I am jealous of your lab.Most topicals I have made have been a waste of product.
Have you tried traditional pain killer for the pain you have now?
Maybe an anti-inflammatory?
I know-not a chance in hell-but if it is something else it should respond.
I cannot remember my doses of the drugs-just that nothing worked for long and at doses that did work caused numb dead hands.
Krt, your ATN pain sounds very similar to mine. I would encourage you to experiment with the topicals more. Many, including me, have had very good results with topical lidocaine or benzocaine. I use just a tiny bit on a tooth pick between the teeth most days. If I need more, on a q-tip, applied to higher up on the gums, or if it is really bad, a lidocaine patch on upper lip/side of nose area. I also used capsaicin, but Iâm just tired of it (âburned outâ-haha) right now.
Currently I am using a mouth guard that my dentist made me out of acrylic, for daytime use. It distracts the nerve enough, and is better than chewing gum all day. It is good for when I have to talk a lot (protects the area).
If the desipramine doesnât do the job, I would encourage you to give amitryptiline a shot again. Your body will adapt to the sedating effects over time. Amitryptiline and Doxepin are the two most used for nerve pain. You might also consider trying them in a topical, though topical Doxepin was not helpful for me.
Hi ziggy, I have tried many topicals (lidocaine, benzocaine, capsaicin, clove oil, plus the one I posted about with anticonvulsants and ketamine), but none really work for me any more. Most just make the pain worse. I may retry amitriptyline, but besides the grogginess, the weight gain was horrible. I donât eat sugar and I eat very low carb, so crazy to gain weight at all. Nortriptyline (a metabolite of amitripyline with less side effects didnât cause any weight gain, but did not help the pain). I will think about it though. Thanks for the suggestion!
ellen5, I have tried regular pain meds and over the counter stuff (cannot take aspirin or NSAIDS because I am allergic to them). I did try a quarter of a oxycodone tablet this morning out of desperation (I donât like narcotics like oxy because they usually just make me throw up AND I donât like taking any drugs that can be addictive), but I was able to tolerate the low dose. It didnât take the pain away, but made me not care about it as much! I got through an 11 hour work day better than I have lately, but definitely NOT a solution. My job can be quite dangerous some times, so I have to be careful what meds I take (another reason why grogginess is such a problem).
I am glad you got through the day.
I am allergic to NSAIDS too.
Do you have mersyndol ?
It is a low dose codeine product.Over the counter in Canada.(for now)
Maybe something like that would work until the appointment.
Oxyâs do not do a thing for me.
Not sure why-when codeine helps.
Have you tried baclofen at any time.?
It is a non-addictive muscle relaxant.
It helps me.
You could do a topical with it.
Hoping you find what works.
\When is the pain management appointment?
No, no mersyndol. I am sure it isnât OTC here in the US. I had tried a muscle relaxant in the past (before we knew it was AO) and it was horrible! Cannot remember which muscle relaxant it was, but my dentist prescribed it and I was excited to take it thinking I would sleep like a baby and feel all relaxed. Instead, I was up all night climbing the walls! Did nothing for the pain either. I guess for some people (very low percentage of people) muscle relaxants can cause basically opposite effects and unfortunately I was one of them.
Still havenât received a call back from the pain management office. Called Monday and they said they would get my medical records and then call me back to make an appointmentâŚhavenât heard from them since. I will call them today and see what is going on.
Canada might want to get rid of the over the counter codeine products-but I think there are so many people who are used to self medicating with it that it would be very difficult,almost cruel,to need prescriptions for it.I will usually use one of the mersyndols instead of one of my tylenol 3âs-so for me it is less codeine .
No Marijuana in your state?
No marijuana here in Florida. I hope that Canada doesnât get rid of the OTC codeine products. That would be horrible for quite a few people I would guess. I could probably purchase mersyndol from an overseas pharmacy (I would have to check), but for now I think I will wait for the pain management specialist visit (they STILL havenât received my medical records, so I still have no appointment set up yet).
It is so frustrating.
Just thinking the mersyndol is the same amount of codeine as Tylenol 1 at
8mg.
And the fact that 1/4 oxy just made you a bit stoned(not the word but all I
got right now) I thinking that maybe a very low dose codeine would help you.
The first thing they had me try was an antidepressant-cymbalta-which worked
but turned me into a crying person.I could just sit on the couch and
cry.One of my nurse sisters came over and was really scared for me and told
me to stop it.
So I went through so many of the tryptilenes.
My family doctor refused to prescribe any more.
So maybe you could try cymbalta?
I learn something every day on Benâs Friends. Iâm Canadian, and I have never in all my (many) years heard of Mersyndol.
As with all OTC drugs, be sure to check with your doctors (and preferably with your pharmacist too) about taking it. Just because itâs OTC doesnât mean it canât react with meds you already take, or have an adverse effect on your condition. Same goes for herbals and ânaturalâ supplements.
Seenie
Of course-always check first.
My sister told me about mersyndol years ago.
I always wonder what other products are behind the counter.?
I always found I could take just one mersyndol instead of 2 tylenol 1.Maybe even just half a mersyndol.
I tried a quarter oxy today and this time it was no help at all. I understand the emotionally effects of some of these medications. The anti-convulsants made me an angry, easily irritated person to where I warned people at work to stay out of my lab or I may go ballistic on them for no reason. This desipramine seemed to initially cause me to be more depressed and cried in my car on the way home from work a few days (not sure if that was due to the med or just from the fact that my pain was back; I hardly ever cry, so not normal for me). Sucks to be on mood altering medications when you just want something to alleviate your pain. I could maybe try Cymbalta, but I read it wasnât as effective for AO as the tricyclics are. Really concerned that I am now resistant to treatment. Tomorrow I am going to try to make a topical with nortriptyline. I was on that orally, but side effects prevented me from staying on it very long. Topicals of those meds are supposed to have lower side effects, so I will give it a go.
I mentioned this on a different thread recently â
TOPICALS DO NOT HAVE LOWER SIDE EFFECTS.
What topicals have are fewer organ-based issued (side effects). Topicals bypass your liver/kidney/stomach and therefore do not cause problems within those systems. They do, however, have all the other side effects as possibilities. Also, topicals tend to be more readily available to your body since they are not filtered through your kidneys and liver so a smaller dose often works better. If youâre going to venture into making your own topical I would encourage you to speak to your local pharmacist for guidance.
Venlafaxine also worked for a bit for me.
After 2 years I do not have a diagnosis.Or I have many.Atypical Odotalagia,neuropathic trigeminal pain,Atypical trigeminal neuralgia.
So I donât know what I have.
Pain management might be weeks or if you were in Canada,months,away.
Please talk to your primary Dr. and see what you can try in the interim.I know in Canada they push the cymbalta.Venlafaxine next,then amitryptiline.Or at least that is how it went for me.
No one knows enough about this to say for sure what will work.
You cannot be working in a lab and being in pain like that.
Are you absolutely sure it is not an infection?
I would just love it to be some other reason that your mouth is sore again.
It just crossed my mind that during another thread someone mentioned having success using cholraspectic throat spray for mouth/throat pain. Itâs an OTC item in the USA that has numbing properties, usually used to help with strep throat.
They do cause less stomach issue side effects which is good, since a lot of the tricyclics gave me major stomach problems. Also, my liver enzyme ALP has been a bit elevated for the last few years (had an ultrasound to ensure my liver and kidneys were good and everything checked out fine) and tricyclics can cause that, so maybe the topical route would be better for the liver?
I wish it was an infection, but it is the same type of pain and the same timing of pain that I had when I was having all the dental exams and no cause was found years ago before diagnosis of AO. I sleep with no painâŚwake up pain free for a minute or longer and pain will increase over the course of the day. No swelling in my gums and pain on right side top and bottom. I have dentist appointment on the 27th, so I will have them check out the area just to make sure.
Doesnât that throat spray contain benzocaine as the active ingredient? I have already tried various Orajel formulas including Orajel Severe which has 20% benzocaine and it helped a little, but only lasted a few minutes. When the pain is moderate, just slathering Sensodyne toothpaste on the area helps (strange, but true), but when pain is severe, nothing seems to help. I read a bit about acupuncture points for the mouth, so I have been trying to put pressure on those points to see if it helps (especially the âwebâ between thumb and pointer finger). Pressing hard on that area used to help some of my headaches, so I thought I would give it a try for this pain too.
I have to disagree with this blanket statement. While it is true that a drug used as a topical can become systemic, it is important to look at the actual amount of drug you are exposed to. When used properly, the amount of drug used in a topical form is almost always significantly less than it would be if taken orally, often by orders of magnitude.
I think it is important to either do the math and figure out what your actual exposure would be (not terribly difficult), or consult with a pharmacist for help figuring that out.
Obviously if you take a normal days dosage, and make that into a topical formula that lasts you a week or more (as I did), your exposure to the drug is much smaller. This becomes obvious when you donât feel any side effects at all.
If someone is feeling side effects from a topical, I would take a good look at the amount that is being applied (probably excessive) and consult with your doctor.
I honestly donât know what it contains, I havenât used it since I has strep 15 years ago. I just recall someone posting it and thought to pass it along.
Iâve often wondered if sensodyne would work! Iâll have to pick up some to have in my med tool kit!
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