headache & pituitary tumor update

[sickandtired456]

I know a lot of you out there suffer with headaches and have pituitary tumors/issues. A few months before my 3mm pit tumor was discovered I started having a different sort of headache I never had before. Its a shooting, electric- stabbing pain that starts in the neck goes around the back of my head and sometimes down one side of my face. Also have intense pressure behind my nose and roof of mouth. It gets worse when I lay down (tuck my chin to chest) and frequently wakes me up in the night, its worse in the morning, but can happen anytime of day or night. Endo-neuro says unrelated to pit tumor and set me up with a neurologist.

Neuro is calling it Occipital Neuralgia and SUNCT. Apparently, when someone is super tense or anxious the muscles in the back of the skull, neck and shoulders tighten so much they squeeze the blood vessels and nerves shut which causes the shooting pain and pressure. I got a script for physical therapy which I will start next week. Neuro also says elevated prolactin levels can cause the SUNCT headaches as some people have higher prolactin levels at night. She said Cabergoline, Gabbapentin, Ibuprofen, exercise, massage, de-stress and lose weight. So for me I guess the stress of something being wrong with me is causing me to hurt more. I think endo's and my neuro-endo just routinely dismiss headaches in people with micro adenomas, like if it isn't macro and pressing it can't cause a headache. I strongly disagree. I think it's all related. I find the prolactin/SUNCT connection interesting and plan to read up more on it

[sickandtired456]

Dang. Not the answer i was hoping for. I also call it voodoo pain, like someone is sticking me with a pin. It was quite shocking at first (no pun intended!) if it happened while i was talking to someone or driving the car. More used to it now and I just roll with it knowing it will be gone quickly, but the number of times it is happening per day is going up :/

Thanks for sharing your experience & knowledge, it makes me feel less crazy and alone in this.

[LucyEvony]

It wasnt a quick fix

I got relief with in a few weeks but each time they tried to take me off the carbamazepine it came back. Probably took about 5 yrs before i could come off meds and not have issues.

I used to have feelings like someone was sticking an ice pick thru my brain !!!
i thought someone didnt like me and had a voodoo doll lol

Wasnt very nice

[sickandtired456]

Another question for Lucy, how long did it take for carbamazipine to make the ON go away?

[sickandtired456]

Hey Lucy
I think carbamazipine is in the same class as the gabbapentin I'm taking. It's also an anti-seizure med. My neuro never mentioned nerve damage to me, but I'll ask next visit. Currently suffering from like 50 or so nerve shock headaches a day, thankfully they hit and are gone in a few seconds. The tingling and painful hair I can live with for the moment. I can't wait to get rid of this tho.

[LucyEvony]

Yep !!! As soon as i read your first few lines of your post i was thinking Occitipal neuralgia.

My Neuro didnt say anything at all about anxiety.

I had ON and it was caused by damage to the nerve ending caused by unstable blood sugar levels in diabetes.

I was given carbamazipine....worked like a dream ( its normally used for Seizures, but also works well for ON states. )

I couldnt brush my hair, couldnt touch that area of my head it was just so painful. All resolved now though :). Im off the carbamazipine and no Occipital Neuralgia in sight :)