Hello, I’m back again. It seems I visit this page a lot when my boyfriend is going through a bad attack. We had a bad episode in November, and I’m thankful I didn’t have to visit until now. We had a great holiday season.
So as usual, the tough part of this for me is the behavior and mood swings. Like I have said before, he always gets odd before the onset of an episode. It gets really bad when these last for long stretches of time (weeks), and he gets terrible mood swings and major personality changes.
He doesn’t have medical insurance, as he is self employed, and he doesn’t take any meds for management of TN. However, I’m beginning to wonder if he does have a secret stash of meds somewhere he takes during these long stretches of time. I did discover some prescription meds in a contact case he gave me (non TN related and for physical appearance), and I do know he has lidocaine cream and patches he got somewhere. So, it wouldn’t surprise me if he has something he takes when the pain becomes unbearable, because believe me, I don’t know how he can’t take something! If this is the case, what are some short term meds would he take and what are the side effects? I am also concerned, as I was reading some bad things can happen with some meds if stopped suddenly. His side effects are mood swings, scripted phrases he uses a lot during these times, and just a major personality change. Last time, he complained of numb legs he couldn’t feel and thought that was due to pneumonia?? (Which I never saw any other symptoms of that–again, some statements that don’t make logical sense).
I could also understand if it due to him feeling crazy about this last episode not ceasing, because I am feeling crazy, so I can’t imagine how he’s doing.
I also have to say it’s like clockwork…the cycles are the same and the behavior is the same during these long time periods of pain, which is making me think it’s medication. I anticipated this blowout and was trying to avoid it but that didn’t happen. I’m upset but I’m almost used to it by now. You’re probably thinking why doesn’t this girl know how he gets these meds, and I’m wondering the same thing. But I deal with a prideful man whose forte is NOT communication. Sigh.
as for the meds, where he gets them from no idea im afraid, im in the UK and my dr will happily throw prescriptions at me, as far as mood swings and personality changes, its going to be a bit of both. The pain drives you round the bend, you cant help being short with people, its always the ones closest that are going to suffer this the more as well, its not intentional i assure you. It is so difficult living with this pain, the meds definitely drive you crazy.
My pain also seems to come in cycles, I will have a few days or sometimes it will run to a week or two of little or no pain and then it will gradually creep up over the course of a few weeks and have a couple of weeks of high pain levels then it starts to drop off again, its probably 3 month cycles.
My wife cant stand it, she feels so frustrated that she cant help and i think she suffers almost as much as me. We are currently having a break.
The pain really does change your outlook though especially if you are expecting it to last for a couple of weeks, I always find it worse after a good few days or if im really lucky weeks, that first attack of pain after a respite literally breaks your spirit, it can leave you close to tears just knowing that its flaring up again. I can have a really good morning a be in a really good mood, one big pain flare and you feel so deflated. I am currently inbetween meds, I hate taking them, havent found anything that has relieved the pain completely and all the meds I have taken previously have made me slightly crazy so I can appreciate why he wont do. Good luck and hang in there, he is lucky to have someone who cares for him like you do who will take there time to look into this on his behalf.
I can tell you from personal experience that unmanaged TN pain for periods of time can change a person…
I get physically tired, exhausted, patience becomes non existent, AND I become short tempered and ashamed to say I start speaking with “trucker mouth” swearing, which is NOT like me at all. Combine that with the side effects of meds and well I often say things that don’t make any sense at all.
If he is taking anticonvulsants on an as needed basis, he needs to stop. They just don’t work that way…they need to be taken regularity to work, and it’s a gradual dose increase as well as a gradual weaning process which the doctor should supervise and dictate. Many serious complications can ensue if this is not followed…
I hope you can have an open conversation with him regarding your concerns. Positive thoughts, (( hugs)) Mimi
Thanks for the information. I feel like I constantly ask the same questions over and over again, as I really don’t get it sometimes. Things go so well for a period of time then they can change so drastically, quickly. These times cause so much anxiety for me…if I had TN, I would be in full attack mode right now :–
borris said:
hi kristen,
as for the meds, where he gets them from no idea im afraid, im in the UK and my dr will happily throw prescriptions at me, as far as mood swings and personality changes, its going to be a bit of both. The pain drives you round the bend, you cant help being short with people, its always the ones closest that are going to suffer this the more as well, its not intentional i assure you. It is so difficult living with this pain, the meds definitely drive you crazy.
My pain also seems to come in cycles, I will have a few days or sometimes it will run to a week or two of little or no pain and then it will gradually creep up over the course of a few weeks and have a couple of weeks of high pain levels then it starts to drop off again, its probably 3 month cycles.
My wife cant stand it, she feels so frustrated that she cant help and i think she suffers almost as much as me. We are currently having a break.
The pain really does change your outlook though especially if you are expecting it to last for a couple of weeks, I always find it worse after a good few days or if im really lucky weeks, that first attack of pain after a respite literally breaks your spirit, it can leave you close to tears just knowing that its flaring up again. I can have a really good morning a be in a really good mood, one big pain flare and you feel so deflated. I am currently inbetween meds, I hate taking them, havent found anything that has relieved the pain completely and all the meds I have taken previously have made me slightly crazy so I can appreciate why he wont do. Good luck and hang in there, he is lucky to have someone who cares for him like you do who will take there time to look into this on his behalf.
Thanks Mimi. It seems like the cycles have gotten worse, and the toll they take on the relationship are wearing on me. It’s hard to go from solid to shaky…I’m hanging in.
Mimi said:
I can tell you from personal experience that unmanaged TN pain for periods of time can change a person... I get physically tired, exhausted, patience becomes non existent, AND I become short tempered and ashamed to say I start speaking with "trucker mouth" swearing, which is NOT like me at all. Combine that with the side effects of meds and well I often say things that don't make any sense at all.
If he is taking anticonvulsants on an as needed basis, he needs to stop. They just don't work that way...they need to be taken regularity to work, and it's a gradual dose increase as well as a gradual weaning process which the doctor should supervise and dictate. Many serious complications can ensue if this is not followed....
I hope you can have an open conversation with him regarding your concerns. Positive thoughts, (( hugs)) Mimi
TN is a progressibe disease. It gets worse with shorter cycles in between.
Get into someone and pay cash for a consult. Many of the meds are cheap. Tegretol is on the 4.00 drug at Target. Gabapentin is CHEAP. 19.00 for my large supply per month again at target.
Chronic pain is like that. But so is overuse of opiates like oxy. Hard to te which it could be.
If he has an official diagnosis, he should be able to take that diagnosis to his doctor or a doctor and have med management–/ like at a pain clinic.