my first post was about 3 weeks ago, giving my long history of 44 years. my terrific ENT thinks if have type 2 TN, and i think he's right. finally, somebody "put it all together".
i'm wondering if many others here have migraines. mine started out about twice/year, and were the kind that laid me out in bed for 40 hours, throwing up for 12 hours.
now they are daily, and controlled (mostly) by the triptan drugs. since i also have many sinus troubles, including 3 surgeries which failed to help, and TN, the ENT who is a REALLY good guy, thinks that all 3 branches of the nerve were damaged with major oral surgeries when i was 12 and 13. plus middle branch was damaged with nasal septum surgery when i was 19.
please answer if you are a person whose first symptom was migraine. sometimes i think i'm the only one......my TN did not show up for another 15 years. it's been a long haul, but in case anyone is interested, i made it thru life pretty successfully, and am still working at the age of 73, in spite of daily pain.
another question involves neurontin and a bizarre side effect. i'd love answers to this question, also. if you've taken neurontin and have uncontrollable intestinal GAS, what did you do about this? did it resolve in time? thanks, dianne
my pain started with really bad headaches My pain started with my teeth and then alot of dental work i wouldn't call it a migraine cause light or sound didn't effect me in anyway but its a terrible headache that is hard to get rid of. I now have relief with a tricylic anti depressent but still get them here and there
Ugh I had a really long reply written out and I hit the wrong button and it disappeared!!
I am currently suffering a migraine I’ve had for 3 days on top of surgery pain and TN 1&2 pains! I took a barrage of medication this morning hoping to sleep it off, but my anxiety ridden dog woke me up because its raining. Please excuse me if I ramble or go off on any tangents as I am highly medicated and it tends to happen. I will try to stick to answering your questions.
I have suffered migraines since I was 4 or 5 years old. My mom and I have looked back and found many that were probably TN attacks but since we didn’t know what that was they just got lumped into “Heather’s weird migraines that didn’t respond to meds.” As I got older and started putting on makeup I kept telling my mom there was one spot on my left eyelid that if I touched it I knew I was going to get the most horrible ice pick like migraine you can imagine in the corner of my eye/nose that was different than my other migraines. Still it would come and go so we just lumped it onto my migraines.
I have also suffered from chronic sinus problems my whole life. I got what we thought was a horrible sinus infection, and may have actually been that and set off a TN attack also, but I was in so much pain I couldn’t get out of bed. My fiancé at the time would come home and find me with my face in the pillow screaming. I kept going to the ER where they just pumped me full of dilaudid which would work until it wore off and the pain came screaming back. So they decided sinus surgery was in order and it was the worst hack job surgery ever.
My point is I had both the migraines and sinus problems for a long time and I think my TN attacks got mixed in with those because we had no idea what they were and they would eventually go into remission for years at a time.
I got into another terrible sinus situation where I live now and I was SO lucky to find a rockstar ENT. I did have a gnarly sinus infection that was complicated by my horrible surgery from before, but my pain was way too intense for a sinus infection. He was the first to diagnose me with TN. He got rid of the infection and then did a surgery to clean up the mess left from the first surgeon (two months before my first mvd!) it was a horrible recovery as you can imagine.
My case is very complicated. I actually think my migraines are less frequent since my TN diagnosis and treatment. Maybe it’s the meds on my. It’s hard to say that with the one I’ve had for several days now killing me. I can barely look at this screen! My rambling point is that my TN was initially hidden with my migraines and sinus troubles and all kinds of other stuff when I was a kid. My mom knew something was wrong so she took me to just about every doc you could think of. I still think I have some other things going on besides the TN, but getting that diagnosis was huge and I owe it all to my ENT.
I am on a fairly high dose of neurontin 3300mg a day and have not found any gas problems at all. You may have the wrong culprit or you may just react to it differently than others. Most people just get dizzy or sleepy from it.
I hope I didn’t ramble too much and if you have any question feel free to ask. I’m only 32, and currently recovering from mvd #2 which has been much rougher than the first one. I’m desperate to get back to my life so it’s encouraging to hear your story.
oh HCal, i've done the same exact thing soooo many times. wrote a huge long reply or post and then it went into cyberspace because of my typing idiocy. i have been diagnosed with adult attention deficit/hyperactivity disorder, too. it explains a lot of things about my life; i didn't get that diagnosis til about 5 years ago!!
thanks for your nice reply. your story sounds a lot more hideous than my own, but we are not in a contest, in any case. in my life i've had 15 surgeries, but none as horrendous as yours. it does seem that people with facial/sinus/head pain are in a special class, in that nobody can figure us out, and if they can, there aren't many treatments that help very much.
it IS the neurontin causing that unmentionable problem i mentioned! i've tried it 4 different times, with two different generic brands. the next step is to see if i can get some brand-name FREE from the company. that's how i get my maxalt, which is not generic yet, and on which i depend in order to get out of bed every day. i am sort of low-income. not poverty level, as long as i can work part-time......
nothing takes away the pain entirely, but maxalt and amerge (another triptan/migraine drug) do help a lot. no pain drug has EVER done diddly for me. dilaudid, morphine, etc. just make me throw up and don't touch the pain. so i surely understand and sympathize with that part of your story.
thank god for our wonderful and caring ENT's, right??!! mine is just an awesome person, and i'm glad you found one also. i just got home from work so this will be all i can write at the moment. pain not too bad today, but i always have some background head and lower teeth pain. oh well, that's life, and i have had one that's interesting, at least i can say that! my five children are not giving me many grandchildren, but i adore the 3 i have.....:-) dianne
I also use maxalt. It JUST went generic. It was a generic the last time I picked mine up. 15 surgeries is a LOT of surgeries to have to through! My goodness! I think everybody’s pain is relative and totally valid. When I suffered just migraines I thought there could never be a pain worse in the world. Then I got TN. It doesn’t make migraines any less excruciating. It just shifted my perception of pain. It should never be a “my pain is worse than yours” situation. We should all just be supportive of anyone in pain.
Mine also started with headaches. I also had pain in my left index finger which you read in some descriptions for TN but my Neuro couldn’t tell me why or where that info came from. There are other “signs” or symptoms I had early on but did not link them to the Tn until later. For me the TN was just one part of a much bigger picture. I believe I have conquered the TN. Still working on the underlying cause. I still have some ear pain and pain in the side of my neck. And symptoms associated to Adrenal exhaustion. You might find Jeff Turners, San Antonio headache clinic videos interesting. I would put a link but I don’t know how from my phone. They are on youtube. He talks a lot about migraines.
Thank you for sharing that you have been successful despite all you’ve had to deal with. You are an inspiration to me!
I never had a migraine until I started have bad headaches and they were escalating within a period of 2 weeks. I had started Jenny Craig and I think the processed foods that I wasn't used to were the reason. By the 3rd week, I definitely had migraines, and 1 day I started having what I would find out to be TN2. I have tried every type of migraine med, nasal spray, injection, hospital IV, etc. Now, I get Botox injections (about 30 injections) every 10 weeks. It is actually a lifesaver. I was so depressed with all of the pain and having to live in the dark and quiet in isolation for days and days, as all of you are familiar with. Mine migraines are considered chronic because I get them more than "20 days a month" because I get some form of them almost everyday, sometimes even when the Botox has kicked in. It is considered to be separate from the TN2. Sometimes they egg each other on, so that is frustrating, and it can be difficult to determine which pain is which. I hope your pain is being controlled since it is being diagnosed!
thank you for your response, pink, but nothing has changed since my diagnosis. i still live on triptan drugs (maxalt and amerge). actually, my very first official diagnosis was by a "holistic" m.d., 30 years ago. this was "multiple chemical sensitivity". which means i'm reactive to a ton of things in the environment and in the food.
when i'm exposed to stuff in the air i try to run like hell away from there. but sometimes that isn't possible, if i want to have any kind of social life, that is. the symptoms caused by these exposures are both migraines and severe muscle pain, aka fibromyalgia. which come on anywhere from right away to 12 hours later. (making it all quite impossible to figure out).
like you, i have some sort of head pain every single day, but i'm pretty functional most of the time, for which i'm very very grateful. i did have botox, years ago, and it did nothing for the pain. it did make my eyelids droop for 6 months, which wasn't a fun side effect at all. it made me look even older, and who needs that?!
i'll keep on reading and learning here, for sure. you're right; it's almost impossible to determine which pain is from which cause. at least, it does help to know there is a cause for all of it, even though most treatments don't help. i'm so happy for you, that botox works!!!
shawna, thanks for the link to jeff turner's clinic. i actually did write to him, and he responded with a kind reply. i wrote because of my neck complication, which is 8-years-ago discectomy and fusion surgery. i don't let ANYONE touch my very touchy neck, but he sent me a link to a special "test" i could do. maybe i'll have the courage to try it one day.......it involves the neck, and my bitter past experience is that even imperceptible neck movements by physical therapists make me a lot worse.......so as one can imagine, i'm totally freaked about this. dianne
Dianne, I completely understand not wanting anyone to touch you in the areas you have pain. I couldn't handle anyone to touch my face or my nerves would start firing. Interestingly the therapist that treated me did not touch me at all. That is kinda what Mckenzie is all about. He just had me do small movements with my neck. Also the test where you lay your head on some pillows and press it back into the pillows didn't work for me. I figured it didn't because I had TN and not Migraines.
Something you said that I am going to look into is the chemical sensitivities. What I have now is muscle pain and tightness in my neck. Maybe I have a chemical sensitivity? I've gone off of wheat and dairy so we'll see if that makes a difference. Thank you for your information, sometimes it's the things you tell others that you don't consider significant that helps them find their answers.
shawna, i'm glad i mentioned something that may help you, the chemical sensitivity thing. i've known about this for almost 30 years, and it has made an enormous difference in how many killer migraines i get. i don't even think about going into candle/hallmark stores or other stinky places. cig. smoke i can smell a block away, before i even see the smoker. one becomes a bit paranoid, and it isn't possible to avoid everything! but i surely do try.
i just listened to a video given by jeff turner, and now i realize that his premise isn't my case at all. he says that people will feel ok in the morning, and their head pain progresses throughout the day, because of their 7 pound head putting pressure on the neck. actually, my migraines are ALWAYS worse in the morning, and then if i'm lucky, improve all day, so that by the end of it, i'm actually not in much pain.
nobody has ever explained why sleeping makes me worse! it's a huge bummer, lemme tell ya; i consider my bed (or any bed) a torture chamber. i can go to bed with a minimal background headache, and wake up one hour later with a dreadful one. this happens nearly every night, and yes, i wake up an hour after going to sleep, and then in another hour, etc. all night long. (some nights are more miserable than others, though). thanks for all the input, everyone. dianne
Hcal. First, yes I have migraines. I guess I’ve had them for 20 years. I am 50 +.
Recently, I was diagnosed with Shogrens Sybdrome, which causes dryness in the mouth and it can lead to dental issues.
Very recently, I’ve had horrid problems with sinus. Lots if infections, pressure and sinus headaches. Can you tell me what your ENT recommends? Also, I’d you will, friend me here and tell me who your ENT is and where he is. ENTs are worse than neuros in terms if finding a good one in my city and that’s saying A LOT!!!
I take Treximet for my migraines with fairly good results. I take a tryicyclic AD and a compounded cream with Gabapentin for my ATN.
I am taking Mucinex for the sinus with little improvement. HELP!
One mOre thing, I take Topamax daily as a migraine preventative and Treximet when I get a migraine. Then much later after dental work from hexx came the ATN and it’s own meds. Now I have sinus issues and something called Allydonia. I’m very worried and upset. If anyone can helP with those last two issues, PLEASE contact me. I’m upset and tired.
Thank you.
Might be a coincidence, but someone mentioned pain in their left index finger. I’ve had ATN for about one year. I’ve had on and off pain in that same L finger, but it has been more intense and consistent in the last three weeks.
I have just been diagnosed with Hemicrania continua. I have had the condition for about 8 years. It started as occasional migraine then sinus type headaches almost on a daily basis. I then had post nasal drip and sounded like I had a cold. Didn't feel like a sinus problem . ENT specialist diagnosed a sinus problem though and following FESS op all hell broke loose. Terrible pain on right side of nose, cheek, head, neck and back of head and thick mucus coming from my nose on right side only, watery right eye, swollen eye lid. After a few days pain settled and I was left with a constant background headache on right side, and back of head and neck. Pain would then flare up again every couple of weeks to level 10 for couple of days with migraines occasionaly on top. Lyrica helped to make things a bit better so I could get on with my life. Last year my ear blocked due to the mucus build up. I had a grommet put in and the mucus cleared. There was masses of it and took 3 days. Relief was immediate but the pain in my head/face flared up again a few weeks later and Lyrica could not control it. Pain was now constant and I was desperate. With a hint from Red, I found a condition called Hemicrania Continua which matched my symptoms exactly. Dr Matharu at the London Neurological Hospital confirmed the diagnosis. It responds completey to Indometicin but has harsh side effects so I have had Botox wich has worked really well although I've had a bit of a flare up this weekend although nowhere near as bad as normal. This condition is very rare or rather rarely diagnosed because of the mix up of symptoms. Anyone with these symptoms and not getting proper relief from the treatment they are receiving, it may be worth bearing this in mind and asking for an Indometicin trial. Because it is so rare GP's dont have this condition on their radar so diagnosis is difficult.
I recently did an indomethacine trial and it did nothing to stop my symptoms. I was given it to test to see if I was having cluster headache along with tn. Not too long after I started taking it I actually became worse and then ended up in the hospital for three days with an unbelievable migraine and a horrible tn attack both egging each other on. It may have been the worst attack I’ve ever had.
I have type 2 and have been getting cluster headaches. I did some research on this and found out that cluster headaches can originate with the trigeminal nerve. As far as neurontin goes I tried it and it made me so out of it I couldn’t drive, and it really didn’t get rid of the pain. Right now I am on a topical cream with Ketamine, which seems to cut the pain.
stephy, wow! what a story. i diagnosed myself with hemicrania continua a few years ago, because i thought i fit into the category quite well. my general practitioner at the time was all about "i have no idea what to do for you anymore because nothing works, so sure, try indocin". my mother used to take it for arthritis. she had the semi-crippling kind of osteo-arthritis. thankfully, i'm spared from that, and don't intend to get it, either.
unfortunately, indocin did nothing. it is very hard on the stomach as you know, and i can't take any NSAIDS, with the exception of occasional advil for fibromyalgia extreme pain. they don't hurt my stomach, but because i am so antique, my skin is thin, and my hands get all bruised; i look like i'm 90. (really, ONLY 73....) so i wonder if those NSAIDS are really causing stomach damage, but i just don't feel it. every drug has such a downside, doesn't it! thanks for the input.
botox also did nothing for me. i'm so glad you find it helpful.
Hcal I'm very sorry the Indo trial didn't work for you and you had such a bad attack. The Indo cleared all my symptoms in 4 days but after a week on it I developed stomach pains. Now I'm on the Botox, I only need the odd dose of Indo when I get a flare up. It stops all my symptoms in 20 minutes, it really is that dramatic.
Nomad - It may be worth asking for an Indo trial. Hopefully you wont get such a bad reaction as Hcal and if it actually works that will confirm the diagnosis