Yes, a topical route is better for your liver. And topical tend to have more bioavailability, this means a lower dose may work better than a higher dose that is ingested.
Don’t be fooled though, a lower dose doesnt mean a lower chance of side effects, because the bioavailability is better/higher the other side effects are still out there.
If you’re going to make your own topical be sure to get professional help the first time, a compounding pharmacy will be able to guide you. They could even create it for you. I’m not sure how it works but I know there’s a way to make a patch up with the compounded topical on it, that could be worth exploring.
I don’t know if a patch would work since I would need to put it inside my mouth. The oromucosal compounded medication that was made for me earlier had to be applied to my gums 3x a day. Of course it didn’t help since it had anticonvulsants and ketamine in it. Strange thing happened today; I dissolved some nortriptyline into my lidocaine viscous and slathered that into my gums where the pain is. About 30-40 minutes later I felt very tired and my pain level decreased amazingly. Now I know that tricyclics don’t work very fast, so I am not sure if it was a coincidence, but my pain level hasn’t been this low in months. I wonder if the desipramine (oral tabs) I have been taking since October 20th just kicked in? Almost pain free still and it has been many hours. I don’t want get get too excited yet though, because it could come back again, but tomorrow I will not use the nortriptyline/lidocaine just to see if I remain pain free. Just want to know which med helped.
I guess yesterday was some kind of fluke. Woke up this morning and pain was back to normal levels. Gave it a few hours to see if it improved, but nope! Put on the nortriptyline/lidocaine mixture I made yesterday and pain continued with its normal progression, so put even more on and even added more nortrip. to it and no help. I have no idea what happened yesterday, but unfortunately I haven’t been able to replicate it. Very disappointing!
Kr, my atn of the past ten years is centered around tooth number 8. Tried much of what you have with similar reactions. Brain fog and gi issues ended many drug forays. Today I take lyrica. Sleep is awful. Not due to pain, just reawakening and not able to get back. Sleep study showed that rem sleep included an abnormal amount of awakenings. Regarding your history of low pain during sleep was indicated by one study as diagnostic for neuropathic pain. Back to lyrica…pain specialist had me start with 50mg. Deal killer due to brain fog. Years later I discovered that 25mg capsules were available. With my internist I self prescribed. Worked…but irritability, some weight gain, and maybe very poor sleep is the price. Total per day is only 200mg…so much lower than what many mds prescribe. Cymbalta did show promise…surprised to not read that this drug class was not in your list. I’m only half pain free and can easily escalate pain levels with talking, chewing, etc. After one root canal I have no trust in the medical system. How ever if I met an md that “gets it” I might change my tune. We are such a diverse clinal pop in terms of symptoms and treatment response that trial and error is the scary default. For me, sleep is the most restorative route…by far!!!
Can you say more about your onset and the location of pain, and what dental procedures?
Hi wm_phillips! I did try Lyrica early on, but was very agitated and moody and had very rapid weight gain. As for onset, I had pain in right side bottom back molar. Went to dentist and had root canal (even though nothing seemed wrong with the tooth). Still had pain and it even seemed worse, so went back to dentist and he told me to give it more time to heal. Pain continued to get worse, so begged dentist to just pull it. He reluctantly pulled it and I had him add a bone graft in case I wanted to get an implant. Pain got worse and was in area where tooth used to be and then spread to teeth in front of it and above it. Saw a periodontist who said I did have some pocketing, so had laser surgery. Pain continued. By then, we knew it wasn’t my teeth or gums, so on to a neurologist. Diagnosed with AO and the rest I already posted. I am wondering if I should taper off the tricyclic and take a “holiday” for a month to reset the neurotransmitters? Read people who experience antidepressant “poop out” (Tachyphylaxis) need to do that if increasing dose or changing med doesn’t help. Anyone do that with success?
Hopefully times have changed and dentists will make a neuro referral much sooner. In my readings, the ONLY reported incidences of a longterm positive prognosis are with those that had no dental procedures and took a course of tricyclics very soon after onset of what were regarded as the standard cluster of neuropathic pain…aching, burning, non episodic. After the fact, I changed from using a general dentist to a specialist with training to remind me of the risk when desperateness surfaces. In Florida there used to be one of the best oral facial clinics in the country. Closed due to support pulled by the university. The former director is now dean of the LSU dental school in New Orleans. Might consider contacting the office, or look for others in the country…Lexington KY and Los Angeles are examples. Do no harm is not well needed by too many practitioners and when desperate we are at risk to make bad decisions.
Good question concerning a rotation in medications. You do want to control variables to know what is the active factor in trying something new. Be careful taking advice from me or anyone…and yourself, as well. This is an area that smart people can create a living hell.
Bill
I had to diagnose myself! Afterwards I just found a neurologist that was familiar with these issues. I wish it would have been figured out sooner! I did contact a few doctors and dentists that have written papers on AO. They all replied, but none could give me any medical advice via email (no surprises there). They did say that they have seen my issue before ( where med works for years and then just stops) and they said to “be persistent”. Problem with that is that I feel like my current neurologist has just given up. I had to request the trial of desipramine because she had no other ideas. That was why I contacted a pain specialist. I do run all advice by my doctor before trying (except for my latest addition of nortriptyline oromucosal that I made). I have an appointment next Monday and I will discuss that with her.
KR, I can only imagine…12 years ago, as bad as the profession is now, dentistry and neurology were even worse then when confronted with the varied likes of our symptoms. At this point, I am in a rut, resigned to the status quo of pain management. A true resolution does not yet exist. To pursue the latter has odds worse than Russian roulette. In the first days and weeks I, too, contacted researchers associated with AO. Telemedicine is now available per a recent letter from the practice of my internist. Research into a clinical population, though, is not prevalent. We don’t have the numbers or at least that’s the perception. It’s more likely a break through of another medical issue that has a pin ball consequence for us. If there was a cure, would it not be obviously communicated here?
So you are seeing a pain management specialist? Have you thought of looking into a stellate ganglion block? I have read a few papers on its success with treating AO. That was why I contacted an anesthesiologist at a pain management clinic. If my recent med trials don’t work, that may be my next step.
KR
The pain specialist…trained as an anesthesiologist, is now retired.
So my internist handles the rxs for lyrica and i do use lorazepam 1mg every other night for sleep. Previously, which was not long ago, the pain specialist considered doing blocks for me, as well as radio frequency treatment. I balked. To my surprise, he then agreed. In fact, he had a number of patients with limited outcomes. He came to the conclusion, that, at best, pain disappears for a while and then comes back worse. Hence, why I say “no cures.” The neurologist, still wet behind the ears, was eager to have a gamma knife referral. If I was not a seasoned patient, I would think that this guy is great…so much passion and enthusiasm for my well being. We are all different and must ultimately take responsibility for our own bodies. Sadly, I have had contact with others that their love for their pain guy went south. Whatever consequences they suffer does not compare to what can happen to us. Back to lorazepam. I respond very well. Pain continues in the day, but sleep, contrary to what others experience in terms of quality of sleep, that is restorative. Something to do with gaba receptives, not gaba per se. All the other benzos are not the same. Too much brain fog. Lorazepam is something that could become addictive, easily. Hence, I have a firewall of 1mg, and everyother night in order to avoid heightened tolerance. If I may speculate, I do wonder if stress and how our bodies handle stress is a common thread. As to what to do that’s different…i’m stuck and hard pressed to take a risk. I need solid long term evidence. From the history you have shared I’m going to be brazen and wonder out loud that you may be too much of a risk taker and may feel a compulsion to do something aggressive at the expense of investing more time and effort in pain management life style choices. Diet, exercise, meditation, relationships count for a lot.
Bill
I actually laughed out loud when you wrote “you may be too much of a risk taker”. That couldn’t be further from the truth! I am extremely analytical (that is why I became a chemist) and very cautious whenever a decision comes my way. I research EVERYTHING and weigh pros and cons before making a decision (can be exhausting in my personal life, but works well in my profession). I am also quite skeptical about a lot of things and need proof in order to take anyone’s “word”. I am one of those people that shows up to a doctor’s appointment with my own notes and list of questions (Some doctors aren’t too fond of that, but those are the type of doctors I prefer to stay away from anyway).
I have read that some nerve blocks do not work well for AO, but have read good outcomes for stellate ganglion blocks. I think I mentioned in a previous post that I do respond to regular anesthetic injections (not everyone with AO does), so perhaps a nerve block would work for me. Of course after I have a consultation with the anesthesiologist, I will then start my decision making process before just jumping into the procedure.
KR,
Please accept my apologies. No doubt, when I respond to others I project my own issues. I try to be analytical as possible myself…but I’m the one still stuck. And, you did something right to get six years of relief.
bill
Please explain to me about drug “holiday”. I have heard Red mentioned this before. How do you handle the withdrawal from the antidepressant that is no longer working?
Hi Linda99! From what I read you taper off the drug (tapering process varies depending on type of drug and dosage) and then stay off it for a certain amount of time. Now this is where it gets vague. Some papers said you have to stay off it for as long as you were on it, but that is ridiculous. In my case, I was on imipramine for 6 years before it stopped working and there is no way I would stay off it for 6 years! Some papers said to stay off the med for 3-4 weeks which is supposed to be enough time for your brain to “reset”. Then you start back on the med at low dose and titrate up until pain is controlled. They also suggest you take short drug holidays as you continue taking the med (like not taking the med over a weekend with no tapering). I cannot remember all the details, but you could research “strategic treatment interruption” to find out more. I believe tapering off a med that stopped working may still give some of the normal withdrawal side effects, but if you taper properly, those should be minimal. Of course you should discuss this with your doctor. I will be asking my neurologist more about it at my appointment next Monday. I hope I answered your question(???)
Thanks for information. I will add this to my file.
I might try the short holiday in the future.
No problem right now. I am so glad we have this website
For this rare disease.