My goal for joining this site is to gain input from those who have had similar experiences as my wife and how to work around the problems associated with the medications. The reason I joined and not her is English is not her first language nor was it mine but I was raised in Texas and she in Mexico. I was a paramedic on a SWAT team 17yrs ago and have the ability to read and understand most technical medical articles. As in the profile a close cousin married a top neurologist who now has over 40yrs of experience and he treats her for free along with free imaging tests. I realize after reading several post one night in my squad car that many on this site have been misdiagnosed. On more than one occasion. This is not the case bases on other test and symptoms.
I was baffled when these attacks began 1yr ago in February. She would wake in the middle of the night from terrible pain just on one side. At first she would try the OTS's meds with no luck. Then I began giving her 5my of hydrocodone, then 10mg, then oneday 20mg. It was on the day I gave her 20mg., that I called my family member for advice and explained the situation. He advised he would call ahead to the hospital and the ER would be expecting us. It was a blessing that we walked in and checked in and the Neurologist came out and took us right in. This was on a Sunday and my family member is in the process of slowly retiring and he reserves Sunday for spending time with his family. I explained to the doc what was going on and the meds she had taken and when. The doc gave her another 10mg of oxycodone on top of the 20mg of hydrocodone she had taken in the past 3hrs. She was still in pain 30 min later when they took her for a CT scan, which was negative. The doc then gave her a dose of Gabapentin and the pain subsided. We left and filled the prescription. She had an MRI the next day at my family doc and it too was negative.
Now this is where the issues began. Gabapentin worked but with side effects that she does not enjoy. The main one is while on Gabapentin and Carbamazapine she in unable to achieve and orgasm. The hed aches were not regular until recently so she was not dosing or even taken the meds regularly. Her doc put her on 200mg Carba x3 a day. Recently the headaches have become more frequent and two weekends ago she was in bed for three days. Luckily I patrol 2 miles from our house and was able to check on her during the night. On the second day I remembered that we had two Duragesic 26mcgs patched that her mother left when she was here. I called the doc and asked him and he said that is was a low enough dose that it should not make her sick to her stomach, just monitor her and bring her in on Monday. I had told him that she had not been taking her meds regularly and only after the pain starts. He stated that dosing is the only way to prevent this from happening. So for two weeks she has been dosing and having troubles achieving orgasms. We both know it's the side effects of the meds.
My main question here is, do these side effects subside? From reading many posts here 600mg of Carba is relatively a low dose. I am also curious about nerve blocks and the gamma procedure. Her doc is one of the main ones who brought the first one to Dallas many years ago and can get her in quickly. I have read here though that there is no surefire procedure for relief. She nor I want to see her on strong opiate drugs on a regular basis and given the toxicity of Carba I really don't like her taking it. I have been eating organic and taking vitamins all my life and we are both healthy. It is partially my fault for her not dossing regularly after reading up on Carba. Both Carba and Gaba have the same sexual side effects on her. She does not complain but she is my wife and I love her dearly and it is both my duty and job to ensure she is taken care of. Over the 5yrs we have been together she had only gotten mad once. " I forgot to pay the internet bill ". She never complains about anything accept her TN which is located on the right side of her jaw and ear region. I have taken her to a friend who is a top flight prosthodontist/oral surgeon and he scanned her mouth for free and did not see anything that could be causing the pain.The main triggers of the pain is cold water or food and stress. She just bought a business and is working more than usual. I for got to mention that she does take .25-.50mg of Klonopin to help the Carba and it does seem to help.
So ladies will these side effects wear off or is this s problem while on the meds? Are there other meds she can use that won't interfere.
I suggest that you do some further reading in our "Face Pain Info" articles tab of the site menu. Both Carbamazepine and Gabapentin are powerful anti-convulsant / anti-seizure drugs. Thus it would not surprise me if they have a suppressing effect on sexual arousal and completion. I'd like to do a little checking in authoritative medication information sources before confirming this effect.
RE Gamma Knife as a surgical procedure: If your wife is eligible for any surgical procedure, I would personally recommend against GK and in favor of Microvascular Decompression as the gold standard procedure of choice. RF Rhizotomy might also be an option, if her facial pain has primary characteristics of volleys of stabbing electrical shocks. If facial pain is constant 24-7 aching, burning, boring searing in character, then she's dealing with a different variant of trigeminal pain, which is much more resistant to surgeries which introduce scarring on the nerve to reduce its efficiency in transmitting pain.
GK is too often advertised as "non-invasive", in my opinion. I've heard more than one neurosurgeon describe its internal effects in regions of the brain stem adjacent to the target zone as "barbaric". Likewise, published data and standards of the International Association for Radio Surgery acknowledge that 50% of all GK patients relapse into pain within three years. MVD has better initial success statistics and a better long term record of persistent pain relief.
Thank you Richard. Her pain is stabbing with cold liquids and food. But she will ask at times if her face is swollen. I have recently tried heat packs and they seem to relieve some of it. The pain at it's worst is a constant ache with the swelling sensation on the right side of the face. Any input would be helpful. I read the same about GK. But it seems that all the other procedures have a decent failure rate. I don't think she would want a surgery that would last a year or two then back on the meds. I am worried about the long term effects of the toxicity and other side effects of Carba. on her body.
JW I can confirm that several of our female members have confirmed your wife’s problem to me whilst taking Teg or Gab. I have no idea if our male patients here report the same. I am guessing it is all part of the calming things down side of the medication.
Carbamazepine isn't "toxic" or most people, most of the time, JW. Some people do have toxic reactions to this med, and some will deal with Vitamin D or other mineral deficiencies in the blood stream. But in the years I've been talking with chronic face pain patients, I've met many who have successfully managed their pain for years under this class of meds.
With the pain pattern you describe, I suspect many neurologists would diagnose your wife with a combination of Type I (typical) and Type II (atypical) trigeminal neuralgia. The swelling might indicate there is an inflammatory component of pain that isn't seen in all patients with either type of TN. Several anti-inflammatory drugs might be considered in combination with Tegretol, Trileptal, or Neurontin, to deal with that swelling. But in this combination of symptoms, I would expect very few neurosurgeons would recommend rhizotomy or Gamma Knife unless there is an obvious compression of the nerve by blood vessels in the region near the brain stem.
FYI, in a brief review of general literature and patient reports, I see repeated mentions of erectile dysfunction in males and changes to libido and ability to orgasm in females, who are on any of the anti-convulsive medications. So I would have to say these side effects are fairly often encountered in facial pain patients.
JW I can confirm that several of our female members have confirmed your wife's problem to me whilst taking Teg or Gab. I have no idea if our male patients here report the same. I am guessing it is all part of the calming things down side of the medication.
Thanks Jackie....does the body adjust to this side effect?
Sorry to say I cannot confirm or deny. It is par for the course in a support group that we are more likely to report a bad side effect than report it has adjusted back to normal. I hope for an improvement for you both soon.
Carbamazepine isn't "toxic" or most people, most of the time, JW. Some people do have toxic reactions to this med, and some will deal with Vitamin D or other mineral deficiencies in the blood stream. But in the years I've been talking with chronic face pain patients, I've met many who have successfully managed their pain for years under this class of meds.
With the pain pattern you describe, I suspect many neurologists would diagnose your wife with a combination of Type I (typical) and Type II (atypical) trigeminal neuralgia. The swelling might indicate there is an inflammatory component of pain that isn't seen in all patients with either type of TN. Several anti-inflammatory drugs might be considered in combination with Tegretol, Trileptal, or Neurontin, to deal with that swelling. But in this combination of symptoms, I would expect very few neurosurgeons would recommend rhizotomy or Gamma Knife unless there is an obvious compression of the nerve by blood vessels in the region near the brain stem.
FYI, in a brief review of general literature and patient reports, I see repeated mentions of erectile dysfunction in males and changes to libido and ability to orgasm in females, who are on any of the anti-convulsive medications. So I would have to say these side effects are fairly often encountered in facial pain patients.
Some people gain weight on the anti-convulsants, and some don't. My wife has been on 2400-2700 mg/day of Neurontin for over 12 years, and her only side effect has been occasional word-finding difficulty. She's seen no weight gain and no other cognitive disturbances, no vertigo, no double-vision -- all of which I've heard about from pain patients over the years (rarely all effects applying to a single patient). Of course, some people don't fare as well on these medications, which I respect. But it's a pretty much one-day-at-a-time learning experience, individual to each patient.
The Klonopin is rarely taken, only used when it's bad. It the heavy doses of Carba that is causing the lack of an orgasm.
Cleo said:
Most likely its the klonopin but I would really consider being pain free more important than reaching orgasm. I am nerve damaged from a nerve block and I know gamma is not an option in a case like mine.
I can say that tegretol ( carbamazipine)appears to affect female hormones. Its in my drug literature that women taking the contraceptive pill should use additional precautions. Its the same for HRT. Speaking from experience. I have taken HRT for about 5 years. When I was prescribed Tegretol the hot flushes came back with a vengeance. Whilst I did respond to Tegretol when first diagnosed, because I felt like I was operating in a "fog" my Doc changed my medication to Lyrica. Sometimes you just have to be patient and try different meds.