A funny thing happened to me the other day, and I guess I never really thought about it much until it was said to my face.......
I'm a heart patient and also have TN along with a couple other little ailments that require I take medication to manage them. Well; I always print out all my meds on a sheet of blank business cards and on the reverse side I print my contacts.......this comes in very handy when going to the emergency room, updating records at the dentist, physio therapist, etc......I always give copies to my close co-workers.......I recently updated my list and handed them out.....a co-worker took one look at the card and asked "so, how does it feel to be a walking pharmacy?".
I guess I don't think much about all the pills I swallow every day......since being diagnosed with TN a few months ago (but since realized I had issues relating to TN for the past 35-40 years), my medication list has grown and I've had issues with negative interactions with some of my other meds, but ya know, I've had some of the best months in my entire life.
Sure, I've been sick a lot while the doctors figure out the best combination of meds for "me", and I've had the odd day where I get a severe headache for a few seconds.
I guess I just want to say it's not all "doom and gloom" out there.....for those having a really rough time, I'd like to say....hang in there until you find a doctor willing to work with you....things can be improved.
I am right there with you! I feel like my list continues to grow despite not having much relief. I just recently was referred to a pain management clinic. I think that was the best referral EVER as those drs are trained to not only help with the pain but also will work with you to fight the condition. They are able to put 5 medicines into one pill without having five separarte pills at 100% level each. Instead, they may put in 20% gabapentin, 20% tegretol, 20% lidocane, 20% vicodene, etc. BEST REFERRAL EVER! I highly recommend working with your Dr to receive a referral to a pain management clinic. If you live near a research hospital, go there. It is worth it–even if you have to have someone drive you an hour away.
HEATHER; What is the combo you are on now that provides relief?
Heather said:
Thank you, Darryl! I have felt like a walking pharmacy, too. I don’t like the fact that I HAVE TO take so many meds for a few reasons, but it is just my new normal and I have to accept it. I have finally found a combo that works for my ATN…best pain relief I have had thus far and I don’t wish to tinker any further! It can be very difficult to not get sucked into depression when you have pain like this, especially if depression is something you have struggled with before this all began. I’m feeling better, a little at a time, and for this I am grateful.
Heather I too suffer from ATN what combo of medication works for you?. I am on oxcarbazepine and just started baclofen Krissy
Heather said:
Thank you, Darryl! I have felt like a walking pharmacy, too. I don't like the fact that I HAVE TO take so many meds for a few reasons, but it is just my new normal and I have to accept it. I have finally found a combo that works for my ATN....best pain relief I have had thus far and I don't wish to tinker any further! It can be very difficult to not get sucked into depression when you have pain like this, especially if depression is something you have struggled with before this all began. I'm feeling better, a little at a time, and for this I am grateful. :)
I’ve been living with TN for 6 years - diagnosed 2 years ago and treated pretty effectively with Tegretol. Recently it has flared up and I increased the dose, which my doctor does not want me to continue because it lowers my sodium too much. I need to think about other options. Did I hear Dr. Casey say the longer one lives with TN - the less successful MVD may be?
You’ve got to keep working with your doctor to find what works best.I too, struggled for a long time…but finally have the right combo. It has to be tweaked now and then but hopefully it’ll stay good. Hang in there. It gets better. just like Darryl said …it can.
do you have the feeling that it is only temporary and that eventually you will need MVD? Do you fear if you take the meds too long MVD will be less effective?
I don’t know about Dr Casey but Dr Linskey did my daughter’s MVD and YES, over time the meds be one less effective, the pain is more and more frequent and lasts longer DESPITE increasing meds. You do reach a point of diminishing returns with MVD. Once the compressions are removed (my daughter had 7, and no one ever saw them on MRI), the nerve can re-myelinate itself…up to a point. After a certain amount of damage is done, the results can not be optimal. My daughter had TN for 4 years before MVD. Oher neurosurgeons always told us she would eventually need MVD–Dr Linskey very clearly explained to us why we should not wait. It gave me my daughter back.
wow. thank you for a detailed answer. I have a lot to learn. Will do more research. How did you find Dr Linskey?
StacieWins said:
I don't know about Dr Casey but Dr Linskey did my daughter's MVD and YES, over time the meds be one less effective, the pain is more and more frequent and lasts longer DESPITE increasing meds. You do reach a point of diminishing returns with MVD. Once the compressions are removed (my daughter had 7, and no one ever saw them on MRI), the nerve can re-myelinate itself....up to a point. After a certain amount of damage is done, the results can not be optimal. My daughter had TN for 4 years before MVD. Oher neurosurgeons always told us she would eventually need MVD--Dr Linskey very clearly explained to us why we should not wait. It gave me my daughter back.
Now that just about sums up how I feel many days.....that the doctors are experimenting with me. It appears that my TN is very well controlled with meds right now and I don't even get a slight headache for days at a time....it just feels so nice "right now", but I do know and fully understand I will eventually return to my former state....but I'll take what I can get right now :)
However, getting my TN under control has been at the expense of my heart condition deteriorating which is a major concern to myself, my wife, and my doctors. It seems all I can do is increase the dosage of my heart meds, and more specifically, the heart meds that make me rather sick. So now I'm taking 800 mg of Tegretol that doesn't particularly agree with me, along with a bunch of beta blockers that are every bit as upsetting to my stomach.
I'd just like to take a few weeks vacation from all these meds, just so I can remember what it was like way back when I didn't require any of them.
Oh well, maybe some day. :)
Jamie said:
I know I have been over-medicated and under-medicated in my 16 years of TN.
I too am a walking pharmacy since in addition to trigeminal neuralgia I have migraines, acid reflux and common variable immune deficiency. And I too have the list of my meds on the back of a business card for easy reference. Like you, I am one of the fortunate ones for whom TN is not overwhelming - Tegretol works well for me, and I now know how cold and wind affect me. My saying is, "It is what it is." If we don' deal with it, the alternative isn't great. Keep up the good attitude - it goes a long way toward being able to deal with the cards we've been dealt.
HEATHER; What is the combo you are on now that provides relief?
Heather said:
Thank you, Darryl! I have felt like a walking pharmacy, too. I don’t like the fact that I HAVE TO take so many meds for a few reasons, but it is just my new normal and I have to accept it. I have finally found a combo that works for my ATN…best pain relief I have had thus far and I don’t wish to tinker any further! It can be very difficult to not get sucked into depression when you have pain like this, especially if depression is something you have struggled with before this all began. I’m feeling better, a little at a time, and for this I am grateful.
Hi all! Have ready through the many posts related to "feeling like a walking pharmacy." I am curious what works--meaning, what is the best combo of meds that seems to work for you?
just like Darryl said …it can.