Does anyone else suffer from migraines and TN??? My neurologist says they are related. I have had migraines, as long as I have had TN, but not as bad as they have been in the past 8 weeks, 13 counting today. They are usually there when I wake up, except this one started at 8:00 p.m. last night with no warning. I have started trying everything. No caffeine, no chocolate, no computer after 6 p.m. and limiting it during the day, no TV after 8:30, I read now to go to sleep, I irrigate my sinuses every day. I put ice on the base of my neck. I am open to any new suggestions. More importantly does anyone else have this too. The only way to get rid of my migraines is to go to the ER and get a shot of demerol. Nothing else works. Tripitans no longer works for me. My body has become immune to them. My neurologist gave me oral demerol and it doesn’t work, helps the nerve pain though. My neurologist says I am one of his worst cases he has ever tried to treat. He has run out of options. I have an appointment with the Lahey Clinic in Massachusetts on January 25th and an appointment with a pain clinic on January 8th. I am looking for any suggestions and to see if any of you have this same problem. I am open to anything.
I am so sorry you are suffering so badly. I went to the Arnold Pain Clinic in Boston, but Lahey Clinic is good too. Good luck!
Hey Lena,
I haven’t been diagnosed with TN (although I suspect this is what my pain is), although I have a long history of migraine variants.
I dont get a headache with them at all. I actually have prolonged aura (derealization) without infraction. And then I get these weird type of ‘attacks’ on top of that. They are a lump of scary and weird neurological symptoms that last about 15 seconds. It took me 10 years to get diagnosed. I had almost immediate relief on a abortive migraine medication (sandomigran).
Sooo … one thing I will suggest to you:
Low Magnesium levels can lead to migraines. I have had blood tests, and my levels showed up fine. Although thanks to my clever GP - she did a urine collection and the results showed an absolute rock bottom count with magnesium. Apparently blood tests aren’t a true form of magnesium levels.
I started taking Mag suppliments before I went on the Sandomigran and the results were quite good! I defiantly had some (minor) improvement with the Mag. So that maybe something you might like to chat about with your Dr.
Almonds, brazil nuts, cashews and pine nuts have high natural sources of mag. Spinach is SUPER high with Mag - I make heaps of fresh salads with baby spinach leaves. So you could try naturally boosting your mag intake through natural sources like above.
I would also like to suggest … finding a really really really really really good Chiropractor can be a gift from above! I found a fantastic one, and she does a lot of cranial work. Turns out, my skull is totally locked up and my neurotrasmitters aren’t ‘working’ properly. Its this really long story about how she came up with all of this, and it was pretty amazing, but she is defiantly dead on the money. She has a slight holistic approach.
Its very interesting to take a broader approach to a localised problem. I think, if you put your feelers out - ask friends or family if they know of a good Chiro - defiantly check it out. Only thing is; most Neurologists don’t really like Chiro’s as they make spinal ‘corrections’ which they don’t agree with. So I would defiantly say do your homework. My Chiro does very light corrections. There is no cracking of the spinal cord or neck. She is very good.
So those are my two suggestions. Look in to your magnesium or try and boost your in-take naturally, and have a bit of a look around and see if you can find a GOOD Chiro who does cranial work.
Good luck to you.
xx
I also have migraines and TN. The migraines started many years before the TN for me. All of the things you have described are the basics that I go through, so I don’t know how much I can contribute to you for tips on what to do to help decrease them or end them sooner. Just wanted to let you know that you’re not alone in having these issues. You will be in good hands at the Lahey Clinic. I grew up in MA and they were supposed to be one of the best. I’ll be thinking of you. Keep us posted.
Thanks everyone for the suggestions. I have had 2 MRI,s the last one was with contrast. I am glad to hear that the Lahey Clinic is really good. I am going to try to get in to them sooner than Jan 25th.
Lena,
I also have a history of migraines. My neuro told me that most people with TN have migraines. Both the neuro and the surgeon told me to keep the migraines under control. In fact, a really bad migraine along with TN later in the day led to my increasing pain and resulting in surgery. I take Axert. It works for me but I have to start it at the beginning of a headache. Sleep helps mine but too little or too much can also cause a migraine. I hope the pain clinic will be able to help. My surgeon prescribed magnesium, calcium C, and B vitamins. Both neuros had prescribed B vitamins prior to my surgeon.
Liz K.