severe headache after tegretol and neurontin

[yakubkarim]

I am 64 year old male, I had bilateral tn.  the first one started when i was 19 on the right side of face. Since tegretol was not available in India in 1965, I had craniotomy in which V2 and V3 was cut, thereby giving me permanent relief from pain but also followed with permanent numbness on right side of face. no pain till today on right side.

In 1974 similar pain started on the left side of face the surgeon diognised as trigeminal neuralgia in the 2nd branch. since than I am on tegretol and gabapentin, both this medicine do control attack, with the help of remmissions i have managed to avoid surgery, as this would lead to my entire face being numb for ever.
The pain has returned just last week, after 2 years remission. I started on tegretol 200mg 3 times a day and neurontin 300mg  twice a day. this is controling the pain, but i am having terrible headache, it is so severe that i cannot bear it. of course it is better than neuralgic pain.
can u please tell me whether this headaches are due higher dose of medication? I also feel nauseatic and drowsy.
or, am i having tumor or something like that.

i am on tegretol and gabapentin for years now, Except remmission period, but  recently i started getting headaches.

should i drink plenty of water to ward off the headaches?  as i am very poor drinker of water due to lack of thirst.  in 24 hours i hardly dring 2 to 3 glass of water.

please let meknow what type of MRI should i undergo to find out whether blood vessel is pressing the trigeminal nerve? and another test to find out  whether i am suffering from MS.  i am also suffering patient of high bp for which i take amias 8mg every night.


thank you.

yakub

[Lama Chahine, MD]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a full history, I can not give you advice on what medication regimen is most suitable for you or what imaging you need. However, I will try to provide you with information regarding trigeminal neuralgia treatment.

The American Academy of Neurology (AAN) has very recently released guidelines regarding trigeminal neuralgia (what I will refer to as TN). TN can be primary (no clear cause) or secondary (to a tumor, vascular loop, multiple sclerosis etc).

Regarding the need for MRI, the AAN reports after examining the evidence that if high resolution MRI is done, in 15% of cases it will reveal a clear cause for the TN. They do not feel there is enough evidence to recommend an imaging to be done to identify a blood vessel abnormality. Basically, there is not enough research yet done on this issue, and it is unclear whether or not it is helpful and which imaging technique is most useful. A high resolution MRI and MRA are what are used, but again, it is not clear if this would benefit all patients with TN.

The AAN found that tegretol and trileptal, and with less evidence baclofen and lamotrigine, and pimozide, have been proven to be effective for TN, but that more research is required regarding other medical therapies including neurontin. If it is helping and not causing too many side effects, then you should continue it per your doctor. Neither neurontin nor tegretol cause headaches as a common side effect. The AAN stated that other therapies, such as procedures on the collection of nerves that gives off the trigeminal nerve (gasserian ganglion ablation, microvascular decompression, gamma knife which is basically focused radiation, and injection) are possibly helpful for cases that do not respond to therapy.

With bilateral TN, an investigation for multiple sclerosis is warranted. This is best conducted by a neurologists. Tests ordered may include an MRI, lumbar puncture, evoked potential (which measure how electricy is conducted along nerves and how the brain responds to it), eye exam, and others.

A moderate amount of water ingestion is recommended: 8 cups a day.

Thank you for using the forum, good luck.

[ChrissieS]

I'm not the doctor, so although I wish I knew what to tell you to relieve your pain, I don't. I just wanted to let you know you were in my prayers. I wish medicine was a lot more advanced than it is. I guess doctors know what to do about some things, but the more family members of mine start to have medical problems, the more I realize how much doctors don't know.

I'm guessing you've already searched all over the Internet for information. The only places I can think of that you might not have thought of are YouTube.com and askapatient.com. I wish they had a magic bullet for you, but obviously they don't. I have found help from these two places for my dad (though not for TN)--usually from other patients, not doctors. The askapatient.com web site only gives information related to prescription medications, but if you look up the name of a drug, there are usually a lot of comments from people who are taking it or have taken it, and they'll often suggest another drug that helped them or eating (or staying away from) one food or another when you take it. If you go to YouTube, do a search for trigeminal or trigeminal neuralgia, and it'll bring up videos related to TN.

I wish you the very best in your future, and I really hope you find relief from your pain. I just don't understand why some people have to endure so much. I really hope your TN goes back into remission--permanently.
Chrissie

[yakubkarim]

thanks for your reply it was of great help

yakub

[susanrn176]

A related discussion, Neuropathy was started.