Breakthrough pain

I was wondering what types of treatment you all use for breakthrough pain. I am currently taking 300mg of Tegretol three times a day in addition to 300mg of Gabapentin three times a day. It keeps it under control for the most part. My normal pain level was anywhere from 8-10 on a daily basis. This keeps it at a five or under. My biggest issue is with the breakthrough pain. I don't have medical insurance so I can't afford most drugs. I end up going to the ER and getting a shot of Dilaudid because I can't take Nubain because it interacts with my anti-depressant Celexa. They were giving me Tramadol...but I also have non-epileptic seizures so my GP won't let me take those. I can't take a lot of NSAID's because I also have Crohn's disease. I would love to find something for the breakthrough pain. I've had it since I was 15 but didn't get a diagnosis until I was 30. I am now 32. I have so much medical debt and I don't know what to do but I have to have something to control the pain. It's at it's absolute worse in the fall/winter. I cannot stand the cold it makes it hurt so much worse and mine is bilateral. Sometimes is the right side, sometimes it's the left and other times it's both at the same time. So any suggestions would be great. Thank you!

Hi Starfrenzy,

Can you take narcotics at all? I hate to suggest them but the truth is that some of us need them. They also come in generic, which could help cut cost.

Good Luck

Cathy In MD

I second Cathy on using narcotics. I am post MVD now (pain free) but when I had my full out symptoms, I took first Trileptal and then when I maxed out on that and had scary side effects, I was switched to Tegretol. The meds controlled most of the pain most of the time but that left plenty of room for breakthrough pain, some of really bad. I had good days and bad days and always side effects. On those bad days, I would take a Vicadin (towards the end of the day when I didn't have to drive anymore). While it didn't curb the pain much at all, it certainly took the edge off for a few hours and made me not care about it as much. I was always scared to take it that much so I reserved it for my worst days.

Another thing that worked for me was intense exercise (not sure if this is an option at all for you). I teach indoor cycling and didn't stop teaching when I got symptoms and was diagnosed. It was always rough the first few minutes into the ride but then as my heart rate rose, I would be symptom free for much of the ride. The best part was that since it is an intense cardio workout, I get that "runner's high" or endorphins during and post workout so I was always guaranteed well-controlled pain for several hours after that workout. My neurologist said that my body's endorphins gave my meds a little boost and made them work better during that time.

Oxycodone. That is what helps my breakthrough pain. And the only thing that I find relief with. It does not work for all breakthrough pain... sometimes I have pain it does nothing for --- but that is maybe once every 6-8 weeks.

My doctor has yet to give me anything for breakthrough pain and im dying over here my first flare up I took tegretol and topamax and it helped 100 percent this flare up has been bad and nothong helps ive took the tegretol and topamax no help they put me on gabapentin and no help then they called in baclofen and still no help I literally am becoming horribly depressed and am waiting on the dr to call me back again if they dont give me some type of relief soon I am gonna lose it

I've posted this before and have been reprimanded for it, HOWEVER, smoking pot works!!!!

Vaping CBD oil (legal in all states) also helps, but not quite as well.

HOPEFULLY marijuana will be at least medically legal in more states soon.

You don't have to smoke much, not even enough to get "high".

I know it is illegal HOWEVER, if it is that or suicide.......

The CBD oil is good too, though like I said not as effective.

You can order it online. I've ordered the "Charlotte's Web" brand.

I wish you well. My daughter has been suffering with this disease since October 2013. Had microvascular decompression surgery in December 2014 and was without paid for a month. Came back. 1 nerve was cut. Tried to convince doctor to go back in and look for other nerves, would not, said it was too risky. Put her on Tegretol - which has NEVER worked. Just turns her into a Zombie. Looking into other doctors..... Her life was on hold pretty much until we found the CBD oil. She only "smokes" when it gets EXTREMELY painful.

I think it is more adequate to say it helps some people. There are strains that have high cbd and little to no thc, so you can’t get high. Colorado has a strain called Charlotte’s web which is an oil that has been known to help epilepsy, and it would be interesting to see of it works for TN.

It is illegal in some states. And this site cannot advocate for usage that is illegal. It is still illegal at a federal level which is why there are so few medical research trials done.

The reason medical marijuana is still illegal is because of big pharma. They make sure their lobbyists keep it illegal, because if it were, the makers of tegretol and the like would be out of millions of dollars.

Too bad people have to suffer because of money.

Oxy is way more addictive than pot, but big pharma likes Oxy!

Actually, I have seen no confirmtion of that argument except by the pro pot lobby. The history of making drugs illegal is an interesting one. The reality is that big pharma has little to do with it. This country has puritan roots. Making an argument that pot is better than oxy is a red herring. You can develop a dependency on pot just like any substance. Smoking it is ten times worse than a cigerette. I am asthmatic. Vaping or smoking would endanger my health.

Regardless, no one on this site cares why it is illegal. The reality is that it is. And in many states may well stay that way. It is still illegal at the federal level. And even if you have a card for it, this won’t save your job. As with any treatment, there are so many varibles.

I am happy your daughter found relief with it. I know someone that it did nothing for that person, yet oxycodone provides tremendous relief.

It is all the individual person.

Oxy only helped my daughter for about 30 minutes, then the pain came back.

It is true that everyone is different.

Not sure where you get your facts from. Not that mine are any better.

Good luck to you. Hopefully one day a cure will be found and all will be well!