Yesterday was a dark day. I have known sadness, depressive feelings, been down, discouraged etc, BUT yesterday was a new experience.
I felt so “dark” for lack of a better word. I could not and would not get off my couch, the dark feelings were really disturbing. I didn’t feel suicidal, just dark. I wouldn’t talk to anyone, just felt like a heavy black cloud surrounded me.
Not a comfortable feeling at all.
Today I had my doctors appt. and we decided it must be the Neurontin. Mood changes are a frequent side effect. So we’ve now cut the Neurontin in half to only 300 mg. and in addition to the 1600 mg Tegretol we’re now adding some Baclofen.
Here we go again with a new med…anyone here ever been on all 3?
Don’t know much about Baclofen yet.
Hopefully it’s a smooth transition, it’s getting harder to find pain control, starting to really dislike the constant med changes and all that entails etc.
Just thought I’d update my current situation…
(( hugs )) Mimi
I want you to know and always remember you’re not alone. This diagnosis can be deveststing. You have to lnow that we all have days when we can’t get up. But you know what just when I think I just can’t take it anymore I’m always reminded that the next can be a good day. I completely understand the deal with the medication side effects. This is also been very hard for me to deal with. I think drug makers should put as much thought into that when they create these meds or at least be able to find ways to counter them. I’m here if you need to talk. We all our. Sometimes it’s just cathartic to come here and know you’re not alone. To be able to vent and not be judged. Praying you find relief with the new meds.
I havnt had a good day thats the scary part seems to be getting worse im trying to hang on not sure how I can go on …I wake up everyday in painnn and it never lets up my anxiety is through the roof pains like my face was burning last night and the shock scares the crap out of me sends my anxiety soaring then the pain just gets worse I feel like my worst enemy im ready to go I know that seems sad but I dont wana suffer. Im not ready to die I had a awsome life but I cant do this
I'm on all 3....actually 4. Tegretol 1200 mg daily, Neurotin 600 mg, Baclofen 40 mg. and 30 mg Nortryptaline. I also take Lexapro for depression. I like the Baclofen, I seem to have less muscle aches since starting it. I feel like the Lexapro does nothing for me anymore. My mood is pretty dark all the time. I guess that's to blame on the Tegretol and Neurotin. Or maybe the hopelessness of the situation is finally sinking in. As I read more and more I realize that I'm already on a fairly high dosage of most of the meds that are recommended for this condition and I still have more bad days than good. If I'm not in pain the side effects are unbearable. This week I started getting tremors in my left arm....fanfrickintastic! Hang in there though I know we can beat this. I just don't know how yet. :)
Bless your dear heart for sharing the throes of this disorder. TN is definitely not for the weak at heart! Your doc needs to be kept in the loop every 3 days or so when trying a new mmed. It is very natural when we have pain to have our seritonin levels drop to the floor. Our brains and body can only take so much! Taking Paxil for the depression part of TN sent me to the hospital for 7 days due to seritonin overload. Since then I’ve stayed away from antidepressants until the meds began to fail about a year ago. Now I use amytriptilene at night and try everyday to workout on my eliptical to bring the endorphines down to aid in pain relief. Workouts are the best pain reliever, but the anti-seizure meds make exercise difficult.
After 10 years and 3 survegeries, I rotate 7 different meds and have the botox for migraine every 6-8 weeks. The botox buys about 4 weeks of fair relief for migraine and TN pain.
Please feel free to contact me privately. We are stronger when we carry one another. So please, think about reaching out when your bombarded with unrelenting pain.
Those dark days are why I stopped taking gabapentin. My primary care doc put me on them after the initial diagnosis.
I went off of them when I found myself sitting at a kitchen table, after a 30 minute sobbing jag, experimenting with cutting (isn't that the realm of 15 year olds?) I too had no real desire to"end it all", but oh it was so so dark. Oddly, I didn't make the connection to the meds at that point. It wasn't until the following weekend when a friend asked what the effects were and we looked them up.
Why I didn't look them up earlier, I don't know, I was too caught up in school I guess.
I've since seen a neurologist who is weening me on Tegretol and avoiding gabapentin at all costs. She also recommended a therapist to help pull through the natural or med-induced dark moments.
It was one day, but my gut tells me it was the Neurontin. So I am glad to have reduced it.
But of course after cutting the Neurontin in half and adding the low dose Baclofen I’m struggling with immense breakthru pain. I’m so grateful that my heated magic bag provides a wee bit of relief to take the edge off this madness ! I know it’s only for a few more days until I can titrate up the Baclofen, at least I hope it’s just for awhile.
I hate that the meds are no longer working. This constant adding and changing meds is horrid!
I have a separate issue ( vertigo & imbalance) that I have been under investigation for this past year, we’re getting close…I think possible compression on 8th nerve as well as 5th.
In any event, I have to wait for end November appt with ENT.
Never a dull moment here…just hanging on the couch…my life now BUT hopefully not forever!
My spirits fluctuate which is normal…and I have hope.
Hello Brandywine, I am new to the site and have so many questions that I have have been worrying about for monthe. I take tegretol. Pheytoin and Baclofen. I was interested that you said that the baclofen helped your muscle ache. I have been talking to my neurologist about the mauscle ache for months and he insists that muscle ache has nothing to do with T.N. and I should see my G.P. I have felt awful as this [added extra as I call it] is getting worse and worse. The baclofen has helped the T.N. a lot as I do not have these acute anxiety attacks that I was having all the time with the pain. I think that because after the initial diagnosis of T.N.my G.P. left me with nothing but to suffer the pain until the MRI appointment came up. 4months with no help. I got. so down I wanted to end things. When I went to my neurologist, who saw me the day i phoned[ after finally giving up on my G.p. I was so sick it was pathetic. Not someone who vomits much but I was projectile vomiting over him while trying to speak to him. His nurse having given me a dish ,very quickly, had to give me a further 5 dishes as it would not stop.I do think that someone was watching over me as i got some very quick attention, having had none. Anyway, its been a 7 mth journey but have been getting excellent treatment from my neurologist and maxfax, but he has no idea why I would be having muscle pain on my left side shoulder and neck. The T.N. is on the left side. Apparrently this is unheard of so I feel terrible about it. I also am getting profuse sweats and freezing cold . This happens 21 times in 3 hours or maybe at its vest 7 times in an hour. This is also nothing to do with T.N. and is unheard of. Between the Pain and this I have not had any proper sleep in 7 mths. My head falls down and I dont remember amything for a few minutes every so often but that is usual in sleep deprivation. If someone else has any of these side effects please let me know because I feel like a freak. My health before this was brilliant, except for back ache which I learned to live with. Sorry for going on. Have had no-one to speak to.
Brandywine said:
I'm on all 3....actually 4. Tegretol 1200 mg daily, Neurotin 600 mg, Baclofen 40 mg. and 30 mg Nortryptaline. I also take Lexapro for depression. I like the Baclofen, I seem to have less muscle aches since starting it. I feel like the Lexapro does nothing for me anymore. My mood is pretty dark all the time. I guess that's to blame on the Tegretol and Neurotin. Or maybe the hopelessness of the situation is finally sinking in. As I read more and more I realize that I'm already on a fairly high dosage of most of the meds that are recommended for this condition and I still have more bad days than good. If I'm not in pain the side effects are unbearable. This week I started getting tremors in my left arm....fanfrickintastic! Hang in there though I know we can beat this. I just don't know how yet. :)
Baclofen is a muscle relaxer - if you think about it there are MANY muscles in your face -- when my neck would tense up - my face would hurt more -- I would get a new doctor Natalia
Anyone here that hasn't already -- investigate Lidocaine Patches for topical face relief asap!!!
Hi Natalia ~ I too have a lot of neck and shoulder pain on my TN side. I haven't mentioned this to my neurologist yet but I plan to at my next follow-up because it really feels like there is a connection.
Natalia said:
Hello Brandywine, I am new to the site and have so many questions that I have have been worrying about for monthe. I take tegretol. Pheytoin and Baclofen. I was interested that you said that the baclofen helped your muscle ache. I have been talking to my neurologist about the mauscle ache for months and he insists that muscle ache has nothing to do with T.N. and I should see my G.P. I have felt awful as this [added extra as I call it] is getting worse and worse. The baclofen has helped the T.N. a lot as I do not have these acute anxiety attacks that I was having all the time with the pain. I think that because after the initial diagnosis of T.N.my G.P. left me with nothing but to suffer the pain until the MRI appointment came up. 4months with no help. I got. so down I wanted to end things. When I went to my neurologist, who saw me the day i phoned[ after finally giving up on my G.p. I was so sick it was pathetic. Not someone who vomits much but I was projectile vomiting over him while trying to speak to him. His nurse having given me a dish ,very quickly, had to give me a further 5 dishes as it would not stop.I do think that someone was watching over me as i got some very quick attention, having had none. Anyway, its been a 7 mth journey but have been getting excellent treatment from my neurologist and maxfax, but he has no idea why I would be having muscle pain on my left side shoulder and neck. The T.N. is on the left side. Apparrently this is unheard of so I feel terrible about it. I also am getting profuse sweats and freezing cold . This happens 21 times in 3 hours or maybe at its vest 7 times in an hour. This is also nothing to do with T.N. and is unheard of. Between the Pain and this I have not had any proper sleep in 7 mths. My head falls down and I dont remember amything for a few minutes every so often but that is usual in sleep deprivation. If someone else has any of these side effects please let me know because I feel like a freak. My health before this was brilliant, except for back ache which I learned to live with. Sorry for going on. Have had no-one to speak to.
Brandywine said:
I'm on all 3....actually 4. Tegretol 1200 mg daily, Neurotin 600 mg, Baclofen 40 mg. and 30 mg Nortryptaline. I also take Lexapro for depression. I like the Baclofen, I seem to have less muscle aches since starting it. I feel like the Lexapro does nothing for me anymore. My mood is pretty dark all the time. I guess that's to blame on the Tegretol and Neurotin. Or maybe the hopelessness of the situation is finally sinking in. As I read more and more I realize that I'm already on a fairly high dosage of most of the meds that are recommended for this condition and I still have more bad days than good. If I'm not in pain the side effects are unbearable. This week I started getting tremors in my left arm....fanfrickintastic! Hang in there though I know we can beat this. I just don't know how yet. :)
I apologize for straying off-topic (Gabapentin's impact on one's mood...) here, but I too have balance issues. My neuro. Doc. attributes this to the peripheral neuropathy in my feet which he diagnosed via a battery of tests done over time.
I'm very curious if you've been given any causes for your balance problems and their possible relationships to your TN.
I have Type1 TN on my left side and I normally take 900mgs of Gaba. and 2-300mgs of Tegretol.daily which keeps me in a semi-zombie state, but seems to keep the intense "face-Taser" pain away for the most part.
I hope that you've had a good day, with many more on the horizon...
Hi Rick, peripheral neuropathy can definately cause balance issues (my motherin law had it)
My vertigo/balance issues started a year ago, and since then I have gone the route of having the doctors think it was BPPV, did some physiotherapy, took steroids in case it was an infection of the vestibular, had a cat scan looking for ear structure abnormalities, had full hearing tests, and just recently in September I did eng/vng testing for the inner ear.
It was this most recent test that an abnormality was present.
My ENT moved to Australia ( I’m in Canada) and so I’ve had to wait to see a new ENT to get my test results. This happens near the end of November.
My GP and neuro thought maybe it was a side effect of the Tegretol initially but that has proven to be not true. My GP explained at my last appointment that he thinks it could be related to my TN because my test results show a compression cause.
So based on my research I am thinking maybe I have a cross compression of both the 5th nerve and the 8th nerve, OR maybe it’s ms demyelination causing it? I do not have ms (that I know of)
I’m young (40), and my TN first presented 10 yrs ago at 29 yrs, at the time I had several other neurological unexplained symptoms and lots of testing, to no avail. I had an 8 yr TN remission
( I was naive and didn’t know it could come back) it was after a year and a half that the other issues started.
I have no idea if my vertigo/imbalance issues are related, just guessing until I see my ENT.
I’ll let you know, if you’re not convinced your balance issues are related to your peripheral neuropathy, you should maybe request further testing, again it could be these meds were on too.
Happy to hear your pain is somewhat kept in check, although sorry you and I belong to the Zombie Club!
Take care, ((hugs)) Mimi
I'm new to the site. I was diagnosed in June soon after the pain started. I was lucky. the Dr. that I saw had never seen it before but he knew right away it was TN. I was referred immediately to a neurologist who confirmed.
I am now taking neurontin. taking 1200mg a day. 600mg in the morning, 300mg in the afternoon and 300mg at night. I purposely avoid reading about and knowing the side effects of medications because I do not want to dream them up. But in the past month I have increased the Neurontin dosage from 600mg to 900mg and notcied that I slipped deeper into this tired, powerless feeling. Mentally I am not sharp. It seems like there is a haze covering my thoughts and my mind. I feel weak and my mood is not good. I am anxious and have really strange mood swings. I react in ways that are more exagerated than how I normally would react.
But most of the time I just find myself struggling to do anything or find pleasure in doing something. Is that the neurontin? After 6 weeks of taking it I decided I needed to talk to my GP so I have an appointment in 3 weeks time.
Does anyone have any ideas on how to cope with these? How to turn things around? I am relatively pain free right now although I do feel strange things on the right side of my face. Tingling in the ear, electric light shocks accross the cheek, tooth and jaw pain... Its not severe, no where near my first initial "outbreak" when I was screaming in pain. However, even though the pain is light I do not dare stop the medication because I am afraid of the real pain. But at the moment I am struggling to think clearly and was wondeering if anyone has find any effective ways of dealing with the side effects.
Any advice will be really appreciated. I am still new to this and my knowledge is limited. I have already tried tegretol but I got an allergic reaction and had to stop. With Trileptal I got these severe headaches and I would find myself always reaching for pain killers to stop them. After talking to a friend, who is a doctor, he prescribed me Neurontin. It was great to get rid of the headaches but now I am struggling. Its difficult to focus at work. Its difficult everywhere.
I have read many posts here and I noticed that several of you are taking several types of medications at the same time. You take lower dosages of various drugs. Is that to help minimise side effects or is that just a pain relief combo that you have finally managed to identify? Were you trying to avoid side effetcs?
Sorry for asking so many questions but I am really desparate for some help because I am really struggling to concentrate on work.
Bless your heart. I’m glad to hear that you’re feeling better. Time-released Neurontin (Gralise) took me so low that it really scared me and the folks around me. Needless to say I stopped taking it.
Mimi, has your doc ever considered any of the antidepressants?? effexor or amitripyline?? They are good for type II pain. I hope you feel better REAL soon. :D
In regards to the mention of anti-depressants above - Disepramine is a good one, too. Nortryptiline worked well for me but left an absolutely horrible taste in my mouth. They substituted it with Disepramine (there’s only a slight difference in the two) and I’ve been on it ever since.
Hi all, since my last post I am on 1600mg Tegretol, 200mg Neurontin and just upped the Baclofen to 40mg a day.
I still do not have adequate pain coverage, BUT I no longer have had that “dark” feeling.
I get down, frustrated, sad, cry, etc but those feelings are normal when dealing with chronic pain and not being able to do the things you once did.
I’m not depressed. If I were I’d be the first one to the doc to request an anti-depressant. We need to be our own advocates, and know our bodies and moods.
I knew that dark feeling was abnormal for me, my gut told me it was the Neurontin, and for me it was.
We all have to remember that we all react differently to the meds, some work great for some and some don’t for others.
If ever you’re unsure, talk to your doctor about your concerns…
*NOMAD,
The meds we take for TN take time to work in our systems, it is perfectly normal to feel more drowsy, lethargic , and have mood swings when taking these meds, in my experience after a few weeks it usually gets easier.
For a long time my tn was managed on just 800mg Tegretol , I was able to function, work, socialize etc this past April that level of med stopped working and so with my neurologist and my GP we have been trying to find a combo of meds that work…it takes time and MUCH patience unfortunately!
You might find that by the time you see your doctor you may be feeling better side effect wise.
My Neuro’s rule of thumb for me is If I have adequate pain control for at least 4 weeks, I can attempt to start reducing my med(s) to see if I can. If not, I stay at the same level of meds.
At the doses of meds I take now I have constant word recall issues, I forget a lot. I am sleepy in the afternoons ( but that could also be exhaustion from dealing with the breakthru pain)
I too struggle with pushing my self to do things, some days I push through and other days I give in and just rest…
Good luck to you, (((( hugs )))) and be gentle with yourself, it isn’t easy being on these meds.
Mimi
Just to clarify…i take the antidepressant for pain, not depression. Those tend to work better than anti-seizure meds for type II. I’m glad you feel better though!
if you’re not convinced your balance issues are related to your peripheral neuropathy, you should maybe request further testing, again it could be these meds were on too.