Medication combinations and the Fentanyl Pain Patch?

1

I guess I still consider myself a newbie to TN and to the boards as well. But I guess I have something that might be worth talking about. When arriving to the boards and doing my looking around I noticed many of you are on or trying a few combinations of medications. I have been on just a few from my visits to the ER’s in my horrible beginning with TN. On the 10th of Dec. I went to my first neurologist appointment I had expected to walk of with a bunch of prescriptions for a combination of medications. I had expected for them to try and up my dose of Tegretol. That was hardly the case.

My neurologist was surprised by the amount of Tegretol (1000mg) a day. He stated that past that dose that I would not get anymore positive effect from it. He was surprised that an ER doctor would even suggest me upping the dose from the starting of 400mg a day, and that most of his patients with TN were only on 400mg a day. Oddly enough with the way he was going on about the amount I was taking he did not want to back me off it. I guess if it broke don’t fix it? At that dosage I’m not getting any Shocks…so I was happy really that there was no change.

The part I guess that I was most surprised with was that he took me off all my other meds and in their place put me on a pain patch called Fentanyl.. I was scared, so scared that one little pain patch was going to do all that my current meds were doing for me. Not that popping 2 percocets every four hours was doing much, but it was doing something…and I knew what it would do. It was this combination of medication that he put all his TN patients on, and if it did not work he went for a nerve block.

So we went and filled the prescription of Fentanyl, and placed around my left shoulder.. He had told me that it would take about 3 hours to kick in and that each patch would last 72 hours, he did not really explain the drug and I guess that was perhaps why I doubted it. Now what I would have said was the worst pain that I had ever felt in my life…even surpassing that of child birth was gone in the time that he said it would be. Imagine my shock. I wanted to kiss him!

I have been completely pain free for 4 days and going….and I don’t feel drugged up to the point that I can’t go on with my life. I can chase my daughter around, and do all my normal things again.

Has anyone else tried it? And what were your results? I doubt I’m spouting off anything new, but I guess I figured with everyone here dealing with the beast, I was curious if anyone might get the same results as me.. Anyway would love to hear back on medication combinations that work for you even if its not the same as mine….maybe your story dealing with medication in general. I’m just curious :3

2

I have been fighting the "beast" of TN/TN2 for over 10 years with evry type of med with minimal results. I went to the Fentanyl Patch last month and am at 25mcg dose. It has knocked down my TN "strikes" and TN2 "swarms" and made me functional once again. Additionally, I have rid myself of many others meds as well.

I am concerned about the Fentanyl and still have some break through pain, but have not mentioned this to my regular Doc as of yet. My Neuro knows.

I should be going for the "cyber knife" sometime soon, but doubt that I will get off Fentanyl any time soon.

I hope you are feeling better.. Did you find any other TN patients on the Patch??

I still do not know if it is the best for me for TN, but it sure dos work on the rest of my acute and chronic pain.

3

Hi Alisa,
Glad this is working for you. I suggest you read up on this medication as it is a very strong opioid. There are some addiction and dependancey issues that come along with this class of medications. It is important for you to be aware. The laws on this are important to know for federal and state. You may be prohibited from driving while on this medication. I do not mean to be a Debbie downer but as patient myself using opioid therapy these are important things to know about. My other suggestion is to join the opioid therapy group and post discussion subject with themes of opioid medications there. Really glad you have found some relief from the TN pain though.

You will find everyone has a different combo of medications that work for them. For my self I’m on the highest tolerated dosage of Lyrica I take of 400mg a day. Then an extended release of opioid along with an immediate release opioid. I’m still having issues controlling my pain level to an acceptable level for being a functional person. It is truly frustrating me. In the next few months I will start considering a complementary therapy such massage or acupuncture. Im even going to look into Botox as a possibitity. I have tried numerous medications at this point only to have to some reactions to the medications that forced me to stop the medication by doctor/a orders. I sure wish there would be an easier way to find the right medication combo other than being a lab rat.

4

Like Kari, I suggest you read up on Fentanyl and know exactly what you’re taking and what it can do to you. I was on the patch myself for over a year, so I understand the good (less pain) and the scary (possible dependency) that comes with it. I didn’t realize how strong it really was. (For example, 25 mcg/hour is the equivalent of taking 10-22 mg/day of IV morphine.) When I stopped it, I was taking 75 mcg/hr. I wish I had known more about it myself and that’s why I suggest doing research. Nevertheless, I am glad you found something that is helping you. It’s very hard when you have to take pills non-stop due to constant pain. I was miserable the day the shocks stopped goinng away and became non-stop with sharp jolts on top of that pain. When it comes to medication combinations, I am taking 1,000 mg of Tegretol and Flexeril. I’m starting to lower the Tegretol now that I am 8 weeks post op. The surgeon says I should be off of it in a month. Yay! I tried Verapimil, Neurontin, Elavil, Cymbalta and a bunch of others but I would either get no results or a reaction.

5

I am so glad that somebody posted on this. Right now I take anywhere from 5 to 15 Norco a day depending on how bad my type 2 is (5 is a rarity). I don’t seem to be able to get ahead of the pain. I take and take and take and I still am in pain. Right now I am in a phase where my pain generally kicks in around 11 am (thank God). I was thinking about the Fentanyl patch because it is time released. I always worry about addiction but living in constant pain, being unable to work, etc isn’t the answer either. Right now I am on tegretol, baclofen, and dilantin. Have been on nortriptoline, neurontin. Thinking about trying Cymbalta. But then you always have the question “what if the meds i am on are actually working”, “what if the new ones don’t work”, “what if I can’t handle the side effects of the new ones”, “how will I be while weaning off my current drugs”. I will research the Fentanyl patch though to see if I will request it or not. Does anybody have any other pill options for type 2 pain relief (I have tried all the other suggestions on this site for lidocaine etc)? Thanks guys, y’all are great

6

Hiya

I have been reading about opiate addiction for my mother-in law who suffers horrendously with TN. Although I have a background in medicinal chemistry and did a specialisation in anaesthesia, I wanted to make sure that medicine had not moved on and my understanding was inaccurate. Fortunately it hasn't, so I feel able to perhaps alleviate some of these fears.

Addiction is more to do with psychological dependence than physical dependence. In the latter, there are effects that not taking the drug will have on your body that are unpleasant and can be unbearable. In the former, you often see addiction when someone who uses the drug and has specific receptors activated usually in the absence of pain.

I attended a palliative care conference and one of the case studies was of a heroin addict with terminal cancer. This lady still took heroin for her addition but needed additional opiates for her pain and as she was terminally ill, this was not an issue.

All opiates have issues, some more than others. The thing to consider with drugs like fentanyl is what the drug does when it is inside you. Think of oxy and morphine like a shot gun - it fires a cartridge with lots of small pellets and some of these hit the target - good. Others scatter all over - not good as you may be hitting things you do not want to hit and get side effects.

Drugs like fentanyl are a bit like a sniper - when it hits the target, good; when it misses not good. But the sniper is much more likely to hit the target. Fentanyl is much more selective to pain receptors so you need less of it which is why it comes in microgram doses rather than milligram doses. That means there are less fentanyl molecules going inside you than the equivalent of morphine or oxy.

The downside is that fentanyl does not last very long which is why you have to have a constant infusion of it. Fortunately because it is fat-soluble (it will not dissolve in water but will in oils/fats), it can be used in a patch and you can get a constant flow of the drug.

People are more likely to become addicted to a substance if they use it for the "high" it gives them because of the receptors it activates. If used properly for patients with long-term pain, then addiction is not really the issue but you still need to consider the relative side-effects of one drug versus another. If you are in pain, then you need pain treatment which is usually a drug or cocktail of drugs. If you are not in pain and still take the drugs, that is when addiction can become the problem.

In my opinion, long-term pain requires a long-term solution and if surgery is not an option, then drug treatment is not unreasonable - I mean, no-one says stop taking your drugs to help with high blood pressure.

I hope that this helps a little in the conversations you have with your Drs.

Liligirl said:

I am so glad that somebody posted on this. Right now I take anywhere from 5 to 15 Norco a day depending on how bad my type 2 is (5 is a rarity). I don't seem to be able to get ahead of the pain. I take and take and take and I still am in pain. Right now I am in a phase where my pain generally kicks in around 11 am (thank God). I was thinking about the Fentanyl patch because it is time released. I always worry about addiction but living in constant pain, being unable to work, etc isn't the answer either. Right now I am on tegretol, baclofen, and dilantin. Have been on nortriptoline, neurontin. Thinking about trying Cymbalta. But then you always have the question "what if the meds i am on are actually working", "what if the new ones don't work", "what if I can't handle the side effects of the new ones", "how will I be while weaning off my current drugs". I will research the Fentanyl patch though to see if I will request it or not. Does anybody have any other pill options for type 2 pain relief (I have tried all the other suggestions on this site for lidocaine etc)? Thanks guys, y'all are great