Hi KC, I have been taking Misoprostol 200 mcg. with each dose of Baclofen. My Neuro has me take them together and when I started I checked with my Pharmacist who explained how they worked together which my fuzzy brain promptly forgot the details of. I also take Promethazine as a anti-nausea (or hurl-a-whirl, as my kids call it) medicine since nausea and vomiting is one more “gift” that comes with my TN.
What is Misoprostol what family is it in, and how does it help with Baclofen -- anyone ?
Don't forget, Besides pushing lidocaine patches.....
I am still a true believer on SHORT term Ritalin type meds, when you have to be your best, focus, research, remember, its in millions of home across the USA - it counteracts FUZZY meds ! I had to watch videos of Dr. Casey, and have a clue what I was watching......
If it was Not for Ritalin - taking it 3 days a week for a month or two, I could not have EVER put it together, what surgeon, what airline, needed to find GOOD new dog sitter while gone,
I had to put a package of research together the way that I needed it to come together, including where to stay in Michigan, and where to sleep halfway on the drive home after MVD.
It all came together beautifully, and I thank my neurologist for helping me with that prescription - think of all the epileptics, people with neuropathy like my dad, who can't remember shit- because of Neurontin - who need to have some memory back....
--- but his heart can't take an ADHD med..... but some of us can if they need to be able to short term.
Misoprostol (Cytotec), is a synthetic prostaglandin E1 analog. It's used to reduce the probability of gastric ulcers in people taking nonsteroidal anti-inflammatory drugs, including aspirin.
Regards, Red
I stopped taking gabapentin for that very reason...could not remember ANYTHING. I could not even complete a sentence...and I was not anywhere near a therapeutic dose. Guess it affects some people much more than others. I had a friend who took it for a different reason than TN...but his dose was massive and it did not seem to affect him at all!
Kc Dancer Kc said:
What is Misoprostol what family is it in, and how does it help with Baclofen -- anyone ?
Don't forget, Besides pushing lidocaine patches.....
I am still a true believer on SHORT term Ritalin type meds, when you have to be your best, focus, research, remember, its in millions of home across the USA - it counteracts FUZZY meds ! I had to watch videos of Dr. Casey, and have a clue what I was watching......
If it was Not for Ritalin - taking it 3 days a week for a month or two, I could not have EVER put it together, what surgeon, what airline, needed to find GOOD new dog sitter while gone,
I had to put a package of research together the way that I needed it to come together, including where to stay in Michigan, and where to sleep halfway on the drive home after MVD.
It all came together beautifully, and I thank my neurologist for helping me with that prescription - think of all the epileptics, people with neuropathy like my dad, who can't remember shit- because of Neurontin - who need to have some memory back....
--- but his heart can't take an ADHD med..... but some of us can if they need to be able to short term.
After reading what too many people have to go through,I realized that as concerns medication, I am truly blessed. The latest flare-up was uncontrollable, and to make it worse, if I gave in to the natural tendency to close my eyes to let the pain pass, that little tug on the nerve would increase the pain, so I had to remember to open my eyes wide instead of shutting them. 100mg tramadol several times a day took the edge off until I could get to my doctor, who prescribed Tegretol for the first time. That first tablet killed the pain. I was able to take it for only 4 days because of side effects, but after those 4 days tramadol 100 mg was able to keep it under control. Hydrocodone has had no effect on it.
So, my drugs have been tramadol and Tegretol, and for me they delete the pain. I just need to remember not to press on or rub the area of the V2 branch of the trigeminal nerve.
epanutin does that to me...had to stop the van on the road to the shop 3 times to get rid of very small spiders thought i would crash if i didnt and jumping out of my skin at the slightest little thing...also happy for 10 minutes depressed for ten minutes all day like a mad rollercoaster...oh yes and the memory of a goldfish
Not Again said:
OMG. Keppra....that drug made me an emotional wreck and so paranoid that I had a security system put into my house and yet stayed awake all night with the phone in my hand.....and I had a 100# Giant Schnauzer living with me at the time! Anyone else have bizarre paranoia from Keppra?
Thanks for the listings. There is new med out called Nycenta or something like that. It is helping my wife a little but it is a mild narcotic and anti-seizure. I have found a doctor in Georgia that said they have had positive results by injecting Botox for TN. I am in the process of getting in contact now, and don't know the details yet.
Has anyone tried to get a dentist to inject a big dose of long-lasting Lydocaine for TN? At least a patient with ATN might get some relief for a few hours. However, a neuroligsts told me that Lydocaine is not indicated for TN.
There is a new brain surgery that involves placing a sensor on the brain. Wires are run to the outside and a tuner is adjusted until the brain is tricked. Then the tuner is implanted. This is relatively new but I think it is being dome around the country. Maybe even at Emory Hosp. in Atlanta. A neurosurgeon Dr. Buolis.
Ask the doctor in Georgia how long the Botox injection procedure typically helps facial pain patients. My impression is days to perhaps a month.
Lydocaine typically processes (oxidizes) out of the body in hours, so yes, it's not indicated for TN. However, several patients on the site have indicated that Lydocaine topical creams have been helpful for them.
Before you consider deep brain stimulation surgery, you might contact Dr Ken Casey in Michigan. He is co-Chair of the US TN Association Medical Advisory Board, and he has performed some of these procedures. His contact data are available at the TNA site, linked from the top of the Find a Doctor page on our menus.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
The best sub-lingual vitamin B-complex product that I have tried is "Sub-lingual B Total".
It is a non-prescription product manufactured by Nutraceutical Solutions Inc in Corpus Christi, TX (1-800-856-7056; www.btotalenergy.com) that is readily available over the internet from various sources. Cost is about $9 per box of two 2 fl oz dropper bottles (each a 30 day supply). Contains folic acid, B2, B3, B6, B12, & B5 in various daily recommended percentages.
In my 20's I would get B12 injections to assist with immune protection (my sister worked in for an MD who recommended this and later she took this to help with carpal tunnel). After she took another job, I found Sub-lingual B Total in place of the B12 injections and I have continued to take this product pretty regularly for years.
Coincidentally, when my TN first arose and this most recent time when it slammed back, I had run out of my supply and not been taking it for a few months. You can bet I have reordered. Alone of course it is not enough to completely deal with my symptoms (I can only wish) but it does seem to help on the margins. And it does seem to have helped with my immune system. Even if the effect is only placebo, it is a pretty inexpensive thing to try. Lots cheaper than any of my meds or doctors!
If anybody tries this, you may want to try 1/2 dropper at a time the first few times: my sister is very petite and has to take 1/2 dropper and then wait about an hour and take the other 1/2 dropper. Otherwise she gets a Niacin rush and gets flushed and her face and chest redden and get splotchy and itchy for about 15 minutes (fades away quickly, but is scary if you don't expect it). I haven't had any problem taking a full dropper each morning, but some people are sensitive. Also, product has a mild, OK (but not delicious) taste and you only have to hold it under your tongue for about a minute.
Just a reminder to everyone concerning meds -- especially if you are uninsured. A couple of months ago, I broadcast a link to a PBS investigative report on generic prescription drug costs in the US. There is wide variation in costs -- like ten to one -- between major drug chains. Costco may do better than a lot of other chains, and you can go to their pharmacy desk without being a member. Some of the best prices are found at small local pharmacies.
It pays to shop around...
Regards, Red
Thanks Dancer!!!
@Kc Dancer Kc Thank you so much for this list. This will really help me out. I just printed it out and will bring this with me to my next appointment which is on the 11th.
I am really interested in the cannabis salve. What is the name it goes by? My grandmother used to have a card and drank it as a tea for severe arthritis. Sometimes it is that burning itch combination that drives me up the walls.
Riana
I have seen this mentioned in previous discussions but they were quite old and I think the more widely this is known the better.
If you've been diagnosed with ATN or some sort of Myofascial or Atypical Facial Pain, and haven't been down this route, it would be well worth considering.
This does NOT substitute the professional advice of a Doctor, GP or other medical professional and are only the result of my own personal experience.
If you are able to tolerate, and are getting some benefit from an AED like gabapentin/pregabalin/tegretol along with a TCA like Amitryptaline, you may also find a muscle relaxant helpful as sometimes this type of shooting/stabbing pain can be caused by nerves getting impinged on by tight muscles (I am not a scientist, and I'm on just over 2grams per day of "Morontin" so my advice can be taken with a pinch of salt).
If some of your pain is part of a Spasm/Pain cycle, then shorter acting drugs like Diazepam and Temazepam can help to loosen the muscles. Clonazepam is a longer acting drug that is meant to be taken long term. These drugs have an Anti-convulsant property, amongst others, and people with TMD may benefit especially as TN can have similar symptoms.
There is only one problem and that is that drugs from this family can be very habit forming i.e. addictive for those with personalities vulnerable to these behaviours. But if you can be disciplined to only take a little as possible (e.g. 2-4 mg of Diazepam) and as least often as possible, they successfully help some kinds of pain, and hopefully break the cycle!
Ideally one shouldn't have to take these drugs at all and the supplement Magnesium is also important for muscles but sometimes if you need a spasm in your ear canal, or temporalis, or hamstrings to subside, then perhaps it might be worth letting your doctor suggest one of these drugs to you
I am on 300mg of lyrica 3 times a day, 100mg of phenytoin 4 times, 5mg oxycodone 2 times, 60mg of cymbalta, for the TN alone. I medicate 19 times a day; what is all this medicine doing to my system? Will I have organ shutdown?
An Anonymous contributed here -- this was ordered by a PCP :
Fentanyl 12 mcg patch (a new one put on every 3 days).
: )
Sorry this took so long.Dr.Casey suggested these two, I think they are less then seven yrs. old. The 1st one is vimpat, the other one is zonegran. Hope this helps someone. God bless all, dawn
BUMP
Amitriptyline gives me nightmares and very weird dreams..
Not Again said:
OMG. Keppra....that drug made me an emotional wreck and so paranoid that I had a security system put into my house and yet stayed awake all night with the phone in my hand.....and I had a 100# Giant Schnauzer living with me at the time! Anyone else have bizarre paranoia from Keppra?
FROM OUCHEE BOO BOO:
DOCTOR STARTED Gralise. I'm still slowly and steadily increasing the dose.
She put me on ConZip ( a form of tramadol only taken once a day) to help with pain and to make me less reliant on hydrocodone (for the crushing pain).