Headaches!

Hi all- have a quick question for you all? I had been able to mostly get my TN under control with a few meds…but then 7 days ago, I got this HORRIFIC headache on my right side, and it has still not gone away!! I went to the ER just to get my brain checked out, and they said everything looked “normal”…of course :slight_smile:
I can’t get my neuroligist to call me back, so am wondering if you all have any experienced with headaches and TN?? I’ve tried all the migraine cures that I can think of! I’m desperate and in need of help!!!

Hi GirlygirlKatie. I also struggle with migraines and have recently found myself needing to go to ER as well. My migraines are not always on my TN side. I saw my neurologist yesterday and we talked about this and decided to try nerve blocks in the occipital nerves to see if that would help. These horrific headaches come on very suddenly and involve severe tremours of my legs as well as sensitivity to light and nausea. I have been given Torodol for pain and Maxaran for nausea via I.V. I have been getting these types of headaches about once every 4 months for the past year.

I hope your GP can get your neuro to make contact and develop a plan to help you with this pain. I wish you relief and strength.

I was getting severe migraine symptoms on my left side almost daily for about six months. A lot of people have success with Triptans for migraine pain or Propranalol

Yes, I suffer everyday with Atypical face pain...twice in ER this week. I am meeting with yet another specialist on 23rd and will be considering balloon compression or nerve block...

Have you stopped any meds recently? This can bring on migraines that won't stop until you start them up again, in small doses. Then go off them slowly

It sounds like you have:

Status Migraine as A debilitating Migraine attack lasting for more than 72 hours.

It is serious and you need to go back to the ER. Have someone drive you. Put a cool wet towel over your eyes, because no doubt lights hurt, and call your doctor so he/she can call ahead to the hospital to tell them you are coming. Take his/her number and give it to anyone who asks so they know they can call your doc.

. First, they have what you need there and having your doc call them gives you legitimacy. Tell them you can't go home in so much pain, ask them if you can get get a neurological consult (don't expect it, but ask anyway). having a migraine this long needs medical intervention. Migraines don't stop on their own once they have been going on this long.

Tell them you are worried about strokes and make sure you tell intake people, the nurses, etc, everyone! once the medical staff hear the word "stroke", they get serious. It's a legitimate concern, migraines this long can have serious concequences. And if you tell everyone, no one can dismiss it. Because if it's on the forms that you were concerned and the doctor sends you home and something happens - look, the patient told us! They are wondering if you're drug seeking. Fight for yourself. Don't alienate them, be polite.

I know, because everytime I get a migraine, it becomes status Magrainus. I get auras, can's see, can't talk, and end up in the clinic every day. Finally I was sent to a neurologist. I carry around meds that I take at the first sign of an aura or when the light hurts. Migraines are not headaches They are an complex neurological event. They have a week of prodrome symptoms, the event, then days or weeks of postdrome.

Yes I get both TN and migraines and they can trigger each other.

Tina

YES!!!!!!! I just logged in to see if anyone else suffers with migraines. My TN is unique in that I have a skull based tumor on my TN nerve. I've had gamma knife (4 yes ago) but I get the migraines in my sleep & my head hurts all over, especially in the front of my head, behind both eyes, & sinus area. I wake up in excruciating pain. Once I sit up, the pain subsides but continues for several hours unless I take excedrin migraine meds. Laying down, no matter which side I lie on, makes the pain 10xs worse. I'm waking up with them every day. My neuro sucks (he's a sleep specialist). I see a specialist at Duke on the 28th of this month & I take Trileptal daily. Hope I can hold out that long. Right now, totally suffering through it. And it's kicking my but :( Please respond if you are struggling with migraines, get them in your sleep, or find that they subside some when you sit up.

KWMechelle- I've had surgery for Eagles Syndrome- the styloid processes both sides are elongated and are compressing the jugular veins, which is increasing the pressure in my head, giving some Intracranial Hypertension symptoms. Having headaches when waking are quite common with that. I have to sleep semi-upright to stop this. When you lay flat the pressure is worse, sitting up eases it a bit. Just wondering if your tumour is compressing blood vessels giving you the same symptoms, or the tumour itself increasing the pressure? With IH, one of the possible causes is a tumour in the brain. If IH is suspected then a lumbar puncture can be done to first check the pressure, then drain off some CSF to lower the fluid.

Have you tried sleeping more upright? Thinking of you, it sounds very scary and painful...


You are so kind to reply. My tumor is right in the bed of my trigeminal nerve, though it is on my skull and not actually in my brain. I've been told that the tumor is too small to cause pressure but it does sound likely that it is compressing blood vessels. It's in such a dangerous place that brain surgery is the last option but I did have gamma knife to stop it from growing. I've also been told that it's very large for the area that it encompasses. I haven't tried sleeping upright (that idea never occurred to me) but I may try it to get some relief. I'll look up eagle syndrome to learn more about it as I've never heard of it. Thank you so much for your kind reply. Best to yiu as well!
Jules said:

KWMechelle- I've had surgery for Eagles Syndrome- the styloid processes both sides are elongated and are compressing the jugular veins, which is increasing the pressure in my head, giving some Intracranial Hypertension symptoms. Having headaches when waking are quite common with that. I have to sleep semi-upright to stop this. When you lay flat the pressure is worse, sitting up eases it a bit. Just wondering if your tumour is compressing blood vessels giving you the same symptoms, or the tumour itself increasing the pressure? With IH, one of the possible causes is a tumour in the brain. If IH is suspected then a lumbar puncture can be done to first check the pressure, then drain off some CSF to lower the fluid.

Have you tried sleeping more upright? Thinking of you, it sounds very scary and painful...