TMJ please read this

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straydog
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Date Joined Feb 2003
Total Posts : 16295
   Posted 12/1/2010 11:17 AM (GMT -6)   
Hi TMJ, I was over in the migraine forum the other night and read on there a member named Annuk is going to be having surgery soon. This person is having an Occipital Nerve Stimulator implanted for some type of a headache problem. I thought of you and wanted to let you know about this. I am not sure if this is something that could benefit you or not. Just a shot in the dark. This person is located I believe in London. Anyway, thought you may be interested in this.

Take care.
Moderator Chronic Pain Forum

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 12/1/2010 12:05 PM (GMT -6)   

 

     Tmj is having a tuff time of it, and does most of the time. We both have talked to Annuk, looking for a solution to her problem. Yes, you are correct she is from England, so there is somewhat of a time difference. I will see to it that Suzane reads this as soon as she feels better. Thanks for posting this for her! wink   It means a great deal to Suzane to know that someone is looking out for her.

   I see many a member with pain issues, and can recieve some relief with meds. However; this poor woman has tried everything, and nothing has worked so far, and I do mean everything! cry    

  SE wink

Post Edited (Screaming Eagle) : 12/1/2010 11:08:59 AM (GMT-7)


straydog
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Date Joined Feb 2003
Total Posts : 16295
   Posted 12/2/2010 4:16 PM (GMT -6)   
My thinking was this was not the same type of SCS that Skeye has and immediately thought of TMJ. Do you know if any of her drs ever mentioned a trial for an SCS or not? You would have thought by now someone would have been able to have helped her by now. I just can't fathom what she goes through on a daily basis, all we can do is hope and pray something will help her.
Moderator Chronic Pain Forum

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 12/2/2010 7:43 PM (GMT -6)   
I think part of the problem is that they cannot pinpoint what is causing her headaches and or where the pain is coming from. Hard to treat when that is not known. She did however tell me that she was possibly going to try methadone, and I took it that she had tried it before, but didn't know she had some success with it. Her thought process, is that she wants the problem fixed and not masked with meds. The last med she tried was Ketamine, and did not help her. (a very powerful med)

The headaches have affected her memory quite a bit, and I'm always prepared to repeat myself to her. My wife and I love her dearly, and just hate to see her suffer so much. Lets hope Annuk receives some relief with this implant. She has suffered quite a bit as well. Again, she will appreciate you're efforts to suggest something for her. We keep looking and hoping!

Not to change the subject, but I'm interested in the pain pump that you have been talking to retiredmom about. My Dr mentioned this to me the last time I was in to see him, but I do believe I have so many other options to seek out first. However; I do like to start my research early, just in case. So when ever you post something on this, I do perk up!

I have not heard from Suzane in a few days, and that is not good, nor is it normal for her. She should be checking in here soon, and if not, I will call her husband and visit with him.

SE :)

straydog
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Date Joined Feb 2003
Total Posts : 16295
   Posted 12/2/2010 9:01 PM (GMT -6)   
She may have no choice but to take meds if that will give her some relief. I know she would like to know or have a dx, but she needs a break from the pain too. I wish there was something out there for her, maybe Methadone will help her. I know of a lot of people on Methadone for headaches that nothing else would touch so maybe, just maybe.

You will know when and if you are ever ready for a pump. If there is a medication that will effectively control your pain then insurance will not pay for a pump. I ran out of medication options because of allergies and severe side effects. When my dr discussed the pump with me I laughed at him and told him I was too young for something like that and there was no way I would have something implanted. He said ok, but in 3 months you will be begging for one and I was and I did, lol. I am very excited about the Codman and the success rate for my dr has been 100%. That was something that held me back on the pump was repeat surgeries to replace it when the batteries died. But the Codman has taken care of that.

Let me know if TMJ talks to Annuk. Thanks.
Moderator Chronic Pain Forum

tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 12/3/2010 8:13 PM (GMT -6)   
Thanks Michael for giving me the heads up of this post for me. And thank you Straydog for your concern.
Yes this is one tough journey I am on. It's been ten years since these headaches started and three years
with no relief. I have tried it all. They want me to hold off on the Methadone but I don't know how much
longer I can last. No one can find the answer and yet they all find it very strange that I have not responded
to any form of treatment or medication. I believe we are still missing something in my body. I will be seeing a \
naturopath on Dec 16 who will look at things such as gut testing for food allergies, heavy metal toxicity, acidity in
my body etc. Also checking for hypothyroid for other problems besides the pain. And taking big doses of vit D
for a week.

Once again thanks Straydog for thinking of me. And always a thank you to my special buddy Michael. What would I
do without him.
SUZANE

One day at a time!!

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 12/3/2010 8:19 PM (GMT -6)   
Sweet Suzane......Just wanted you to know I am thinking about you!

Big Healing Hugs,
Beckey
Rheumatoid Arthritis, Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement, Fibromyalgia, TMJ, GERD, Severe Depression, VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uterus

Medications - MS-Contin, Plaquenil, Cymbalta, Famotidine and currently Prednisone

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16295
   Posted 12/3/2010 8:45 PM (GMT -6)   
Suzane have you ever tried Methadone before? I know of several people on a low dose that Methadone was the only thing that helped with their headaches. I am so sorry no one has any answers for you, I know you have suffered enormously.

Take care.
Moderator Chronic Pain Forum

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 12/4/2010 7:10 AM (GMT -6)   
Hey Suzane, think about you everyday and hope and pray you get some relief soon. Hoping to get my chat fixed soon, we still can't figure out why it stopped letting me log in. Maybe I will try setting up a new email address, I will let you guys know. Take care.
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Percocet, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 12/4/2010 8:49 AM (GMT -6)   
Thank you Antbuggey and Damouthy for your concern. I sure appreciate all the lovin'!!

Hi Straydog. Yes in 2002 I tried Methadone and it did help me so that is why I have mentioned it to my pain dr.
as I am going crazy with this head pain. It is wearing me down pretty thin and I don't know how to
keep being strong and getting thru the day. So it may have to happen sooner than later. I am trying to hold off as
we are checking other avenues for this pain.

Thank you so much for responding as it means the world to me.

Hugs
SUZANE

One day at a time!!
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