitrytiline helped with your headaches? do you still get them dailey are they just less intense or have they gone away or mostly away??? What dosage. I am taking 25mg at night. I bo believe they have helped with the intesity but still have daily headache more dull unless i do something mentally challenging or physical exertion - I know alot of people on the forum are using these meds but it helps to find out how the meds are actually reducing or elimnating the symptoms. Are you taking anything else? I was put on a med for st memory\alzheimer useage

i was on nortripyline for 2 months which i believe is similar to amitriptyline

it reduced the headaches for me but i still seemed to have a constant headache, just not as bad

crystal,

What does your therapist do that you like and find helpful?

What kind of therapist is he?

rick : I feel the same way. Besides wasting money frustration is the only left over. Any therapy helps only temporarily.

Im on 50 mg. I take at night. It has reduced my headaches. I still have them but not all day and not as bad. I like my psychotherpist because he is teaching me how to organize and tools for my short term memory issues. He also helps me cope. I'm having a hard time dealing with stress. I literally get jumbled and melt. Ive only had two sessions with him but he listens and has,worked with head trauma patients so he seems to understand.

I am glad to hear you are getting relief. I am not sure if you are working or not but how do you cope with or multi-tasking. My job requires me to be simultaneously working on several projects at a time and it is hard to manage this with PCS

I don't think seeing doctors is a total waste--at least knowledgeable ones. As one person noted, they can impart knowledge and give you some idea of what to expect. If they are good, they can give you some comfort.

Like the rest of you, my symptoms have not changed much in the past 6 months. I wake up wondering if I will ever get better. Given the attention concussions are getting in the media and sports, I wouldn't be surprised to see some major advances in the next five years. Let's hope that happens.

Im very grateful for my doctors and all they have done for me. From helping with all of my disability paperwork, to writing notes for my work, to emailing me back late on a Sunday night to help me through whatever issue I was dealing with. My Neurologist has always been caring, thorough, and honest with me. She even pulled me back out of work when i refused to stop working....when clearly i was a disaster and extremely sick. At the time i couldnt see that she was doing it because she cared. My primary doctor listens to every complaint and symptom and makes sure everything is addressed immediately. My therapist has helped me to sort through every emotion that comes with PCS such as depression, hopelessness, feeling worthless, anger, and grieving.

Today, I am 9 and a half months post injury. Im back to work for 3 weeks now and doing very well. I am happy, positive, energetic, and mostly symptom free. If i get a slight headache, its only a couple times a week and tylenol or fiorinal quickly fixes it. I'm off celexa, an antidepressant i once needed, but remain on the Nortriptyline at 80mg to keep my headaches away. Once i am back to work full time and remain symptom free, i will taper that dose as needed. There is a light at the end of the tunnel.

I am not saying doctors are total waste. Since each brain injury is unique and how one recovers depends on lots of factors and I blame it on my Karma. Besides TBI I also have IBS (Irritable Bowel Syndrome) which never bothered before TBI. With IBS alone people go on disability if it is severe.

My IBS got worse after I tried all the medicines. Now my stomach and brain are oversensitive for any med. Yes, some doctors are good and knows what it is. But for my condition they don't know what to do with me. They can only try what meds/therapies/treatment are available and I am unlucky nothing works for me. That is all.

I have had IBS due to a paralytic ileum ever since my injury in 2001. My physical therapist helps immensely by working on my upper back (TOS) and manually releasing a spastic ileal cecal valve. I can get terribly bloated, especially in the ascending and transverse colon. Finding a physical therapist who can help with this will be worth everything. The relief is amazing.

Thanks Mark. I mentioned this to few therapists and they don't have a clue. Also I have IBS-D and now nausea (after TBI). I take DICETEL (for many years) to control it and now doesn't work that effectively.

One strange thing is IBUPROFEN controls my nausea and even I get my smell back to a good level (I have Parosomia - olfactory dysfunction because of the bleeding I had in that area and frontal lobe).

When I tell this to Neurologist all he can come up with is don't take it regularly because of rebound headaches, bleeding in stomach etc., (yeah everyone knows it) . For me it works for my nausea, smell disorder and only some what for dull headaches.

Any ideas? Is there any active inflammation going on some where? Tried Prednisone (full course) and nasal steroid but didn't work at all.

Is there any effective or safe substitute for NSAID? Probably nothing that effective. Anyone using IBUPROFEN (or any NSAID) on a regular basis in this board?

This is what other problem when it comes to meds for me. I find something works but I cannot take it on a regular basis. (Other one is Xanax but I am glad I got out of it. Though I get tempted when my dizziness gets worse.).

Jinja,
No I am not working. I have a hard time with short term memory and it seems multitasking is too stressful. Im feeling better but I can't handle stress very well. I get angry very easily. yesterday I went hiking. It was a new place and I was with a group of people. It was too tough. I couldn't leave cause I didn't drive. Today im paying for it. Headache and nausau last night. Headache today..all day

I was taking Aleve and prescription-strength Naproxen pretty much daily for several months last spring for my back and leg pain. I had very easy bruising during that time and would bleed from stuff like flossing or brushing my teeth too hard. It did help my pain, but I was anxious to get off it because of the bleeding and bruising.

Hi pcs life,

I also have experience with ibuprofen. I took it from probably month 2 through a year and a half. It was the only thing that helped my headaches, well without the crazy s/e. I know that the severity of your headaches are similar to mine:(

But after the year and a half I got really bad stomach pains, heartburn and ulcers.I couldn't eat anything. I always took it with food. I had to stop and switch to tylenol extra strength usually twice maybe three times a day. I was always worried in the back of my head about those side effects but I would not be able to get out of bed without it. You will know when your stomach starts to not handle the ibuprofen.

A couple things I learned: Tylenol seemed to dull the pain a bit but did not work as well as the ibuprofen. Not even close. Also I read that tylenol causes more rebound headaches than ibuprofen. It would make me drowsy, however, which helped me get more rest. And generic tylenol does not work as well as the real stuff.

But I am worried about the liver damage thing too.

Since my reinjury, I am taking 400mg ibuprofen (am) and tramadol. I cut up my tramadol pill into 4 pieces. I take literally a sliver of a tramadol pill in the afternoon because the pain at night is bad.

I am just holding my breath until my stomach starts hurting again from the ibuprofen .And I am worried because I know that I can't stay on the tramadol forever b/c it is a narcotic.

I do notice that my stomach is a lot more sensitive since my injury. If I take a vitamin that is not a gel capsule it will come up.

September last year I got really bad food poisoning( campopylerbacter) and then got c diff from the antibiotics. I was pretty sick for about two months. I had to stop taking vitamins or eating solid foods for a while.

Generally for me I could not take other pills (besides ibuprofen) because of the other side effects, not stomach issues.

I'm kind of rambling, but i do understand about the ibuprofen. I have not found any other nsaid that helps. Oh yeah, did you ever try zofran for your nausea? The sublingual was great because it did not hurt my stomach.

postconcussion:

I am sorry to hear your struggles with stomach. I know about your struggles with PCS. Now we have to deal with both. Since most of the stuff goes to stomach first it can be very tough. I try to stick to sub lingual if available for anything.

Tylenol doesn't work for me at all for me. You have been on IBUPROFEN for long. I tried for a month twice a day and sure it helped. But my Neurologist wants me to quit but didn't offer anything else (guess nothing else is there). So I went to one a day and then completely quit and suffer now.

I didn't have any nausea at the beginning and one Neurologist put me on Amitryptiline which helped for my IBS but nothing for headaches, dizziness and made me very fatigued during the day. Other Neurologist told me to quit Amitryptiline too (my new Neurologist wants me to quit everything and wants me to suffer :) ) Each time I try to quit Amitryptiline I hit with Nausea. Yes it affected my stomach for good.

Like you other meds affects my stomach and gives me horrible side effects. Guess I am cornered when it comes to meds.

I am also rambling. It is very unfortunate you got re-injured.

Since nothing much can be done I am going to try my best to stop complaining and silently suffer but keep trying whatever I come across and also be compassionate to others sufferings.

rick92 : Sorry didn't mean to steal your thread.

I'm very glad for my doctors. Since I had a complex concussion with rare complications, if I *hadn't* seen a Dr. I'd be much worse than I was a year ago. My neurologist figured out my concussion caused iicp and ordered a procedure to end the cycle and I've been getting better ever since. I credit her with saving my life because of that!

She also referred me to a great speech therapist and that therapy helped me a great deal too, cognitively and with my speech.

My PCP and my neurologist are very good doctors and they understand PCS symptoms and patients even if they don't really understand a lot of the causes for it. They've both given me a lot of time listening to me and helping me to get better in many ways.

I'm very grateful that they are my doctors!! And I know from reading a lot of the posts here that I'm very lucky to have them.

how did your doctor find out you had iicp? what exactly is it and what are the symptoms? and what was the procedure to end it? just curious cause sure seems like somethings still wrong in my head... thanks

Doctors should be able to help us. There is actually quite a lot of good evidence out there about various lifestyle changes we can make which will help our brains to heal, and doctors should know about this. Most of it is referred to in those long posts Mark does when he welcomes new people to the board.

I'm sure some neurologists are up to date with this stuff but there seem to be a hell of a lot of them that have no more idea about head injury than your average layman, which given the amount of training they do and the amount of money they are paid is shocking.