I have had flares of TN in the past usually lasting 1-2 weeks but I have been able to function. However, this flare now is so bad I cannot talk or swallow (even spit) I was hospitalized 2 days -dehydrating and intractable pain. Got Dilatin IV in hospital which helped somewhat. On tegretol, Baclophen and Dilantin at home. Have not eaten in a week. Forcing myself to drink to avoid rehospitalization. Pain a bit better today. Able to swallow, drink a little, speak a little then pain resumes. Question is- have appointment next month with neurosurgeon as considering surgery.(as drugs not working) Have those with MS had good result with surgery? What type of surgery done? Side effects. By the time I get appt. this episode of TN will hopefully have passed. Since this is worst ever, should I figure episodes to come will increase in frequency and intensity (if it subsides at all)?
I like to bring your attention to a study where they tested the medication "cytotec" or misoprostol for TN in people who have MS: http://www.ncbi.nlm.nih.gov/pubmed/12736732
The medication is mostly used to induce abortion but in this small study they tried it for people who had treatment resistant TN due to their MS with pretty good results.
I have tried it but i wasnt able to tolerate it due to some pretty bad gastro symptoms. But generally it is a benign medication with very insignificant side effects (unless you are pregnant :S).
Chances are not that big that this could help, but i say its worth a try! its sometimes just prescribed to prevent ulcers for people who take advil. Tell your doctor you just want to give it a try. If it works you would be getting a significant relief within a week, and so you can stop it if you dont notice an improvement in one week, no harm done.
The paper mentions 600 micro grams per day, which you have to take in 3 doses of 200 mg a day.
I hope you get some relief! take care
(i have the full journal if you need it)
H
haach76 said:
I like to bring your attention to a study where they tested the medication "cytotec" or misoprostol for TN in people who have MS: http://www.ncbi.nlm.nih.gov/pubmed/12736732
The medication is mostly used to induce abortion but in this small study they tried it for people who had treatment resistant TN due to their MS with pretty good results.
I have tried it but i wasnt able to tolerate it due to some pretty bad gastro symptoms. But generally it is a benign medication with very insignificant side effects (unless you are pregnant :S).
Chances are not that big that this could help, but i say its worth a try! its sometimes just prescribed to prevent ulcers for people who take advil. Tell your doctor you just want to give it a try. If it works you would be getting a significant relief within a week, and so you can stop it if you dont notice an improvement in one week, no harm done.
The paper mentions 600 micro grams per day, which you have to take in 3 doses of 200 mg a day.
I hope you get some relief! take care
(i have the full journal if you need it)
H
Thank you . May be worth a try
I have looked under groups and find one one MVD which it says it not for multiple sclerosis patients and one on failed procedures, which I don't really want to see now. Any groups on multiple sclerosis patients who have had surgery and what kind? Or what kind of meds work for MS patients
@mickchick1962 How did you make out with the surgery? I just joined this website and formum and wanted to see how people living with MS and TN are coping? I have had a flare up over the Christmas holiday and my carbamazapine is no longer helping. I to am having problems eating, and talking. Fortunately I can swallow and have gotten some food down occasionally.
If you could provide any input that would be great. I will be seeing my Neurologist today hopefully. I need to get back to work.
I hope your New Year is starting off Happy and Healthy!
I also just joined this website . I love it since one can expect honest answers here !
Ihad a very bad episode last november . After 3 weeks of trying Lyrica things were really bad . I could not eat, swallow , talk, sleep and I was having a lot of very ,very painfull attacks . Then the neurologist put me on Tegetrol . This felt like " magic " , the pain was gone after a couple of hours !
I also have MS which is the cause of the TN . ( second episode )
When I said to the neurologist that I had read that Tegetrol eventually looses its efficiency , she said : no, next time you’ll have Tegetrol again .
She expected " next time " to be like after half a year .
I had the diagnosis of TN in january 2015 . This also brought the diagnosis of MS
Iknow that nobody can tell the future but I really would like to find out what I " CAN " expect - in terms of … usually …
Now there were almost two calm years after the first episode and the first episode was by far not as bad as this last time .
What do I have to imagine with : chronic and proggressive ? I know the meaning of those words , but do I have to imagine things getting even worse as in much more attacks and each episode much more intense pain ? And medication that doesn’t help anymore ?
How many years usually tegetrol - or other medication helps ?
Your " scared " could be my name : I am so scared for the next episode that this
TN is almost taking over my life .
Help, help !!!
@omieke
We can only have hope. I have had TN for 7 years now and MS for 12 years.
TN is the only symptom of my MS that has been really painful. The first
time I had TN which got really bad my Neurologist did a round of steroids
intravenously which seemed to have knocked it out almost completely I
gradually went back down to 100 mg of carbamazapine. I have had small
flair ups over the years and have had to increase to a daily dose of 600mg
until just now.
We can’t let TN overtake us. I was thankful to find this site to connect
me with people with TN and MS. I don’t know anybody else in my area who
has both. I will let you know what my Dr. tells me when I find out.
Let’s stay strong!
Thank you for answering ( and I apoligise for my mistakes because English is not my native language )
In my case TN was the beginning of the examinations that finally brought the MS diagnosis . ( My neurologist thinks I have had MS for at least twenty years , she talks about a mild form of MS ) .
I have no painful symptoms of the MS . The only real thing for me is often being dizzy .
I suppose you had to go to the hospital with that TN that got really bad . How long were you there ? How long was that period of TN attacks ? What do I have to think about when yoy mention " small flair ups " ?
I read that cabamazepine can loose its effect ? Do you need that 600 mg also in calm periods ? I’m now on 500 mg a day -starting after last bad period in november - and I will gradually go down after a couple of months . I hate the idea of going down with the Tegetrol . ( just scared )
When people who suffer from TN talk about avoiding cold air in your face - do you suppose they think about cold is bad when you’re in an episode of attacks or do suppose they mean that cold air can trigger such an episode ?
Do you have suggestions on how to deal with this monster ?
My neurologist said that the MS is definitely the cause of the TN ( saw it on MRI )
I’m so scared of this coming back that it’s a big part of the day in the back of my head and I still get emotional talking about it !
I have to read your answer often : We can’t let TN overtake us .
Have a good weekend and a very long ( best forever ! ) pain free life !!!
Hi , sorry I forgot to ask an important question : Is a period of attacks of TN considered as a flair up of the MS ?
Are you on medication for the MS ?