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tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 3/25/2010 8:07 PM (GMT -7)   
Hello my dear friends!! how are you all doing? My laptop is back so I will be able to join in on the conversations. i need an update on everyone!!
 
Myself, I came off my second cycle of ketamine infusion March 16. The first week of March I was doing so great. My pain was 7.5/10. That is good for me. But the last week and a half my headache is back to 9 and 10. Don't know why. My next cycle will start April 5. I hope things can get back on track. I have been up and about but the last few days I am not feeling great with the increase in pain. Also I am not sleeping great, having trouble voiding, awaiting a urology consult as I might need to do cathetherizations,  terribly dry mouth, going to look at getting some biotine products which help in saliva production. I will be talking to my dr. that is doing the infusions about seeing if I can decrease my Oxycodone as I am sure this is the major factor in all these problems. i feel like my body is just a terrible mess. I am certainly starting to feel down again! Going to get some bloodwork done on Monday to check liver functions and other.
 
I sure have missed you all!! hope you don't mind if I lean on your shoulders for a bit!!
 
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.
 Currently Feb 2010: cycles of IV Ketamine infusion via a PICC line and pump at home with some success.
 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
 
           


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 3/25/2010 9:21 PM (GMT -7)   
Suzane

You know that is what we are all here for, to support one another! And we are here for you! Maybe over time this treatment will work for you! I know I am hoping and I have my fingers crossed that they willl give you the relief that you are seeking! I am glad to see you back! Take care and I wish YOU well!!!!


White Beard

Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 3/26/2010 4:37 AM (GMT -7)   
I too have wondered where you have been. Though we don't seem to converse often, I've appreciated your imput to so many threads. I am so sorry you have been in pain so badly. I so understand the feeling! My daughter-in-love has TMJ so badly that she is miserable all the time! I feel for her! The closest I can come to understanding constant headaches is through my own chronic migraines. I hope you will get the treatment that you need to help with this terrible pain. And please, write in anytime you can, we all love your imput!!
Take Care,
Catz4
I'm called Cat, but as there are few other Cat's on here, I put the number of cats I have and combined it to spell out Catz4
DXed-Syringomyelia C-1 to T-1, Hypothyroidism, Diabetes Type II, IBS, Panic Disorder, ICC , Fibromyalgia, Migraines, Bipolar Disorder, Chronic Muscle Spasms, Torn Rotator Cuff in Left Shoulder, Had emergency surgery for ruptured bowel in '05 w/colostomy and takedown in '06.
Too many meds to name/Too many allergic reactions/sensitivities to too many drugs to name. Meds for Panic Disorder, Pain, Bipolar, IBS, Hypothroidism, Diabetes, Insomnia and then some.
 
 


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 3/26/2010 8:49 AM (GMT -7)   
 
 
   Dear Suzanne,
 
      I hope the next round of treatment works well for you. More so I hope your blood work comes back OK.  You are in our prayers here.
 
*hugg*
  dani

 

 

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

 

 


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 3/26/2010 9:02 AM (GMT -7)   
Hello Suzane! As you know I have been a little under the weather here, so my support is a little slow right now. I'm getting better day by day though. I hope they can keep you on the med that has helped you lately. I know it is a struggle, but hang in there, and I will be back soon to my old self supporting where I can. Take care my friend and I will see you soon.

SE
DDD (Degenerative Disk Disease) S1-L4-L5, Heart Attack 2002, Angioplasty to clear blocked Artery and to implant Stent. Six Epidurals, Disocgram, Melanoma Cancer 07, Lumbar Fusion March of 2010, Four cortisone injections Tendinitis in Elbow.


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 3/27/2010 6:43 AM (GMT -7)   
Thank you so much everyone. I will keep you posted as to my health. Right now I am not feeling too strong and i am teary.Need to get in a better place!!

I love you all.
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.
 Currently Feb 2010: cycles of IV Ketamine infusion via a PICC line and pump at home with some success.
 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
 
           


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 3/27/2010 4:33 PM (GMT -7)   
Suzane-
So glad to hear from you. I was a bit concerned so glad we got an update. i am hoping things will go better this time around.
Cyber hugs to you
Catahoula
sick and tired of being sick and tired


IsThereAnEnd?
Regular Member


Date Joined Feb 2010
Total Posts : 66
   Posted 3/27/2010 5:05 PM (GMT -7)   
Hello Suzane ~
So sorry to hear your pain has been SO bad. :( I know all too well how the tears just flow ever so freely when your pain isn't controlled. I hope things start to look up for you and SOON! Please take care of YOU, first and foremost. Wishing you a tolerable pain day Hun ~
Huuuuggggsss!
Cardiomyopathy, Celiac Disease, High Blood Pressure, 2 Failed Fusions @ L4, L5, S1, 2 Failed Fusions @ C7 & C8, Implantible bone growth stimulator cervically, and soon to have Neurostimulation Therapy to treat lumbar area, Chronic Pain Sufferer for 8 years, take several meds daily to survive! Praying for a miracle and fighting through the pain daily ~


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 4/2/2010 8:50 PM (GMT -7)   
hello everyone. i am posting on a more joyous note. We are in Vermont for a four day holiday. i t is wonderful here. The condo is huge. The weather calls for sun at 78 degrees. i was in my bathing suit all day and it April 2. so hard to believe. My headache has not disappeared but it is is 8/10. The main thing is i am happy and laughing while here with my hubby, son and his friend. We are having a grand time. They are just loving their skiing. I wish that this could last for forever but I know it can't. When I go back I have to start my ketamine infusions again, but for now, i am trying to keep that out of my mind.
 
I hope you have each had a lovely day even if it was 15 minutes in the beautiful sun!!!!
 
 
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.
 Currently Feb 2010: cycles of IV Ketamine infusion via a PICC line and pump at home with some success.
 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
 
           


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 4/3/2010 5:53 AM (GMT -7)   
Hello Suzane! I'm so happy to hear that your having a wonderful time! You really did need this! It has been a long time of suffering for you, and I'm sure your family is enjoying your retreat with them. If you were only a few states closer, we could visit in person, and you know that would be a Hoot! Tell Clive that Deborah and I said Hello as well, and I'm sure Cathy and Kenny would love to be there too! Enjoy! :)

SE
DDD (Degenerative Disk Disease) S1-L4-L5, Heart Attack 2002, Angioplasty to clear blocked Artery and to implant Stent. Six Epidurals, Disocgram, Melanoma Cancer 07, Lumbar Fusion March of 2010, Four cortisone injections Tendinitis in Elbow.


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 4/5/2010 12:17 AM (GMT -7)   
Thank you for all of your replies. They mean so much to me. Yes the trip was wonderful and it felt so good to laugh and smile and be happy for a change, even with a headache of 8/10.

But now the fun is over and I must start my cycle of Ketamine. I am scared, I wish I could be stronger than what I am. I just can't sleep, it's been a few weeks now. I must find out if there is something else I can do.
Please be there with me as I need you all badly!!! I will have my laptop this time so I will be able to keep in touch.

Hope you are catching more shut eye than I am and I will see you in the morning.

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.
 Currently Feb 2010: cycles of IV Ketamine infusion via a PICC line and pump at home with some success.
 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
 
           


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 4/5/2010 2:08 AM (GMT -7)   
Suzane, I will be there for you. I know that you dread the treatment, but at the end of the day you are so much better. When I hear the laughter in your voice, I know that it was worth it. You are so much better than you used to be. You may not realize it, but Privey and I have noticed it big time. Hang in there, and I will be chatting with you soon. We are so happy that you were able to go on Vacation with your family, as We feel that this was very much needed for you.

I did receive your card in the mail, and I proudly have the Canada Magnet you sent hanging on the fridge in our Kitchen.

SE
DDD (Degenerative Disk Disease) S1-L4-L5, Heart Attack 2002, Angioplasty to clear blocked Artery and to implant Stent. Six Epidurals, Disocgram, Melanoma Cancer 07, Lumbar Fusion March of 2010, Four cortisone injections Tendinitis in Elbow.

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