I have a little hope again to help with this pain!!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 1/16/2010 10:23 PM (GMT -7)   
Some of you know that I suffer from severe constant headaches. Started ten years ago but i have been in constant pain 24/7 for two years. Have tried several meds, treatments and seen many many doctors.
Well I am a nurse at a children's hospital and I had a thought to email a dr. i know at my hospital that is an anesthetist and looks after children with chronic pain/palliative care. So he emailed me back right away and i saw him this past Thurs. He is the one that suggested weaning the sleeping pill and take melatonin. He said that is the only thing that will help people get back a regular sleep pattern. So there is a medication he can try for me. He can't admit to an adult hosp. as he doesn't have privileges but says we can do this at home. It is intravenous Ketamine given via a pump over five days. A nurse will come and check me daily and i must have someone at home with me all the time for the duration. It is to help break the pain cycle. He said it is hard to do as I have been sick for a long time. All my body knows now is pain. The nerve pathways are pretty messed up. So I am scared but want to try this as no doctor has anything to try for me for the horrible pain. We are looking at doing this the beginning of Feb. So this dr. is certainly doing me a huge favour by trying to help me. I pray to God that this will help me. Please pray along with me if you are the praying type or send some vibes my way. Thank you in advance my HW family and friends!!!
 
Suzane

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 1/16/2010 11:19 PM (GMT -7)   
Suzane,

That is really good news! I am happy for you that this may provide you relief from these headaches... I have heard some about this treatment from my PM office, and from reading I've done online. For most, it's a last "resort" type thing...but I've heard it's worked miracles for those that it has helped. Like for people that have tried everything, including getting the intrathecal pump, and that are still having high levels of pain. I wouldn't be able to be cleared for it, due to the cardiac issues that I have...so I've never looked further into it. But, for many here, it will be really good to hear of your experience w/ the infusions.

I really hope and pray for you that you will find not only relief w/ the infusions, but that it will reset your pain pathways, and that you'll be able to get over these headaches and such. I really hope that for you... and will keep you in my prayers.

Good luck, Suzane! --Tina
Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; I also have Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Hypoadrenalism; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; Depression/Anxiety; etc etc

Meds: MS Contin; Dilaudid; Actiq; Soma ; Neurontin; Atenolol; Midodrine; Phenergan/Zofran/Reglan; Effexor; Synthroid; Prednisone; and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 1/17/2010 3:25 AM (GMT -7)   
Suzane,

Have you ever taken Ketamine before? Please be careful and make sure you are monitored well during this event. I had Ketamine one time back when I dislocated my jaw, and apparently had a bad reaction to it. They just gave me the dose recommended for my weight and I stopped breathing. It wasn't for long, I was in the ER and they brought me back pretty quickly. That med just scares me now. I always make sure all doctors know about my reaction to it so they won't take the chance and give it to me again. Maybe I'm allergic to it and that's what caused my reaction, and maybe you won't have a problem. I just wanted to let you know about it just in case you hadn't had it before.

I really hope that this treatment works for you. You deserve some relief from this horrible pain that has been plaguing you for so long! It sounds feasible that getting rid of the pain this way might actually work! I'm glad you were able to find someone who thinks he can help!

I'll keep you in my thoughts and prayers, and please let us know how it goes!

Take care,
Tammy
Fibromyalgia Dx November 20, 2009

Pain issues: Pain in neck and upper/lower back, chest/ribcage pain, Degenerative joint disease in both knees, migraine headaches, very painful menstrual cramping, pelvic pain.

Meds: Neurontin 300mg.

First PM appt on February 5th!


Tammy <3


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 1/17/2010 12:27 PM (GMT -7)   
Hi Suzane,

So glad that you found something new to try! We looked into a ketamine infusion for me. I even went special and saw a big-shot doctor in the city who used to do it a lot, but they apparently aren't doing it very often in the USA anymore. At least not in my area.

I'm shocked that they are letting you do this at home, though! How often is the nurse going to come to check on you? Is the doctor going to come check on you as well? In the USA it has to be done in a hospital & from what I've heard, I think that's where I'd want to be anyway. Ketamine is a really really strong anesthetic & analgesic. We commonly use it as an anesthetic (with the bonus of analgesic properties) in veterinary surgery. I'd be too afraid that I'd have bad side effects/of the risks to not be monitored.

Don't get me wrong, I wish you the best of luck & pray that the infusion will help your pain, but I'm a little worried. I just want you to be safe! I don't want anything to happen to you, my friend! Best wishes for a safe & successful infusion.

hugs,
Skeye

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 1/17/2010 2:05 PM (GMT -7)   
I have also heard of using Ketamine.  When my PM discussed it, it was also as a last resort.  I understand wanting to break this horrible cycle that you are in, but doing an infusion of this nature at home has me worried.  Why doesn't he refer you to a collague that has adult admitting rights. Your pediatric anthes. could work together with an adult PM or aneth.  This way you would get 24/7 monitoring.  I would be afraid to have an infusion of this nature done at home without any medical back up.  When my PM discussed the idea, there was no doubt that it was do be don't in the hospital while being monitored in a step down unit.
 
If nothing else, I would get a second opinion that this is a safe at home infusion procedure.  You don't want to take any unneccesary risks just because he does not have an adult license to practice.

Stella Marie

Moderator for Chronic Pain and Epilepsy

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, myoclonus, central apnea, collagenous colitis, joint and body pain, swallowing and respitory  involvement,  Implants: intrathecal pump & neurostimulator.  Extra features: O2 & wheelchair.

 

 


privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 1/17/2010 2:07 PM (GMT -7)   
Suzane,
I'm sure it must have been nice for a change to find someone that wants to help you get over this craziness. I'm not real sure about ketamine other than it rings bells for tonsillectomies back when I worked the floors. I'm sure your doc has all the data and wouldn't suggest it if he didn't think there would be some type of up instead of all downs. I will be praying for you and your family that this could work out for the best for everyone!!!

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 1/17/2010 7:11 PM (GMT -7)   
I did an internet search on low dose sub anesthetic ketamine infusions . It does seem to be helpful in cases of CRPS and RSD where it has been performed far more than in other chronic pain situations.
 
Quoting here "

The study was initiated by Graeme E. Correll, B.E., M.B.B.S., and involved reviewing the medical records of 33 patients with CRPS treated by Correll. The patients, some of whom had failed to obtain pain relief from conventional therapies, were treated with low-dose inpatient intravenous infusions of ketamine between 1996 and 2002 in Mackay, Queensland, Australia. Ketamine infusions were started at very low rates and were slowly increased in small increments as tolerated by selected patients. The therapy was then continued as long as the patient tolerated the drug and continued to benefit from it. Treatment cycles generally continued until the patient experienced complete pain relief; until initially-obtained relief would not improve any further; or for no more than 48 hours if there was no improvement in pain severity.

Pain was completely relieved for 25 (76 percent) patients, partially relieved for six (18 percent) patients, and not relieved for two (6 percent) patients. Although the relief obtained did not last indefinitely, 54 percent remained completely pain-free for three months or more and 31 percent for six months or more. For 12 patients who received a second treatment, 58 percent experienced relief for one year or more with 33 percent remaining pain-free for more than three years.

The most frequent side effect reported was a feeling of inebriation. Hallucinations occurred in six patients with less frequent side effects including complaints of light-headedness, dizziness and nausea. Liver enzymes were altered in four patients but resolved after therapy. " end of quote

I will see if I can find any studies that includes patients on in home monitoring. It seems to me that I recall reading  other studies about ketamine infusions but don't recall if there was inhome monitoring performed.

Sandi


PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 1/17/2010 7:27 PM (GMT -7)   
Here is a study on ketamine infusion that includes patients who have had tmj and other head pain.........
http://www.anesthesia-analgesia.org/cgi/content/full/97/6/1730

Hope this helps.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 1/18/2010 9:51 AM (GMT -7)   
   Hello Suzane...we truley hope this works for you!.....Deborah and I have everything crossed we can get our hands on :)  You and I have visited several time a day with your problems...so Im pretty up to date on your story.....We just feel so bad for you.....I wish there was something I could do for you....but the only thing I can do is pray for and support you on a daily basis. You know we both love you and will be thinking about you too. You have been a wonderful friend...and I greatly enjoy visiting with you. Take care my wonderful friend! Fingers crossed! :)   If this works out.....Im willing to bet your going camping! :)
 
           Michael & Deborah

melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 1/18/2010 10:39 AM (GMT -7)   
Suzane,

Its so great that you have someone so willing to be an advocate for you. I too am a little nervous about the home care portion, but I am really looking forward to you telling us that your headache is gone and that you're doing great!

Jenna
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Tramadol, Flector Patches and a semester off of school!

“Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.” - Lance Armstrong


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 1/18/2010 11:27 AM (GMT -7)   
oh suzanne!!
i am keeping everything crossed in hopes this will do you some good!! At least someone is willing to try and that has to make you feel a little bit better. Hers' prayers that it goes well and you have only good news to report!
cat
sick and tired of being sick and tired


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 1/28/2010 10:31 PM (GMT -7)   
Sorry I have not replied, but I have not been doing well.
Thanks for all your comments and the prayers you are sending out for me.
After my episode last night this treatment can't come fast enought.
We will be starting next Wed.
I will keep you updated.

Hugs my friends
Suzane

bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 1/29/2010 1:27 AM (GMT -7)   
Suzane, good luck with the procedure next week. Keep us posted when you can. You didn't say what happened last night but I hope your feeling better now.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 1/29/2010 11:02 AM (GMT -7)   
bsjaguar said...
Suzane, good luck with the procedure next week. Keep us posted when you can. You didn't say what happened last night but I hope your feeling better now.

 

What happened the previous night was that my headache was out of control. I was screaming and crying. It was just the worst ever. I just wanted to die.

 

It's back to its 10/10 now but I feel so sick and weak. My husband says there is no such thing as 15/10 but that headache was 20/10. I'm living it so I know it.

 

Hope everyone has a lovely day. We must all hang in there! I wish my CP friends lived closer to me!!!

 

 

 

 

 

 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 1/29/2010 11:21 AM (GMT -7)   
Suzane I am glad you may have a chance at getting a break with the pain. But, with that being said I really think your dr should get one of his buddies that has hospital privileges to admit you and administer the drug in a hospital setting. I have read about this medication a long time ago and then went back and refreshed my memory again. There is the potential of too many bad things happening to consider doing this at your home. I understand your desperation in wanting relief and no one blames you for that. We all know you have suffered far too long. What is the big deal with him getting one of his associates to admit you? Has your insurance company approved you getting the drug at home? Just worrying for you, not trying to rain on your parade.
 

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 1/29/2010 1:24 PM (GMT -7)   
There are no beds for admission for this type of procedure. He has no collegue that admits for this. He obviously is going to give me a safe dose and slowly increase. He does this with his palliative patients that are at home.
This is my last choice for pain relief. I just can't be like this the rest of my life, lying in bed with ice on my head and suffering. What is that. I don't even have a minute with relief.

Suzane

catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 1/29/2010 2:06 PM (GMT -7)   
suzane
i am so scared for you but at the same time everything I have is saying " go for it". head pain is such a terrible animal. I've been dealing with it for the past 9 almost 10 years now with  no relief as well and I think we  are willing to try almost anything to get any kind of relief. I pray your doctor is careful. I hope you trust all the little hairs on the back of your neck and they don't give you any bad signs and please know we will all be here praying for you. I wish you all the best. Please keep in touch either way. Trust in yourself to make the right choice.
cat
sick and tired of being sick and tired


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 1/29/2010 2:28 PM (GMT -7)   
Cat
Tell me about your headaches.

Suzane

catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 1/29/2010 7:14 PM (GMT -7)   
Suzane-
my head pain started as severe jabbing pain in the right ear, a constant pressure in my head,- picture a bobber sitting in a glass of water, then press it down in the water, as the water fills all around the bobber,- thats the "pressure that constantly rises in my head,,or that constant rising, throbbing feeling, picture yourself at the ocean and a wave comes and knocks you over..that :whoosh", I get those" whooshes" out of the blue throughout the day some time so severe that they literally knock me over., i have this constant throbbing, the right side of my face will start to burn for no reason at all while my right eye will just start to tear and my right eye will start to  blink...there is tenderness over my entire head. Ever since I had the cryoprobes I have throbbing pain in the back of my head that feels like someone is jabbing thousands of pins into my skull. There is a spot right above my right eye socket that feels as though someone is constantly jabbing an icepick into it. It is just below where I have my nerve stim implanted so the stim offers no relief to it. I can no longer lay on my back because I can't put the back of my head on the pillow. Most nights I can't lay on the right side because the connectors for the stim are right behind my ear and it is so tender that I can't lay my head on the right side of my head. If I go to any change of temperature, say from one room to the other , I experience the "thousand pins jabbing" throughout the entire head so I pretty much have to stay in one place. I have to stay where its colder, cold seems to help. It can be snowing and cold but I will be in my room with the air conditioner on while the rest on the family is in the living room with the wood burning stove going. I just can't take warm temp.There are days when I can't wear my glasses because my face is too tender to have my glasses on. And there is always the throbbing, always the throbbing, sometimes I just wonder if slamming my head into the wall might make it stop.
does any of this sound familiar?
cat
sick and tired of being sick and tired


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 1/29/2010 7:31 PM (GMT -7)   
That's not the headaches I have. Mine is a continuous pain, pressure like, bilateral temples. I started out with tmj but that has been corrected now and the same pain remains. No one can figure it out. I have tried everything and this ketamine infusion is the last resort.
What have you done to find out what it is, sounds like a trigeminal nerve problem. Are you on your last resort for helping your headaches? It's not fun eh!
How old are you? children? can you work? I am 51 soon 52. My children are older so that is less work on my hubby and am on long term disability.

Hope you have some relief soon.

catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 1/30/2010 7:12 AM (GMT -7)   
i am beyond my last resort. I have been with this supposed  expert pain doc and agreed to all his nerve blocks and cryoprobes and nerv stims and pills and pokes and being shown to his students as an example of a "prime case". He is the 13th doctor I've seen in this journey. I've agreed to everything hes' asked me experimentally to try and  now he is suggesting perhaps I go elswhere, Johns Hopkins maybe( not an option, I owe so much money I just can't afford to try some place new and beside, this was a major teachinf hospital,why would I think they would know more?)..or maybe learn to live with it ( not an option, I've tried that for 9 years now..I think that was long enough)..so yeah, I think I  have reached the end of my rope..
 
I can't work, I did for the first 4 years of this , as a caseworker in the mental health/developmentally developmentally disabled field, was preparing to go back to school for my PhD....thats all over.  Now I am also on disability. I have 2 children. One graduated form college last may, the other will graduate this may so they are ready to be on their own if they can find work in this darn economy...
Everything had been falling into place until this happened... sometimes really thorws you a great big curve ball, ya know?
cat
sick and tired of being sick and tired

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 12:23 PM (GMT -7)
There are a total of 2,735,433 posts in 301,303 threads.
View Active Threads


Who's Online
This forum has 151408 registered members. Please welcome our newest member, ChristineMdic.
317 Guest(s), 9 Registered Member(s) are currently online.  Details
DBwithUC, FearBug, reminder, LG13, Faustmann, ChickenArise, Tim Tam, rcmark, tommyc


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer