New here, have ATN among other things

General General TN & GPN (Old Site)
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i joined another online forum, but got no replies to my first and only post. so am trying this one.

i'm 73, and have been living with severe pain since 1969. this pain was classic migraine, without aura (only 1/3 or less of patients have aura) and occurred episodically.

since about 12 years ago, the pain in my head has been constant, and rarely the horrible kind of migraine that sends me to bed throwing up violently for 40 hours. that's because i take a **it load of migraine drugs, at $35 per pill.

of course, i am poor now, after having spent thousands and years on worthless treatments, so i qualify for free migraine drugs (there are seven in this class; two work for me) from the companies.

so that's my first symptom. the second was classic TN, which happened at age 45 after a deep filling, and which i diagnosed myself, being a "medical person", working in the field, and i constantly read about medical issues.

the TN went away after 2 months, and a few years later, i got it again, on the other side of jaw, after more drilling in the dental chair.

this past december. it came on both sides (alternating) out of the blue. so one can see that there are several years between these bouts, which are more tolerable than most here have to deal with, i imagine.

the third symptom has been happening since my age 12, when i had 4 serious, bloody, invasive dental surgeries to remove a third set of teeth. that's SINUS infections and pain in the nose and sinuses. i've had 3 surgeries to fix the malformed sinuses, all of which failed to help in the long term.

my current and wonderful ENT has "put it all together" and thinks that it's all ATN. i suppose it's good to have a name for this, and i'm not looking for drug help necessarily, but am very curious to know if this ENT's guess is correct. CAN THIS HAPPEN ALL OVER YOUR HEAD??

i've tried neurontin 4 times, without success. there's something in the generic brands which destroy my gut, so i am researching how to get free neurontin (brand) from the company. 17 years ago when i took it for the first round, they were passing it out like candy. then the company got in huge trouble by telling doctors to use it for other conditions than for which it had been tested.

if anyone has read this book-length post and has any thoughts, i'm all ears. forgot to mention that i also have a firm diagnosis (over 20 years ago) of fibromyalgia. i consider that a garbage-can diagnosis when the docs can't think of any other reason for a patient's pain in muscles, and poor/nonexistent sleep.

many thanks, dianne, didi (like princess di but definitely NOT a princess)

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Oh my goodness you sure have been through a lot of pain over your lifetime. There are lots of knowledgable and caring people on this site. I hope you find relief. Have you ever discussed gamma knife procedures with your neurologist?

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Hi Didi (Diane) - so sorry for all your pain. I suffer from TN and ATN. I won’t bore you with the crazy path I’ve taken to get here, but I have recently found relief by taking lyrica. I also take topamax and Zoloft. Interestingly enough, it was an ENT who identified the TN, not my neurologist. You may get a bonus benefit (if in fact you do have fibromyalgia — lyrica should work for that too). I might add that I have chiari malformation and had brain surgery in jan 2012. I feel there is some correlation between all this as my CSF was blocked.

The lyrica really has been great…however there are side effects…a little foggy at times and having some problems remembering words, etc. I feel like if I have to pick my poison I’ll be foggy.

As for word/memory issues - I know some of this is related to chiari.


All the best!

Traci

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THANK YOU BOTH FOR YOUR PROMPT REPLIES! no, haven't discussed gamma knife.....after 15 surgeries in my lifetime, i'm DONE. well, you know what i mean, right? if a sure-fire surgery came along, i'd be first in line.

another of my multitude of diagnoses is "chiari zero". i chose not to have brain surgery for that, as it's so often not successful, and is also horrendous, as you know. i traveled 2000 miles to to "the chiari institute" for that diagnosis, several years ago. but you know the old adage, if you have a hammer, everything looks like a nail, or something like that. ask a surgeon anything and he will say "let's cut".

tried lyrica, can't take it. i am highly drug-sensitive, meaning it's a hellish affair to find anything i can take at all. the fibromyalgia complicates everything. i used to run a physical support group in my city for that, and many people react badly and/or backward to drugs tried. i will keep reading here, and i do know i'm not the only one who suffers a lot. i spent 15 years on a migraine forum, and people have waaaaaaaaaay more severe cases than mine.

btw, i raised 5 children in spite of the pain. (but i often went to bed with the chickens/er kids at 8:00). i am highly motivated, determined, and ADHD, which helped! dianne

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Hi didi, welcome to LwTN, who says you can’t be a princess?! :wink:

I’m not a doctor, but the one thing I do know about TN is that each of us experiences it differently. We share similarities, but each of us is unique with our journey of TN.
here’s a link to a site that describes different kinds of TN.
http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html

It sounds like you have had a lot to deal with over the years, which complicates things with getting an accurate diagnosis and many a time with different meds etc,have you ever tried Tegretol?
Read through past posts, check out our Groups tab, we have aType 2 TN group as well.
Definitely find a Neuro who has TN patients to aid you along the way.
Wish I could be if more help…
(( hugs )) Mimi

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mimi, thanks for the welcome. and also thanks for the link, which pictures help me to understand this dratted nerve! i will do as you say, and look at the type 2 group also.

when i get done with the process of trying neurontin for the 4th time, perhaps i will try tegretol. it seems to be a heavy-duty seizure drug, right? i've resisted that kind, since my problem is so minor compared with those who have seizures and NO LIFE. i have had a good life. i surmise that pain is supposed to teach us something. there are many lessons to be learned in life, and i can surely relate to those even-more-old people for whom i do in-home care.

also, i broke my knee in 3 places 2 years ago, jumping on the new backyard trampoline with my grandsons. BAAAAAD IDEA. so i learned to not do anything stupid, at least when my brain is working properly. it doesn't work right when i'm in horrid pain, of course. thankfully, today is a good day, and i'm very grateful for those wonderful days........dianne

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My posts are randomly disappearing all of the sudden. I had a whole long thing typed up and when I hit the send button the poofed into the dark recesses of the Internet.

I was going to say that my ent was the one who first noticed my neuralgia as well. I had a horrific sinus infection, they even suspected mrsa!!! Thank god it cleared but I was still in so much pain I was crying in his office telling him I felt like someone had hit me in the face with a baseball bat. He said he thought I had neuralgia and sent me to a neurologist. In retrospect my mother and I can recall many times where I had chalked attacks up to strange migraines that wouldn’t respond to maxalt or imitrex. It was that terrible boring pain at the corner of my eye and my nose. I always told her there was this spot in my eyelid that if it hurt when I was putting on makeup that pain was coming not far behind. If only we had known.

I’m a firm believer in trying everything I can to try to make this pain go away. I’m only 32 and I’m not married and have no children. I just had my second mvd 4 weeks ago tomorrow. I’m miserable still, but if they said they could make it all stop by going in again I’d probably let them. I refuse to live my life in pain or to give up.

My surgeon has often mentioned gamma knife as being a better option for people older than me, so it might be something you should research and explore. He’ll , if one little zap could take at least some of your pain away I think it’s worth it.

I too couldn’t take lyrica, or a host of other meds because my body is very sensitive to everything also it seems. I often have the complete opposite side effect it warns against. If it says it could cause drowsiness I will be up all night for example.

I really hope you find the support you need here and continue to look for ways to alleviate your pain.

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I forgot to mention I’ve suffered migraines since I was 4-5 years old so that’s why we so easily thought my attacks were migraines.







Heather Calkins said:

My posts are randomly disappearing all of the sudden. I had a whole long thing typed up and when I hit the send button the poofed into the dark recesses of the Internet.

I was going to say that my ent was the one who first noticed my neuralgia as well. I had a horrific sinus infection, they even suspected mrsa!!! Thank god it cleared but I was still in so much pain I was crying in his office telling him I felt like someone had hit me in the face with a baseball bat. He said he thought I had neuralgia and sent me to a neurologist. In retrospect my mother and I can recall many times where I had chalked attacks up to strange migraines that wouldn’t respond to maxalt or imitrex. It was that terrible boring pain at the corner of my eye and my nose. I always told her there was this spot in my eyelid that if it hurt when I was putting on makeup that pain was coming not far behind. If only we had known.



I’m a firm believer in trying everything I can to try to make this pain go away. I’m only 32 and I’m not married and have no children. I just had my second mvd 4 weeks ago tomorrow. I’m miserable still, but if they said they could make it all stop by going in again I’d probably let them. I refuse to live my life in pain or to give up.



My surgeon has often mentioned gamma knife as being a better option for people older than me, so it might be something you should research and explore. He’ll , if one little zap could take at least some of your pain away I think it’s worth it.



I too couldn’t take lyrica, or a host of other meds because my body is very sensitive to everything also it seems. I often have the complete opposite side effect it warns against. If it says it could cause drowsiness I will be up all night for example.



I really hope you find the support you need here and continue to look for ways to alleviate your pain.

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Welcome Didi..!

It certainly seems like you've had your share of pain. I'm glad you're determined to not let it rule you and i'm also glad you found this site. There are many nice people here who are quick to reply and help with discussions. I'm still kind of new here, but i already feel like i'm "one of the family" and i know you will soon too.

Wishing you peace and some relief

~Mistee

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Hello Dianne
I’m fairly new here too and have a good medical understanding of my ATN, GPN, HFS but it has done me a world of good to follow and respond to the posts here because it highlights all the “nooks and crannies” the medical literature doesn’t point out and when you suffer from these things you can almost think you’re going crazy. I was dismissed by the first neurologist I saw with my “plethora of symptoms” as it all being fibromyalgia. He was dead wrong. Even though I have had fibromyalgia since I did a face plant from my bicycle almost 20 years ago and knocked out a front tooth, I also have a superior cerebellar artery with several contact points in the trigeminal nerve, but it took a second neurologist to send me for the right MRI. (Even so, most people with TN don’t show anything on an MRI)

I see my plethora of symptoms written about here on just about a daily basis. It’s odd the relief you can feel knowing someone else suffers in the same way. Of course you wish nobody did…

Like you, I look back now and see I have had these attacks off an on for almost 30 years. I also have a deviated septum, an undescended wisdom tooth with roots extending into the sinus cavity. I was knocked out cold at the age of two when I was pushed off a tall porch step and landed on my face, which blackened all my teeth, which had to come out later. Hit in the back of the neck with a softball and knocked out when I was seven. Four minor car accidents. Even a water taxi crash in the Caribbean! It all adds up over time.

Please don’t be so fast to dismiss fibromyalgia as a garbage can diagnosis. There is lots of really good research that demonstrates that it is a disease of the Central Nervous System. Check out the work of Dr. Ginerva Lipton and her book Figuring Out Fibromyalgia. It is REAL.

You can have both ATN and Fibromyalgia. Unfortunately they will feed into one another. I have actually found that the 3,600 of gabapentin I take helps with that pain too. I have really struggled to stay the course with that medication but it is paying off. I have also added trileptal which is hugely expensive and I have no idea how I am going to pay for it at this point but I am desperate enough to give it a shot to see if the two work together. I tried lyrica a couple of years ago but it didn’t do anything for me and was also out of price range. However, my pharmacist told me last week it has now gone generic. I am more willing now to give the drugs longer trials. (I could not tolerate tegretol though.) I wish you luck with getting the right gabapentin from the drug company.

So stay tuned…lots of stories and lots of coping skills to be learned. And most of all, being here cuts through the isolation.

Hugs
Bella

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hi didi alot of my pain started with nonstop awful headaches for months! no one knew what was wrong with me My pain started in a tooth and went on and on with dental unfortunally my dentists did not consider i could have a neuro issue so i had 2 root canals and 5 teeth pulled at the age 0f 30. Bedridden for 6 months I laid in pain hoping it would just dissapear when New years Eve came of this year I had been prescribed Nortriptyline a tricylic anti depressent for my type 2 pain which is also known as ATN I was hesitant to take it but I would do anything to stop the horrific pain Im at 75 mg now and I wake up every morning drink my coffee eat healthy work out try to keep busy My pain is very minimal to what It was Im always scared it will return to what it was. I originally had tried neurontin i had adverse effect on me making my pain and headaches worse i stopped 3 days in. The awful headaches I only have once in awhile now...the only other things that took away my headaches were chiropractic not a cure but it def. helped keeped the headaches away while I was going. I hope I helped you in some way Feel free to friend me and inbox me I hope you can find relief soon!