The lovely Zen has given you some excellent advice, especially about LMC, if it were that easy to cure I can guarantee you that all the medical insurance companies would recommend you to have it immediately. In fact no insurance company that I know of will support this treatment. Bit of a lightbulb moment, pardon the pun.
Zen Blonde said:
Hi Jen,
I’m in my early 30’s with three very active young children and both Type I and II bilateral. I did a lot of research here and read so many MVD horror stories that I decided not to have an MVD - ever. Fortunately, my neurologist supports my decision and told me there are too many possible surgical complications that could cause other problems and make the pain worse. I understand that many TN sufferers are so desperate that they’re willing to have the surgery, thinking it will be a “cure”. As Red said - there are no “cures”. Some are lucky and go into a spontanious remission and may never have the pain again. We don’t know what will happen and I’m not willing to take a risk.
[LMC] is a HORRIBLE SCAM. Please don’t waste your time and money on the false hope they give. Their “so called” tesitimonials can’t be trusted. There’s a wealth of information here on them. Please do your research.
Best of everything.
Zen
SufferingJen said:
if i cant live on anything but pain meds and cant have surgery i dont know what im going to too…its to scary to even think about. I will def try alot of top Neuros for this and if one will do it or try i will try anything at this point. Has anyone heard of laser treatment working from the laser med center? heard great stories…
Def, now i know to stay far away because my family was thinking laser would be better and they have all these stories on youtube with patients and how they got better. Thank you!! That would have been a disaster if i chose that. Jackie said:
The lovely Zen has given you some excellent advice, especially about LMC, if it were that easy to cure I can guarantee you that all the medical insurance companies would recommend you to have it immediately. In fact no insurance company that I know of will support this treatment. Bit of a lightbulb moment, pardon the pun. Zen Blonde said:
Hi Jen,
I'm in my early 30's with three very active young children and both Type I and II bilateral. I did a lot of research here and read so many MVD horror stories that I decided not to have an MVD - ever. Fortunately, my neurologist supports my decision and told me there are too many possible surgical complications that could cause other problems and make the pain worse. I understand that many TN sufferers are so desperate that they're willing to have the surgery, thinking it will be a "cure". As Red said - there are no "cures". Some are lucky and go into a spontanious remission and may never have the pain again. We don't know what will happen and I'm not willing to take a risk.
[LMC] is a HORRIBLE SCAM. Please don't waste your time and money on the false hope they give. Their "so called" tesitimonials can't be trusted. There's a wealth of information here on them. Please do your research.
Best of everything.
Zen
SufferingJen said:
if i cant live on anything but pain meds and cant have surgery i dont know what im going to too....its to scary to even think about. I will def try alot of top Neuros for this and if one will do it or try i will try anything at this point. Has anyone heard of laser treatment working from the laser med center? heard great stories....
Thank you, now i know to stay far away because my family was thinking laser would be better and they have all these stories on youtube with patients and how they got better. Thank you!! That would have been a disaster if i chose that. I just know that if i cant take anti depressents and anti convulsants only pain meds i would have to try something just because im so young i cant be on these crazy meds forever :( Jackie said:
The lovely Zen has given you some excellent advice, especially about LMC, if it were that easy to cure I can guarantee you that all the medical insurance companies would recommend you to have it immediately. In fact no insurance company that I know of will support this treatment. Bit of a lightbulb moment, pardon the pun. Zen Blonde said:
Hi Jen,
I'm in my early 30's with three very active young children and both Type I and II bilateral. I did a lot of research here and read so many MVD horror stories that I decided not to have an MVD - ever. Fortunately, my neurologist supports my decision and told me there are too many possible surgical complications that could cause other problems and make the pain worse. I understand that many TN sufferers are so desperate that they're willing to have the surgery, thinking it will be a "cure". As Red said - there are no "cures". Some are lucky and go into a spontanious remission and may never have the pain again. We don't know what will happen and I'm not willing to take a risk.
[LMC] is a HORRIBLE SCAM. Please don't waste your time and money on the false hope they give. Their "so called" tesitimonials can't be trusted. There's a wealth of information here on them. Please do your research.
Best of everything.
Zen
SufferingJen said:
if i cant live on anything but pain meds and cant have surgery i dont know what im going to too....its to scary to even think about. I will def try alot of top Neuros for this and if one will do it or try i will try anything at this point. Has anyone heard of laser treatment working from the laser med center? heard great stories....
Jen,
I’m sorry you have this nasty affliction, and are having a rough goo with medications. I’m not able to have surgery, or injections for nerve blocks either. Medications are my only hope along with you and many others here. It is a huge blow it seems to everyone. The thought of having to deal with the rest of my adult life is not a happy thought, as I’m sure it is to anyone no matter their age. I’ve got my husband, and kids to think about and tn has affect so much. As KC stated there is many different medications to try. It is frustrating to be a Guinness pig in find which ones will be the right combo. Sometimes you have to decide on which side affects are the lesser evil. Also you might have to come to grips with the no medication will ever eradicate the pain, but only bring down the pain levels. That in its self can be difficult to accept when you’re already having to accept the harshness of dealing with tn for life time. Try to find something the will take your mind off tn, and take comfort that your not alone. I wish I could give some better advice on this. But all it come down to really is I know what it’s like, I’m in my early thirties, I have young kids to think of and all I want is that special magic pill or surgery that will just make the TN go the hell away, but there isn’t any and I have to find acceptance of the situation at hand. I hope your able to find a better combo of medications then the opioids and will have some relief soon.
Thank you, i can learn to deal and accept it as long as i get more relief from this than i am getting, I havent been able to leave my house in about a year other then dr appts. Because the drugs they use for treating it are so sensative to my system its hard to say what my drs are going to do because so many have made me so sick...i kno wi cant go on any anti convulsants or anti depressants so thats why im just stuck on the pain pills.
Kari said:
Jen, I'm sorry you have this nasty affliction, and are having a rough goo with medications. I'm not able to have surgery, or injections for nerve blocks either. Medications are my only hope along with you and many others here. It is a huge blow it seems to everyone. The thought of having to deal with the rest of my adult life is not a happy thought, as I'm sure it is to anyone no matter their age. I've got my husband, and kids to think about and tn has affect so much. As KC stated there is many different medications to try. It is frustrating to be a Guinness pig in find which ones will be the right combo. Sometimes you have to decide on which side affects are the lesser evil. Also you might have to come to grips with the no medication will ever eradicate the pain, but only bring down the pain levels. That in its self can be difficult to accept when you're already having to accept the harshness of dealing with tn for life time. Try to find something the will take your mind off tn, and take comfort that your not alone. I wish I could give some better advice on this. But all it come down to really is I know what it's like, I'm in my early thirties, I have young kids to think of and all I want is that special magic pill or surgery that will just make the TN go the hell away, but there isn't any and I have to find acceptance of the situation at hand. I hope your able to find a better combo of medications then the opioids and will have some relief soon.
Jen,
Your welcome. I can’t tolerate those drugs well either. Have you tried Lyrica yet? It’s a Pregabalin. It seems to have fewer side affects, so that’s something to think on. Also the lidocaine creams, patches, and mouthwashes might be a possibility too. I can sympathize with you because of being a guinna pig last spring with some really hard hitting side affects. I hope there will be something that will help you out better. Hope you’re having a pain free day.
I don't get them as intense as I did before. They are more like twinges now as long as I am on the Tegretol.
Min said:
This is off topic but when you get in the wind.. does it make you get shocks worse like the next day or something??
Donna Cook Turnage said:
Wow Red, maybe THAT'S why my pain has been so well controlled with the Tegretol. I was diagnosed about 2 weeks after the "shocks" came. I have had to increase it from 200 mg to 400 mg twice a day, but it seems to do the job. If it is really strong winds out, I don't usually feel any pain, but a small amount of burning/tingling type sensation. Other than that, I'm great! Thanks for explaining that. :-)
I've been on the meds for years and years because I have epilepsy. We think that they kinda masked the TN for along time because it did not show up or was not "diagnosed" until we started weaning me down on the meds. I also had HFS which can only truely be fixed by the MVD surgery. I'm 45. I had the MVD for the HFS for my left side on July 17 and it was a success! I am getting ready to have the MVD for the TN on the right side Dec. 13. The meds are not worth it. Plus I have ATN so on most days the meds don't even make a whole lot of difference. I have decided to not let it rule my life and have the surgery so that I can get on with it. Right now, I get up in the am, do as much as I can, take the meds they want me to take and then I am pretty much out for a while, which is a break from the pain, and then when I wake up it is a crap shoot of whether the pain is there and managable or there and I'm so miserable all I want to do is curl up in a blanket and be left alone. I can't wait for the MVD. No more meds and hopefully no more pain! You are much younger than me. You will get tired of taking the meds and they are great for you forever and might quit working after awhile. Go for the surgery!
I also am now considering the MVD for atypical GN. I have had it for just about three years, yet only recently diagnosed. I have been on so many different drugs and am on my cocktail that relieves about 70% of pain.
The surgery is supposed to have 65% chance of success for atypical, and would reduce pain ~70% of the pain. This would bring me to where I am now in best case (of course no meds).
I now have a lot of thinking. Do I get MVD? Do I live with my cocktail and breakthrough pains?
Its a tough choice that I have to make. Reading these forums have been great. Even the older posts like this one.
Do you know if your vertigo is at all related to your TN. I have been having issues with vertigo, red eyes, nausea, Dizzyness, imbalance, blurry vision, double vision, light sensitivity, and this usually leads to throwing up. This happens especially upon waking up from sleep, or can sometimes can occur randomly during the day. Any ideas? Advice?
Mimi said:
Jen, I have type 1 at onset ( pre meds at therapeutic level) and then type 2 rears its head on opposite side as breakthru pain. So I have both types as well as bilateral TN. I saw a neurosurgeon a few weeks ago who said he WOULD do surgery.
However because i have another issue going on for last year dealing with vertigo and imbalance, I'm not making a decision until I've met with my ENT and neuro again. I've also requested a 2nd opinion from a different surgeon as well. There is always hope, but we must advocate for ourselves so request an appt. with a neuro surgeon and research as much as you can. Good luck! Mimi
Jen, the side effects of medication frequently include vertigo, dizziness, imbalance, blurry or double vision, and light sensitivity. TN itself is sometimes co-morbid with migraine. Some patients also experience nausea from either migraine or TN meds. The red eyes thing I haven't heard much about.
As far as advice is concerned, many neurologists would likely recommend that you take an anti-nausea medication along with your primary pain meds. This is worth discussion with your primary prescribing physician.
Hi Jen,
We’re not exactly sure. I’ve had thorough testing for over a year, audiologist, ENT, vestibular physiotherapy, intense testing at hospital, cat scan etc…
My Neuro & GP think it’s a side effect of the Tegretol. Although I’ve been on the Tegretol for years, you can at anytime develop side effects. I’m also now on double the dose I was on when the vertigo presented and I’m way better vertigo wise, so who knows?
The only other possibility would be a cross compression of the 5th TN nerve and the 8 th vestibular nerve, but that is a crap shoot…
Definitely go see your doctor as it could be unrelated, and some tests can be done to verify.
Hope you feel better soon, (( hugs )) Mimi