Need advice/opinions...Help, please :(

General General TN & GPN (Old Site)
1

I'll try not to ramble (which I tend to do :( ) but I'm...Freaking out a little bit and need some advice please...Short back history, developed TN in 2011 (I was only 27 :( ) and I've so far been through these medications;

Tegretol (didn't help)

Norpress (helped for around 4 months)

Lamotrigine (didn't help)

Then moved to Gabapentin (Godsend) which worked fantastically on it's own for around 16 months, although over that time the dose got gradually bigger. Then Baclofen was added and the two together worked pretty well for a further 6ish months, (although the doctor added Effexor-XR in there for the bits of break through pain but it did nothing to help) and then finally we added in Topamax.

My current dose is;

Gabapentin - 3200mg

Baclofen - 60mg

Topamax - 25mg (it's the most piddling dose but it's worked well believe it or not, yet is still enough (don't understand WHY) to give me a horrendous amount of side effects.

Of everything I've ever tried, Topamax is the WORST. We're talking 20+ side effects, but even cumulatively they aren't worse than the pain so I just cope and I'm grateful to be pain free bar the odd twinge or flash. Until recently, where a side effect has popped up that's just...Not on my list of being able to cope.

It's made me start sleep walking. And I'm terrified of harming my mother whom I live with, or myself...I've already proved I have the potential to do this as during one episode, I apparently tried to give myself a dose of Gabapentin by pouring the bottle to my mouth rather than shaking out a single pill. It's only the fact the gel caps (4 of them) got caught on the moisture on my lip and that 'wrong' sensation woke me up somehow that stopped me. That TERRIFIED me. I also seem to like taking all my clothes off during episodes. *blush* Also sleep talking, holding entire conversations but then becoming very agitated coming out of it because I'm so confused :(

So although the Topamax IS helping, and I'm frightened to do it, I want to stop taking it because the alternative scares me more. The advice/opinions/help I need though please is....What could I try in it's place?

I live in New Zealand so not everything is available here, and some that are, aren't funded and beyond what we could afford. Lyrica, for example, would be around $150 (minimum, from what the doctor suggested) a fortnight.

Has anyone tried Zonegran? Supposedly it's like Topamax? Is it as good/have the same bad side effects? I don't even know if it's available here but from what I've tried to investigate, it seems like it might be the most logical replacement for the Topamax....Provided it too doesn't cause sleep walking.

Surgical options are not really available to me, and I have a constant fear/anxiety in the back of my mind because I have this for life and I'm already running out of medications...

Any help would be very greatly appreciated.

....Sorry for rambling anyway.

2

I would talk to your pharmacist about your meds and how they Interact, and React.... see if they have any suggestions

to make it so you won't suffer these consequences... be very frank

Maybe with the pills, at least get a pill box and divide them up so you won't get in the pill bottles when sleepwalking

Perhaps look in our doctors tab here - and see if there is a neurologist that has a second opinion

OR

Try asking if Trileptal would be better - and take one of those other meds out???

I will put a link of our favorite meds --- keep researching!!!

Can't paste it ==== put this in search box above here in discussions " merry-go-round"

ALSO - you need to look into creams and patches - for less pills!!!

Find in search box-- "topical medications"

many options

OH

And have you gotten your hands on lidocaine face patches???

Many doctors don't know that it is a GREAT help to many,

is a prescription here in USA

3

Many people refer to Topomax as "Dopeomax" - to put it bluntly most people find it to make them stupid. Do things they normally wouldn't do, unable to find words, or form a sentence. I advise consulting with your doctor about discontinuing Topomax (be sure to do it slowly as it can cause withdrawals) and move on to another one of the many medications available (see the list KC referred to). For me after trying 14 different medications, I found that a combination of Tegretol and Nortryptline to work the best - for now. Many drugs have worked for me, then stopped working. I would consider what you are describing a serious side-effect and your doctor should know about it ASAP. Hope this helps.

4

where do I find the link to Our Favorite meds? Tried so many with horrific side effects. Going to new neuro in a month or so and would like to be able to ask for something that will help without making me gain weight or become stupid. Neurontin made me gain 40 pounds in 5 mts. Lyrica made me sucicdal in 3 days and some wouldn't let me sleep at all. Help folks, please.

5

Thanks so much for the replies so far! This is so hard...This is my third year with TN and I'm already so tired of the constant back and forth, changing meds/doses, side effects...:(

This year it feels like I've been at the doctor at least every 2 weeks for one thing or another (I have some other health issues) but I'm starting to get scared to go in case they start thinking I'm a hypochondriac/attention seeker...

The stress of this has increased the little jolts I'm getting, because I find stress to be a huge trigger for me, which just ups my anxiety even more :(

KC, basically most of my meds interact in some way, we just try to skirt round and manage it. The Topamax has messed with my diabetes (thanks to fooling around with my Metformin) given me low blood pressure (I take Quinapril to keep my BP balanced) and made me anemic, among other things...(seriously, it'll take too long to list them all) and I've only been taking it for 2 months. There isin't much the pharmacy can do. I'm not sure how it is in the States, but here it's pretty much 'dispense and disperse'.

The trouble with pill boxes (we had ideas of putting them away, etc) is that I do NEED to take a dose during the night...And I struggle to get things like that open. We thought of changing the location each night to confuse my sleep walking self...But my waking self won't remember either. (yaaay moosh brain, she offered sarcastically lol )

Trileptal (if I'm understanding right) is in the same family as Tegretol...I don't seem to do well/respond well to those, I don't know why...I'm scared to knock out the Gabapentin because it seems to be my anchor, and rather we are trying to just supplement it's effectiveness, for now, as it's waning so I can't stay on it solo, too much break through pain :(

Again, it's different here...I asked about the patches etc...It's not really a done thing, here. And he said the potential things they'd probably use could do damage to my skin - I have insanely sensitive skin. The rashes from the meds aren't fun, especially because they tend to affect my face/throat/chest and I look burnt.

My doctor is pretty darn good at figuring a problem out - The first time I went with the pain, he said "I think you have TN". I'm so grateful for that, compared to the hell some others have to go through...But as far as the follow up, he tries his best but isin't fantastic. I told him about this site and he fully endorsed it, saying that often in the case of TN, communities like this end up knowing more and being able to give the DOCTORS the info on TN...So it's sadly more or less now up to me to suggest ideas to HIM and then we figure it out from there....Which is why I rely so heavily on this group, and I'm so grateful for it...

Gail.....YES YES YES! Dopamax, I agree wholeheartedly. Aphasia (according to it's listed side effects) covers that, I think...And you DO suffer badly...I forget the names of people/things, forget what I'm saying in the middle of a sentance, slur my words, get my words the wrong way around, use the wrong word (especially if distracted, which you become A LOT on Topamax, eg looking at a ball on the carpet but talking about the cup on the bench then becomes a sentance about the ball on the bench, etc) and sometimes insert a word that makes NO sense...I think everyone does this from time to time but it is So. Much. Worse. on Topamax...It's mutiple times a day.

I'm on minimal dose (measely 25mg, which shows how badly side effects hit me sometimes) so I don't think it's possible to do anything but stop cold turkey.

Nortryptiline is Norpress, which I have already used with some success, but which failed completely after 4 months. I seem to develop a tolerance to them very quickly when they do work, or my body rejects them quickly when they don't (ie Tegretol caused nausea so bad after just 2 days on it that I couldn't stand up without nearly losing it...I HATE that I'm like this...I wish I could just...Take my pills, have them work and get on with things)

The doctor is the one who helped me piece everything together and helped me realize I've been sleep walking so he knows but wasn't overly concerned...I AM and I'm too scared of what might happen.

To add insult to injury, I had a disasterous attempted MVD which has shut down the chances of some long lasting relief as both the neurosurgeon and the neurologist have both more or less said 'nothing more can be done, bye bye now, come back only if you get so bad you want somebody to kill you'....I'm paraphrasing but...Yeah. It's not as easy here to see a neuro...You need to be referred through the doctor, wait months, and then you might get a 15 minute appointment, if you're really lucky. TN just isin't big on the radar here.

6

Well Lupa, one thing for sure is that what ever you are taking or how much pain you are in, it hasn't taken away your sense of Humor! And that my friend is powerful, I think once we loose the ability to laugh at our situation is the day that we give in and give up!

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I fully agree :) Ironically, my motto has always been "I will never give up, I will never give in" !!!..But some days are harder than others :(

Reading the merry-go-round list...Most I've tried/or are in the same family so very doubtful, aren't available here/cost too much, aren't strong enough....The hard thing with TN is the list has a limit. And you can mix a cocktail of different ones to a point, but even then...

As if we don't all already have enough to deal with just having TN in the first place.

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Lupa, I had terrible side effects with Topomax as well and I only tried it for 9 days. I am still waiting on my blood work from right after I stopped because it was worse for me than before I was diagnosed/medicated for tn. As far as the Trileptal, from what I heard Dr. Casey say in the video, this drug was developed (at a cost of $11 million) to work with almost no side effects as an alternative to Tegretol. Sorry if I butchered it but going from memory of the video I just watched this afternoon for the second time. There is so much information there I highly recommend you try to view/listen to it. It is called "The Tides of Neuropathic Pain". A little more info is that doctors are scared of us because they do not know what to do with us. That's my guess with your neurosurgeon and neurologist.

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I'm sorry you had a bad reaction :( I'm starting to feel pretty good about sticking it out for 2 months....Every side effect, I look at it like this;

Is it worse than the pain? No.

So it goes into the 'power through it' basket. Even cumulatively, all the side effects (and it's a staggering list) STILL don't weigh up as worse than the pain...Nothing does. But this is one side effect I'm just not willing to risk. Not this time. :(

Where abouts can I find this video...?

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If you google The Tides of Neuropathic Pain, it will pop right up. Dr. Kenneth Casey. The video is 2 hrs but worth it.

My reaction was severe electrical activity(?) throughout my body and pins & needles, zaps (face, arm, etc.) felt like my blood was burning inside my body, I could not sleep at all without sleeping aid and such severe dehydration. Several times I nearly took myself to the hospital over it. The pains for me were actually worse than the tn pain. I had that feeling your neuro told you about. It has taken a couple of weeks back full dose of gabapentin to come even close to where I felt before this experiment. Wish the dr. had requested bloodwork before the trial.

11

*hugs* That's awful, I'm so sorry! :(

The neuro didn't expressly say, y'know, 'when you want to kill yourself' but it was the feeling I was left with as both he and the neurosurgeon became quite dismissive towards me as time when on, and couldn't offer anything further other than trial different medications. You can't even 'doctor shop' here, as on the public health system you get who they give you and that's pretty much that.

They tried to do an MVD but I suffered a cerebellar herniation...Something or other. They opened my skull and my brain decided to bulge out the hole so they had to just close me up again. The TN was insane for 6 months after that, because of the constant pressure on the artery/blood vessels...

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What scary stories guys. I’m desperate to meet with a surgeon but isn’t it crazy what this condition makes us prepared to risk.

13

Have you gone to the tab here

Groups

Join the aussie group!

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I've been a member of the Australia/New Zealand group for awhile...But it's quietish and just like me, I think most of the members refer/appeal to the community as a whole for help since it's larger. It seems they are doing some things with lidocaine patches in Oz, but my doctor told me not here, and what we have here (basically anasthetic gels, I think?) isin't really suitable for long term use...I never seem to have remission. In 3 years I've never once had a period where I could 100% come off medication :( At best, I was able to lower it....Which scares me too, because supposedly TN gets worse as you get older? I don't know how I'll cope as the years go on, and that makes me sound so negative and feel so defeatist, and that's NOT who I am...