How many of you are like me and have had a history of migraines before you had symptoms of Trigeminal neuralgia?? I think this is a pretty common factor in TN. I would also like to know if you have a sensitivity to caffeine as well. Thanks!!
Min, I believe you are quite correct in your observation about migraine and TN. There is quite an extensive article in the TN Association Knowledge Base about TN and headaches. Your question gives me the perfect lead-in to introduce it: see Headache and Chronic Facial Pain.
Regards, Red
Hello,
I have hematologic migraines that effect my left side that started before I had TN II. The TN is also on my left side of my face. However, I am not sensitive to caffeine.
I have often thought that my migraines and my TN II are related.
Michelle
I had not thought of that at all! OMG..... Yes, I have been a migraine sufferer for 3 years now. A basiliar type migraine. It was not so much the pain from the head, it was there, but my left side of my face would go numb. I would not be able to really see... not blind in that eye, but it would just kind of blur out or something. Slurred speech, vertigo, and ringing in my ears..... I might go a month without one, but then the next month I would have several in a row. I never had nasuea, but when it came on, I felt "dumb" on the inside and just wanted to lay down and sleep as I could not think.
I have no sensitivity to caffeine. Not at all.
I've suffered terrible migraines behind my left eye for almost ten years now. I also get severe nausea with them sometimes. However, they are on the opposite side of my TNP, 24/7 teeth pain.
Many meds prescribed to prevent migraines are also prescribed for TN/ATN/TNP. On amitriptyline by itself, I noticed a small improvement to my migraines. A side effect of the amitriptyline is a high heart rate, and it really affected mine. So then we added the beta blocker Nadolol. With this combination, I had a six week period without a migraine, when just a few months before that I was getting them 2-3 times a week. It was a pleasant surprise since the meds were mainly to treat the TNP.
Obviously I am really hoping this continues.
Is Topamax one of those drugs that are prescribed for TN /ATN/TNP and also migraines?
crystalv said:
I've suffered terrible migraines behind my left eye for almost ten years now. I also get severe nausea with them sometimes. However, they are on the opposite side of my TNP, 24/7 teeth pain.
Many meds prescribed to prevent migraines are also prescribed for TN/ATN/TNP. On amitriptyline by itself, I noticed a small improvement to my migraines. A side effect of the amitriptyline is a high heart rate, and it really affected mine. So then we added the beta blocker Nadolol. With this combination, I had a six week period without a migraine, when just a few months before that I was getting them 2-3 times a week. It was a pleasant surprise since the meds were mainly to treat the TNP.
Obviously I am really hoping this continues.
Yes. I see it mainly prescribed for migraines, but I know a few people who are taking it for ATN.
I had to cut back on the Effexor due to too much restlessness. So now there is some noticeable pain. But I am back on the Topamax for two days now because for the last two weeks I have been getting migraines. Which is a coincidence because two weeks ago I reduced the Effexor from 112 mg to 75 mg daily. HA!
So, I hope the Topamax can help with the ATN pain as well.. :)
wow...I have not been told this by any Dr. but, yes, I had migraines for 35 yrs....in my 60;s they ceased after starting some potent nutritional supplements, but looking back that is when mild facial tingling started. Then after 5 yrs. reg. headaches, not migraines started along with the tingling.....would like to hear more about this connection. I react strongly to caffeine in that once after drinking reg. coffee in the evening I could not go to sleep at all. I also feel jittery after a small amt. of caffeine.'
I had migraines from about 29 (I am 62 now) would get at least two a month sometimes just awful ,vomiting like morning sickness ,when the TN started eleven years ago the migraines just kind of faded away ,now just get about five a year
tell me more about your TN....do you take Tegretol...any side effects? Do you have active facial pain? MIne was hard to diagnose as I don't have severe pain.---almost ceased with Tegretol, but now fearful of reactions from Teg.
I experience migraines. Used to be more than 15 p/month, and since I could not take an anti-depressant med (due to complications with Seritonin Syndrome after my 2nd Gamma Knife surgery), I now get botox for migraine prevention every 6-8 weeks in the scalp. It hurts like hell (because of the damaged T nerve from GK), but the TN pain is compromised almost immediately and it gets better relief within 2 weeks. Botox is fully in effect from the 2 week point on and then the pain begins to come back at week 4, 5, 6, 7, and by 8, there is no more pain relief for the TN or Migraine. For me, the migraine is hormonally triggered and other methods of control, like birth control meds, do not work very well. I was pleasantly surprised to have the migraine back off along with a little bit of the TN pain. The deep TN pain and parts of the Trigeminal nerve do not respond at all, so in parts of the nerve, deep inside my ear and behind my eye, pain is persistent. Therefore, all 7 meds are still used to combat the pain (on a rotating basis), but the useage is cut in 1/2 across the board, so I feel so much better. Meds take their tole on a body and I was just about at the end of my rope when we decided to try Botox even though it was not an insurance covered medication. After $5,000 of our dollars was spent on little, tiny amounts of the med, the FDA approved it for Migraine and now I have 200 units each time. The migraine studies on this med show that 300 units every 3 months is the best way to go. And, the Botox company will give them to you for free in the US for 1 year, if you qualify. Their site is: botoxcosmetic.com The company is Allergen.
As far as the TN connection to the migraines I've experienced, I had a 3 day migraine back in 2002 while under a HUGE amount of stress. This was the longest migraine to date and kept me in a dark room, off my feet and paralyzed by fear of moving and having the pain increase. I was seriously thinking of asking my husband to take me to the hospital the pain was so great. After 3 days the migraine subsided, my menses began and the TN pain appeared. I can remember exactly where, when and what I was doing when it came on. I read somewhere that migraines are so painful because part of it involves the trigeminal nerve...not too sure on the facts on this, but know about my experience. No sensitivity to caffeine, I use it as part of TN and migraine treatment to shrink the blood vessels and lessen the pain.
One last thing, I take Neurontin 1200 mg p/day as all the other anti-convulsant/seizure meds cause side effects that are intolerable. If the dose gets any higher, my joints swell so much it's hard to walk/move/etc. Even on Neurontin, which doctors suggest for migraine prevention, it did not prevent the ones I experienced.
Hi Lynda,
wow...your condition is serious...I guess mine is mild after reading yours. Thanks for all the info. I may need to use it in the future....At this time, I am waiting to see my neuro doc to discuss stopping Tegretol. If I do, I don't know what I will take. My tingling sensation are tolerable without meds, but it is possible that it could get worse, so I agreed to take Teg, but I have had a cold and or sinus problems for 10 month. After reading on these blogs, I think Teg. is the cause.
I've been prone to severe migraines since I can remember. Unlike others I know who got migraines, sleeping and laying down would make mine worse. I got a cold before Christmas, and as a result I had a constant headache which developed into Migraines every day. Then I got the unbearable pain one night that is TN. I've had this pain before, but not quote at this level for such a prolonged period.
are you saying that this [the above] happened before you were diagnosed with TN? What med do you take for TN now. In reading these blogs there seem to many drugs that are given for TN.
amberzak said:
I've been prone to severe migraines since I can remember. Unlike others I know who got migraines, sleeping and laying down would make mine worse. I got a cold before Christmas, and as a result I had a constant headache which developed into Migraines every day. Then I got the unbearable pain one night that is TN. I've had this pain before, but not quote at this level for such a prolonged period.
I had horrible migraines since I was in my early 20's. I missed sooo much work & just sooo much of life with my family. I used to take imitrex & that worked good for about 13 yrs then had to switch to relpax which also worked very good. In my 40's I was diagnosed with chiari malformation, cranial/cervical instability and tethered spinal cord. I had major surgeries regarding those and my migraines have never returned. But.....after having TMJ all my life..I recently learned it is actually TN.
I don't think I'm sensitive to caffeine though.:)
Min, I did not suffer from migraines before TN, although i have since. What i did suffer from is sinus problems and I know others have mentioned this, is there also a link between this?
There sure seems to be a link--so many people have TN, sinus prob., and migraines, which I also have had one or the other for 50 yrs.---TN being the last prob. 2/11. Since being diagnosed I have a very low Vit D level and I am in the sun daily...wonder if this is from the Tegretol.
elstep said:
Min, I did not suffer from migraines before TN, although i have since. What i did suffer from is sinus problems and I know others have mentioned this, is there also a link between this?
Mtgirl. Yes, this happened all before tn diagnoses. I even had an MRI scan years ago in relation to my miagraines.
I’ve been put on Carbagen.
Migraines since I was a teenager. It wasn't until I went to my first Neuro appt in my early 30's that I was diagnosed with both TN and migraines (until then I never consider my headaches as migraines).
I absolutely have a pattern between the migraines and my TN attacks.
I'm a regular coffee drinker and if I don't have any caffiene by mid-morning I get a major caffiene withdrawl headache. Headaches will also alert me if I have not eaten properly, if I am dehydrated, if I haven't taken my meds on time.......extremely sensitive to any changes in my body.
A combination of Topomax (initially for migraines, but helps with TN too), Metroprolol (a high blood pressure med - used for migraine, I guess I have pressure sensitivity) and Nortriptyline (for TN) is my cocktail. For uncontrolled migraines I take Maxalt when I get one. The Maxalt has kept me sane.
Elaine I.