pain and anti-seizure meds question

[xrayspex]

Hey I get brutal pain, usually in spine but sometimes widespread in teeth and extremities too---havent had much luck with meds because have mcs too
sometimes small amounts of anti-seizure type meds help but after awhile problems arise and have to try dif one

usually short acting meds that a person can break down into small tiny pieces and take prn is my best route
has anyone had any luck doing that with lyrica or topamax? i think they are more like antidepressants the way you are supposd to take them, like takes awhile to build up and work etc

But wondering if anyone with mcs and pain and headaches found they could take those meds occasionally as needed in small amount and get any helpful effect
I have been able to use certain meds in a short acting way that arent prescribed that way--things such as luvox or serzone in the past or gabapentin acts quickly for me too but then becomes unreliable and weird side effects if take regularly

any info appreciated
thanks!

 

[wastwater]

Could you take Luvox on a regular basis it was the only SSRI that I could take a full dose of (300mg) and felt I could of taken more.Cymbalta has pain killing properties but as its an SSNRI can have even more strange side effects.

 

[xrayspex]

luvox really helped with pain when tried it in the 90s and more recently tried it again and think it helped with that , but this time I think it really makes my mood go south, sort of afraid to try it again, it did make me irritable in the 90s but not depressed...but good idea, it is a unique one

 

[heapsreal]

I use lyrica for neuropathy?? i only take 150mg at night, i think the normal dosing is to take it 2-3 times a day but my pain issues are worse at night an interfere with sleep, so i just take it at night.

I find if i have extra pain i can take extra etc and it helps, so use the second dose prn.

I dont know what other meds u have tried but i find tramadol works well, it seems to be a med that people love or hate. I find it works well for back pain and also if i get the nerve muscle spasms in my back too.

 

[WillowJ]

I was allowed to cut my topiramate tablets while getting to an effective dose. However my new doc wanted them cut only if they were scored (though to be fair, we'd have been cutting to something that existed in a smaller tablet, at that point). So I would double check with a pharmacist.

Topiramate usually is titred in the dose to avoid producing seizures when coming off (even if one didn't have those previously), not sure if the same or different danger going onto it, so I am not sure about taking on an as-needed basis.

Since you're using a small dose it could be different, though it may not be different if the small dose is effective for you; I don't know and again I'd say ask a pharmacist. They would usually be happy to chat with you on the phone.

 

[xrayspex]

thanks you guys for the input!

 

[Aileen]

Hey I get brutal pain, usually in spine but sometimes widespread in teeth and extremities too---havent had much luck with meds because have mcs too
sometimes small amounts of anti-seizure type meds help but after awhile problems arise and have to try dif one

usually short acting meds that a person can break down into small tiny pieces and take prn is my best route
has anyone had any luck doing that with lyrica or topamax? i think they are more like antidepressants the way you are supposd to take them, like takes awhile to build up and work etc

But wondering if anyone with mcs and pain and headaches found they could take those meds occasionally as needed in small amount and get any helpful effect
I have been able to use certain meds in a short acting way that arent prescribed that way--things such as luvox or serzone in the past or gabapentin acts quickly for me too but then becomes unreliable and weird side effects if take regularly

any info appreciated
thanks!

Unfortunately I too am a member of the mcs, pain and headache club. I've tried most of the anti-seizure meds. I haven't taken them on an "as needed" basis. I've tried topamax and didn't get any help with migraines or sensitivities at any dose. Other people have been really helped with the migraines.

I'm currently taking Lyrica. I started at 25mg (the smallest capsule). Been increasing by 25mg per week. I am finding that is helping somewhat with the sensitivity to odours. I'm hoping that as I up the dose it will help more. Time will tell. Lyrica is actually 2nd generation gabapentin, so this might be a good choice to try.

One drug I've been taking for years strictly on an "as needed" basis is Flexeril (cyclobenzaprine) 10mg tablets. I think it comes in 5mg size but not sure. It doesn't help my sensitivities but it does help with some types of pain and it really knocks me out. It is a muscle relaxant that is related to the tricyclic amitriptyline.

Actually, amitriptyline is also used for pain in low doses. I tried it for a while but developed problems. I started with the smallest size tablet, 10mg and cut it into quarters. Worked great for sleep but not for pain at that low a dose. Not likely a good choice "as needed" because it can cause symptoms for a few days or couple weeks as your body adjusts to it.

 

[xrayspex]

Aileen--hey thanks--that is interesting about the flexeril because that is one I used occasionally in last year and initially helped alot if took only teeny amount (didnt want to get knocked out) but then I started getting residual lowered blood pressure or perhaps something with my heart--oxygen hunger worsened and I dont like that symptom, I have had that for many years but it hasnt been as severe in some ways the last couple years so didnt want to mess with that. I think it probably is something with my heart because the tricyclics did that to my heart too in the 90s and that is a rare side effect of them--but my heart would race and would get oxygen hunger and pardoxically they would keep me up all night because of how effected heart and oxygen (my theory). I tried a few of the "tylines" and doxepin. They did help with pain some though but wasnt worth it.

I am intrigued by lyrica bcause teeny amount of gabapentin helped a couple years ago and then I quit it because couldnt take enough to keep therapeutic dose--I would get too stupid on it and my eyes looked bad (my lids got real heavy) and would get calf cramps But I was reading about both Lyrica and G last night and was happy to see they do not interact with cytochrome p450 system which is great to minimize MCS stuff--it must just be the relaxing properties that caused the side effects--I am desperate enough to try again. I wonder if problem with pulsing gabapentin is that with short half life body goes into withdrawal causing leg cramps/muscle spasms.

I am also curious about KEPPRA
(levetiracetam)---doesnt sound as bad with side effects as some.

 

[Aileen]

I'm actually also currently on levetiracetam. I haven't noticed it being all that helpful but I am a relatively low dose. I started by cutting the smallest size table into quarters. Increased very slowly. One problem that is being reported with Keppra is rage, so be cautious. I haven't noticed a problem that way but many have.

One you may not have tried is Gabatril. Forget the generic name. I have no experience with it - yet.

Both Lyrica and Keppra work on the cell sending the message, not blocking the receiving end. So they seem to be lowering the number of messages being sent from the sensory nerve cells to the processing centre. The idea is that if there are fewer cries for help, there will be less of an over-reaction.

I recently titrated off gabapentin because I didn't think it was doing much. When I finished I noticed (major understatement) a horrible smell coming out me. I obviously have some sort of infection or buildup of something nasty. It was completely overpowering.

Started on Lyrica. Not noticing that smell now, but I know it is there. Likely the thing that is causing my mcs - overpowering the sensory nerves which sending all kinds of distress signals to the brain. I'm hoping if we can find the source of the odour and treat it, my mcs will go away. I see the doctor Wed.

 

[xrayspex]

Aileen--wow thanksfor the info, you are a good person to check in with since we both have mcs and ironically the 2 meds I felt most interested in you are on! do u think the gabapentin dulled you to where you werent smelling and noticing infection? do you think it is dental? do you have an AI issues? I have sjogrens and cervical stenosis, cervical bone spur some degeneration and hypermobility. I can take regular hour walks but cant do anything jumping around or too much wt bearing.

I found some old lyrica i was given about 6 years ago and took tiny amount late last nite and have to say it really took the edge off. but it might be like neurontin where i felt better at first and then got too stupid on it over time...but going to try to get some new lyrica from doc this week and see if teeny amount could work. the painflare was also causing horrible anxiety and mood was much better today , sigh of relief...

have u gained wt on lyrica? the only ed that worked great for me the last25 years since fms/cfs/injury was darvon, but its off the market for 3 years andi have been suffering a lot since. it was good for people that have problem with cy2d6 i think it is which a lot of meds like codeine and ssris touch on cytochrome p450 system. I am glad tho in a way that i was forced to have to work on things in ohter ways but lack of pain control is getting ridiculous now, quality of life issue big time. and i am trying to work fulltime...need some help or gonna implode!

wouldnt a blood test at yr doc tell u like ana or something whether infection?

 

[heapsreal]

Aileen--wow thanksfor the info, you are a good person to check in with since we both have mcs and ironically the 2 meds I felt most interested in you are on! do u think the gabapentin dulled you to where you werent smelling and noticing infection? do you think it is dental? do you have an AI issues? I have sjogrens and cervical stenosis, cervical bone spur some degeneration and hypermobility. I can take regular hour walks but cant do anything jumping around or too much wt bearing.

I found some old lyrica i was given about 6 years ago and took tiny amount late last nite and have to say it really took the edge off. but it might be like neurontin where i felt better at first and then got too stupid on it over time...but going to try to get some new lyrica from doc this week and see if teeny amount could work. the painflare was also causing horrible anxiety and mood was much better today , sigh of relief...

have u gained wt on lyrica? the only ed that worked great for me the last25 years since fms/cfs/injury was darvon, but its off the market for 3 years andi have been suffering a lot since. it was good for people that have problem with cy2d6 i think it is which a lot of meds like codeine and ssris touch on cytochrome p450 system. I am glad tho in a way that i was forced to have to work on things in ohter ways but lack of pain control is getting ridiculous now, quality of life issue big time. and i am trying to work fulltime...need some help or gonna implode!

wouldnt a blood test at yr doc tell u like ana or something whether infection?

I think we get a tolerance to most meds, need to talk over a plan with your doc of maybe rotating between a couple, eg lyrica for a few months and then back on neurontin???

 

[xrayspex]

that is a good idea, or maybe even try the keppra. i was thinking about nucynta when i was reading a thread about mu receptors and i think that is why the darvon used to work--tramadol (related to nucynta)didnt work for me because of the ssri aspect of it--thats never good for me--but nucynta works more on epinephrine i think not so much on the serotonin, but its also contraindicated if head injury or concern for raising intracranial pressure and that is a worry for me so maybe not.
but toggling a couple dif things what been doing last few years, just haven't loved the options but get by, sometimes well othertimes barely.......

 

[Aileen]

Aileen--wow thanksfor the info, you are a good person to check in with since we both have mcs and ironically the 2 meds I felt most interested in you are on! do u think the gabapentin dulled you to where you werent smelling and noticing infection?

Yes, that's what I think. It blocked enough of the signals that the odour went under the radar, so to speak. But, it was there and I think that is why when I get something added on top of it, like an exposure to perfume or a food smell, it pushed me over the edge.

After I stopped the gabapentin, after a long slow titration, I got the full brunt of the "internally generated" odour. It was a very nasty surprise. I was sooo sick. It was just completely overwhelming. The Lyrica is masking it like the gabapentin did, which is what it is supposed to do. But, now I know it is there and I need to identify it. Hopefully it will be treatable.

I have severe problems with foods too and I suspect that the same thing is happening there. I suspect my gut flora is all messed up.

do you think it is dental? do you have an AI issues? I have sjogrens and cervical stenosis, cervical bone spur some degeneration and hypermobility. I can take regular hour walks but cant do anything jumping around or too much wt bearing.
have u gained wt on lyrica? the only ed that worked great for me the last25 years since fms/cfs/injury was darvon, but its off the market for 3 years andi have been suffering a lot since.

It is definitely not a dental problem. Had that angle thoroughly checked out. Don't seem to have any autoimmune issues either. So far I have not gained weight on the Lyrica (didn't on gabapentin either). Only been on it 6 weeks though.

Sorry to hear something that helped you got taken off the market. It's not only rough physically but very hard emotionally when that happens. I hope you find something that helps soon.

 

[xrayspex]

thanks aileen, good luck to you too

can anyone else smell what u smell? I was wonderingif perhaps your infection decreases on lyrica and g----ie my doc said now they know some ssri's have antiviral properties---perhaps you smell odor less when on L because it is organically medicinal for you and not just in the abstract mind

i know its not an ssri but maybe its same principal
i think they learned lithium has antiviral props too

imho tryiing to keep duality of body mind a sickness in medical profession is not wise but they do--they say they believe in holistic health and they push mindfulness etc yet there is still stigma that psych symptoms are equivalent of bad behavior/ damaged person to be scorned sometimes --but yet- really- i suspect most serious "mental health" issues also have strong bacterial or viral component too----but heaven help you if you get shoved more into one category

that said i still like to think that maybe with energy work and mind work etc that we can effect even viruses and bacteria since it is all interconnected----however i want both options---to try to get at it chemically as well as energetically

 

[Aileen]

can anyone else smell what u smell? I was wonderingif perhaps your infection decreases on lyrica and g----ie my doc said now they know some ssri's have antiviral properties---perhaps you smell odor less when on L because it is organically medicinal for you and not just in the abstract mind

No, I'm the only one who could smell it. Very early on in the illness, 25 yrs or so ago, others could smell a bad odour. At the time I was having drenching sweats that would leave my clothes and bedding soaked. It was back and forth sweats and chills, 24/7.

Now, I was the only one who could smell it. I suspect that when I was having the sweating, some of "it" was coming out. I should mention that at that time I had not yet developed mcs or had any problems with odours of any kind. Once the sweats stopped, it was building up more. I suspect that the sensory nerves became overwhelmed and that is when the sensitivities started.

I don't know whether it is infection, or some biochemical pathway has broken down. Either way, something has built up that shouldn't have. It needs to be identified and dealt with. I just hope we'll be able to figure it out.

that said i still like to think that maybe with energy work and mind work etc that we can effect even viruses and bacteria since it is all interconnected----however i want both options---to try to get at it chemically as well as energetically

I agree. I don't care whether I use meds, vitamins or a rife machine. Just give me something that works!!

 

[kangaSue]

Hey I get brutal pain, usually in spine but sometimes widespread in teeth and extremities too---havent had much luck with meds because have mcs too
sometimes small amounts of anti-seizure type meds help but after awhile problems arise and have to try dif one

usually short acting meds that a person can break down into small tiny pieces and take prn is my best route
has anyone had any luck doing that with lyrica or topamax? i think they are more like antidepressants the way you are supposd to take them, like takes awhile to build up and work etc

But wondering if anyone with mcs and pain and headaches found they could take those meds occasionally as needed in small amount and get any helpful effect
I have been able to use certain meds in a short acting way that arent prescribed that way--things such as luvox or serzone in the past or gabapentin acts quickly for me too but then becomes unreliable and weird side effects if take regularly

any info appreciated
thanks!

Have you tried the anti-seizure med retigabine before. Works differently to most others being a potassium channel opener. It is a biosostere to flupirtine that has been in use in Europe for over 30 years as an analgesic.

I don't have any experience with this drug but mention it only as I use another potassium channel opener drug for pain relief called nicorandil which is not available in the U.S. market (See my thread under general discussion "Nicorandil... A role in treating CFS")