My pain is so bad

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tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/15/2010 3:07 PM (GMT -7)   
I have my head double packed in ice, i just can't take this pain. Why why, it just doesn't make sense this pain, the same pain , for ten years and nothing helps. I just don't know what to do anymore, none of the doctors i have seen know what to do and I have good docs. Oh man!!!!! Can someone come talk to me?
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons 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 start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 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 6/15/2010 3:44 PM (GMT -7)   
Hi Suzane...

I was going to e-mail you... but I'll post here :) I'm so sorry for the ongoing pain that you are in. I know how badly my headaches affect me and how debilitating they are - so I can't even imagine 10 years worth of a non-relenting HA. I don't have any good advice for you, unfortunately - I sure wish I did! Does IV pain meds help at all, even to decrease the pain a bit? That's all that helps me when my headaches get so bad. Have you tried the oral fentanyl (Actiq)? That's what I used to use for my migraines. It has "pro/cons" but it sure worked for me.

I wish there was something I could say or do to help you... the best I can do is let you know you are in my continuous prayers - and I continually pray for a miracle for you. It's hard to see the purpose of any of this, especially while in the midst of it - you know I definitely understand that. But just keeping holding on and do your best to fight through each day.

Much 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 6/15/2010 4:38 PM (GMT -7)   
Oh Tina, I did not expect you to post as you are dealing with too much right now. Please don't worry about me right now, focus on you and the babies. I am praying hard for you. Can you send me your phone number.

Love
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons 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 start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 6/15/2010 5:04 PM (GMT -7)   
So very sorry Suzane for your suffering , its so unfair . I don't know how good those doctors are , I just wish they could give you some relief . I'm praying you'll feel better soon my friend . Mikel

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 6/15/2010 5:17 PM (GMT -7)   
Don't worry about me :) Just pray... Plus, I'm tearing my HAIR out because of this bedrest thing... so I gotta have something else to think about :)

Feel better, Suzane :)
--Tina

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 6/15/2010 5:20 PM (GMT -7)   
I'm so sorry about your pain. I wish there was something I could do to help, but I have no answers. I don't even know where to recommend other than perhaps Mayo clinic. They have a web site and do have information about referral to Mayo. I so hope you find something that helps with this pain!

All the best to you!
Retired Mom


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/15/2010 5:50 PM (GMT -7)   
Thank you my dear friends. I pray that all our pain gets even just a little bit better. That's all I ask of God is to take it down two notches and I could get thru my day much better. I would love an 8/10. So i took my rosary to start praying and it breaks in my hands, what does that mean????

Tina can you email me your number cause i want to call you girl. I need to hear your voice.

hugs
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons 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 start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/15/2010 6:07 PM (GMT -7)   
(((((((((((Suzane)))))))))))))))). You know that I'm pulling for you! I hope you are feeling a little better tonight!

hugs,
Skeye

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/15/2010 6:19 PM (GMT -7)   
I'm sorry for your ongoing pain Suzane....when was the last time you say your doctor? Have they got any ideas at all on what else they can do for you? If I understand your signature line properly, you are only taking Cymbalta at the moment and no actual "pain" medicine? I realize the oxycodone didn't help you...but are there other pain meds you can try?

Wish I had some brilliant ideas for you but I keep you in my prayers that you might experience some relief. I would also suggest to you that if you haven't already, you should meet with a pain psychologist to help you find ways to cope. Your posts here seem to be becoming more and more desperate at finding someone to talk to you to help you bear this...maybe meeting with someone professional might help you one on one, or perhaps there is a support group in Ottawa where you could meet others in the same boat as you.

Please don't get me wrong, I am not saying to NOT come here and post...by all means, post as often as you need to. I'm just saying that perhaps some one on one time or "in person" support might be helpful for you as well.

Have you been treated at the Ottawa Headache Centre?

take care...I'm thinking of you.

hugs,
Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/15/2010 6:41 PM (GMT -7)   
Hi Pamela
No worries with your post. I have tried all kinds of narcotics over the ten years and nothing helps. I have an appt with a psychologist but can't get in until july. There is no headache center here in Ottawa let alone Ontario. I have gone thru every kind of doctor. We are ruling out heart stuff right now. I have not found any place that has people in the same boat as I to talk with but that would be great. That's why i am here a lot now. I can start the rehab program because it is all day mon. to fri. and my pain is too great to even think about doing this right now. I see my gp regularly and this coming friday is the day. I only wish I was rich cause i would be in the states right now at a good headache center getting some answers.
Your prayers i can always use. And I will pray for each of you. I have made some very dear friends here that I think about every day.

Love
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons 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 start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/15/2010 6:50 PM (GMT -7)   
Suzane, there is a Headache Clinic in Ottawa...I googled one. I'll send you the link via email as I don't think I'm allowed to post it here. There are links to other sites that might help as well...it's worth a shot, right?? I noticed they are looking for people for a clinical trial as well...so who knows!

:-)

Email on it's way to you.
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 6/15/2010 7:30 PM (GMT -7)   
Oh Suzanne   I'm so sorry that you're hurting so bad.  There's got to be something that would help you.  Have you tried migraine medications?  Or maybe neurontin or another kind of med like it.  I'm trying to think of anything I can to help you.  It just isn't fair that you're having to suffer like this.  Bless your heart for replying to my post when you're in so much pain yourself.  I feel like a whiner sometimes.  There are others like you that it seems your pain is so much worse than mine.  I sure hope you feel better.  (((((((((((((((hugs))))))))))))))
 
love
Loretta
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 6/16/2010 1:12 AM (GMT -7)   
Suzane I know you have listed Cymbalta as your antidepressant and I have no idea how long you have been on it. I do question whether or not it is working for you. Sometimes we have to try different ones till we find the one that really works. I am a long time migraine sufferer and you are right, most pain medications do not work well with many different kinds of headaches, strange but true. In fact many times they can cause what is called a rebound headaches. An old medication that was used effectively here in the states was Elavil. I wish I knew of a medication that would give you relief.

I hope you were able to find the info Ms Bunky has on the headache clinic in Ottawa. Take care.
 

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.


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 6/16/2010 4:36 AM (GMT -7)   
Hi Suz, I pray that you wake today w/ less pain! I can't think of anything that could be worse than what you are dealing w/ everyday!
I hope the Dr's can find something to help you soon.
Have you ever heard of St. Ann's near Quebec City? My little sister make trips there every year and prays to her. I remember our family taking my Father there back in the early 70's to pray for him. It was the only time I was ever there but remember feeling something special about the place. I know it's a long way from Ottawa but it's just something that I thought about because you are in Canada.
Thanks for the E-mail!
Big Hugz and lots of prayers!
Pete
When I was young & stupid I broke almost every 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, both are in the Navy. I'm so proud! 


pugluv
Regular Member


Date Joined May 2010
Total Posts : 20
   Posted 6/16/2010 11:08 AM (GMT -7)   
I am really sorry about your pain. I was wondering if you are going off oxy because of new regulations in canada. I was taken off Kadian because of it. I hope you are feeling better soon.

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 6/16/2010 11:56 AM (GMT -7)   
Suzane, just wanted to send you a gentle hug today and hope that you are doing okay. I am soooo sorry you are so miserable! Hang in there hun! Take care of you!

Beckey

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/16/2010 12:34 PM (GMT -7)   
OMGosh, thanks everyone for caring so much. The Ottawa Headache Center is a neurologists office, as i called the number. She is known as the headache specialist in adult headaches. But too bad for me as I have already seen her and she said she has nothing to offer me. My headaches are not migraines. I will talk to my dr. on friday if she feels a need to change the cymbalta. If they could lower my pain a bit i would be way better off and able to cope so i don't know that there is a need to change it. Just and 8/10 is all i am asking for. Thank you for the hugs Beckey. Pug, I am going off the oxy because it doesn't help my pain at all so no sense taking it. I have taken many opiods over the ten years and those drugs have wreaked havok on my body. Time to get clean, if you know what I mean. I know what you are talking about Petey. We have been there once. But I may be going on another pilgrimage the end of the month and we will be going to the oratory where healing happens and also another large church with a lot of stained glass. But I want to go there to pray. Last time it really helped me. And thanks to loretta, beckey and straydog. Thanks for trying to figure this out.

love
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons 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!Have tried all the opiods and pain killers and nothing helps.
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath, ativan and flexeril prn.
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 6/16/2010 1:17 PM (GMT -7)   
 
 
   Dear Suzanne,
 
     Hopefully you are resting with ice right now. *hugg* I am so sorry the pain is so unbearable for you right now. I am also sorry to hear that the new doctor will not re assess the source of your problems. That has to be hard for you. It is another in a long series of let downs. I am so sorry.
 
     You know I think you mentioned in IM chat that you wanted to know of anywhere here in the states that could help? I am wondering if you have ever looked in to "mayo clinics" here in the US? might be worth looking into if you are looking to travel to the US anyway.
 
 
     Teaching Hospitals are good too.
 
     I hope you can rest a bit today. I am so sorry you are suffering so horribly!! You are in our prayers.
 
*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


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/16/2010 2:15 PM (GMT -7)   
Thank you my sweet Dani. RE my new doctor, he is trying to get me all figured out actually. Maybe you misread me or I typed it incorrectly wwhen we were chatting. He is having me take homeopathic remedies that are for the trauma to the tissue in my body, for inflammation and a mild drainer. He spoke today with the cranio sacral therapist so that they are on the same page. They seem to think that two falls cracking my tailbone when i was 17 and 21 relate to may c1 c2 which is where they say the problem is. So the therapist will be working the spine with c1 c2 and jaw. Time will tell. But they have already told me it is going to be a long process. Hmmmmm.......
Still nothing to bring this pain down. Oh well.......
Thank you for the links to the hospitals. I will check them out.
But most of all thank you for all your prayers.

Love
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons 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!Have tried all the opiods and pain killers and nothing helps.
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath, ativan and flexeril prn.
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/16/2010 5:40 PM (GMT -7)   
Suzane,

I'm so glad that you are going to give homeopathy & cranial-sacral work a try. Some people have fantastic luck with these non traditional therapies. I certainly hope that you are one of them! Keep us posted.

hugs,
Skeye

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/17/2010 3:13 AM (GMT -7)   
I have actually done both those treatments before    so I am doing them again because that is what the iridologist/homeopath suggested I do. So i thought i have nothing to lose, just money, lol. oh well...... we'll see what happens. I've already been told this will take quite a while.
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since April 2000.
 Poor prognosis, seen tons 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!Have tried all the opiods and pain killers and nothing helps.
  Feb to end of April 2010:3 cycles of IV Ketamine infusion via a PICC line and pump at home, this was to start resetting the receptors.
 Meds: oxycodone (weaning), cymbalta, vitamin D, B12, remedies from the homeopath, ativan and flexeril prn.
 Profession: Part time registered nurse on Long term disability and applying for permanent disability thru CPP which i was accepted
 52 yrs old, female, married, two boys 19 & 21, live in Ottawa, Ontario, Canada
 
           

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