When I saw both my present and my new neuros back in December they both suggested that I increase my evening dose of Carbamazepine. I have fought this this as it feels like I am going backwards. The zaps I was feeling seemed to have abated slightly over the past few weeks to the point where yesterday I was almost tempted to decrease my dose and deny the zaps. Today they came back with a vengance. I had almost five hours of nonstop pain. I took a break thru med and now have increased my pm dose. This really feels like failure to me as it draws me further from my goal of returning to work, driving myself around and babysitting my grandkids by myself. My husband is so sweet and just hugs me and reassures me but this is not how I had envisioned my life. I HATE what Tn is doing to my life. Tonite I need to vent. Thanks for listening friends; I know you understand.
Funny, just last weekend I tried to test if I needed my meds and took my morning dose 4 hours late. Boy, did I pay for it later that day. It was like a dull ice pick to the the back of my head and my ear. It seems like when the meds are working we doubt that we really need them.
I'm in remission at the moment but I've learned from everyone else's experience not to abandon my meds. I don't know how long this grace period will last though as I have ever increasing numbness in my lips, toungue and the inside of my mouth and my cheek feels like someone is pressing on it. It's hard but to perservere with the side effects when you have no pain!Patty, if I could hug you from Australia you know I would.♡♡♡
I’ve lowered my dose by one pill - but I’m paranoid I’ll pay for it!! Such a difficult decision - pain or side effects?
I feel the hug, thanks so much.
catwoman said:
I’m in remission at the moment but I’ve learned from everyone else’s experience not to abandon my meds. I don’t know how long this grace period will last though as I have ever increasing numbness in my lips, toungue and the inside of my mouth and my cheek feels like someone is pressing on it. It’s hard but to perservere with the side effects when you have no pain!Patty, if I could hug you from Australia you know I would.
Totally understand, it is so frustrating. So glad you have such an understanding hubby and I second sending you a gentle hug! There are days I hate what TN is doing to me and hate being a caretaker to my disabled hubby, call them my pity party days and I let myself have them and then try to get back up pain and all. Venting is good for the soul! At the moment it seems nothing in my life is going well and the TN pain makes it all worse. As you know you are not alone and we care about you! Will be praying you get relief very soon.
Betsy
Patty, I assume a breakthrough med is one to relieve the pain that "breaks through" the meds you usually use to control the pain. What specific one/s do you take? Hang in there. Glad you have a supportive husband. Mine is too, very much so. ((())) hugs.
I am taking tegretol 200 mg, one in the morning and two at night. The other day I skipped the morning one, but had to go back to it since I had gotten zaps and a lot of burning (inside my mouth, my tongue) and the pressure on my cheek, right around where I had my attack. I also take gabapentin 800 mg three times a day and 10 mg baclofen three times a day. I went on the tegretol after being on the gabapentin and baclofen for about eight months. I've only had one major attack, but I already think in terms of "before and after the attack." My attack was in early October 2013, but I now live my life in fear of the next one. I was disheartened, when I started searching, that very few neurologists treat TN.
((( patty ))),
Boy do I understand about that feeling of going backwards after MVD instead of forwards!
This whole LwTN thing can be very discouraging and disheartening…
Patty, all we can really do is live in the moment and try really, really hard not to look too far ahead. TN has a mind of its own.
I have days where I’m just depressed, sad, grumpy and frustrated that I have no life.
Then I have days where I’m just ok.
Although I refuse to really accept that this is my life at 41…I know for my mental and emotional health I need to have some acceptance and give myself permission to deal with all the emotions that swim to the surface…venting is good!
Hope today is a better day…
Sending you big (((( hugs )))) Mimi xx
After my MVD I was able to decrease to 200 mg cr Carbamazepine morning and evening. Yesterday I took 100mg regular Carb for break thru as well as increasing my pm dose to 400 mg cr. i am a light weight for meds. These knock me on my flabby and ever increasing behind. I am almost back to where I started with Carb. I refuse to add Baclofen to the mix again as the side effects were just too uncomfortable. I am so grateful for this safe place to vent. I appeciate every virtual hug so much.
Today is better in that there is a space between the painful zaps. Still having them but the breaks make them easier to deal with. I will stay with the increased pm dose for a few days and see if that will be enough. Keeping my fingers crossed.
Mimi said:
((( patty ))),
Boy do I understand about that feeling of going backwards after MVD instead of forwards!
This whole LwTN thing can be very discouraging and disheartening…
Patty, all we can really do is live in the moment and try really, really hard not to look too far ahead. TN has a mind of its own.
I have days where I’m just depressed, sad, grumpy and frustrated that I have no life.
Then I have days where I’m just ok.
Although I refuse to really accept that this is my life at 41…I know for my mental and emotional health I need to have some acceptance and give myself permission to deal with all the emotions that swim to the surface…venting is good!
Hope today is a better day…
Sending you big (((( hugs )))) Mimi xx
I guys keep the faith its almost 6mths since my mvd im not taking any meds right now doing good still have numbness an little sensation a result of all the veins they distroy doing surgery but thank god no pain
Hi Patty, I also try to keep meds low. I have just gone back on meds after a remission of 6 weeks. It was the cold mornings (4am just before sunrise) that started if off again... My TN is very sensitive to cold for some reason that I do not know. Amazing how we are all different... Also if I try to keep very busy, as when I am concentrating on something, I do not feel the pain. The Neurologist said my brain just blocks out anything else... so I do not get pain when driving a car or at the gym, or gardening, or working on some project etc... but when I finish and sit down to relax - the pain comes.... strange... I went back onto meds and realized today that I was not taking enough as I had a really bad night, so increased the dose and hope I can sleep tonight... I believe it is a real juggle of meds and putting up with some pain... so I do not feel like a zombie and get nothing done...
Hiya,
I was just wondering if it's maybe your meds giving you that numb feeling inside your mouth...I experienced exactly the same symptoms when I changed to Gabapentin last year & I had to fiddle about with the dosage to align pain care with less side effects, such as the numbness in & around my mouth, tongue, lips, etc & the "Zombie-dom" :-)
The numbness even seemed to start extending to inside my right ear but the scariest bit is when your tongue & lips are so swollen that it feels like it's going to adversely affect your ability to breathe & even swallow. I altered my meds by 100mg at a time & thankfully found a comfortable spot with both pain relief & side effects...just a wee thought :-)
catwoman said:
I'm in remission at the moment but I've learned from everyone else's experience not to abandon my meds. I don't know how long this grace period will last though as I have ever increasing numbness in my lips, toungue and the inside of my mouth and my cheek feels like someone is pressing on it. It's hard but to perservere with the side effects when you have no pain!Patty, if I could hug you from Australia you know I would.♡♡♡
Hi Patty. I'm responding to your letter for a reason. Now keep in mind I'm three years into this condition. I'm only sharing my experience. You do what you and your Doctor's feel is right if it is working. I too was taking "Carb" tablets. Can't spell it and never could pronounce it. So I use the Tegretol non generic name. I kept increasing the dosage and the amts. per day according to N's orders. I was emotional, I felt weak, sick, blurry, couldn't hold a thought for long, and just wanted to lay around in bed. I tried holding a warmed up sock filled with brown rice over and around my head, and etc... I noticed that no matter what I took and how much, I might have better moments, but I had more exhaustion then anything else. Six months later I moved back to California from MN. I saw a primary Doctor in order to be referred to a new N. She looked right at me and said you have Bi-lateral/T.N. and told me that Tegretol is out dated, and very unhealthy to use for very long. It is bad for the liver. So she sent me to my ne N. who prescribed Neurontin and increased the Klonasapam mils. To me it's all the same. I have T.N. two which is chronic and the only time I am pain free is when I'm asleep. The Neurontin got increased, and again dizzy, sleeping a lot, extreme nausea, no appetitite, brain fog, and couldn't finish a sentence without some else having to help with the words. Then I ended up in the emergency room bruises and lumps on my breasts. I was taken off of the Neurontin and put on Percocet. It masks the pain enough during mild episodes. But to me I am just one of those hyper sensitive people to drugs of any kind. I hate the idea of taking the Klon.plus a narcotic. Bug, I am much more clear minded and functional then I've been in years. I take as needed so if I am at minimal pain I wait and then break a five mil. in half. I eat something to help with nausea. I'm exercising, enjoying our great sunny Cal. days. But I am not able to be myself fully. I can't work. I need my bed near by so if I'm having a really bad episode, or weak and dizzy I can lay down. My family understands my limitations. I am still emotional and stressed at times because of how this affects daily life. I found that I absolutely had to eliminate the food triggers and that helps. Wine, coffee, chocolate, sugary foods, acidic foods, and anything that requires deep down chewing. I turn my head slowly, don't bend over, talk but when I get going too much I feel the pain coming on my nose, chin, cheek, then head. I'm sick and tired of sick and tired so I'm trying some natural remedies. I hope to get off of at least one of the medications in the next few months. I just don't get why N's can't come up with something better then anti-seizure medications. Even migraine medications are generally for seizure. So I don't know your story. I barely understand mine since opinions vary. Shingles and herpes virus is my cause. I am taking drops that are supposed to get rid of the herpes virus we all carry. Mine is from chicken pox and shingles. I's natural and I'm hopeful. Good luck to you. Maybe you will find that the right amount of medications will be helpful enough for you. Being aloud to vent is a good thing and necessary from time to time. Hang in there. From Debbie Day
Hi,
Something just occurred to me that I want to mention,.
A small bit of background on me,my TN, etc.:
My own DX was finally obtained in around 1999,( intitial onset was in '93) and clarified a vast and complex constellation of issues that had been difficult to tease apart due, I suppose ,.. so many overlapping symptoms. It includes: TN, (it was not made distinct for me -- must be 'atypical' type); Glosspharyngeal Neuralgia; TMD (and, in response to someone's post I saw,TMD is, in actual fact, the *same* as TMJ, according to the TMJD) specialist at UCSF who I treated w/ early on); and MIgraine -- chronic daily intractable (( also NOT your textbook variety, but more of a CONTINUOS severe headache -, at that time I had it 24/7, but it went undiagnosed. I had never had a headache before my injury.-- thank goodness, less severe nowadays!!!))
So, this brings me to the thought I had today, after 'lurking about' here. I begin to notice that many of us tend to equate our level of medicine with our level of wellness. Interesting, isn't it?
As many of us have expressed , we have these desires in common:
(1) to NOT take too much ( preferring none!??) medication; or, (2), a desire to *decrease* meds dosages -- or, at least not to *increase* current doses;and (4) tiring of the 'experiment' -- i.e., trying changes of meds, either because they don't' work or because of side effects, especially completely intolerable ones[last one has been a 'biggee' for me: 'how is this functional, if I reduce pain, and then am too tired, unable to think clearly, etc,cannot do my work!!?!?' I'd be asking mysefl all the time! OH, do I understand those of you who have mentioned that problem! ;-); . I've developed intricate ways of timing my meds, so that the peak tiredness does not coincide w/ when I need to drive my care, or must be compos mentis
So I'd love to hear more on this:
I notice a tendancy we may have to equate the level of our med dosage to the level of 'wellness' we obtain.
But I think in the early stages of this ordeal it is of utmost importance to reduce the pain levels where possible; find a good level of management. wait until you have a longer established management of the pain, to where you can tolerate the ups and downs more easily, before worrying so much about recurring amts of meds.
I , myself, know this place well.
at first, I wanted to take as little medicine as possible. I was unaccustomed to taking anything -- even aspriin, not having even a 'common' headhace.
But, I want to point out how very important it is to not be in pain. NOT because it is so unpleasant, or worse!
NOT because it is so depressing -- and it is!
But please take a step back from the desire to reduce medications ( does anyone here not want to do that??)
But for one additional reason:
When our body is in pain -- and there is a loop of feedback, and it is known that having pain increases our ability to feel pain -- our 'circuitry' is forming patterns.
Patterns and habits have an ( in this case) ugly way of not wanting to change!! So, put simply, the longer you are in pain, the more the pain circuit becomes and established neurological route -- more and more quickly and easily accessed! ;-0
You need good pain management, before throwing yourself back on a roller coaster of allowing sudden stabbing pains to interrupt your life w/ frequency, or dependihng on you, having constant pain.
Like wearing the grooves of an often played ( admittedly quite old=fashioined, heh) record, deeper and deeper.
Okay, well, at this point, i'm in danger of beginning to ramble. But just know that if you are sensitive to medicines, and tend towards side effects , it IS worth continuing , or reboosting your efforts to find one that works on your particular situaiton, when you can muster it. There are so many medicines, maybe ones from a different 'family' of meds, chemically, that might work for you.
And it is ****extremely*** important to get the pain levels down to a tolerable level, one you can 'live with' , as someone said to me one day.
I've been there!!.... starting each new med with taking mini doses of what doc would prescribe;side effects making it impossible to getup to a 'therapeutic dose'. I'm Very sensitive to meds and; usually will get most undesirable side effects; and, most often paradoxical or unexpected side effects ( or rare, so low ont eh list of the expeted that uit tends to be dismissed until you lok far enough down the klist of side effects.!!
But I cannot stress enough how important it is to go ahead AND TRY SOMETHING DIFFERENT, IF YOUR MEDS ARE NOT WORKING FOR YOU. OR ask your dr. if there is a different CLASS of meds that might work.
Even something chemically related to a totally ( unacceptable-to-you) medicine may yeild results **without** the side effects!!
And be aware that one particular med may have been chosen Ifirst for a variety of reason: its long established track record; it has a 'longer' track record ( older med) wel l konw mayb not equsl best or best for your individual case; it is cheaper and the insurance is more likely to pay for it, or you'll have to have tried the cheaper , older accepted go-to med first, before they will pay for another one. etc. etc,
So don't become so worn down by our extraordinarily tiresome and exhausting process that you will not renew your efforts -- when ready to do so -- to try again, please. I know it is so hard.
But, it is worth it,.
Hang in there, all!
Michele/myshka
p.s.Also, remember that the field of neurolgoy is one of our younger sciences. growing still in leaps and bounds, and more new things available all the time. So, please, dont 'despair if a medicine.. or even 2,3, --5 -10 .. have not worked for you . Things can change , any day
You sound like me. I go through a lot of phases of denial. I have decrease my meds several times because of this just to realize I really do need them. 3.4 yrs ago I was so healthy, didn’t take any meds and exercised daily. I was a firefighter/ medic I lost my job. Hell my world did a 360 in one day. I fell and broke my jaw in 3 places and it destroyed me. I feel you frustrations. Vent all you want. I keep a lot of my venting in and cry alone. No one understand I can educate all I want but in my families eyes I look fine on the outside. I’m trying to get past this denial/anger phase.
Vent all you want we all get it 
You are right, I have equated my health and wellness with my amount of medication. I will give serious thought to altering my mind set. Thanks for the wake up call.
Myshka said:
Hi,
Something just occurred to me that I want to mention,.
A small bit of background on me,my TN, etc.:
My own DX was finally obtained in around 1999,( intitial onset was in ‘93) and clarified a vast and complex constellation of issues that had been difficult to tease apart due, I suppose ,… so many overlapping symptoms. It includes: TN, (it was not made distinct for me – must be ‘atypical’ type); Glosspharyngeal Neuralgia; TMD (and, in response to someone’s post I saw,TMD is, in actual fact, the same as TMJ, according to the TMJD) specialist at UCSF who I treated w/ early on); and MIgraine – chronic daily intractable (( also NOT your textbook variety, but more of a CONTINUOS severe headache -, at that time I had it 24/7, but it went undiagnosed. I had never had a headache before my injury.-- thank goodness, less severe nowadays!!!))
So, this brings me to the thought I had today, after ‘lurking about’ here. I begin to notice that many of us tend to equate our level of medicine with our level of wellness. Interesting, isn’t it?
As many of us have expressed , we have these desires in common:
(1) to NOT take too much ( preferring none!??) medication; or, (2), a desire to decrease meds dosages – or, at least not to increase current doses;and (4) tiring of the ‘experiment’ – i.e., trying changes of meds, either because they don’t’ work or because of side effects, especially completely intolerable ones[last one has been a ‘biggee’ for me: ‘how is this functional, if I reduce pain, and then am too tired, unable to think clearly, etc,cannot do my work???’ I’d be asking mysefl all the time! OH, do I understand those of you who have mentioned that problem! ;-); . I’ve developed intricate ways of timing my meds, so that the peak tiredness does not coincide w/ when I need to drive my care, or must be compos mentis
So I’d love to hear more on this:
I notice a tendancy we may have to equate the level of our med dosage to the level of ‘wellness’ we obtain.
But I think in the early stages of this ordeal it is of utmost importance to reduce the pain levels where possible; find a good level of management. wait until you have a longer established management of the pain, to where you can tolerate the ups and downs more easily, before worrying so much about recurring amts of meds.
I , myself, know this place well.
at first, I wanted to take as little medicine as possible. I was unaccustomed to taking anything – even aspriin, not having even a ‘common’ headhace.
But, I want to point out how very important it is to not be in pain. NOT because it is so unpleasant, or worse!
NOT because it is so depressing – and it is!
But please take a step back from the desire to reduce medications ( does anyone here not want to do that??)
But for one additional reason:
When our body is in pain – and there is a loop of feedback, and it is known that having pain increases our ability to feel pain – our ‘circuitry’ is forming patterns.
Patterns and habits have an ( in this case) ugly way of not wanting to change!! So, put simply, the longer you are in pain, the more the pain circuit becomes and established neurological route – more and more quickly and easily accessed! ;-0
You need good pain management, before throwing yourself back on a roller coaster of allowing sudden stabbing pains to interrupt your life w/ frequency, or dependihng on you, having constant pain.
Like wearing the grooves of an often played ( admittedly quite old=fashioined, heh) record, deeper and deeper.
Okay, well, at this point, i’m in danger of beginning to ramble. But just know that if you are sensitive to medicines, and tend towards side effects , it IS worth continuing , or reboosting your efforts to find one that works on your particular situaiton, when you can muster it. There are so many medicines, maybe ones from a different ‘family’ of meds, chemically, that might work for you.
And it is *extremely important to get the pain levels down to a tolerable level, one you can ‘live with’ , as someone said to me one day.
I’ve been there!!.. starting each new med with taking mini doses of what doc would prescribe;side effects making it impossible to getup to a ‘therapeutic dose’. I’m Very sensitive to meds and; usually will get most undesirable side effects; and, most often paradoxical or unexpected side effects ( or rare, so low ont eh list of the expeted that uit tends to be dismissed until you lok far enough down the klist of side effects.!!
But I cannot stress enough how important it is to go ahead AND TRY SOMETHING DIFFERENT, IF YOUR MEDS ARE NOT WORKING FOR YOU. OR ask your dr. if there is a different CLASS of meds that might work.
Even something chemically related to a totally ( unacceptable-to-you) medicine may yeild results without the side effects!!
And be aware that one particular med may have been chosen Ifirst for a variety of reason: its long established track record; it has a ‘longer’ track record ( older med) wel l konw mayb not equsl best or best for your individual case; it is cheaper and the insurance is more likely to pay for it, or you’ll have to have tried the cheaper , older accepted go-to med first, before they will pay for another one. etc. etc,
So don’t become so worn down by our extraordinarily tiresome and exhausting process that you will not renew your efforts – when ready to do so – to try again, please. I know it is so hard.
But, it is worth it,.
Hang in there, all!
Michele/myshka
p.s.Also, remember that the field of neurolgoy is one of our younger sciences. growing still in leaps and bounds, and more new things available all the time. So, please, dont 'despair if a medicine… or even 2,3, --5 -10 … have not worked for you . Things can change , any day
Oh, my, Stephanie, what a story! like me, you went from being totally active and fit , to havng *everything* in life affected by your injury. I am so sorry.
I was acustomed to being active 'exercising every day? -- was a dancer, taught classical ballet,and performed in a Russian Character Dance company and was in rehearsal for a show when I was injured. Also, had returned to school; it was a pretty busy life, you might say! Like you, very active.
IT took so long recognize how serious this was/ism and i find new levels of denial , endless phases seem to be virutally unlimited
[perhpas a fine line between 'optimism' /hope? and denial]
But, slowly, I gave up one activity after another until I was doing nothing, adn forced to go on disability.
Interestingly, one of the few people who truly'got it' was my performing company's director -- she knew , because a dancer, musician or athlete will DO what they do, if it is in any way possible; and at some point, the best remedy for us, for almost anything, is to do our work,. but it was just becoming harder and harder; at first, for the longest time, I beat my head against the wall thinking ai'd bre ableot dance as normal in 8 wks.. then longer, , longer, longer, and though i stopped goin to school, was so certain I'd be back to complete the program. But in the end, I could not.I even had to give up my teaching, ultimately.
I think being fit and begin able to exercise is one of the things I miss the most.
It soudn slike you enjoyed your work anbd had an exciting career!
Michele
Thanks for listening to my vent. I appreciate the encouragement my friends. That is why this site is so amazing. Support, support, support. I wish you all pain free days with or without meds!
Stephanie said:
You sound like me. I go through a lot of phases of denial. I have decrease my meds several times because of this just to realize I really do need them. 3.4 yrs ago I was so healthy, didn’t take any meds and exercised daily. I was a firefighter/ medic I lost my job. Hell my world did a 360 in one day. I fell and broke my jaw in 3 places and it destroyed me. I feel you frustrations. Vent all you want. I keep a lot of my venting in and cry alone. No one understand I can educate all I want but in my families eyes I look fine on the outside. I’m trying to get past this denial/anger phase.
Vent all you want we all get it
Patty, thanks for your reply. I appreciate it.
Patty said:
You are right, I have equated my health and wellness with my amount of medication. I will give serious thought to altering my mind set. Thanks for the wake up call.
Myshka said:Hi,
Something just occurred to me that I want to mention,.
A small bit of background on me,my TN, etc.:
My own DX was finally obtained in around 1999,( intitial onset was in '93) and clarified a vast and complex constellation of issues that had been difficult to tease apart due, I suppose ,.. so many overlapping symptoms. It includes: TN, (it was not made distinct for me -- must be 'atypical' type); Glosspharyngeal Neuralgia; TMD (and, in response to someone's post I saw,TMD is, in actual fact, the *same* as TMJ, according to the TMJD) specialist at UCSF who I treated w/ early on); and MIgraine -- chronic daily intractable (( also NOT your textbook variety, but more of a CONTINUOS severe headache -, at that time I had it 24/7, but it went undiagnosed. I had never had a headache before my injury.-- thank goodness, less severe nowadays!!!))
So, this brings me to the thought I had today, after 'lurking about' here. I begin to notice that many of us tend to equate our level of medicine with our level of wellness. Interesting, isn't it?
As many of us have expressed , we have these desires in common:
(1) to NOT take too much ( preferring none!??) medication; or, (2), a desire to *decrease* meds dosages -- or, at least not to *increase* current doses;and (4) tiring of the 'experiment' -- i.e., trying changes of meds, either because they don't' work or because of side effects, especially completely intolerable ones[last one has been a 'biggee' for me: 'how is this functional, if I reduce pain, and then am too tired, unable to think clearly, etc,cannot do my work!!?!?' I'd be asking mysefl all the time! OH, do I understand those of you who have mentioned that problem! ;-); . I've developed intricate ways of timing my meds, so that the peak tiredness does not coincide w/ when I need to drive my care, or must be compos mentis
So I'd love to hear more on this:
I notice a tendancy we may have to equate the level of our med dosage to the level of 'wellness' we obtain.
But I think in the early stages of this ordeal it is of utmost importance to reduce the pain levels where possible; find a good level of management. wait until you have a longer established management of the pain, to where you can tolerate the ups and downs more easily, before worrying so much about recurring amts of meds.
I , myself, know this place well.
at first, I wanted to take as little medicine as possible. I was unaccustomed to taking anything -- even aspriin, not having even a 'common' headhace.
But, I want to point out how very important it is to not be in pain. NOT because it is so unpleasant, or worse!
NOT because it is so depressing -- and it is!
But please take a step back from the desire to reduce medications ( does anyone here not want to do that??)
But for one additional reason:
When our body is in pain -- and there is a loop of feedback, and it is known that having pain increases our ability to feel pain -- our 'circuitry' is forming patterns.
Patterns and habits have an ( in this case) ugly way of not wanting to change!! So, put simply, the longer you are in pain, the more the pain circuit becomes and established neurological route -- more and more quickly and easily accessed! ;-0
You need good pain management, before throwing yourself back on a roller coaster of allowing sudden stabbing pains to interrupt your life w/ frequency, or dependihng on you, having constant pain.
Like wearing the grooves of an often played ( admittedly quite old=fashioined, heh) record, deeper and deeper.
Okay, well, at this point, i'm in danger of beginning to ramble. But just know that if you are sensitive to medicines, and tend towards side effects , it IS worth continuing , or reboosting your efforts to find one that works on your particular situaiton, when you can muster it. There are so many medicines, maybe ones from a different 'family' of meds, chemically, that might work for you.
And it is ****extremely*** important to get the pain levels down to a tolerable level, one you can 'live with' , as someone said to me one day.
I've been there!!.... starting each new med with taking mini doses of what doc would prescribe;side effects making it impossible to getup to a 'therapeutic dose'. I'm Very sensitive to meds and; usually will get most undesirable side effects; and, most often paradoxical or unexpected side effects ( or rare, so low ont eh list of the expeted that uit tends to be dismissed until you lok far enough down the klist of side effects.!!
But I cannot stress enough how important it is to go ahead AND TRY SOMETHING DIFFERENT, IF YOUR MEDS ARE NOT WORKING FOR YOU. OR ask your dr. if there is a different CLASS of meds that might work.
Even something chemically related to a totally ( unacceptable-to-you) medicine may yeild results **without** the side effects!!
And be aware that one particular med may have been chosen Ifirst for a variety of reason: its long established track record; it has a 'longer' track record ( older med) wel l konw mayb not equsl best or best for your individual case; it is cheaper and the insurance is more likely to pay for it, or you'll have to have tried the cheaper , older accepted go-to med first, before they will pay for another one. etc. etc,
So don't become so worn down by our extraordinarily tiresome and exhausting process that you will not renew your efforts -- when ready to do so -- to try again, please. I know it is so hard.
But, it is worth it,.
Hang in there, all!
Michele/myshka
p.s.Also, remember that the field of neurolgoy is one of our younger sciences. growing still in leaps and bounds, and more new things available all the time. So, please, dont 'despair if a medicine.. or even 2,3, --5 -10 .. have not worked for you . Things can change , any day