I Need Your Help Everyone
 

the gabapentin is not working 300/day, i broke down crying really hard just now...i feel i will die from this condition the headaches are destroying me...my young son saw the whole thing, i truly believe i will not make it...what do i do? I dont want to die, not now...i have a family...please i need ur help!

ED

Hi Ed
 

I am sorry you hurt like you do. I am glad you reached out. It is so easy to get despondent when physically you are having a ruff time . Maybe it is time to seek your doctor, and really let him know what is happening to you. Don't give up. Go to the ER if you have to. TBI can and does get better in time. So many here on NT say that symptoms do get better. I know what it is like to come unglued. Sometimes the medical conditions we suffer, get the better of us. I think it is mind over matter. Do some good thing each and every day. One thing you like, a moment, a prayer, reading a book. Something that makes your day better. Focus minute to minute if you have to. Your child needs you, You need you. Find the direction you must to make your life better. Do seek help if you need it Ed, and know that you are not alone. Mark From Idaho, is a TBI injured person here, and very very knowledgeable about this condition. don't hesitate to contact him. He may have useful information to help you. I have watched his posts for several years now, and he usually can find something that may get you on a better track. I will be here to talk to. I do care, and I will keep you in my thoughts and prayers. ginnie

Ed,

Calm down and know that things are going to be okay. Being as upset as you are is not going to help you, and you must trust that it will be better if you try to calm down. Do whatever you need to do to make sure you can rest tonight. Tomorrow is a new day and you will find new strength to work on this a little bit more after rest. Each day will get a little better to deal with if you take it slowly, working on something each day little by little. Tonight your task is to calm down and rest. This will take time, a lot of time, but you have the mind and will power to do it but you have to break it down little by little.

As Mark said Gabapentin at 300 mg is not much. It is how much I take. My neurologist thought that it would not be enough and she told me to double the dose if it didn't work. Did yours tell you that? Can you double it or can your wife or son call your doctor on call to see? Is there anything else you can do to calm your nerves right now? If there is, do it or ask for it.

E
 

Ed,

I'm living that life right now.

I've been diagnosed with cervogenic headaches, vestibular migraines, and occipital neuralgia.

I've been on topamax, had two rounds of nerve blocks, and am on keppra now.

Topamax didn't work, nerve blocks lasted 4-6 weeks each time. Keppra, I don't think it's working.

I am the most pain free today than I have been in mooonnnttthhhssss. Yesterday I felt the same as you. My shooting pains are getting worse as the night goes on.

I use rubbing alcohol and water ice packs triple bagged. Heat does not work for me. I sleep when my brain tells me to. I also see a PT for my neck.

Tom. I see a pain management dr. I can't wait. Everyday is a headache, it's levels shoot up and down. I've had dark thoughts and its scary. Head pain is unlike any other pain because we use our mind to think. I don't have an answer but I can relate and I hear you. I'll post what the doc says tom.

Get to a doctor ASAP. Keep us informed.

Peace and healing,

Jace

Ed...I was like that and feel so much better now. There is a time when it really is minute by minute. See each minute as success.
My children saw me break down. They saw me lying on the floor in a closet because it was the only quiet place in the house. Children are resilient! Mine are feeling so much better when they see me like I used to be.
You will get better. You have to believe that. I promise you will improve from where you are now. But unfortuneately it takes time, and no one can say how long. Be strong. You will be fine!!!!!! I am out of hell now. It took a long time but I am out.

Sending you lots of courage. Dig down deep inside yourself and find that core of strength that we all have. It is there.

Thank you for your support, I'm at work now better than yesterday, headache trying to come through again...I'm glad you all know how I feel...what can I say, I have to move forward, these are bumps in the long road ahead to recovery...just hope it will end soon, for my family sake.

Your friend and brother,

ED:hug:

Thank you Monkey your ur support, just wish I could close my eyes and fast forward 3 years from now in the hopes I will be in a better place. I'm trying my best, but when your not yourself and in constant pain it's so difficult and sometimes the thoughts come and you ask your self how can live this way, what type of life is this? Why did I not die that day?, I mean the pain Im in how its I am still alive? Just hope things get better...really do because its agony...it really is horrific.

Your friend and brother:

ED :hug:

thank you for your support Vanilla, today is new day and I hope its better than yesterday...really do. Yesterday was a scary day really thought it was over...just hate all of it!

My doctor had mention to wait a couple of weeks until the gabapentin gets into my system, than increase to 600 mg/day. I been many times to ER when this are at there worst, they wont to MRI unless ur actually dieing and the doc's just send me off with a new prescription and tell me it takes time and nothing they can do:confused:...I tried of taking trips to the ER, just so tired of it.

Thank you again really appreciate it.

Your friend and brother;

ED:hug:

Hi ED, I notice that of all the test you have had done, you have not gotten your vision checked. This is one of the more important test as vision problems can be big factor in headaches. Go to someone that can test for convergence insufficiency. My vision is 20/20 so I never suspected my vision was messed up when in reality it was big time.

thanks for your advice, I forgotten to mention that, I have checked my vision... did a full extended exam..ALL OK.

Your friend and Brother;

ED:hug:

Patience
 

The road to recovery is slow for many of us. Stay calm and know that time will help. Do all you can to keep symptoms in check.
Su Seb

Hi Ed...glad you feel a bit better.

Two things:
Who checked your vision? (i.e what kimd of doctor? Imine was 20/20 when tested by me optometrist but my vision was completely whacked out and still is whentested bynpeople who know the brain (neuro-opthamologist, etc.)

Do you need to be at work right now? You sound as if you are in the acute phase still.

Hope gabapentin helps!
Take care, m

hey mokey, ur right i will ask for neurooptometrist, ya im at work i guess main reason is becuase worry of losing my job, and also i dont want to be home alone...i think ur right im still having profound symptoms and need more rest...i really hope things work out for my families sake. Please mokey if we can talk in person i can call u from work if thats ok?

ED

Hang in there!
 

Hi Ed,
I know exactly how you feel - and you have had a lot of good advice so far. The most difficult piece - at least for me - is that progress is not linear - you have some better days - and then right out of the blue - you can hardly make it out of bed. I am at the 10 month point right now and still have some days that you have described. Hang in there - hopefully you are seeing some better days.

Ginger, how and what happen with ur injury?
ED

Hi
 

Hi Ed,
Back in January I was exiting a friend's home through the garage - I missed the step, fell backwards and hit the back of my head on the cement floor.
Right now I just miss my old life - currently just having to stay at home because I cannot handle lots of brain stimulation. The bad days are really bad and so frustrating - you feel like you will never get better - the better days - well - I just wish they were a lot better.....
I sense panic in your posts - really - that does not help - but I know that is easier said than done.

Wow so sorry to hear that, I know how u feel I going through it...its hell.., were u unconscious or did you go to hospital? Doctors keep telling me to keep giving the medication a try and so I have and it has helped the symptoms, please ask your doctor for medication relief, whether it be for pain (gabapentin or lyrica), mood (zoloft, cymbalta) there are plenty of meds for variuos aliments..please look into it.

ED

Life gets better...I promise!
 

Hi Ed,

I see it's been awhile since your post and hope your head is feeling better.

Having celebrated my 6th TBI/PCS birthday I've experienced much over the years and I empathize with you greatly. Headaches, for me, have never gone away without medication. While I had migraines prior to my car accident (one every few months), they were nothing like the constant, debilitating headaches I've had since the accident. While the Dr's claim these are migraine due to symptoms, wow...completely different classification of pain for me. Regardless of the classification finding the right medication is life changing.

What I've learned -

• There is a delicate balance between medication, dosage levels, and side effects you can live with that alleviate the headache. It takes time, but worth it!
• You may feel like a guinea pig until you find the medication that works for you. Trial and error is part of the process - it sucks, but when you finally are headache free...man it's amazing...like going from a black & white world of pain to Technicolor wonder. You remember what joy is and Life is vibrant.
• Communication with your doctor is critical. I've had to call the Dr office to get an increase of my gabapentin several times.
• Depending on your insurance coverage the hospital isn't always a good solution. It cost me $1500 and did nothing but rush me through their pre-defined migraine treatment and slap a different prescription in my hand - this from a hospital specializing in brain injury too.
• Be careful if you change Dr's - I've had many change my gabapentin thinking another will work better or most recently removed ALL med's to see what I was like without "modern living through chemistry" and it set me back to step one. I hurt so badly I hit my lowest, darkest place crying on my son's shoulder.
• When you find what works for you - DO NOT let anyone change your medications.
• There are free migraine apps for iPhone and Android to track your headaches that allow you to input your meds, dosage, triggers, pain level that can be converted to a printable document for your doctor. They're a great tool.
• Note triggers after finding a Rx that works - when the barometric pressure drops I'm toast so while it's totally cool to know when it will rain or snow....I take Midrin those days to help.
• Find a doc that specializes in TBI/PCS headaches AND is the type you can communicate with to adjust meds over the phone. (I contacted Craig Hospital which is near me and specializes in TBI. While they don't do post-TBI, they referred me to my current doc who's a physiatrist specializing in TBI headaches. Not only does he get TBI he works with me knowing I'm an expert of my own body. Best doc I've seen to date.)
• Adding new med's can change how current ones work so note any changes and tell your doc.

After my many trials and terrible medication errors - I take gabapentin 300 mg twice/day and 600 mg at night. The medication makes me feel as if I've had a few drinks and I walk like I'm on a moving boat at times, but no headache. On break through days I add Midrin or 800 mg ibuprofen. Now I forget how bad the headaches were and I can live life feeling free.

I wish you well and am here if you have questions.

Kris