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Treatment of postcraniotomy headache includes pharmacologic and non-pharmacologic approaches. As you may know by now, a lot of these therapies are not curative, they will not completely resolve the pain, but will improve your symptoms. Unfortunately in some patients, some pain may persist indefinitely, though with time most patients have improvement of their pain without further treatment.
It sounds like you have tried indocin, neurontin, lyrica, and topamax. These medications have been shown to be effective in some patients if they are used in the appropriate dose and given the chance to work. Make sure you have used the maximum dose allowed and have given the medication a chance to work (could take weeks).
Other possible medications that can be used include tricyclic antidepressants such as elavil and certain antiepileptics are effective (even when seizures are not occurring) such as depakote and lamictal.
It sounds like botox was briefly effective for you but wore off; this is an expected feature of botox, and reinjection is indicated if it had provided you with relief. Injections every few months may be necessary, and if they are helpful, you should explore this option with your doctor. Besides this, evaluation at an anesthesia chronic pain program for other types of anesthetic injection may be helpful as well. If you pain persists, evaluation at a non-anesthesia chronic pain program may help you learn to live with your pain and find ways to cope/manage it.
You may benefit from evaluation at a specialized headache center which may be able to provide you with insights as to the cause of your pain and management strategies.
Thank you for using the forum, I hope you find this information useful, good luck.
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 obtain a full history from you and examine you, I can not comment on what the cause of your headache is from. However, I will try to provide you with some information on postcraniotomy headache.
Postcraniotomy headache is not uncommon. Depending on the research study, up to 50% of patients can experience one after a craniotomy. It obviously depends on the location of the surgery as well as the extent. The general features of this type of headache is that it is maximal (worst) at the site of incision and it develops within 7 days of surgery. This type of headache has been classified into two types depending on how long it has been going on: acute post-craniotomy headache, which resolves within 3 months after craniotomy, and chronic post-craniotomy headache, which persists for 3 months following surgery.
The pain is thought to result from predominantly muscle, soft tissue, and superficial nerve irritation rather than from the meninges (covering of the brain) or brain itself. Certain surgical techniques (at the time of surgery itself) can be employed to reduce the risk of postcraniotomy pain.
I will continue this message on a separate post due to word count limitations.