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General General TN & GPN (Old Site)
1

Hi, my name is Mike and I am 44. From the age of 19 to 31 I suffered from cluster headaches. In 2008 I had what I considered to be a cluster headache cycle only it was a little different in that I did not have the runny nose and red eye that I had always had. In addition I felt pain above my rear upper teeth. The headaches ended after a few months.

A couple of months ago I started to get a similar cycle of headaches. They started above the rear teeth and would simultaneously be behind or around my right eye. The pain at first was bad but not cluster level but as time has gone by the intensity had increased.

About a month ago (one month into current attack) I started to have more than one attack in a day. Often I would have 5 or 6. It was so bad I went to the ER and was prescribed Tegrital. Tegrital initially took the edge off, but it was only after my new neurologist that I saw two weeks ago upped the dosage did I see results: from last Friday night until Tuesday night I was pain free - not even an inkling of pain. After the pain returned on Tuesday, I have found that I have had to take regular Tegrital doses as well as doses for when the pain occurs. If I take it quickly when the pain occurs I can mostly abort it; otherwise I have to endure it. I feel like if I could keep a better stable dose of Tegrital in my system, I might be able to prevent the pain. As it is, I am worried this is causing me to goto higher and higher doses. I hope this slows down.

As I described it, does this look like TN? My neurologist was non committal although he continued prescribing Tegrital. And the pain responds to Tegrital.

So how do you sufferers who have to go thru this every day get by it? How do you live regular lives and work etc? I have 2 Masters degrees and the time I missed from working due to my cluster headaches in the 1999s haunts me to today with respect to jobs. Hiring managers spot it immediately. I’ve been wo work for a long time. I don’t know how to fix it - and now this TN shows up.

I really need to know how you can get thru TN on a day by day basis with any semblance of a normal life. IMHO this is so much worse than cluster headaches. Clusters last 30mins per day and are gone. And after a few months they go away for a while. TN attacks can happen 5 or 6x in a row and they might not ever go away. I could gut out clusters bc I knew they would go away. These things can happen over and over. I feel like I’m constantly behind the Tegrital - taking it too late, after the pill has worn off enough to allow my pain to return.

I know there are many types of TN…does mine sound like it? I don’t have an obvious trigger like chewing or brushing the teeth…mine just happens.

I don’t know how I can go thru these battles again. I thought I won them in 2000 when I went to a pain mgmt dr and my life was given back to me. I feel like I am starting over again. Lets put it this way - If I were to win Saturdays $320miion powerball, I would not be able to enjoy it whatsoever.

And are there any TN success stories at all? It seems like all I read about are people who have tried everything including multiple surgeries and nothing has worked. Anybody out there who a success story. Who’s pain went away? Or who tried botox and it fixed them? Just curious.

Take care and thanks in advance for your help.

Mikes

2

Since your pain sounds similar but different -- you should send the moderator "Red" a message - he has researched all kinds of facial pain for yearssss.

If TN - goes in and out of remission - never really "cured" - to get thru the day and lower my meds I use/used lidocaine cream or patches on my face - prescription.

I know what you mean by holes in the resume -- I filled some in by "raising family" but in truth I had TN bad for 1 year - and ended up having surgery. Now 98% gone.

Trileptal / tegretol type meds made me lose my IQ -- must have sounded dandy in the job interviews -- I didn't even realize why I was coming up blank on words, memory etc.

welcome, and I hope you find some answers!

For a visual --- go to google images and type in facial pain / atypical facial pain / trigeminal neuralgia -- and you just might find your picture there! Or a combo.

Keep Posting!

3

Hi KC

What do you mean Tegrital made you lose your IQ? Temporary or permenant? I used to take Topamax 100mg for my regular headaches. During this time when I would goto job interviews I sometimes was unable to verbalized what I wanted to say. I knew the answer - they were basic questions - but I would sit like a deer in headlights like a fool. This has stopped since I stopped taking Topamax.

If Tegrital is going to destroy my iq then this is even worse than I thought and I don’t know what I am going to do.

Thanks for your help!

4

Hi Mike,

I used to take Neurontin and Lyrica and was unable to come up with the right words, didn't remember important things, made lots of typos in my mails etc. I'm 3 months off any medication and I've resumed my skills, so don't worry about that much!

As to success stories -- I think you're bound to find mostly failure stories on the internet -- people are more likely to share the bad stuff that happens to them as they search for answers and solutions. I think a lot of people become inactive or leave support groups once they start to feel better or find a solution, and often they don't report back about their success; I can't blame them.

I've had ATN for some time now and am starting re-defining what success means to me in relation to my condition. In the beginning I would take nothing less than 100% healing, now I'm happy if I go several days in a row with little, say level 2, pain and discomfort -- I can totally live with that.

Take care and hope you'll enjoy this site, I've found lots of useful info and met great people on here!

Oli

5

Oh no - not permanent -- right before surgery I got off trileptal . IQ fine since surgery and no regular daily putting that in my body.

Tegretol is a stronger version as far as side effects than trileptal -- they are cousins.

I consider myself a success story for now- 2% off and on intermittent pain-- NO Meds

and it's because I researched an asked questions on here for a year and on the TNA website - that I found what to ask for, found out what not to put up from doctors, found how to be my own advocate -- these doctors have never HAD TN.

We are only 12 in 100,000 -- we are only a paragraph in their text books!

In order to lose "less IQ" that's why I mentioned Lidocaine above -- able to take less meds having that.

Keep Posting!

6

Welcome Mike,
There are many success stories, and we’re lucky here at LwTN that many of our members who’s pain is managed by meds or alternative therapies or even surgical procedures still post and interact here.
TN can go into remission too, from weeks to years…
I have bilateral TN, both sides went into remission after 9 months from initial onset.
The right side woke up 8 years later and the left woke up 10 yrs later!!
During my long remission I had NO TN what so ever.
When it came back I managed well on 800 mg Tegretol XR
I worked, volunteered, have 2 kids, lived normally.

Everyone’s course with TN is different, and we all respond differently to the meds.
At 800mg, my body adjusted to the side effects within days after hitting the 800mg mark.
It wasn’t until I started taking higher doses that my word recall was/is affected.
Every time you increase your dose it takes a few days for your body to adjust.
Tegretol needs to build in your system, and can’t be taken like Advil when needed.
So you need to have a plan with your doctor on how you can increase . I use the extended release Tegretol, works better for me.

Mimi

7

My recall or ability to pull words out of my head during a conversation hasn’t been effected yet, fortunately. However, what I have noticed are two side effects: the higher the dose goes, the more I have noticed a white-noise like sound in my ears. I researched this and it is a noted side effect. If I am in a room of people talking or watching TV I don’t notice it. I don’t notice this when I am alone or when trying to fall asleep. Maybe I will buy one of those sound generators for bedtime so it doesn’t start to bother me. The other thing is that I am jumpy…holding my kindle trying to read…I can hold it but I feel antsy or jumpy…hard to tell.

Right now I have been trying to figure out how long exactly one of these Tegritol 200 mg tabs lasts, so I can space them evenly through the day so I get enough Tegritol without having pain.

Thanks to everyone who has replied and been so helpful. You are all tougher than me! I don’t know how I would get through one more day of pain, Tegritolor not… And the auditory side effects are starting to bug me…yet some of u have had this for years before finding relief. I just don’t know how to do that. I had bad headaches, and although I haven’t done this in years, I always know that no matter how bad it is, it won’t kill me. And if the pain gets so bad I can always goto the ER and get a big shot of Demerol. With these repisodes of pain I’m not certain Demerol would even touch it. I just hope that these will go away like they did in 2008.

Take care,
Mike

Mike

8

My neurologist has basically left it up to me to determine how much I take. If I wanted to level it off and ultimately try to decrease it to the 400mg a day of Tegritol that he originally prescribed,should I do it all at once or gradually?



Kc Dancer Kc said:

Oh no - not permanent -- right before surgery I got off trileptal . IQ fine since surgery and no regular daily putting that in my body.

Tegretol is a stronger version as far as side effects than trileptal -- they are cousins.

I consider myself a success story for now- 2% off and on intermittent pain-- NO Meds

and it's because I researched an asked questions on here for a year and on the TNA website - that I found what to ask for, found out what not to put up from doctors, found how to be my own advocate -- these doctors have never HAD TN.

We are only 12 in 100,000 -- we are only a paragraph in their text books!

In order to lose "less IQ" that's why I mentioned Lidocaine above -- able to take less meds having that.

Keep Posting!

9

With these medications you should always do everything gradually. They are anti-seizure medications and can do nasty things to you if you suddenly stop or suddenly jump way up in dosage.

10

Thanks Heather!

My neurologist prescribed up to four x 200mg a day and did blood work; I saw him Thursday and he said I could take more if needed. I am trying to stay close to the four a day. Someone else told me today that it is much better to keep a steady dose vs taking them as needed for pain. So today I have been writing down when I have had to take them due to pain. Seems like every four hours I start to yo yo and my level drops enough to let pain break thru. So today at 8am I took 200mg and have taken 100mg every 3.5hours. Seems to have worked so far. What I really need is extended release Tegritol! Ill call my neurologist on Monday for those!

11

You are on tegretol only, correct? I am on 600mg 4 x a day of neurontin and 300mg 4x a day of tegretol. My neurontin is the one I up if needed if the pain starts getting worse. My tegretol I have kept the same for awhile. I used to be on a higher dose of tegretol and it was always one I kept steady even as I increased my dose. You may want to ask your neurologist about trying neurontin. I find it has less severe side effects than the tegretol also.

12

My mom was on neurontin for something and had to stop taking it bc she was bumping into things.

I worry about switching meds (even though TN started not long ago and even though I haven’t been on tegritol for long) for one simple reason: if I have to decrease the tegritol before starting a new med, I worry about the pain. I don’t know if I could go through it again. I guess I would if I had to but i really don’t want to. On the other hand I will have to do what’s necessary to treat this. It is just hard bc I went through this with headaches for 12 years and its hard for me to gear up and get the mindset to battle another painful condition.



Heather Calkins said:
You are on tegretol only, correct? I am on 600mg 4 x a day of neurontin and 300mg 4x a day of tegretol. My neurontin is the one I up if needed if the pain starts getting worse. My tegretol I have kept the same for awhile. I used to be on a higher dose of tegretol and it was always one I kept steady even as I increased my dose. You may want to ask your neurologist about trying neurontin. I find it has less severe side effects than the tegretol also.
13

I’ve suffered migraines since I was 5 years ok and was diagnosed withTN almost two years ago. I understand your pain. If you have a good neurologist they will not allow you to be in more pain. You can start a new medication before stopping the old one and then taper down the old one to see if the new one is working. Any good neurologist will not purposely allow you to be in pain. I can just tell from your posts and questions on here that you really need to go and have a long discussion with your neurologist about all of your treatment options, what his plan of treatment for you is, what your longtime goals are, and what your expectations for your TN in the future should be.

I hope you find the medication combo that affords type the best pain control with the least side effects. However, none of us here are doctors and do not have your full medical history so we can’t really tell you how to take your meds. We can only share our own experiences and hope that they help you somehow. I would make an appointment with your neurologist ASAP to get your questions answered

14

Mike,

You sound desperate. My pain and my story are similar to yours. I had migraines and cluster headaches for years. Then my ear and teeth began to hurt. I went to so many doctors, it is ridiculous to think of the time and years I tried to find out why I hurt all the time. I was diagnosed with Atypical TN.

Have you had any MRIs?

Tegretol is the medicine of choice for TN, but I take Gabapentin. When the Gabapentin doesn't control the pain, I add in another medicine. It does make me very drowsy, so working or driving would be a problem, but there are other meds which do not make you "loopy." There are many who manage to cope with families and jobs, and you, too, will find the right meds and possibly even the right doctor to help you manage your pain. Please read through some of the blogs and forums on this sight and the FPA website to learn what has worked for others.

You can get through this and learn how to cope. While those of us with ATN do not have the "usual" triggers, we do learn what will bring on the pain, such as cold and wind. I can't sleep on the TN side--I have had to learn to sleep on the other side. I also found that long car trips with the constant vibration will cause an attack.

Keep reading and learning. You will make it!

Mary

15

Hi Mary - thanks for replying.

Yes in desperate bc I won’t go thru the search to find the right doc again. I wasted alot of time and my youth when i spent 12 years doing that for cluster headaches and won’t do that ever again. I also realized that if these ATN attacks don’t end on their own then my life is effectively over. Noone will hire someone with any time wo work- too much competition these days. This will only increase my time off. So yeah I’m desperate. I’m so desperate that I’ve spent the last three months working on a professional certification. It was time to recertify and I canceled that, what’s the point. My neurologist is on vacation this next week and when he gets back ill make an appointment to try to get into his head how serious and debilitating these are to me. I will see how he reacts.

16

Don’t lose hope. You just have to get in your head that no matter what it takes you are going to find a way to be pain free AND be able to live as close to a normal life as possible. If it takes searching for the right doctor then that’s what you do. Hopefully the neurologist you have will be able to help. Here’s some of the things I do to help with my doctor.

  1. I keep a pain journal. I document a couple times a day what my pain is like, what my pain level is, and what meds I’m taking. Doctor’s take you more seriously when you come in with a bunch of paper and documentation I find.

  2. Make a bullet pointed list of all the questions you want to get answered. I forget things in the moment if I haven’t written them down.

  3. Take a trusted family member or friend with you to take notes on what the doctor says. If you can’t take anyone, take notes yourself. When you are in pain, and taking meds that make you loopy, and you are scared, in pain, frustrated, and all the other crazy emotions that come with this, you WILL miss something that the doc tells you. I’m always amazed at what my mom has written down that I don’t recall AT ALL.

  4. keep a positivity journal. Write down 3 things you are grateful for everyday. It sounds silly, but its important to remember that even though you have this condition there are still amazingly great things in your life to be thankful for

  5. don’t lose hope. Always keep fighting. Always keep advocating for yourself. There is an answer out there for you.

17

Mike,

Please don't let this beat you. Most of us have been through the "doctor search" and know the frustration of getting an appt., waiting months to see the doctor, and discovering you have wasted time and lots of money. I still haven't found the right doctor, but I did find one who will help me monitor my medications. I suffered with headaches for many years and never understood what was happening when the TN took over.

As for work: I worked in a very large company (took an early retirement.) There is a lot of lip service about time and family and personal needs, but you are right--no one wants you to be away from the office. BUT, you can get this under control; you will be able to work again and control the pain--even work through it. Heather's suggestion is great. I kept a pain journal, too. I bought a calendar with room to make notes.

Keep talking to us. We understand what you are going through.

Mary

CT-Mike said:

Hi Mary - thanks for replying.

Yes in desperate bc I won't go thru the search to find the right doc again. I wasted alot of time and my youth when i spent 12 years doing that for cluster headaches and won't do that ever again. I also realized that if these ATN attacks don't end on their own then my life is effectively over. Noone will hire someone with any time wo work- too much competition these days. This will only increase my time off. So yeah I'm desperate. I'm so desperate that I've spent the last three months working on a professional certification. It was time to recertify and I canceled that, what's the point. My neurologist is on vacation this next week and when he gets back ill make an appointment to try to get into his head how serious and debilitating these are to me. I will see how he reacts.
18

FYI--saw that you are from Guilford, CT. I used to live there and then, Clinton. We live in the Cape now. Are you seeing doctors at Yale??

19

Hi I am a type 2 victim I initially suffered through headaches that would never go away which much research and unfortunate dental work And months of constant nonstop pain I am now on a tricylic anti depressent nortriptyline 75 mg. a day I still have minor pains but for the most part Im feeling a heck of alot better I did have to quit my job back in sept. and am currently going for disability at the age of 31 but it is what it is at this point I do not have triggers either. I had adverse reactions to tegretol it made my headaches worse I was on it for 3 days and got off. If you would like to talk more friend and inbox me Id be more then happy to answer any questions