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Old 10-26-2010, 04:08 PM   #1
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What can help with Trigemnal Nerve Pain :(

I suffer from nerve pain assocaited with Chairi malformation. Even though I am decompressed, the nerves that were compressed are now mad, dead who knows. It's been over a year.

I have permanet damage to my trigemenal nerve, possibly sensory nerves and optic nerves.

I am on a LOAD of meds every day to help control the pain. Between all my meds I am on 9. The ones for nerves are lyrica and lamotragine. Both I am nearly maxed out on. I have other conditions that were irratated by the decompression, but they do not cause me severe pain.

I know no one is a doctor, but what else is out there? What can I do to control this never ending pain? Just when we think it's under control, it's back again.

Help... I am at a painful loss here!!

 
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Old 11-01-2010, 09:58 PM   #2
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Re: What can help with Trigemnal Nerve Pain :(

Quote:
Originally Posted by monkeymom View Post
I suffer from nerve pain assocaited with Chairi malformation. Even though I am decompressed, the nerves that were compressed are now mad, dead who knows. It's been over a year.

I have permanet damage to my trigemenal nerve, possibly sensory nerves and optic nerves.

I am on a LOAD of meds every day to help control the pain. Between all my meds I am on 9. The ones for nerves are lyrica and lamotragine. Both I am nearly maxed out on. I have other conditions that were irratated by the decompression, but they do not cause me severe pain.

I know no one is a doctor, but what else is out there? What can I do to control this never ending pain? Just when we think it's under control, it's back again.

Help... I am at a painful loss here!!
Tegretol (carbamazepine) has been the medication of choice for trigeminal neuralgia, so it should be something your doctor would want to consider. Another drug related to Tegretol is called Trileptal (oxcarbazepine) and may work as well as Tegretol but with fewer side effects.

Other drugs commonly used for neuralgia include Elavil (amitriptyline), Pamelor (nortriptyline), Klonopin (clonazepam), Neurontin (gabapentin), Remeron, Cymbalta, and (less commonly) Keppra and Toradol. These are just a few of the drugs I've taken at one time or another, and there are many more. Keep trying until you find one that works. It can take a long time before you find something that works, and you may have to convince your doctor to try something different. I assume you're under the care of a neurologist for your Chiari malformation, so try talking to him/her. You may also want to look for a good pain clinic near you. Best of luck!

 
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Old 11-03-2010, 07:43 PM   #3
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Re: What can help with Trigemnal Nerve Pain :(

Tegretol helped me, but I'm on Neurontin now.

 
Old 11-03-2010, 07:59 PM   #4
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Re: What can help with Trigemnal Nerve Pain :(

Why aren't you taking the Tegretol any more if it was helping? If you had problems with side effects, Trileptal might be worth looking into.

 
Old 11-04-2010, 06:11 AM   #5
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Re: What can help with Trigemnal Nerve Pain :(

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Originally Posted by jverive View Post
Why aren't you taking the Tegretol any more if it was helping? If you had problems with side effects, Trileptal might be worth looking into.
The neurontin helps with my all over nerve pain. I'm not taking both.

 
Old 11-07-2010, 11:18 PM   #6
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Re: What can help with Trigemnal Nerve Pain :(

Quote:
Originally Posted by Cblewife View Post
The neurontin helps with my all over nerve pain. I'm not taking both.
Are you not taking both because you don't want to take more meds, or because your doctor doesn't want you on both? If it's because the doctor doesn't like the combination of Neurontin and Tegretol, adding Trileptal to the Neurontin may be a worthwhile choice.

What other meds are you on? When I was initially diagnosed with occipital neuralgia, I was on numerous meds too. However, by trial and error - and perhaps some improvement in my overall condition - I'm on far fewer meds.

By the way, have you had your Vitamin D levels checked in the past two years? Many pain syndromes are exacerbated by low Vitamin D levels, especially since people spend less time outdoors than they used to. My rheumatologist starting checking my Vitamin D levels and found that I was seriously deficient. After just weeks of starting high-dose therapy (50,000 I.U. of Vitamin D once a week) my overall pain levels dropped significantly (I also have occipital neuralgia.) I have been able to cut most of my meds to a small fraction of what dosages I was taking, and I feel so much better!
It is so easy to check, and is worth checking.

Jeff

 
Old 11-08-2010, 02:33 AM   #7
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Re: What can help with Trigemnal Nerve Pain :(

The list of medications that I am on are:

Synthroid - Hypothyroidism (present before pain management was needed)
Ritilan - ADHD - also present before all of this
Lyrica - 100mg twice a day for nerve pain
Lamotragine - 200 mg twice a day for nerve pain
Diamox ER - 500 mg twice a day prescribe by Neuroptomologist for extra fluid buildup
Klor-con M m20 once again for the fluid buildup
Furosemide 40mg twice a day potassium supplement
Pramipexole .25 treats RLS
Indomethacain 75mg once a day for extended daily pain management
Pramipexole .50 (night dose for RLS)

as needed - tylenol 3 for pain break thrus.

I am going in to have an EMG done next week. The neurologist wants me to also look into the placement of a shunt - He thinks it would get me off some of the medications I am on.

I am at a loss...I wonder if I will be in pain for the rest of my life... do I just need to accept forever pain as a part of my future??

 
Old 11-08-2010, 08:26 AM   #8
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Re: What can help with Trigemnal Nerve Pain :(

Have you looked into vascular decompression surgery for the trigeminal neuralgia? Check with the Facial Pain Association and see if they have an approved neuro in your area. Otherwise, I recommend the TM clinic at Presbyterian Hospital at U of Pittsburgh. My sister had the surgery there and had a great success from it.

 
Old 11-08-2010, 04:55 PM   #9
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Re: What can help with Trigemnal Nerve Pain :(

You are surely on a lot of meds. Have any of them made a big difference in controlling your nerve pain, and have any not seemed to help much at all? I'm sure that you and your doctor(s) would hesitate to add many more meds to the mix, but if some aren't helping much, substitution may be in order. Both the Lyrica and Lamotrigine are for nerve pain, so one or both may be changed to try something else, such as Cymbalta or another SSRI/SNRI med.

Permanent nerve damage is awful. I have it as a result of several surgeries, but luckily I am able to get by on just a few meds (with Cymbalta helping the most.) Keep pressuring your doctor(s) to put you on the minimum meds that provide the maximum benefit, and make sure you get your liver checked at least twice a year.

You MAY benefit from lose dose opiods, since you are using the tylenol-3 for break-through pain. Vicodin or Suboxone may help, with the latter perhaps better suited for the mix of meds you're already taking.

Decompression surgery might be an option if your trigeminal nerve hasn't been permanently damaged. Only your neurologist/neurosurgeon would know that for sure.

Best of luck. I can't say that I know your pain, but I do understand what permanent nerve damage can do to you. Try not to give up.

Jeff


Quote:
Originally Posted by monkeymom View Post
The list of medications that I am on are:

Synthroid - Hypothyroidism (present before pain management was needed)
Ritilan - ADHD - also present before all of this
Lyrica - 100mg twice a day for nerve pain
Lamotragine - 200 mg twice a day for nerve pain
Diamox ER - 500 mg twice a day prescribe by Neuroptomologist for extra fluid buildup
Klor-con M m20 once again for the fluid buildup
Furosemide 40mg twice a day potassium supplement
Pramipexole .25 treats RLS
Indomethacain 75mg once a day for extended daily pain management
Pramipexole .50 (night dose for RLS)

as needed - tylenol 3 for pain break thrus.

I am going in to have an EMG done next week. The neurologist wants me to also look into the placement of a shunt - He thinks it would get me off some of the medications I am on.

I am at a loss...I wonder if I will be in pain for the rest of my life... do I just need to accept forever pain as a part of my future??

 
Old 11-08-2010, 08:01 PM   #10
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Re: What can help with Trigemnal Nerve Pain :(

I have come LIGHTYEARS from where I started over a year ago after my decompression surgery for Chiari. (base of skull enlarged and half of C1 removed) --

Before the cocktail I pop everyday, just breathing would put me to tears... I couldn't sleep, couldn't eat.... I stayed in soo much pain my children thought that I didn't love them anymore (they even said it... double ouch!) -- Now it is just pain and facial numbness... the wind doesn't always hurt, my teeth do not feel as if they are being pushed out, breathing without as much pain is a BIG plus. The meds are helping... I just wonder if they will every be enough... should I just accept the fate of pain for the rest of my life. Do not mean to sound doom and gloom, just trying to get a realistic idea.

I have never had to juggle this many specialists in my life. My neurologist thinks a shunt would help, but I hesitate consulting on that until I have the neuroptomologist's idea on the matter. I know it is my health and I should do what I feel is best... but I am also not a medical professional with years of dealing with the chronic issues that have started to define my life. The neurologist also wants to do a spinal tap, but the point would be mute due to the fact my 2 duritics would keep him from getting an accurate reading.

My stomach is in knots. I am not an anxious person, nor do I normally worry... I just guess I am getting anxious over the fact I want to know if this is going to be a longer term or a REALLY longer term....so I can plan around it effectively.


 
Old 11-08-2010, 10:09 PM   #11
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Re: What can help with Trigemnal Nerve Pain :(

I can't claim to understand your particular pain or the other things you're dealing with, but I also have dealt with extreme pain since my first nerve surgery some 32 years ago, about 6 months after I graduated from high school. Since then, I have seen around 60 doctors and have taken over 50 different medications (I stopped counting both when they reached 50.) I've also had a dozen surgeries to either cut out neuromas, remove scar tissue, insert nerve stimulators, try new stimulator electrodes, reposition the electrodes, and attempt to do the stimulation at the spinal cord (dorsal column.) The only things that haven't been tried are deep brain stimulation, motor cortex stimulation, periaquaductal grey stimulation, a morphine pump, and direct administration of anesthesia to the occipital nerve (the nerve where my trauma occurred.)

When things really started getting bad, mere puffs wind on my hair would trigger knife-like pain in the back of my head. Sometimes the pains would come even without anyything touching my head. However, that would have been preferable to the year and a half that I was bed-ridden because of constant, severe pain. I literally spent only hours out of bed during that time, and most of that was to see my doctors. I honestly don't know how I managed to keep from going insane. At the very height of my pain, I was taking over 300 mg of straight oxycodone each day, and the pain was unbelievable. My children were 14 and 11 at the time, and it was difficult for them to see their normally active, happy dad in such agony.

It all came to a head on July 2nd of 2007, when I managed to overdose on the oxycodone. Luckily, an addictionologist was on call covering neurological rounds the next day, and he switched me from oxycodone to Suboxone (buprenorphine plus naloxone.) I have since reduced my narcotic usage almost to nothing, and should be off of it by the end of this year (2010.)

Another thing that made a HUGE difference was a finding that my vitamin D levels were seriously deficient. Within weeks of starting high-dose (50,000 I.U. per week) of Vitamin D, my overall pain levels dropped significantly. In fact, that is what allowed me to cut back on the narcotic and also allowed me to reduce the only other med (Cymbalta) that I've been using for nerve pain.

In the process, I have learned better coping skills, and that has allowed me to decouple the suffering from the pain. It's mostly a forced relaxation technique, where I can allow the pain to exist without affecting me as much. If there's anything positive to say about constant pain, it's that somehow the body can often learn to compensate by allowing the conscious mind to disregard the pain as not being a real threat. What I have most of the time is the equivalent of a bad headache, but I've been lucky enough to be able to tolerate it with adequate nutrition, exercise, positive attitude, and being able to be an active member of my treatment team. I had to "fire" several doctors before I found a couple of really good ones, and that has made a tremendous difference.

My marriage did not survive the stress, but at least I'm on speaking terms with my ex. We had our share of normal relationship issues, but there's no doubt my illness was the major factor.

I urge you to make sure your vitamin levels are checked. Vitamin D levels are chronically low in much of the population, possibly because we work and pursue recreation indoors much more than previous generations. It's such a factor in chronic pain that doctors are now being told to check blood levels of Vitamin D for all muscoluskeletal pain syndromes, especially when the pain levels are not commensurate with the amount of trauma or disease.

Best of luck. < edited > Finding others with similar stories has helped me realize that I am not alone in my struggle, and you need to know that you are not alone, either.

Jeff

Last edited by hb-mod; 11-09-2010 at 01:48 AM. Reason: Please don't post personal info such as real name, email or phone.

 
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Old 11-09-2010, 12:54 AM   #12
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Re: What can help with Trigemnal Nerve Pain :(

Thank you to all... after reading the last post, I will get my Vitamin D levels checked. I will review my hospital records (I keep a binder with all my medical junk, tests. mri disks and results) -- I think this test has been run before. I do drink milk a lot, but that may not be enough to keep the levels up.

What type of meditation is used?? Would pilates be something that could relax?? I also might just need to accept that I need more "down time" - ignoring the pain and choosing to keep going and doing might just be making it worse.

 
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Old 11-18-2010, 11:04 AM   #13
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Re: What can help with Trigemnal Nerve Pain :(

Hello Monkeymom! I feel for you. I'm not familiar with the Chari malformation, but I am very familiar with the TN. I suffered with it for seven years.. I took the neurotin, tegratol and the elavil among others. Fortunately, for me, they didn't do anything for the pain. They would work for about a month and then the pain would bleed through and I'd have to increase the meds which I hated doing. I actually had more success with doing power yoga than anything...Eventually what happened was that my balance was became a real issue along with dizziness and we discovered thru a very slow hearing loss that began in my 20's that I had a tumor called an "accoustic neuroma". Not cancerous, but had to have it out and since then no more TN. Hope it helps and good luck to you...

 
Old 11-18-2010, 11:13 AM   #14
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Re: What can help with Trigemnal Nerve Pain :(

Hello Jverive! Wow! And what an experience you've had. I am so glad to hear you are almost off the narcotics. And it is unfortunate to have to go through so much pain to learn that we can cope with it and that there are very helpful treatments that can be so simple and have more to do with the mind that anything. I had TN for quite a while (7 years) and also had a neuroma. Once that was removed, I healed very quickly from the the pain. I hated taking the meds because they really didn't seem to work very well. Luckily for me, I decided to focus on the small windows I had that were pain free. I used those windows to brush my teeth, eat, talk etc. I also did ashtanga yoga every day for a year and that also helped. I like my sunshine and I still a very low reading on Vit D so thanks for putting that out there to everyone. It's so easy and inexpensive....Take care, good luck and keep your chin up, you've come a long way!

 
Old 11-18-2010, 02:25 PM   #15
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Re: What can help with Trigemnal Nerve Pain :(

I have been drawn for my vitiman d levels. The neurologist did an EMG on my lower legs - I have neuropathy in both legs. Some nerves did not respond. I know it has no direct relation to my TN, but does show I guess nerve damage somewhere in my body. Does the EMG confirm nerve damage?

 
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