Update on TMJPAIN, Suzane

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tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 5/28/2010 10:58 PM (GMT -7)   
I sure have been having a tough go of it lately. What a tough journey this chronic pain is. My wish is for none of us to suffer like this. It seems so inhumane. I pray that God will help me to have courage and strength to continue. I try to keep in mind that each day is a new day, a new beginning and that it will get better but that is a tough job to do some days.
 
I wanted to tell you some new things on the horizon for me, something that has given me a little hope again.
 
#1 got accepted for permanent disability, this is a huge one financially for hubby and I
 
#2 seeing a new dr on june 9, he is called an iridologist, please google and read and let me know what you think
      we have testimonial from a family friend that has gone and is doing so much better and she too has suffered from headaches
      like mine for ten years, she now has headache free days, many of them, gosh i can't imagine what that would feel like
 
#3 i have an appt with a chronic pain psychologist on wed. this should really help, the only thing is he is giving me one
       appt at a lower price since i can't afford $170. an hour so further appt will depend on what he says to me, but i am happy
      for one appt.
 
 
And that is it my friends. i hope to get your feedback.
 
Take care and have a beautiful long weekend.
 
hugs
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to try to break the pain cycle by resetting the receptors
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/28/2010 11:17 PM (GMT -7)   
Suzane, It looks like the end of the tunnel was more than a train. Yea. I am glad that this will help ease some of the burden for you and your husband. It also sounds like the new dr might be anoth new ray of hope. At some point we get to where anything new brings with it hope because what we have been doing so far has drained us and we start wondering how long this journey will continue. It will be good to hear more from you after the visits. I have been thinking about the pain psychologist myself as the depression gets pretty heavy at times. We all have our fears. Take care and I will continue to pray as you keep going forward.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 5/28/2010 11:29 PM (GMT -7)   
Oh fatherjohn thank you so much for your kind words. i am here at this hour as my head is so killing me. 0225. I can't seem to freeze it enough with the ice. i pray that these appt will help me. cause i sure need it. i am in a pretty deep depression and i am having a tough time getting out but i keep trying. My faith keeps me going.

My memory fails me fatherjohn but i was wondering if you are a priest?? i am catholic.

thanks for your unending support. it helps me tremendously to have everyone's support here. I may not post every day but i read here every day for encouragement to keep on fighting, as tough as it may be, no matter how many times i say i don't want to do this anymore!!!!
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to try to break the pain cycle by resetting the receptors
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 5/29/2010 2:56 AM (GMT -7)   
Congratulations on your SSD. I know this must be such a relief and perhaps some good medical coverage will follow. I will keep my fingers crossed for you.

I really hope this Dr turns out to be a blessing for you. It's possible. I know you want to give up sometimes (like so many of us do), but you haven't because there is always a ray of hope out there. Sometimes it's such a small ray that you can't imagine it giving you strenght, but then it breaks through the clouds and you can see clearly again.

I hope for you that this ray will be your saving grace and that you will find relief.

Always the best!
Retired Mom


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 5/29/2010 6:36 AM (GMT -7)   
wow, congrats on the disability one thing down, and yes the pain management psychologist can help, I see mine twice a week and I'm generally calmer after the visits...
as I can get things off my chest, so to speak...and he/she can help with getting relaxing techniq..I've read about the Iridologist and sure hope that can help you...
I do believe that light can hurt your eye's and that maybe color could too, making the headaches worse, so if you can focus to shut that out maybe your headaches
could get better...so give it a try ...it might help...
(((((((((Suzane)))))))))))))))))))))
hugz

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 5/29/2010 11:24 AM (GMT -7)   
Suzane, I am glad that we were able to connect at a good time last night. I have my times that I don't sleep well and last night was one of those nights. I get the question if I am a priest often. The answer is no but I have been a pastor for over 27 years. My name, fatherjohn came from some youth that I took over to Eastern Europe to help build a childrens ministry after the fall of communism. Many of the youth experienced home sickness and I was the eldest member of the staff. They sent all the youth to me for comfort and counseling and they said I was their father away from home. One day the group was meeting and they jokingly referred to me as father John (my real name) and it stuck. I can still walk into churches and these now young adults will call me fatherjohn. I like to consider myself as interdenominational. I have started numerous chaplaincy ministries for police and fire departments as well as several hospitals. I helped establish a chaplaincy program at the college I graduated from. I have pastored numerous churches as well as founded a college program for men and women coming out of drug and alcohol addiction. There is my background. I hope you have a great day.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 5/31/2010 1:22 PM (GMT -7)   
Thank you for everyone's support. I hope I hear from others too please.And thanks fatherjohn for your explanation. You are a special person I believe. I use my faith to get me thru this. I have prayer books in my bed all the time, crucifixes, rosary under my bed. I believe that God has a plan for me but it will happen on his time. So I tell you i pray hard. I have had the bishop come visit me and my priest as well. I get aweekly visit from a member of my church each week for communion as i am not able to go to church nor am i fit to drive.


Take care all
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to try to break the pain cycle by resetting the receptors
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 5/31/2010 1:48 PM (GMT -7)   
Hi Suzane :)

I said I was going to e-mail you... and I will... but I'll post here, too. I'm glad to see you have some more "positive" things on the horizon.

I'm so glad you got your permanent disability... I know this is a huge relief. I'm happy for you... I'm glad you are seeing the pain psychologist... I think just having an "outside" person to talk to is a really good thing. It's helped me, in the past, to put things more into perspective.

Re: the iridologist... I did some reading.... and have mixed feelings. Mostly, I believe that when you've tried all "traditional" paths, and you are still suffering so much, it's worth it to give pretty much anything a try - because, you just never know. So, I completely support you trying whatever it is that just may work, and will be curious to hear what happens. That being said, I read a few articles that makes me pretty skeptical... but, again, that's just me and experiences I've been through. Like I said, if it works and makes you better - then who cares what the heck it is, right??? :) I know you are wise enough, and have been through enough, to discern the difference between someone who can honestly help you - and the opposite (sorry, don't know how to appropriately say it for here on the board!!) :)

I'm praying for you, as always, and hoping for a miracle for you... and so many of the people here (including me) :)
Love, Tina
Main Health Problems: Dysautonomia/POTS; CFS/Fibromyalgia; Severe Chronic Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; Severe Vitamin D Deficiency

Pain Issues: Cervical/Thoracic back pain (they called it DDD...but I don't know); migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; Future Plans: Intrathecal Pain Pump; already completed trial (Sept, 2008); awaiting my decision for implantation...


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/1/2010 9:18 PM (GMT -7)   
So tomorrow I see the chronic pain psychologist. I am axnious to get some info from him that will help me to cope better with this constant pain. He normallly is $170 an hour but will let me do this appt for $50 any further appt. i am not sure what he is going to say. We just know we dont have $170 to give him every time i see him. So I will update you on that later tomorrow.

Have anice day tomorrow. Try to get out in the sun for 30 minutes a day. That's all you need.

hugs
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to try to break the pain cycle by resetting the receptors
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 6/2/2010 12:35 PM (GMT -7)   
Suzanne have you been tried on Methadone?? I know of several people on Methadone for H/A, wanted to ask.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/2/2010 1:12 PM (GMT -7)   
Yes i did methadone during my first sick leave with the headaches in 2002- 03. I was zombied on it bit it did help. Right now i am cleaning my system and weaning off of the oxycodone as it never helped and has wreaked havoc on my body.

Today I went to the chronic pain psychologist which proved to be fruitless. I don't have the money he wants so that is the end of that one!!!!!
Oh well. I tried.


   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to try to break the pain cycle by resetting the receptors
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           

Post Edited (tmjpain) : 6/3/2010 8:44:22 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 6/2/2010 3:23 PM (GMT -7)   
Suzane I am sorry to hear of what happened with your appt, so frustrating. Now, are you the one that posted about trying an Iridologist? Perhaps if that does not pan out you may consider the Methadone. Is this why you are trying to cleanse your system? I know it has its side effects like most but they will generally subside in time.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 6/3/2010 6:40 AM (GMT -7)   
 
 
  Suzanne,
 
     I sure do miss you! *hugg* Hang in there, it isnt much longer now before you see the new doctor on June 9th!  Will be praying he is able to help you! Stay strong!!
 
*Warm Hugg*
 
     dani
Two roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
Chronic Pain Moderator


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 6/3/2010 7:03 AM (GMT -7)   
Hey Suzane , I'm glad you got your insurance coverage my friend , I know thats a relief for you as it would be for any of us , good job ! I don't know what a indologist is , but I'll check it out and you should too my friend , very thoroughly .As for the psycologist , when I started seeing my shrink she charged 175 per hour . I was in a very bad way and told her I only had medicaid but wanted to come regardless of cost , I was suicidal and hey the money wouldn't help me if I offed myself . Anyway after going and talking to her she took me on for free or ''pro bono ''I didn't agree with that so we settled on $40 per 1 hour session . So take heart Suzane perhaps the doctor after talking with you will work with you finiancially. Best of luck friend ! Mikel

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/3/2010 7:33 PM (GMT -7)   
straydog said...
Suzane I am sorry to hear of what happened with your appt, so frustrating. Now, are you the one that posted about trying an Iridologist? Perhaps if that does not pan out you may consider the Methadone. Is this why you are trying to cleanse your system? I know it has its side effects like most but they will generally subside in time.

Yes I will be seeing the iridologist next week. . I will not be considering Methadone and any other opiate for that matter as i am weaning them from my body right now as none of those meds worked and they have wreaked havoc or several organs of my body.


   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to try to break the pain cycle by resetting the receptors
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/3/2010 7:42 PM (GMT -7)   
Dani Henson said...
 
 
  Suzanne,
 
     I sure do miss you! *hugg* Hang in there, it isnt much longer now before you see the new doctor on June 9th!  Will be praying he is able to help you! Stay strong!!
 
*Warm Hugg*
 
     dani

thanks dani, i miss you too and need you. i am at a pretty bad low, so sad, that psychologist said he won't treat me as i don't have enough money, he could have helped me. I am so scared!!!


   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to try to break the pain cycle by resetting the receptors
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/3/2010 7:48 PM (GMT -7)   
MIKEL99 said...
Hey Suzane , I'm glad you got your insurance coverage my friend , I know thats a relief for you as it would be for any of us , good job ! I don't know what a indologist is , but I'll check it out and you should too my friend , very thoroughly .As for the psycologist , when I started seeing my shrink she charged 175 per hour . I was in a very bad way and told her I only had medicaid but wanted to come regardless of cost , I was suicidal and hey the money wouldn't help me if I offed myself . Anyway after going and talking to her she took me on for free or ''pro bono ''I didn't agree with that so we settled on $40 per 1 hour session . So take heart Suzane perhaps the doctor after talking with you will work with you finiancially. Best of luck friend !  Mikel  

You must be mistaken Mikel as I don't have medical coverage, that's why the problem with the chronic pain psychologist.

I was so excited that he could help me and even at $100 he said NO. So not as good of luck as you had Mikel. I have been quite down today and have stayed away from everyone and stayed in my little dard room!!!! I am scared, i am sad.


   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen thousands of doctors, been on dozens of meds and tried all forms of treatment with no success.
   May 2010 to present taking DM, dextromethorphan, 4x/day, to continue to reset the receptors, weaning off of oxycodone as it did not help with my pain, pain continues to be terrible every minute of every day!
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to try to break the pain cycle by resetting the receptors
 Meds: oxycodone for breakthrough, cymbalta, vitamin D, B12, magnesium, omega 3, melatonin
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           

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