My world is in a tail spin once again.Allready upto 1200 mg of TEG per day and still no relief.I had a tooth extracted 4 weeks ago and truly believe because of this something has happened.Its just to coincedental.Tooth extracted same side as MVD.I do have appt with family doc this thurs but plan to email surgeon who performed MVD.It is 5:26am still can not sleep as result of pain.Many thoughts going thru my head about 2 MVD and ofcourse the TEG doesnt help Im in a fog once again.Any comments would be appreciated.Pain is on same side as MVD surgery and gets more intense if I lay down to sleep....I have seen my dentist NO DENTAL PROBLEMS.
Hi Brian,
I’m so sorry to hear that your TN is back…after your mvd were you pain and med free?
Of course your mind is probably racing through and re-living the nightmare of TN pre-mvd…
That’s only normal, and the Tegretol fog doesn’t help either.
From my personal research, I know that MVD is not a cure, ( I had mine on April 9th, less than 2 weeks ago) but a “buying of pain free time” or at the very least a chance to reduce the pain levels to be better managed.
There’s still just not enough knowledge of TN and its cause or course…
And I agree with you the recent dental procedure you had may have woken something up… I don’t know, but as you say too coincidental…
First and foremost, pain control… Perhaps add a low dose second med to help find relief?
I would also email or set up an appointment with your neurosurgeon to discuss.
Hopefully it’s just a short term relapse Brian, positive thoughts!
OMG Mimi as I read I CRY.I was very lucky the first time to get in and have MVD.Was only about 7 months of this dibilitating disorder.I am in so much pain as I sit here an type.But anyways yes I was pain free and med free for 3 1/2 years well almost that had MVD Surgery Jan 29 2010.Please if you get a chance read some of my previous posts.I am very possitive as you will read :)
Brian, I’ve read some of your posts,last year, because you are Canadian like me.
I came across them while I was reading about others experiences with MVD.
I know you’re a positive guy, the thought of TN returning after so long though would bring us all to our knees. Have you ever tried heat to take the edge off? I bought one of those magic bags from Shoppers Drug Mart that you heat in the microwave, helped me survive this past year.
I’m dealing with post mvd insomnia, plus weaning off meds… I hope you’re able to get some sleep soon and just pass out.
Mimi
Brian, I too am just coming out of a relapse after having a root canal finished. I had a Gamma done on March 20th and was feeling more like myself, so went back to the dentist. Three days later terrible relapse. I have read too many accounts from people with this as a common denominator. The pain in my head is So bad that I am going into the neuro tomorrow. This is so hard. I plan to run a 5k on June 9th, my husband and daughter are going to run it with me and it looks like the beast is coming too. Maybe I can outrun it. Pray that you get relief soon.
Sorry to hear you is such deep distress of pain. Anytime I go to dentist I make sure my meds are onboard and a bit more for any dental work. This happens alot because the nerves that branch out are near the TN branches. Hopefully its just inflammation from the extraction. Did your dentist recommend any advil to take. Inorder for advil to work it kicks in 48 hours. All NSADs work this way as antinflammatory It works for me after any dental work. Was the tooth abscessed? Any antibiotics? Where was tooth top or bottom and want tooth was it?
Hope you have a great run!Just too coinciental that after root canal or a tooth extraction brings back this monster.I have also read so many cases this happens too.I am seriously thinking if 2nd MVD is available is to have all my teeth removed so this doesnt happen again.Hope your day is painfree and bright......Goodluck with the Run.....ALL THE BEST
Brian :)
Lou said:
Brian, I too am just coming out of a relapse after having a root canal finished. I had a Gamma done on March 20th and was feeling more like myself, so went back to the dentist. Three days later terrible relapse. I have read too many accounts from people with this as a common denominator. The pain in my head is So bad that I am going into the neuro tomorrow. This is so hard. I plan to run a 5k on June 9th, my husband and daughter are going to run it with me and it looks like the beast is coming too. Maybe I can outrun it. Pray that you get relief soon.
I havent needed meds for just over 3 years since my MVD.The pain I have is deffinetly TN pain only happens when I lay down is much calmer when standing.Extraction was upper right side same side as MVD dentist says its because I grind my teeth at night.So I bought a guard to no avail ofcourse.The tooth was not abcessed.Thank you for your comments and insight I wish you much better days ahead and painfree days ofcourse.
Brian
tatto20 said:
Hi Brian, Sorry to hear you is such deep distress of pain. Anytime I go to dentist I make sure my meds are onboard and a bit more for any dental work. This happens alot because the nerves that branch out are near the TN branches. Hopefully its just inflammation from the extraction. Did your dentist recommend any advil to take. Inorder for advil to work it kicks in 48 hours. All NSADs work this way as antinflammatory It works for me after any dental work. Was the tooth abscessed? Any antibiotics? Where was tooth top or bottom and want tooth was it? My Best Joanne
Hi Brian
I’m fairly new here so don’t know your backstory but so sorry to hear the monster has reawakened in you. I haven’t had MVD but I can’t lay my head down either so I take zoplicone and turn the light out when I’m fairly sure it has kicked in. Also a hot water bottle under my pillow and a cashmere sweater over my head all helps. I also take tramacet in the afternoon to boost the gabapentin. Gets me through the hump. Ask for whatever you need to get the cycle of pain to stop before it gets even more out of hand. I hope you get get it calmed down. It must be pure hell to know what it’s like for it to be gone only to have it come roaring back. Hope you get some sleep tonight. I’m Canadian too. Good luck.
Peace and kindness
Bellalarke
Hi Brian,
I am truly sorry to hear that you are in so much pain.
Others, much wiser than I will have ideas that may be helpful but I wanted to let you know that I am keeping you in my thoughts.
I too have considered having all my teeth out when having to face ongoing dental work but I’m not sure that it would resolve the problems. It’s all too hard.
Thank you for your kind words.I wish you a great painless day and many more :)
Brian
Trish said:
Hi Brian, I am truly sorry to hear that you are in so much pain. Others, much wiser than I will have ideas that may be helpful but I wanted to let you know that I am keeping you in my thoughts. I too have considered having all my teeth out when having to face ongoing dental work but I'm not sure that it would resolve the problems. It's all too hard.
Thank you so much.Only medication I was ever on was the Tegretol to which it controlled my pain.Back in 2009 I was taking 2000 mg of teg a day and yes was having blood work done on a monthly basis all levels were good according to my GP.Side effects on some days was terrible other days was fine,just depends on how fast my liver processes it i guess.
Today is Wednesday April 24,I have appt with my family doctor tomorrow.I'm sure they will want a MRI I hate getting in that machine.On good news my wife had sent Dr Micheal Tymianski a email the other day and he responded very quickly and now pending a referrel tomorrow I have appt May 22 to see him.Tymianski perfomed my first MVD,January 29 2010.Pain seems to be controlled now with the tegretol but still have slight jabs of pain so within the next couple days I should be pain free.......(crosses fingers)
I'm embarresed to say I overdosed on tegretol Monday evening.....wanting the pain to stop and ramped up my Teg too quickly.Good levels in my system are to be no higher then 5200 Monday evening my level was 8200.Went to emerg where they took blood and gave me a shot of Torodol which took care of the pain.So today I am taking 200 mg 4 times a day and i'm very close to that magic number so to speak.Better days ahead I hope.
Thank you and may you have a painfree day :)
Brian
Bellalarke said:
Hi Brian I'm fairly new here so don't know your backstory but so sorry to hear the monster has reawakened in you. I haven't had MVD but I can't lay my head down either so I take zoplicone and turn the light out when I'm fairly sure it has kicked in. Also a hot water bottle under my pillow and a cashmere sweater over my head all helps. I also take tramacet in the afternoon to boost the gabapentin. Gets me through the hump. Ask for whatever you need to get the cycle of pain to stop before it gets even more out of hand. I hope you get get it calmed down. It must be pure hell to know what it's like for it to be gone only to have it come roaring back. Hope you get some sleep tonight. I'm Canadian too. Good luck. Peace and kindness Bellalarke
Oh Brian…I’m glad you got to ER and are now on track with the Tegretol.
It’s easy to do, ramp up too quickly that is. Tegretol XR always worked best for me, slow release allowed me to have Tegretol in my system consistently. Covered my pain better than the regular kind. Highest dose for me was 1600mg before the levels got to be near toxic.
WoW, glad to hear Dr. Tymianski got back to you so quickly! That’s great news.
I hope that you can get the pain under control with low dose Tegretol and not need to look at a repeat mvd. There’s so much we don’t know about TN and I always feel hopeful that remissions can occur…
Thinking of you, Mimi
Thank you Mimi.I had tried the slow release Teg my first time and it wasnt working for me.....not to say it won't this time.Its really crazy how this time things are different See I was ramping up because I remebered how much it took my first bought with this dreadful disorder.I dont know even at 800mg or 1000mg if I can live a normal life still having side effects.Beleive me I will take the side effects over the INSANE pain any day.But if surgeon will perform 2nd MVD I truly think thats the best.I really need to speak with him as something has obviously happened wether its the teflon pad shifting or a new compression or what.Very scared but to live normal with no meds and no pain is deffinetly my objective.Thank you so much :)
Brian
Mimi said:
Oh Brian...I'm glad you got to ER and are now on track with the Tegretol. It's easy to do, ramp up too quickly that is. Tegretol XR always worked best for me, slow release allowed me to have Tegretol in my system consistently. Covered my pain better than the regular kind. Highest dose for me was 1600mg before the levels got to be near toxic. WoW, glad to hear Dr. Tymianski got back to you so quickly! That's great news. I hope that you can get the pain under control with low dose Tegretol and not need to look at a repeat mvd. There's so much we don't know about TN and I always feel hopeful that remissions can occur... Thinking of you, Mimi
I hear you Brian, and agree a life with no meds and dreadful side effects is way better. I’m sure you’ll make the best choice for you, know you’re supported here. Hoping your doctor can shed some light on what’s going on. : )
Hang in there!