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Drug combinations used for pain-suggestions, comments please
HI,
I am now in yet another relapse and the meds that I have been taken successfully before for pain and paresthesias is no longer working. Hence the 1 a.m. posting. I take Trileptal 300 mg twice a day, nortriptyline 100 mg a day,and Klonopin 200 mg at night for muscle spasms. In addition, I take meds for my BP and migraines as well so it makes drug dosing complicated.
I have tried gabapentin, and Lyrica both of which made me loopy and increased the cog fog before they hit therapeutic levels and amitriptyline which increased my sicca syndrome (dry eyes and mouth). Baclofen didn't do squat for the muscle spasms.
Does anyone have a drug or combination that works especially well for them other than the ones listed above? I thought I remembered someone using Cymbalta with successful results.
My MS neuro has ordered another MRI (just had one in March) to see if there are any new lesions given my new symptoms, THEN he said he would work on making me more comfortable. I know, I should have asked for something then but cog fog and the notion of another MRI (which he only does yearly unless there is something "serious" going on (his words)). threw me for a loop. Well, the pain and spasms are increasing and I'm definitely getting cranky. so, any help would be appreciated.
Thanks all,
Ren
I am now in yet another relapse and the meds that I have been taken successfully before for pain and paresthesias is no longer working. Hence the 1 a.m. posting. I take Trileptal 300 mg twice a day, nortriptyline 100 mg a day,and Klonopin 200 mg at night for muscle spasms. In addition, I take meds for my BP and migraines as well so it makes drug dosing complicated.
I have tried gabapentin, and Lyrica both of which made me loopy and increased the cog fog before they hit therapeutic levels and amitriptyline which increased my sicca syndrome (dry eyes and mouth). Baclofen didn't do squat for the muscle spasms.
Does anyone have a drug or combination that works especially well for them other than the ones listed above? I thought I remembered someone using Cymbalta with successful results.
My MS neuro has ordered another MRI (just had one in March) to see if there are any new lesions given my new symptoms, THEN he said he would work on making me more comfortable. I know, I should have asked for something then but cog fog and the notion of another MRI (which he only does yearly unless there is something "serious" going on (his words)). threw me for a loop. Well, the pain and spasms are increasing and I'm definitely getting cranky. so, any help would be appreciated.
Thanks all,
Ren
Dear Heather,
Thank you for the sweet compassionate note! It's good to hear that you can take the Klonopin and baclofen together for spasm relief. I was trying to avoid opiates at the stage of the game but we don't always get what we want , do we? If we did, we wouldn't have this miserable disease.
My biggest concern is maintaining some part of a functioning brain. I already have cognitive difficulties which are only exacerbated by relapses such as this one.
I have missed you as well. I am sorry about your daughter's dx. I remember when she was dx last yer (?) Are her symptoms tolerable? I do hope so.
Thanks so much!! Sending you huge hugs and lots of love back <3 <3 <3
Ren
Thank you for the sweet compassionate note! It's good to hear that you can take the Klonopin and baclofen together for spasm relief. I was trying to avoid opiates at the stage of the game but we don't always get what we want , do we? If we did, we wouldn't have this miserable disease.
My biggest concern is maintaining some part of a functioning brain. I already have cognitive difficulties which are only exacerbated by relapses such as this one.
I have missed you as well. I am sorry about your daughter's dx. I remember when she was dx last yer (?) Are her symptoms tolerable? I do hope so.
Thanks so much!! Sending you huge hugs and lots of love back <3 <3 <3
Ren
Ren, my special friend,
Sorry to hear that you are going through such a bad pain spell. I think short of being deceased, there is nothing I have found that takes away all the pain.
I take 3 mgs of Klonopin at night for restless leg syndrome (now known as Restless Limb Syndrome) Baclofen 3-10 mg. tablets at night. I am now on Oxycontin-30 mg. twice daily and Oxycodone-Immediate Release-for breakthrough pain. These two drugs were my last hope. I will not take anything stronger, even if I have to deal with pain everyday. The Oxy doesn't even take care of a headache or toothache, so you know it's not working for my daily leg spasms.
I always thought Baclofen wasn't doing a thing for me, until I tried to go off of it. My gosh, my spasms were through the roof. I also thought the Klonopin was not working for my Restless Leg, until I too went off of that. WOW....My legs and arms were flying all over the place at night.
So I have to say that Baclofen really does work. Even if it "feels" that it's not. I wish I could take it during the day, but any higher dose leaves me too weak to walk. It really does help at night with the pain though, Ren. Alot better than the medication that is used specifically for pain. The heck with that stuff. It doesn't work.
I have missed you SO much and everyone on the Forum. I have taken a break only to see if it helped me not think about MS 24/7. Since my daughter was also diagnosed with MS, I just haven't wanted to deal with MS....I guess you might say, I am running from it. In the end, I don't think it's working. It's symptoms are there to remind me everyday.
I hope you get to feeling better, precious one. You are one of my "Bestest Buddy's," and you know (I hope) that I truly feel the pain with you. I totally understand. I wouldn't wish the pain of MS on anyone. But we muddle through, don't we?
I love you sweetheart. I have a very soft and chubby shoulder to lean on, if you need me. Sending you all my thoughts and prayers...
Heather
Sorry to hear that you are going through such a bad pain spell. I think short of being deceased, there is nothing I have found that takes away all the pain.
I take 3 mgs of Klonopin at night for restless leg syndrome (now known as Restless Limb Syndrome) Baclofen 3-10 mg. tablets at night. I am now on Oxycontin-30 mg. twice daily and Oxycodone-Immediate Release-for breakthrough pain. These two drugs were my last hope. I will not take anything stronger, even if I have to deal with pain everyday. The Oxy doesn't even take care of a headache or toothache, so you know it's not working for my daily leg spasms.
I always thought Baclofen wasn't doing a thing for me, until I tried to go off of it. My gosh, my spasms were through the roof. I also thought the Klonopin was not working for my Restless Leg, until I too went off of that. WOW....My legs and arms were flying all over the place at night.
So I have to say that Baclofen really does work. Even if it "feels" that it's not. I wish I could take it during the day, but any higher dose leaves me too weak to walk. It really does help at night with the pain though, Ren. Alot better than the medication that is used specifically for pain. The heck with that stuff. It doesn't work.
I have missed you SO much and everyone on the Forum. I have taken a break only to see if it helped me not think about MS 24/7. Since my daughter was also diagnosed with MS, I just haven't wanted to deal with MS....I guess you might say, I am running from it. In the end, I don't think it's working. It's symptoms are there to remind me everyday.
I hope you get to feeling better, precious one. You are one of my "Bestest Buddy's," and you know (I hope) that I truly feel the pain with you. I totally understand. I wouldn't wish the pain of MS on anyone. But we muddle through, don't we?
I love you sweetheart. I have a very soft and chubby shoulder to lean on, if you need me. Sending you all my thoughts and prayers...
Heather
Sorry to hear of this, sounds like pure misery. I don't think I can offer much as I think our pain is quite different. I *just* have the paresthesias/dyesthesis/allodynia whatever the heck it is. For this, I take 900mg x 3 per day of gabapentin; and 50mg of amitriptyline each night. Somewhat alleviates but by no means eliminates the discomfort. I was on higher doses of each but went as low as I could while still pain still tolerable, due to side effects of sleepiness and urinary hesistancy.
I have not had the muscle spasm type pain you describe but it sounds like many others here who do have offered some options to explore. I hope you find the right cocktail for you and get some relief so you can sleep and just feel better all around.
I have not had the muscle spasm type pain you describe but it sounds like many others here who do have offered some options to explore. I hope you find the right cocktail for you and get some relief so you can sleep and just feel better all around.
Thank you very much for sharing your meds list with me! I did notice several drugs or drug dosages that the doc hasn't explore yet so they doe give me a starting point we speak next week.
BTW, yes the Klonopin dose was a typo..I take 2mg not 200mg!
Again many thanks!
Ren
BTW, yes the Klonopin dose was a typo..I take 2mg not 200mg!
Again many thanks!
Ren
Sorry to hear you are suffering sooooo much! I am currently taking:
Tegretol- (antiseizure med) 300mg three times a day
Amitriptyline (used to be for depression but now used for pain control) 40mg at bedtime
Citalopram (antidepressant) 40mg at bedtime
Up until now this worked well for me and my nerve pain. I was given Oxycontin but I don't find it does anything for the pain...it just makes me feel different about the pain. I hate that there is nothing as simple as an Aspirin to take away the pain...it is so frustrating. My husband has nerve pain in his back and he is on Lyrica and Cymbalta together but it didn't do much to help him...he is on Oxycodone now and is feeling a lot better.
I know how hard it is to find something that works but I want to believe that there is a combination out there for all of us. I truly hope you find "your" combination soon and are relieved of some of your pain.
Lots of Hugs,
Rena
Tegretol- (antiseizure med) 300mg three times a day
Amitriptyline (used to be for depression but now used for pain control) 40mg at bedtime
Citalopram (antidepressant) 40mg at bedtime
Up until now this worked well for me and my nerve pain. I was given Oxycontin but I don't find it does anything for the pain...it just makes me feel different about the pain. I hate that there is nothing as simple as an Aspirin to take away the pain...it is so frustrating. My husband has nerve pain in his back and he is on Lyrica and Cymbalta together but it didn't do much to help him...he is on Oxycodone now and is feeling a lot better.
I know how hard it is to find something that works but I want to believe that there is a combination out there for all of us. I truly hope you find "your" combination soon and are relieved of some of your pain.
Lots of Hugs,
Rena
Ren,
I can relate to the lack of sleep, especially when pain is a contributor.
Sorry you are suffering w/it too but glad you brought it up - I'm interested too in what is working for our members...
-shell
I can relate to the lack of sleep, especially when pain is a contributor.
Sorry you are suffering w/it too but glad you brought it up - I'm interested too in what is working for our members...
-shell
ren- i've been taking only cymbalta for the nerve pain and so far have been alright. not perfect, but i'll take feeling a dulled "just hit my funny bone" sensation over sharp pain radiating through my arm any day.
i'm hesitant to take anything else and am lucky so far that the pain hasn't been at an unbearable level since i got out of the hospital. in the hospital i was put on trileptal and while i didn't hurt anymore, it made me crazy. like, ca-RAZY crazy.
but i'm one of those who's body really reacts to meds. if there's a side effect, i usually end up with it. except the rebif. thank goodness for small miracles, right?
hope you find some relief.
i'm hesitant to take anything else and am lucky so far that the pain hasn't been at an unbearable level since i got out of the hospital. in the hospital i was put on trileptal and while i didn't hurt anymore, it made me crazy. like, ca-RAZY crazy.
but i'm one of those who's body really reacts to meds. if there's a side effect, i usually end up with it. except the rebif. thank goodness for small miracles, right?
hope you find some relief.
I knew Ren's klonopin dose had to be a typo. I don't think anyone could survive 200 mg.
Benzos are all well and good unless you need to get off them. I was on 4 mg of klonopin for years, and went through holy hell afterwards. The most important thing is to stay in close touch with your prescribing doctor and to taper v-e-r-y slowly.
ess
Benzos are all well and good unless you need to get off them. I was on 4 mg of klonopin for years, and went through holy hell afterwards. The most important thing is to stay in close touch with your prescribing doctor and to taper v-e-r-y slowly.
ess
Heather and Ren:
For Heather: Percocet is a combination of acetaminophen and oxycodone and thus is an opiate based drug. MS Contin is another opiate based drug, with the difference being that is a sustained release medication that comes in different strengths. With the sustained release, the medication is able to stay in your body longer providing you with the benefits of the medication over a longer period of time.
For Ren: I agree with Tonya that your dosage level of Klonopin seems to be very, very high. I do hope that was a typo and you are not on 200 mg. The PDR says that 4 mg a day is on the high end of the therapeutic level. 200 mg could be very dangerous, especially if you take it daily. If you are indeed on a high dosage of Klonopin, please be sure not to drink alcohol.
Benzodiapime withdrawal is very wicked. I'm prescribed 2 mg a day, but usually take only 1. I cannot get myself below .25 mg per day and have heard the same thing from others, that is, it is very, very difficult to get completely off after taking the med for any length of time.
Pain management is delicate and requires a lot of trust between doctors and patients. Here again, it is a situation where one needs to be their best advocate and understand what is being prescribed and why as well as the rationale behind the dosage level.
My sister's mother in-law is was diagnosed with inflammatory breast cancer more than 20 years ago and is still alive, dealing with this as a chronic illness. She has beaten all odds, yet all of the treatments have wreaked havoc on her body. This winter, doctors were considering a hip replacement, but found she was not a candidate due to the weakness in her bones. While going through all of this, they became aware of the high dosage level of oxycondone prescribed to her and began to taper her dosage lower.
I see that neither of you live in states where marijuana is legal for medical use. For so many, this is a much safer alternative to pain relief.
Thoughts are with you for pain free days and restful nights of sleep.
Audrey
PS: I'm not a doctor, but I did stay at a Holiday Inn last night! Plus my dad is a retired analytical research scientist in the pharmaceutical industry, so he taught me a lot about reasearching drugs.
For Heather: Percocet is a combination of acetaminophen and oxycodone and thus is an opiate based drug. MS Contin is another opiate based drug, with the difference being that is a sustained release medication that comes in different strengths. With the sustained release, the medication is able to stay in your body longer providing you with the benefits of the medication over a longer period of time.
For Ren: I agree with Tonya that your dosage level of Klonopin seems to be very, very high. I do hope that was a typo and you are not on 200 mg. The PDR says that 4 mg a day is on the high end of the therapeutic level. 200 mg could be very dangerous, especially if you take it daily. If you are indeed on a high dosage of Klonopin, please be sure not to drink alcohol.
Benzodiapime withdrawal is very wicked. I'm prescribed 2 mg a day, but usually take only 1. I cannot get myself below .25 mg per day and have heard the same thing from others, that is, it is very, very difficult to get completely off after taking the med for any length of time.
Pain management is delicate and requires a lot of trust between doctors and patients. Here again, it is a situation where one needs to be their best advocate and understand what is being prescribed and why as well as the rationale behind the dosage level.
My sister's mother in-law is was diagnosed with inflammatory breast cancer more than 20 years ago and is still alive, dealing with this as a chronic illness. She has beaten all odds, yet all of the treatments have wreaked havoc on her body. This winter, doctors were considering a hip replacement, but found she was not a candidate due to the weakness in her bones. While going through all of this, they became aware of the high dosage level of oxycondone prescribed to her and began to taper her dosage lower.
I see that neither of you live in states where marijuana is legal for medical use. For so many, this is a much safer alternative to pain relief.
Thoughts are with you for pain free days and restful nights of sleep.
Audrey
PS: I'm not a doctor, but I did stay at a Holiday Inn last night! Plus my dad is a retired analytical research scientist in the pharmaceutical industry, so he taught me a lot about reasearching drugs.
Ess - Thank you for the sleepy hugs. Very much appreciated!
Heather - I used to take Ultracet (tramadol + tylenol) for hip pain that was thought to be rheumatological in nature but was actually weak hip flexors from MS. It did help with the pain...hmmm, maybe I'll ask about that. Thanks for the suggestion!
Tonya -
Sorry about the typo. Klonopin 2 mg not 200 mg. Still a good size dose but not enough to treat an elephant which 200 mg would do, lol.
Results of 10 numb fingers and loss of dexterity in hands due to current relapse. Makes typing extremely slow and full of mistakes.
I see you have a list of meds to take as well. I hope they are doing the job for you.
Thanks to all of you for your responses. Enjoy the rest of the weekend.
Ren
Heather - I used to take Ultracet (tramadol + tylenol) for hip pain that was thought to be rheumatological in nature but was actually weak hip flexors from MS. It did help with the pain...hmmm, maybe I'll ask about that. Thanks for the suggestion!
Tonya -
Sorry about the typo. Klonopin 2 mg not 200 mg. Still a good size dose but not enough to treat an elephant which 200 mg would do, lol.
Results of 10 numb fingers and loss of dexterity in hands due to current relapse. Makes typing extremely slow and full of mistakes.
I see you have a list of meds to take as well. I hope they are doing the job for you.
Thanks to all of you for your responses. Enjoy the rest of the weekend.
Ren
is there something in the Air?? Seems as if several of us are really taking a toll w/ a lot of pain lately..... I am sorry that you are dealing w/ this :(
my regime goes like this:
Baclofen 10 mg = (3) times daily but if needed i can take more.
gabapentin (Neurontin) 100 mg (3) tmes daily...When TN is hanging out though.....
of course that goes way up!
Klonipin .5 mg ( 2-3) ntimes day
Alprazolam .5 mg (as needed) usually once daily....
Hydrocodone ?mg (just got since TN reared sooo bad)
RX'd every so many hours (cant remember) for pain....
I am not one who likes how pain pills make me feel but
until I got this TN so bad..I will take a half of one..
Amitryptyline 25 mg (nightly) have to admit though I have not taken it
in the last month or so.....i WILL start it back this week though
it REALLY does help w/ chronic pain and sleep ;)
Methyline or Amantadine..In A.M to help wake up.......Have to admit here too
I have not taken in the last month.....i do not like the Methyline
side effects at all!
Ren.....My Friend, I hope you get some relief SOON!
<>
~Tonya
ps...WOW! you take a high dose of Klonipin (sp)!!
.
I take percocet and it helps a lot with spasms. Percocet and tramadol.
I have been switched to MS contin but am afraid to take them yet.
I was on Cymbalta and found out they have the same withdraw as Effexor XR. I had to deal with that years ago when I had a issue with my insurance. I refuse to take the cymbalta now because of my horrible experience.
I have been switched to MS contin but am afraid to take them yet.
I was on Cymbalta and found out they have the same withdraw as Effexor XR. I had to deal with that years ago when I had a issue with my insurance. I refuse to take the cymbalta now because of my horrible experience.
Sorry that you too, are in a relapse. Are you on any other meds beside the Cymbalta? My legs and right arm feel like your arms.
I hope you continue to improve and thanks for the input!
Ren
I hope you continue to improve and thanks for the input!
Ren
Ren, I wish I could offer good advice, but I'm stumped. I'm so sorry you're losing sleep due to this awful pain. Have noticed you here more than once in the wee hours, and I know you still have get up promptly and function regardless.
I'm sending you lots of sleepy and pain-free hugs.
ess
I'm sending you lots of sleepy and pain-free hugs.
ess
Ren, I'm taking Cymbalta now.
Coming out of a relapse, I was put on 30 mg a day, then bumped up to 60. I had pain in both arms- first elbow to finger tips, then the entire arm. At 60 mg, pain was gone. Actually, I thought I'd "healed" a bit (as far as THAT symptom was concerned).
60 mg made me incredibly sick to my stomach on and off throughout the day, no matter when i took it. breaking it up- 30 in the morning, 30 at night- didn't even fix it. So I went off of it.
Pain came back. Boo.
Now I'm on 30 mg a day. Pain is just starting to dull. Now my right arm feels swollen/sore (it's not swollen), if that makes sense. I'm hoping I'll show improvement in the next week or so and can keep you posted.
Coming out of a relapse, I was put on 30 mg a day, then bumped up to 60. I had pain in both arms- first elbow to finger tips, then the entire arm. At 60 mg, pain was gone. Actually, I thought I'd "healed" a bit (as far as THAT symptom was concerned).
60 mg made me incredibly sick to my stomach on and off throughout the day, no matter when i took it. breaking it up- 30 in the morning, 30 at night- didn't even fix it. So I went off of it.
Pain came back. Boo.
Now I'm on 30 mg a day. Pain is just starting to dull. Now my right arm feels swollen/sore (it's not swollen), if that makes sense. I'm hoping I'll show improvement in the next week or so and can keep you posted.
Wish I had something really useful to offer here but spasms are something I'm just beginning to identify and understand. My PCP and I decided on no meds right now as I have a huge fatigue problem and too many other new meds right now.
Michelleric and I went to a LifeLines sponsored presentation on Thursday. A local neuro spoke. He had one of his patients there to share about her Baclofen pump insertion. She had been unable to stand or walk but a step or two before the pump and is doing much better with it. He said that the pump is the only way to get sufficiently high dosages delivered so it is effective without causing significant side effects.
He did also mention that some people aren't good candidates for a Baclofen pump because they need some degree of spasticity to be able to remain functional. The large local hospitals here no longer insert them. There must have been problems. Patients are now referred up to Cleveland Clinic where they apparently have a good success rate. (All this from the speaker.)
Hope someone else has a better answer for you and that you are able to get some sleep soon.
Mary
Michelleric and I went to a LifeLines sponsored presentation on Thursday. A local neuro spoke. He had one of his patients there to share about her Baclofen pump insertion. She had been unable to stand or walk but a step or two before the pump and is doing much better with it. He said that the pump is the only way to get sufficiently high dosages delivered so it is effective without causing significant side effects.
He did also mention that some people aren't good candidates for a Baclofen pump because they need some degree of spasticity to be able to remain functional. The large local hospitals here no longer insert them. There must have been problems. Patients are now referred up to Cleveland Clinic where they apparently have a good success rate. (All this from the speaker.)
Hope someone else has a better answer for you and that you are able to get some sleep soon.
Mary
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