Hi, I have a question about Elavil: Many of you talked highly about taking Elavil and in case of PCSMom, it even worked well for her daughter. Someone talked about Effexor. Here in the US, some doctor told me to take Lexapro for the PCS Migraine. My own Neurologist tried to give me Lyrica. I have not taken either one bec. I read about Lyrica's side effects and am scared of them. Does anyone have any experience taking Lexapro or Lyrica for PCS headache? I am looking forward to hear your experience and thoughts on Lexapro or Lyrica vs. Elavil Vs. Effexor. Thank you so much in advance! Margie

Effexor and Lexapro are anti-depresants of the SSRI variety. Lyrica is an anti-convulsant for epilepsy and also used to treat nerve pain. Elavil is a tri-cyclic anti-depressant that also can help with the migraines. PCS patients have had success with small doses (10 mg) of Elavil.

The SSRI's take about two weeks to get therapeutic. They also have withdrawal problems.

The Lyrica would be prescribed as Off Label, not what is was approved for.

The Elavil would probably be the best one to try.

You might first see if you can get referred to a Rehabilitation Medicine or Physical Medicine doctor who has experience with PCS and MTBI. Most neurologists are not so great at PCS and MTBI. Look in the phone book under physician, Rehab Medicine or Physical Medicine.

New York University Medical Center has a good MTBI department.

Also, check with Brain Injury Association New Jersey at www.BIANJ.ORG or call their help line at 800-669-4323.

Do not take NO for an answer. Make a stink if you have too. You can always blame it on your PCS. It can be very frustrating getting good PCS help.

My best to you as you reach out for help.

Dear Mark,

I THANK YOU SOOOOO MUCH for your very kind and thorough response to all my questions about my PCS!!! Also Thank you so much for giving me directions where to re-start my healing process by searching for a good and helpful Doctor and therapies in the right directions! I have lost the whole year not knowing where to go, so frustrated with my neurologist not knowing how to help me, giving me very strong anti-inflammatory drug that now hurts my stomach and the GP who has no clue what is wrong with me. Oh my God, reading helps from you and LUCY (Lynlee) on this forum, I wanted to cry for the past 3 days! Why didn't I know to look up for this web site before? Well, now I found you All and this forum (better late than never), I thank God and thank you ALL for ALL YOUR KIND and WONDERFUL share of experiences and advice. I will start my searching for the right help TODAY. I will start with NYU's MTBI department.

How can I THANK YOU enough? THANK YOU also for your best wishes because I SOOOO NEED THEM!!!! And Best of luck to you too Mark!

VERY GRATEFUL MARGIE

Hi, I didn't get any decent help until I found a GP that understood head injury.

I hit my head 2x within 6 weeks in 2001. I kept trying to work full time as the A&E doctor kept telling me "that he knew about people like me because I used to work for an insurance company" . I thought I was going crazy and in the end my employer spoke to a friend of his who had been a doctor in the local hospital head injury unit - who then arranged for me to see Dorothy Gronwell - you will find reference to her in other threads. Dorothy then tested me and put me in touch with the local Brain Injury Assn who then referred me to my current GP - who has been wonderful as he had PCS from playing rugby when he was at Uni.

Our Accident Compensation system takes over payment and arranges your recovery - supposedly. I have learnt that if you don't like what you are told keep looking for another specialist even if you have to fund it yourself. I was constantly being told that I was achieving great results in the psych testing and therefore there was nothing wrong. The hardest part to cope with is not being able to see any physical evidence of injury when you know that your brain is not functioning as it should be and was.

I went to Australia for my QEEG which does show evidence, but unfortunately the report is not rated here!!!! I now have a psychiatrist who I trust - Dorothy Gronwell died several years ago - I was able to trust her, but the psychologists that I have been sent to have been down right rude and have even asked why I know so much about head injury - can you imagine!!!

Really all I am now wanting is to be able to stay awake all day - to be rid of the tiredness - I think that I could cope with the rest of it. You also need to retain your sense of humour - I sure find some strange things in the refridgerator!

So you will need to be pushy even stroppy in finding the specialist that you can trust who has knowledge of head injury. If you can find the right one they can probably recommend other specialists who can help you. You will notice that the best usually only deal with the best.

I am now taking the following:

Efexor 3x 75mg (for depression)
Hyzaar 1x 12.5mg (for blood pressure - as it has gone crazy post accident)
Nortriptyine 3x 10mg (for relaxing muscles at night)
Zopiclone 1x 7.5 (for sleeping - as can stay awake for days)

I have also come across res-v plus - a dietary supplement - have a look at www.abouthealth.co.nz. I have taken these for about 10 days and am thinking that I MIGHT be feeling a little more energy- the main ingredient is resveratrol.

Good luck and let us know how you get on!

Lynlee

Dear Lynlee,
THANK YOU SOOOO MUCH for providing me more information on PCS, the meds (which I will bring up to my neurologist in my next visit with him) and share with me more of your experience that are so similar to mine, as if I am the one who write them!!! It is very comforting for me to find out this whole host of communities suffering this most unfortunate health issue like me! I empathize with you and Mark SO MUCH for your sufferings as well! I WISH YOU MUCH continued success in your recovery as well Lynlee!

You are so right, a lot of time people think I am crazy too when I described to them my sufferings and symptoms, especially my gp, who is rude, narrow minded, short temper with me and always downplay my health complaints/symptoms (unfortunately I have not been able to find anyone to replace him yet, but I am continuing my search). He gave me the feeling that I made things up or I don't know how I feel! My neurologist seemed frustrated with me at times, especially when he could not explain to me why i feel so much pain on one side of my head and then it switched to the other side on another bad day!!! A second neurologist told me it's migraine and told me to go back to my gp to ask for prescription of Lexapro, but I have not done that since I am still having other symptoms that were not explained.

In terms of searching for a right doctor, just like Mark in Idaho had warned me, it has been frustrating for me to find a doctor who has experience with PCS around where I live. In the past 2 days, I called NYU HOsp, NY Columbia Presbyterian Hosp, BIANJ.org, and was given a few names, but when I called to inquire about their specialization in head injury or PCS, it was not much. Even funnier in one case, the woman gave me the name of a supposedly neurologist, but it was a lawyer instead (there is no such neurologist by that name at that location!) Isn't that funny? BUT I will continue my search as you and Mark in Idaho encourage and advise me, I won't stop my search.

But currently, I am still quite miserable with my latest relapse that occurred 7 days ago as I mentioned in an earlier posting (after the violent coughing), I can ONLY lie down and do nothing to feel ok! Any movement that affects the head, from physical moving gently (the head) from one side to another, or a gentle nod or a gentle shake, or talk a little, even a short sentence, or a thinking or a frustration feeling, or writing this note with intensity and anxiety, then come pain in the head, then dizziness and nausea, down to the eyes, including the 24/7 ringing in the head getting a little louder. A simple movement of head from left to right or vice versa (very small degree) even while resting on the pillow caused dizziness! I just took a few seconds rest, sit very still, leave eyeball resting, then feel better and can continue writing, isn't that weird? I never had a relapse this bad before ... I wondered if I have concussed myself again by that violent cough, or whether I had created a minor tear in blood vessels in the brain causing a slow subdural bleeding(?) I have been refraining myself from asking my current neurologist to send me for another CT scan although I am very tempting to do.

I will certainly keep you all posted with any new development in my recovery searching effort that I will have. Again, I feel so comforted by you and Mark in Idaho, for consoling me and giving me very very very valuable advice and directions to follow. I cannot express enough my appreciation and gratefulness to you... Will keep you posted again soon. Please take care and have a great day meanwhile Lynlee ! margie

Margie,
Mark gave you wonderful advice.


You don't say if you have a ride or not.
Can you get to Philly? There are trains.. These hospitals can give you advice!
(I have a friend up by you, who has MS, she comes down to my doctor, because there simply Are None up there!)

If you can, get someone to drive you, call either Jefferson,
1.800.JEFF.NOW

http://www.jeffersonhospital.org/

Or,

University of Pennsylvania..
1.800.789.PENN

http://pennhealth.com/hup/


A Good University Hospital is you best bet. They have all the latest diagnostic equipment, THE BEST DOCTORS, etc.

Be sure to find the best doctor you can. Explain your circumstances.
Like Mark said,
Make Noise!
Get where you need to go.
Stop fooling around with country doctors!

This is your Brain!

Hope this helps.

Pete
Asb

Margie,
here's some more links.

This is U Of Penn's brain injury link:

http://pennhealth.com/neuro/services/brain_injury.html


This is Jefferson's.

http://content.jeffersonhospital.org...?pageid=P00785


I don't know anything about your insurance, or situation.
But, see if you can get a ride to a hospital like this!


Pete
Asb

Dear Pete,
THANK YOU SOOOO MUCH for these very uplifting leads!!! Sounds great to me. I will start looking into these links and call up these hospitals asap! Hopefully I can get there soon! (I can get to Philly by train or get someone to drive me no problem.) I thank you sooooo much again for your prompt help! I like your term "country doctors", that is exactly my impression of these doctors where I live. I will certainly keep you all posted with any new development. Thank you very much again Pete. Best regards, Margie

hi all

thought I would tack this on here as its came up on another thead
at headway a brain injury support charity I attend we do one hour of tai chi in the sitting position as many of us have mobility problems I think it can help on many levels spacial awareness being one ,but also if like me and with more severe injury you can loss your ability to follow sequences it can help with this also if headway think it of use it may well be useful

http://www.chebucto.ns.ca/Philosophy/Taichi/what.html

Hi I am new to this site,

actually the only reason I signed up is because i saw your thread. Im not sure if it has been mentioned here before as I said I am new but I have been getting neurofeedback treatment for my PCS and it has been working. It takes a few sessions but after about ten or twenty you should start to feel much better. I had a mild case of PCS after a wakeboarding accident and it has helped me overcome most of the symptoms. The therapy is called EEG Neurofeedback. I was just skimming through the pages and saw your thread and thaught you needed to know about this treatment.

Good luck

Peter