Fed up :(

1

I'm only newly joined so I know it's a bit early for a venty/ranty post but...I'm fed up :(

My TN has decided to be an ass. I can't really think of better ways to explain TN's behaviour. Sometimes it's ok, sometimes it's like a delinquint toddler, sometimes it's a downright ass.

In November I will have had TN for 2 years and in that time, even though I have type 1, I've never had a true remission. I've had points where I could lower the dose of medication, but never once come off it completely. Getting a pop or twinge every other day is my 'normal' and doesn't bother me as much anymore, it's the flares that eat away at my pain threshold and tolerance...

I'm in a flare. Or rather, I'm probably this bad all the time but I don't know it because my medication works. It's decided not to work anymore. I currently take Gabapentin, on the maximum dose my GP will allow (3200mg daily) and the break through pain has been getting progressively worse each day, not better. Today I had clusters, so went to the GP...He's told me to stay on the Gabapentin, at 3200mg, and has prescribed Efexor-XR...An antidepressant.

Last year I had a few months success with Norpress, also an antidepressant but then it failed. I've been on Gabapentin with excellent results for 16 months.

Has anyone else had antidepressants prescribed? Which ones, and did they work? Does anyone know why they keep offering me antidepressants for TN pain?

I'm not depressed, although all things considered, I should be. >.<

I've been told to take 75mg the first week, 150mg the second, then 225mg from then on. I had my first pill today and within a few hours I already had dry mouth with a horrible taste, nausea and uh...Well, it's not polite to discuss what happens in the toilet on a public forum. *blush* If this is what I can look forward to from Efexor......

The only other thing he offered was a Tramadol injection - Tramadol not being as strong as Morphine, and Morphine doesn't touch the pain - And didn't know if it would work, would have to do it to find out, and even if it DID he couldn't say for how long, a few hours, maye a few days. Well what's the point of that?

I was supposed to have an MVD last year. They did, but had to abort the procedure as my brain herniated. I was in HDU for 56 hours, hospital for 9 days all up. I have a big scar, and a piece of my skull missing for nothing. I've had one MRI since then, and the swelling hadn't gone down. I saw my neurosurgeon on Friday, with a full page of all the things that have been happening to me since the surgery - Resulting in him saying he wasn't willing to perform any more procedures on me due to the risk. Ok, I do (grudgingly) accept that. But that he 'didn't know' why all these symptoms have appeared. (It's a long list :( ) He's referring me back to the facial pain specialist (who is nice, but couldn't offer any help except to refer me to the neurosurgeon so I feel like that game 'piggy in the middle') and a neurologist - Appointments which could take weeks or months to eventuate.

He spent some time examining (and by examining I mean pressing and prodding my still tender surgery site, despite me wincing and explaining it hurts there each time) to make sure it was alright...And then 5am Saturday morning I woke up with my nose bleeding. I haven't had a bleeding nose in over 10 years so I don't know if this is coincidence or not?

I'm lucky enough that both my GP's straight away clicked to what was wrong with me when my TN started, and have handled me the best they can in regards to medications, side effects etc since then...But have said I'm running out of things to try. This will be my 5th medication in just under 2 years. With any kind of surgery no longer an option, and medication options running out....I don't know what I'm supposed to do - Right now AND in the future as I'm only 29, and TN supposedly gets worse over time. It's horrific now...:(

Sorry for ranting/venting...I'm just so fed up feeling right now :(

2

:( KC Dancer sent me a link andd it helped me a lot...... I mostly try and forget about mine when I can just because I seriously don't have time for TN right now! Big Hugs to you Friend!! It seems to me a lot of younger people are getting TN.... The stats say over 50. You are 29. And you have had it for 2 years! Mine is post traumatic.... My internist ordered a pain cream from a compound pharmacy but i haven't received it yet but when I do i will let you know....maybe that will help. I can't take Neurotin.....It makes me stupid.....and I am already on 100 mg of Topamax for migraines.... Have you tried Lidocaine patches? KC Dancer also recommends Lidocaine Mouthwash(which I need I need to get).

http://www.livingwithtn.org/forum/topics/an-important-reminder-for-yourself-and-your-loved-ones-caretakers

3

Oh my! *hugs* You have had quite a row with this.

I did notice what reading you post that you didn't mention carbamazepine (tegretol) anywhere. Have you tried that at all? I may be wrong, but it's my understanding that that is one of the first drugs that gets tried for TN and it is fairly successful (for some.).

It was a big help for me. I've slowly had to up the dose, but it still provides very good relief. Anyway, if you haven't tried it, ask your doc about it.

I also take gabepentin as well as baclofen. Maybe ask about baclofen as well?

I know how awful it is to look down that long road toward old age and wonder how the hell am i going to deal with this pain for all of those coming years. (i'm 39) It's a horrible and hopeless feeling and can be overwhelming. ON that note, i also take an antidepressant and that has helped with those feelings. (to an extent). Perhaps that is one reason they are offering them to you? I don't know.

4

re: Fed UP, I'm really new here, and less then six months new to TN itself, and I'm already getting fed-up! Hate to see what it will be like later :-( . Really needed to get in to see my MD today, who knows me well, after a bad weekend. NOPE, could not work me in, so am on tap there tomorrow.

I have a long list of questions about drugs, and relief of any sort. Can see the road ahead has many curves, and getting a roadmap for the correct directions is not an easy task.....grrrrrrrr

5

I hate to read the stuff ppl are going through b/c of this!!!! Mine just started and is under control but i want to be armed and ready with a battle plan when the enemy advances..argh!!!

anyway--sounds like you might be ready to check out neurostimulators

neuralgia.org/treatments/surgical/neurostimulation.html

there is also a group on this site you can check out

fight on!! Hope you get relief soon!!

6

((( lupa ))), it’s always ok to vent…anytime, here is where you should always feel comfortable to vent, among those of us who truly understand TN, because we have felt or feel the horrid pain of it…

It never ceases to amaze me how incredibly strong a person can be. You’ve definitely been through so much in your journey with TN. I’m sorry you experienced the herniation during your surgery, I can’t imagine what that was like…incredibly scary I imagine. Did you suffer any long lasting affects as a result?
In regards to your question re; anti-depressants, they are widely used for TN, and many have found that in combination with other meds they make a difference. It is my understanding that they are used more with type 2 TN but have read of some with type 1 that use them as well.
Type anti-depressant in the search box (above right) to find all threads discussing them for more info.
I personally tried oral Tramadol for breakthrough pain and all it did was drug me up within an hour and made me sleep only to wake up with a hangover type headache, but others have found relief with it.
Usually when all options have been exhausted opiate therapy is the next step.
There are also nerve blocks, nerve stimulators, nucca chiropractor treatment, and lidocaine mixed creams to try, thinking off the top of my head.

Don’t lose hope, thinking of you with positive thoughts,
((( hugs ))), Mimi

7

Hi Lupa-- A medication that is an anti-depressant and helps with nerve pain is Cymbalta. Amazing that it works in both directions (on nerve pain and depression). I am new with TN. Am taking Tegretol but the GP recommended Cymbalta and my Neurologist agreed. It seems to have definitely helped. It is hard to know what is exactly doing the heavy lifting when it comes to pain relief. Good luck!

8

Thank you, all of you :)

I'm so glad I found this site, for information, and a place we can support each other. I have a wonderful family who try hard to understand and be supportive, but they all live overseas. I live with my mother, who sees me going through it, has always helped me fight my battles - She is a rock and I couldn't ask for a better mother. She understands it a lot better, because she has seen me on the floor, heard my muffled screaming, rocked and held me when my brain just kind of shuts off trying to cope....But like I've explained to people...The only way to really know TN, is to have it. People ask me what the pain is like and the only way to explain it is that there is pain...And then there is TN. :(

The first thing they tried me on was Tegretol - After a week on it I begged for something else because it did nothing for the pain and made me so ill I could hardly function. Then they tried Norpress, which worked for 3-4 months then failed. Then Lamotrigine, and like the Tegretol it didn't help at all. Then Gabapentin, which worked within days and has held me steady for 16 months - When it was good, I could lower my dose to just 1200mg and just get an every other day pop/twinge. When it was bad, it would climb by 400mg a time...Now I'm maxed out on 3200mg.

I live in New Zealand and half the things people use/suggest here I've never heard of and neither has my GP...Making it somewhat more problematic :( I'm trying to stick out a week on this new one, and if theres no change I'm armed with a new list of medications to ask about. I'll ask about B-12 injections too...I already take a supplement for that, as well as one for iron but I don't feel any different, general health or TN wise.

TN has taught me to have a high pain threshold...But it gets to the point where I just can't function anymore :(

Mimi, the list of effects of the bad surgery is so long it's unbelieveable :( And my neurosurgeon, although very nice, wasn't very helpful with his admittance of not knowing why these things have happened to me, and just expressed that they shouldn't have.

To top it off, I'm also physically disabled and a diabetic...Our kitchen counter, between my meds and those for my cat, looks like a pharmacy. Between everything, I currently take 18 pills a day. Pretty sick of it :(

9

I am so sorry for your situation. I was just told a week ago that I have TN type 2. The reality is I've had it for 3 years now. The first time it hit me I went to the doctor and told him my head wannted to rock off my shoulders. I told him it started on the left side behind my ear and he said it was just an ear infection. Three years later I couldn't take it any longer. It started out just once a month or so and now it's 4-5 times a week and most times the backround pain is constant. The neuro put me on Gabapentin. It helps a little but the pain sucks.

I've been a police officer for 22 years and now I'm thinking this is going to force me to retire. I've done so much reading on the subject that it has left me a bit depressed. I'm not sure what I can say to help you but hang in there. At your age you can bet that there is plenty of time for a cure. Until then all we can do is soldier on.

10

Breathe…I know I need someone to remind me of that myself sometimes.

11

It does get frustrating and can be overwhelming to think about the future...I don't care for the expression one day at a time, but between my TN and my husband, a diabetic who is diasabled in a wheelchair, it truly has to be one day at a time. My first few years I felt just like you and sometimes still do, but there are just good and bad times for me with it, during flare ups I feel a sense of hopelessness, but then a day comes I realize I am doing okay, just a throb, no breakthrough or stabs. I enjoy those days to the fullest. You are young and you have been through it with this, but don't give up, between your Dr's or finding new ones and advice here, relief somehow will come. I am so glad you have such a great Mom, that helps, and for me my pets are my biggest source of comfort. I wish I had magical advice for you, just know we are all here for you, vent away anytime, we all understand, none of us want this for sure, but at least we have this great support, it helps. Please let us know how things are going. Sending you a gentle hug.

12

I am new to TN also, about 3 weeks. I have been on gabapentin, first 300 now 600 mg per day. It seemed to work wonders at first, now a few pains a day, getting a bit worse now. But the mental fogginess was just starting to lift. What I wanted to ask was- has anyone had anger from the gabapentin? I don’t feel any more angry about having TN than before my diagnosis, but I find myself yelling at my husband and kids, over small insignificant things that can easily be fixed. I know I am doing it when it is happening, but I can’t calm myself down and I just lash out. Is it because the pain is creeping back in or is it a side effect, or misdirected anger?

13

Hi Momof3 It does look like anger is

Rare side effects of gabapentin Oral:

"Feeling Anger Toward Something" is listed

From WebMD

http://www.webmd.com/drugs/mono-8217-GABAPENTIN+-+ORAL.aspx?drugid=14208&drugname=gabapentin+oral&pagenumber=6



Momof3 said:

I am new to TN also, about 3 weeks. I have been on gabapentin, first 300 now 600 mg per day. It seemed to work wonders at first, now a few pains a day, getting a bit worse now. But the mental fogginess was just starting to lift. What I wanted to ask was- has anyone had anger from the gabapentin? I don't feel any more angry about having TN than before my diagnosis, but I find myself yelling at my husband and kids, over small insignificant things that can easily be fixed. I know I am doing it when it is happening, but I can't calm myself down and I just lash out. Is it because the pain is creeping back in or is it a side effect, or misdirected anger?
14

Msbluebells- thanks for the link. I love the fact that i might have a few of the “rare” side effects. I guess i also have confused, cannot focus thoughts, and difficulty speaking. It is weird, my side effects really seem to kick in about 2-3 hours after taking the dose.

If my pain level in my short time with TN went from what I thought was a 6-8 out of 10 on the pain level and now is at 2 or 3 with only a few pains ceeping back in, do I just fight through the ander and lack of concentration? Sometimes a read things over and over again at work just to amke sure it is correct. I’ve even called coworkers over to double check me a few times already.

Thanks for any advice.

15

Momof3, I get a lot of the Gabapentin side effects, but they settled over the 16 months I've been taking it...But since my failed MVD, many of the things happening to me since then are the same so it's hard to deal with :( I think as with any medication, as hard as it can be, we have to stick with it for a little while to see if it works/settles...If it takes away the pain, then the tradeoff seems to be just adjusting to life with the side effects.

An update - As of today I move up to 150mg Efexor-XR. I'm not exactly looking forward to it since I've suffered unpleasant side effects on the low dose...Most notably, a tensing of my jaw muscles/teeth gritting which just aggravates the TN...But it does seem to have cut down the frequency and severity of clusters, though they still come and still hurt.

My newest question is...Can medications change the feeling of TN? I have type 1, where it's electric, stabbing, and just...Hell. Since this new medication, the clusters still come but now instead of feeling like someone is touching me with a taser, sharp jolts etc, it's more like an instant burning, aching in my jaw...A 'fizzling' sort of feeling. It's a relief from the white-hot needles feeling, so although it's still deeply painful I'm not complaining...Any let up of the pain is better than none, but I'm just not sure why it's happening.....Is it the medication working and dulling it away bit by bit, or is it possible to change TN types?

16

To others who have taken gabapentin- how do you break up the doses? My doctor said it is up to me. I have upped it to 900mg now. The doc said I can take all 900 in the evening, but how useful is it to me the next day (when I really need it to work)? I think it would lessen the side effects, but it doesn’t seem like it will improve the pain issue. If I don’t take it all in the evening, do I split it into three doses? Any suggestions?

17

I take 900 x 4/day and boost with tramadol an hour before the second dose to keep me going through the afternoon, otherwise I DROOP like mad and get very bitchy, low, and pain worsens too quickly.

Some docs say 1200 x 3/ day. I feel like I’m under water when I take 1200 at a time. However, I could try 1200 at night and tweak one of the daytime doses…but that is too much tracking for me.

I know that’s a lot. I did feel terribly stupid for a long time but have adjusted…somewhat. The tramadol actually seems to keep me “brighter”. But I have to keep it at a minimum otherwise my vision blurs.

I take 10 mg nortriptyline in the morning, not at bedtime, because it really stimulates me.

We all have different reactions to these meds because they react with our own natural neurotransmitters. Depression and pain have the same neural pathways, that’s why they’re tried first.

18

So my update on the drug cocktail...Yeesh. So far being on the 150mg Efexor, the pain is worse than when I was on 75mg, for some reason! After seeing the doctor today, he has suggested reverting back to the 75mg to see if it changes, and also beginning to taper down from my 3200mg dose of Gabapentin (since it's not working anyway)...

Thanks to this forum, I was armed with suggestions...And was surprised (pleasantly!) when he was all for the idea of being part of this forum. Usually doctors seem to poo-poo 'group diagnostics' and looking things up online etc...But he said in the case of TN, places like this keep us all informed, supported, and in many cases armed with better knowledge than doctors and even neurologists! I about died to hear that. Anyway, thanks to some of the suggestions, he agreed trying Baclofen may help, so he's started me on that, also agreed that B-12 often DOES seem to help TN, so I'm also now on a 6 week course of B-12 shots, one a week. Had the first one today and it wasn't that bad at all. So fingers crossed...

19

Lupa -- I had my MVD a year ago this past week. It was 95% successful. That was after a year of every drug cocktail they could come up with for the TN. From what I understood and found out, narcotics did absolutely nothing for the pain. Mine was triggered by just about everything under the sun -- especially cold air. At the time we were having to travel quite a bit to the DC area to settle my brother-in-laws estate. There was not enough gin in the bar at night to get me relief! Long story short, although the surgery worked on the TN, it opened up a new can of worms. I continue suffer from severe headaches, chronic incision pain, and pain at the site of the hole in my skull. I have been on Nucenta 100 mgs. six times a day for 8 months as well as Topamax in varying dosages to no avail. The Topamax has side effects that make life a bit difficult -- especially for my husband since he has to deal with them. I have trouble with my very short term memory and am easily confused. At one point I was having panic and anxiety attacks in my own home -- the one place I should feel safe. I have been approved for Botox injections which will done next Friday and I am hopeful they will work at least on the headache. As far as an antidepressant, I took Viibryd and it changed everything. It gave me a new lease on life and changed one very depressed individual into one that was ready to fight the syndrome that had taken over my life. My neurologist says that there is an answer to most everything and that since it is so individualized it just takes time. I still have days when I want to scream and throw the towel in, but those are the days I stop and find something to be grateful for. Yesterday was really bad. So, I went to sit in the backyard for a while and got a visit from the first humming bird of the year! I hope they find your individualized treatment plan sooner than later my dear as your traveled road sounds much worse than the one I went down. Keep us posted.......here is a big HUG from TX where everything is bigger! LOL

20

Thanks Mary :) I wish I could hug everyone here for real, especially when they are going through bad times. Just knowing you aren't alone in it can really help.

I'm on a 4 prong attack combination now lol...2800mg Gabapentin, 75mg Efexor-XR, 30mg Baclofen and a weekly B-12 shot. We don't know if it's one, or a combination of all 4 that is doing it...But the pain is dramatically improved. I can now talk and eat even when a cluster comes as it has changed feeling again - I started with the electric stabbing I've come to expect, then it downgraded to a heavy, burning ache that had me opening my mouth alot to evade the feeling (which helped a tiny bit, weirdly, opening my mouth usually sets it off worse) and now it's a hot, fizzing sort of burning during a cluster which is very tolerable. I even remarked today that if it never got any better (as in never went away) but at least would never get any worse...I could live my life with it, and be ok.

It's a relief. Of course I want no pain at all, but these clusters/burning...Any pain is better than the taser face pain.