That's cool. I remember being on Lyrica before and I was fine until the neuro introduced the Cymbalta and then I got rash. So you never know. I suppose the two of them together could be a problem for you, your doc, will know for sure, of course. But I guess only time will tell. Good Luck. Min
Check the side effects on your Indocin..I don't think it's a interactions with your other meds....just read up on the side effects of Indocin see if you have any of those effects....
i started the chew tegretols today...my entire mouth went numb....freaked me out, but it went away
about 30 miuntes after taking them
Kay May said:
I don't know which one affects me more... I am on both tegretol AND neurontin... 100mg of each 3x a day for a total of 600mgs.
The MAIN things I deal with are drowsiness/dizziness and brainfog... sometimes not being able to "find words... jumble words etc"
Random side effect... the chewable tegretol tablets.. kind of make my tongue tingle lol. not troublesome though... just kinda weird.
I also find.. that even if I'm pain free for the time...I get a lot of pain RIGHT AFTER taking the meds before they calm down again... anyone else get that??
Hi Fred, just wanted to add that there are slow release Tegretol pills. I started on the regular ones and recieved no relief, but the slow release ones have been good for me, sonething to think about. Also, it takes time for the Tegretol to start working and for your body to adjust. You have to give it some time and with your doctor slowly increase.
My side effects are word recall problems, initially when I started or when increase the dose, I get vey tired, fatigued and experience some leg, arm weakness, but it does go away.
Good luck to you,
Hi Mimi,
Thanks for the reply. It seems I will not need to worry about any pills like Neurontin or Tegretol for a time. My neurologist basically gave up on me when he had me in the hospital for a few days and could not "cure" me. Given that he has put me in limbo on treatment (I am supposed to have an appointment here in a couple of weeks...though I will not need it), my General Physician and I just tested a bunch of random things that we each had hunches about (thyroid, sedimentation rate, Vitamin D, testosterone, etc.) to see if anything was off. Turns out my hunch, testosterone was the culprit. I am so glad that my Doc did not give up on me like it seems my Neuro did. For some reason my testosterone was nearly 100 points below the minimum of what it should be for someone of my age (early 30s). Without being crass, I would have had no reason to test it other than an anecdotal account from a man I had met this spring who had had the same style persistent headache as I and who had developed TN as well. Upon receiving hormone treatments, after 7 months of TN and headache (same amount as I by the time I found my magic bullet), his headache went away in days and his TN went into remission within weeks. I am now nearly 3 weeks into my treatments and I can say that my headache ended within a few days and my TN is now in remission. I have been able to grow a beard again, something that hurt horribly a couple months ago, and I worked out for an hour straight last night without triggering any facial pain. I am left wondering if there is a connection between one's endocrine system and TN with Persistent Unilateral Headache. It sure seems so. I wish all could find their thing that can fix/help them without surgery as I have. It was a really dark and painful time for me last fall and winter. It is amazing how a neurological problem can be fixed by treating something that is not neurological in nature. I am not naive enough to avoid holding the fact that my TN2 may just be in remission in the back of my mind, but the hopeful part of me thinks that if I can keep my hormonal levels in check I will not experience my TN2 any time again soon. Best of luck to those still suffering, may you find pain free days....
Mimi said:
Hi Fred, just wanted to add that there are slow release Tegretol pills. I started on the regular ones and recieved no relief, but the slow release ones have been good for me, sonething to think about. Also, it takes time for the Tegretol to start working and for your body to adjust. You have to give it some time and with your doctor slowly increase.
My side effects are word recall problems, initially when I started or when increase the dose, I get vey tired, fatigued and experience some leg, arm weakness, but it does go away.
Good luck to you,
Fred, I am astounded and so happy for you. I also hope that this is the end of your torment. My Neuro said that TN can be caused by many things but lack of testosterone i would not have connected with TN! How fortunate that you met the man with the same condition. I did wonder how you were and thought it was all the spicy food you were eating that must have been helping!
Hi Fred/Mac/Anyone else,
I'm switching from Gabapentin to Teg. after telling my neuro doc yesterday that the Neurontin just wasn't stopping the pain jolts (Type1/L. side). I've always been concerned about possibility of potential liver damage issues with Teg., and so I stuck with the Gabapentin (since June 2009) . But, pain seems to keep on breaking through, even at 2100mgs--- So, tomorrow I'll start out with 100mgs of Teg 2X per day.
I was surprised when Doc said I could continue with the Gaba. at the same time. I'll do that at about 900mgs; I'd really like to calibrate my dosages of both meds until I get the proper ratio/strength that will assure my sanity.
Why? Because the surgical option outcomes I've read about here and elsewhere do not inspire confidence to this point.
So... My Brothers (or Sisters) in pain, please provide some feedback...Thanks.
Blessings,
Rick
Hi acuppacoffee , when I read that your TN goes into remission after the hormone treatments , I was astonished. It seems that TN and testosterone are not related at all . My TN started one year after my menopause, I wonder if there is any connection .
Hi acuppacoffee , I forget to congratulate you for not having to take all those horrible pills that have so many side effects. I am so happy for you. You are so lucky to see light at the end of the tunnel.
I am soo happy for you Fred.. I hope this is the end too. :D Sincerely, Min
woo hoo!! Fred!! so glad to hear you are doing so well!!! YEAH! :D
Sooooo happy to hear you found relief from your pain Fred :)
Hmmm… This makes me wonder. I had to recall, but I didn’t have a major episode of TN1 while I was pregnant, my son is now 13
Months old.
Seow W said:
Hi acuppacoffee , when I read that your TN goes into remission after the hormone treatments , I was astonished. It seems that TN and testosterone are not related at all . My TN started one year after my menopause, I wonder if there is any connection .
I read somewhere that it is unusual to have a TN attack whilst pregnant, is this true?
I can only be anecdotal in regards to the issue of hormone levels and TN, but mine has nearly completely gone away at this point. I start to get tingles if for some reason I have been up for something like 20 hours or if I have had a physically tiring day. I had met a man who was diagnosed with Trigeminal Neuralgia with right-side persistent headache (TN2 fits best I believe), once it was determined by his urologist (of all people) that his testosterone was low. This was after something like 7 months of bouncing from neurologist to neurologist, using several of the standard prescriptions for TN2, and getting nothing but side-effects and no answers. He is also around my age. I am 34, I believe he is 36. I, just like him, have seen full relief of my headache and neuropathy with hormone therapy. Vesper had posted a comment on my wall about studies showing links between low testosterone in men and high estrogen in women and cluster migraines.
My cousin had cancer and his treatments somehow depleted his testosterone. He is in his 40s. He started having neuropathy (similar in description to TN -- burning, shocks, his foot often felt wet -- said it was maddening) recently in his foot. His doctors have now started him on hormone treatments and his foot pain is going away. Were I a research scientist I would love to run a formal study on this.
I am just glad I am getting back to normal. Have ran 2 miles on two different nights this week followed by crunches and weight lifting totally an hour each night without breaks between the aerobic and muscular workouts with no pain other than the good soreness one gets from being really worked out. I have cleaned my garage (I mean really cleaned and organized it) and landscaped my yard. All of these things would have been improbable if not impossible if my TN and headache were still in full force.
It is only a blood test, but seems worth it for others who are suffering. I believe that the headache and TN seem to often hit men that are older than I. Lower testosterone levels occur naturally in men as they age. Just might be on to something....
Hi Fred, I am glad that you are getting back to normal . Women age faster than men and perhaps this is one of the explanations why there are more women here. It is interesting , there might be something…
Best wishes,Seow
Can tis happen to grls too?
TN most commonly happens to females over 50 is there a link with the menopause?
Hi Fred,
On 04/24/12 I saw my neuro Doc and told him that on 1500-1800mgs of Gabapentin, I was still having horrible "break-through" pain. He (and his associate, a PA; whom is excellent), put me on Tegretol 100mg 2X daily. Up to that point I was concerned about Teg and the other TN meds that had the potential for harming the liver--but I was getting desperate because the Gabapentin was just not "answering the mail" for me.
I have to say that after 3 days on Tegretol (chewable, yet--kinda weird...) my pain has all put disappeared. It hasn't been long enough a time for me to get overly excitable and dramatic. But knowing that this entry-level dosage can be ratcheted-up while I can continue to take the Gabapentin, a benign med that had some helpful aspects, but just not enough; provides hope.
I'm thankful for today. Praise be to God and "Blessings to All" at this Forum!
Rick
aCuppaCoffee said:
Rick Bruce,I was taking 900mg of Gabapentin (Neurontin) per day prior to going in the hospital. My neuro switched me off of it as he thought the Gabapentin was causing too much "brain fog". Guess I'll see how 200mg of Tegretol compares to 900mg of Gabapentin.
Fred
Rick Bruce said:Fred,
If you mentioned it, I missed it and apologize; but how much Neurontin/Gabapentin were you taking prior to this procedure? I'm now trying to calibrate my Gaba. dosage level and am asking for input from members here that indicate they've been on Gaba. for a while. I was on 600mg per day--didn't even begin to do it for me as I have very intense Type1 shocks.Gabapentin is the only med that I currently take for my TN. Neurodoc said OK to increase by gradual steps...I'm now doing 1800mg, and pain is subsiding nicely for now, but I'm sleepy and "spaced-out"--(An old 1960's term) Neurodoc will change my meds if I express the need to do so...I'd prefer Gaba. if we can get the dosage figured out, as this med appears to be fairly benign. Thx. Rick
I have my pre-op full physical in two days for an MVD that is scheduled for May 21. I know that during this physical they'll draw blood and do whatever tests they need to do. I wonder if I asked them to also run a test for testosterone if they'd do it? I'd much rather have that as a possibility then go through the MVD and be out of commission for a month needlessly.
I'm glad I saw this thread, thanks!