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OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 10/21/2009 4:55 PM (GMT -7)   
First of all, I'm currently 17 years old and male. When I was 8 years old (Summer of 2000) I was hit by a baseball directly above my right eye; the blow caused a slight concussion and required stitches. Fast forward to 2005 - I began having severe headaches off and on. Up until that point, I had been healthy except for unexplainable stomach pains while I was in 6th grade (in hind sight were most likely abdominal migraine). After a few headaches, my pediatrician referred me to a neurologist to be examined - which quickly led to the diagnosis of migraine and began my journey of countless doctor visits and medications.

In the beginning, I had headaches maybe a couple times a month that never seemed to respond to conventional abortives like triptans and I would need to come in to the office for an infusion of benadryl, toradol, and reglan. Although I did not find out until later on, I have an extremely adverse reaction to phenothiazines (reglan, compazine, phenergan, etc.) called akathisia which left lasting mental side effects. The side effects were so severe I was afraid to let my parents know I had a migraine in fear of going back to the office for treatment (I originaly thought it was fear of the hospital, I didn't figure out the cause until much later after having had these drugs pumped into me time and again). As the frequency increased, I was put on my first preventive medication - Nortriptyline. None of the preventive or abortive medications tried by my neurologist had any noticeable effect and through the next 2 years, I bounced around from drug to drug.

I've always been a good student, participating in honors and AP classes and various activities and maintaining a GPA above 4.0. Up until my junior year of high school, I would go to lengths to get work done and things made up that even surprised my teachers. Despite missing at least 50 days my sophomore year, I managed to teach myself material at home (challenging material at that) and maintain a 4.2 GPA. I would arrange to come before and after school to take tests, as well as attend detention sessions on Saturday where I was able to take tests because the sessions were proctored (I was not forced/obligated to, and I'm still the only on at my school who has utilized them for make-up work). However, things took a turn for the worse by my junior year. By that point, I'd been hospitalized for various intravenous protocols that provided little to no relief. My headaches started increasing in frequency and severity with a vengeance. It reached the point where I wasn't able to attend school, so my parents arranged a visit at the Michigan Head Pain and Neurological Institute (MHNI), a short 6 hour drive each way from where I live in Iowa.

At MHNI, I was inpatient for close to 3 weeks where various drugs and protocols were tested on me. I wasn't very much improved and eventually sent home with a train load of meds and told I needed psychological help because they thought that was the main component to my pain. The only drug they gave me that worked to any degree was IM Benadryl (which I was forced to inject myself with almost daily). On these meds, I lost my personality and any desire to do anything, as well as gained close to 80 lbs. When I went to get help at an ER when I could not control my headache, I would eventually see a doctor after many hours of waiting only to be told that they wouldn't give me anything and I had a drug seeking problem. Depression, hopelessness, and suicidal thoughts aside (they started around the time my headaches grew worse and I had no means to control them), things were at a very low point. Not able to attend school or tolerate much of anything, the majority of my time was spent in my room with the lights off rolling around in pain and trying to obtain some level of comfort. After a lot of time like that, many old friends had stopped trying to contact me or include me in things because the majority of the time I was not able to participate. Obviously, that wasn't a big help to the isolation issue and the fact that I keep to myself was probably no help either in hind sight. MHNI would make no med changes over the phone, so to make any change, I would have to drive 6 hours for a 30 minute appointment and drive 6 hours home. Fed up with them, we decided to cancel treatment from them and try and alternative means.

At this point I went to a local pain specialist in my area to see if he could shed any light on the issue. He recognized pain on the supraorbital and supratrochlear nerves. I was initially started on methadone, which caused pitting adema and fluid retention in the lungs so that was changed to Opana. Granted, opioids are rarely prescribed for headaches or people my age, but at the point I was ready to face the side effects if it would amount to some level of normalcy. Later on, I had a procedure done on the nerves with great success. I haven't had a full blow migraine since the procedure (1 month ago) and that coupled with the new meds I was on (and even more importantly the meds I was no longer on) I've been doing better than I have in 2 years. One of the greatest satisfactions of the whole ordeal is I can now prove that the problem was not a psychological one and all the depression I had was a result of pain and professional ignorance. I've been able to resume a bunch of classes and I'm managing the pain with OpanaER and Dilaudid for acute episodes. My doctor, along with my old local neurologist now believe that my migraines were secondary to the nerve compression on the two nerves as a result of the head trauma and now that the area had been broken up and treated with steroids to reduce inflammation, I should continue doing better for awhile. I left a lot of the gritty emotional struggles out because frankly I'd rather not dwell on them. This could have been a lot longer, but even I'm bored reading through it. Nice to meet you all.

-George

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/21/2009 5:06 PM (GMT -7)   
 
 
   Dear Coin,
 
      I am glad you finally posted a thread to introduce yourself. Though I am sorry for the pain you have had to endure, I am glad you found Healing Well. Welcome.
 
   *huggs*
      dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 10/21/2009 7:50 PM (GMT -7)   
George,
wow, you've been thru a lot, and I was wondering didn't the send you for mri's or contrast mri's?
or even ct scans?? as those should've picked up on something...I'm glad you found a good pm doctor to
help you get thru these...and I wish you continued success in treatment...
Hope you'll post more often...
Lots of soft hugz..
(((((((((((((((((((((((((((((George)))))))))))))))))))))))))))))))))))))))))))))))))))
I've also had trouble with doctors looking at me, as I look 25 and too young to be in such pain...
But ya know some doctors are just going to be like this, I'm very glad you finally found a good doctor...
hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********

Post Edited (Chartreux) : 10/21/2009 8:53:10 PM (GMT-6)


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 10/21/2009 7:59 PM (GMT -7)   
Hi George, sorry to hear you're like so many of us here who are sent from Dr to Dr trying to find a diagnosis or a cure and feeling like no one really wants to take responsibility! I'm ok now with a team approach so glad to hear you also have found some success and help. Such a lovely place to hang out on this site, there are so many here with stories to share and some laughter to lift your spirits too.
Welcome, golitho

OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 10/21/2009 9:11 PM (GMT -7)   
Chartreux said...
George,
wow, you've been thru a lot, and I was wondering didn't the send you for mri's or contrast mri's?
or even ct scans?? as those should've picked up on something


I left a lot of information out, because if I hadn't it would have been too large to post. I've had both MRIs and MRAs of the head, neck, and cervical spine. I've had somewhere around 6 lumbar punctures, 4 blood patches, and 1 double blood patch (theory was I had low CSF pressure for awhile). I've had a few CTs, a TEE to look for a PFO, a few EEGs, cortisol checks for Cushing's, and others that I can't think of off the top of my head. It's been quite an ordeal.

Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 10/21/2009 9:36 PM (GMT -7)   
Sounds like you need to get a t-shirt that says....."That's Mr Pin Cushion to you." turn smilewinkgrin
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.


OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 10/21/2009 9:52 PM (GMT -7)   
No kidding..I was sent home with benadryl in 50mg/ml vials that I'd usually have to inject myself on a daily basis. That combined with ER visits and IVs has left some seemingly permanent scar tissue.

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 10/21/2009 10:32 PM (GMT -7)   
George
Welcome to the Family, Thank-you for your posting! You have sure had a rough time of it. I am glad to see that you have a good PM and are now getting a handle on your pain! Please keep us informed on your progress! Again I Welcome you to the Chronic Pain Forum.
 
Good Luck to Youi
 
White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--   DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in  Sep 2009,  C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 10/22/2009 8:12 AM (GMT -7)   
Ya know I really wonder about those military doctor's...at Peterson AF base, I was treated somewhat very impersonable,
my husband had an allergy appointment at Fort. Carson and the allergy doctor looked at me and said "you need to be
treated for Asthma, young lady" now why would'nt they have picked up on this at Peterson..so I don't have much trust in the military doc's much..
I'm wondering if they did find something and are not telling you........Sure wish you could get better treatment...
Lots of soft hugz.............
Hope you get a low pain day soon...
((((((((((((((((((((((((((((((((((((((George))))))))))))))))))))))))))))))))))))))))))))))))))))
after going to Fort. Carson that day, I went off base and got dx with Asthma...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 10/22/2009 8:33 AM (GMT -7)   
George Welcome to our family. You will find all the support and advice you can swallow from us... yeah
 
I went through a car accident when I was 15 that started me on a battle with Migranes for years.  I would have them for days on end I couldn't function.  In the end they found out it was compressed nerves at the base of my skull.
 
But wow you were younger then me.  That had to of been horrifying.  Your parents must of felt out of control not being about to stop your pain.
 
I think most of us have had someone or the ER look at us like we are drug seekers.  It comes with the territory with the people who abuse the system.
 
Keep us updated on your progress so far you seem to be on the right track.
 
Laurie
Kidney Diseases and Disorders
              Moderator
 
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/28/2009 7:01 AM (GMT -7)   
Dear GCoin,

Are you still doing good with your med combo & injections?

*huggs*
dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


painsnbody
Regular Member


Date Joined Aug 2009
Total Posts : 30
   Posted 10/29/2009 9:16 AM (GMT -7)   
I read your post and glad you are finding some relief. Since your injury includes nerves and because you get headaches I would try a particular nerve med. I'm wondering if you tried it?
 
Topamax - is the name of the drug. It's a very strong nerve med. but has been used for headaches for many years.  I have taken it in the past and if you would like some additional info let me know.
I would be very supprised if it didn't help more then the current meds you listed.  Talked to your doctor about it! This med get overlooked by many doctors because it is a old med.
 
 

OnTheRocks
Regular Member


Date Joined Oct 2009
Total Posts : 117
   Posted 10/29/2009 9:58 AM (GMT -7)   
Heh..Topamax..It caused adverse reactions for me, namely despondent depression/borderline psychotic episode. I've been around the block with migraine meds. Off the top of my head, these are the ones I've tried:
*Nortriptyline
*Topamax
*Verapamil
*Ergotamine w/ Caffeine
*DHE
*Keppra
*Neurontin
*Propranolol
*Magnesium
*All triptans
*Toradol
*Benadryl
*Reglan
*Compazine
*Thorazine
*Phenergan
*Nubain
*Heavy O2 flow
*Decadron
*Prednisone
*Solumedrol
*Midrin
*Tramadol
*Stadol
*Hydroxyzine
*Depakote
*Cymbalta
*Lithium
*Aspirin + Caffeine
*Indocin
*Naproxen

and a bunch of vitamins/supplements/herbs. Probably left out few meds as well.

Thanks for the tip, though.

Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 10/29/2009 10:27 AM (GMT -7)   
Hokey Smokes Bullwinkle! George, are you sure your only 17?? What a ride you've been on for someone so young!! I'm glad to meet you and very glad you posted here. I'm sure we can learn alot from you, you've lived far beond your age! Hopefully we can return the favor as we have some people here who have also been around the block a few times! Welcome to the fam damily George!
Your new Friend,
Pete
When I was young, I broke almost evry bone in my body and I'm paying a heavy price now but I'm still here and so glad to see my two sons grow up to be fine young men. They are both serving in the US Navy, My oldest is serving on a aircraft carrier but is currently in advance radar school. The other is a Asault Ship "The Jaws of the Fleet" somewhere in the Persian Gulf w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/29/2009 6:09 PM (GMT -7)   
Dear GCoin,

At 17yrs, to have taken all those meds.. esp the verapamil, for headaches.. I am glad, however, that your parents and doctors decided to try the injections. I know many with chronic migrains, headaches, nerve pain, that it works well for. Hopefully you will have relief for a more extended peroid of time. Have your parents ever thought of Radiofrequency nerve ablation?

*huggs*
dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 10/29/2009 8:07 PM (GMT -7)   

Hi GCoin,

Welcome to our Family!  You have certainly had a rough ride over your young life.  Very happy that you have FINALLY found a Dr. who found the cause and the right meds to help you.

Keep us posted and we are here for you!

XXOO
Patti

 


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 10/30/2009 8:02 AM (GMT -7)   
HMMMM>> I take Verapamil for High blood presure, have for over 10 years! Maybe thats why I don't get very many headaches? Or maybe its because I'm retired and I don't have to get stressed out all the time anymore???
Just a thought!
Hope everyone is doing good today especially my new friend> George!
Your old new buddy>
>Pete<
When I was young, I broke almost evry bone in my body and I'm paying a heavy price now but I'm still here and so glad to see my two sons grow up to be fine young men. They are both serving in the US Navy, My oldest is serving on a aircraft carrier but is currently in advance radar school. The other is a Asault Ship "The Jaws of the Fleet" somewhere in the Persian Gulf w/ 2,000 Marines aboard. I am one very proud (what they call me)> Big Pops! 


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/30/2009 9:58 AM (GMT -7)   
 
 
   Dear Pete,
 
     I have known many to take verapamil for high blood pressure.  Hehe, nothing bad :-) I had a friend years ago that had wanted her son to try it and the doctor had said no, becuase of his age? and that he was still growing. Then again, I didnt like that doctor, he always seemed so pre occupied with things other than the tasks at hand. I donno, got a bad feeling about that guy.
 
    Sorry to get side tracked on your thread GCoin!
 
*huggs*
  dani

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 

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