i was told by a chrioprator today that craniel adjustment will help with tn. has any one heard of this or tried it? and how did it work? thanks michelle
Hi Michelle, I’ve heard of cervical spine adjustments but not cranial…perhaps ask the Chiro to refer you to some of his or her patients that he/she has done this for that you could talk to?
Have been told by RED and by Dr. Ken Casey - that this should ONLY be done with someby certified by NUCCA
Google NUCCA and see if there is a participating certified person in your area.
"Just any-old chiopractor" could make you worse!
I had 3 adjustments done, which didn't work, so at $250.00 US dollars per visit I gave it up. Not to say that it doesn't work, it just didn't work for me, and perhaps I didn't go enough.
I read about this and some said it helped. I wonder if you are talking about c-spine adjustments. It did not help me. I went in a desperate attempt for relief. Immediately after the adjustment, the room started spinning. It wasn’t just mild;; the room was spinning so bad, I was holding on to the chiropractor. Thank God my husband took me because I would not have been able to drive home. That night I wound up in the emergency room with excruciating pain. Michelle, my advice would be to stay far away. I have read that some people benefited but I certainly did not.
You may want to check with Red on this, I seem to remember he said its not a good idea. I assume that the MVD hasnt lessend your pain any, I am so sorry for you and hope you get relief
Wendy
I had a cranial adjustment last month to help with some compressed vertebras in the cerivical area and it set me off really badly. As soon as she did the adjustment the room started spinning so badly that I could not sit up without holding on to the chiro and then my husband. By that night my head was in so much pain I thought it was going to explode and this went on for about 5 days before it started to let up. Now let me say that before I had it done my TN pain was not that bad and since it has slowly creeped up and four days ago I popped a vertbra in the neck again and now I am in terrible pain again. So, here is my advice to you, stay away from chiro's they are dangerous to us and you do not want to go there trust me. I hope you get to feeling better, I am really sorry you are going through this but please be very careful with chiro adjustments.
Sometime in 2009 I began having some pain, and thought is was dental related. I visited two dentists and the 2nd one performed a root canal for $1500.00. It did not help. By Aug. 2009, even lightly brushing the hairs on my face would cause pain. OTC pain meds did nothing, and I guess I have a high tolerance for pain, because I just lived with it.
In July of 2010, I met two very unique MDs (husband and wife: David Meadows, and Sherryl Tomboulain). My husband and I teach Advanced CPR classes. The doctors were leaving Grass Valley CA and going to work at a small Hospital in CO. Although they are both MDs they seemed to have a world of holistic and eastern medicine knowledge. They spent two days taking classes with us, and after their classes were complete, I began to share my pain and experiences.
Dr. Tomoulain immediately diagnosed TN, further telling me that having a root canal with an active cold soar, was a big NO NO. I had no idea. She performed a cranial adjustment. (placed her index, gloved finger, in my mouth where the mandible and maxillary joint is, and pressed firmly and constantly for several seconds, maybe a minute. It hurt, and nearly brought tears to my eyes. Call it a miracle, but in a day or two the pain was gone! Gone for almost 2 years!
Last July, 2012 the pain returned. This time I visited a chiropractor. My husband and I have used an NUCCA (Upper Cervical Blair Chiropractor since 1990 ( Daniel Kuhn in Huntington Beach). My husband sustained a ruptured disc in a car accident., and got worst from "traditional" chiropractics (snap-crackle-and pop stuff) I began NUCCA in 1991. From 1991 until 2001, we received adjustments routinely, as did our daughter starting at age 4-5years. In 2001 we moved and Dr. Kuhn referred us to a colleague Dr. R. Weldon Muncey in Lancasster CA (deceased 2008) an NUCCA chiropractor about 45 minutes away. My husband continued treatments, but because we don't have insurance, and I "felt" good I never went. Until last July, when the TN flared up. I received one adjustment, and another at two weeks. The 2nd adjustment caused a tingling sensation in my head, and when I sat up, my neck and TN pain were both gone. I didn't tell anyone until the next day, because I thought it was unreal, and didn't want to "jinx" it.
A few weeks ago I started having TN symptoms again. It started gradually, and a week ago, became more persistent. I saw the NUCCA chiropractor on Monday. Today is Wed. (well actually almost 1am on Thursday), and still no relief.I'm hopeful, and will see the chiropractor again on Monday. Have even tried to give myself a cranial adjustment, in desperate attempt to stop the pain. It's become so severe I'm fearful to eat.
I joined this site specifically to see if anyone could direct me to a provider who knows how to perform the cranial adjustment, in case the NUCCA adjustments don't work. I live in CA. Kern County, but LA is only a couple hours and Orange County is about 3 hours away.
I firmly believe in chiropractics, but fear that many are just out to twist and torque the body, in ways that can be detrimental. Myself, my husband, daughters, mom-in-law, (2) sister-in-laws and an aunt all began seeing Dr. Kuhn in Huntington Beach, back in 1991. We all traveled between 30-90 minutes each way to receive adjustments from him, and can testify to countless benefits.
I hope I didn't bore anyone with my "story". and appreciate this forum. If anyone in Central or So. CA knows of a provider of cranial adjustments, please feel free to email ■■■■■■■■■■■■■■■■■■■. Thank you!
It's late and I have a 9:00a class, kids are up by 5:30a for school. Good night, CIndyStar
Kc Dancer Kc said:
Have been told by RED and by Dr. Ken Casey - that this should ONLY be done with someby certified by NUCCA
Google NUCCA and see if there is a participating certified person in your area.
"Just any-old chiopractor" could make you worse!
CindyStar said:
I would agree, for what it's worth. NUCCA is the only way I would choose. I have also had a cranial adjustment that helped for almost 2 years. Upper Cervical/Atlas adjustment and cranial adjustment is not the same thing. CindyStar
Mary said:
I read about this and some said it helped. I wonder if you are talking about c-spine adjustments. It did not help me. I went in a desperate attempt for relief. Immediately after the adjustment, the room started spinning. It wasn't just mild;; the room was spinning so bad, I was holding on to the chiropractor. Thank God my husband took me because I would not have been able to drive home. That night I wound up in the emergency room with excruciating pain. Michelle, my advice would be to stay far away. I have read that some people benefited but I certainly did not.CindyStar said:I would agree for what it's worth. NUCCA is the only way I would choose. I have also had a cranial adjustment that helped TN for almost 2 years. Upper Cervical/Atlas adjustment and cranial adjustment is not the same thing. Don't let them snap-crackle-n pop or twist and torque...even some who call themselves Blair Chiropractors get caught up in the frenzy of various techniques, it's tricky to find a genuine pure H.I.O Chiropractor .
I feel like I'm not commenting in the forum correctly, so forgive me If I'm repeating stuff.
Update - I wanted to clarify or correct my earlier posts: I didn't realize that the Cranial Adjustment I received in 2010 was from an MD who is certified/licensed by the Osteopathic Cranial Academy http://www.cranialacademy.org/. Spoke with her on Monday and received the specifics. Hope It did not pose any problems or confusion.
I still stand behind NUCCA and Blair H.I.O Chiropractics.
Began taking Tegretol 200mg twice a day. Took my first dose at 5:00pm. Any idea how long the Tegretol takes before benifits and relief are noticed?
CIndyStar said:
I recently discovered that that the cranial adjustment I received in 2010 was from an MD who is a member of the Osteopathic Cranial Academy http://www.cranialacademy.org/ Not the same as NUCCA. I spoke with her, (the MD), on Monday and was informed on these differences. I'm hoping she will visit me in June from North Dakota....She is worth her weight in gold time 100!
Saw my local MD today, she has never treated anyone with TN, so it was educational for her, I think. I chose Tegretol, based on much of what I have researched, but she was less informed than I. The pharmacist was absolutely NO help, whatsoever. Guess Grapefruit is out, from what I read in the paperwork. Began taking Tegretol 200mg twice a day. Took my first dose at 5:00pm. Any idea how long the Tegretol takes before benefits and relief are noticed?
Grateful for this site, and everyone's comments.
Kc Dancer Kc said:Have been told by RED and by Dr. Ken Casey - that this should ONLY be done with someby certified by NUCCA
Google NUCCA and see if there is a participating certified person in your area.
"Just any-old chiopractor" could make you worse!
CindyStar said:
I would agree, for what it's worth. NUCCA is the only way I would choose. I have also had a cranial adjustment that helped for almost 2 years. Upper Cervical/Atlas adjustment and cranial adjustment is not the same thing. CindyStar
http://www.cranialacademy.org/ The cranial adjustment worked on me. One adjustment and for 2-years I was symptom and pain free.
hi CindyStar,
Relief from Tegretol can be felt initially within 48hrs for some, but usually takes time to build in your system to a theraputic level. On average theraputic levels are usually reached between 600mg-800mg, but we’re all different. side effects usually minimize after 10 days.
hope you find relief soon, Mimi
Mimi, thank you for your comments and sharing information. I had to try it because I can't afford to not work. (We're self employed; 3 kids at home and 1 in college; my job requires "lecturing/teaching" for up to 8-10 hours a day). I praying that the Dr. in North Dakota will pay me a visit in June for another Cranial Adjustment. We prefer a more holistic and natural approach when at all possible, but being healthcare providers, and teaching Doctors, Nurses, and Medics we know that medications have their place in treating ailments.
When you say 600mg-800mg is that each dose twice a day or total for the day? My Primary MD, has no experience with TN, and she suggested 100mg twice a day, but mentioned that it may take up to 1200mg (total) per day, and had no idea how long it would take to feel relief, nor did the pharmacist, he was a complete joke! I decided to take 200mg twice a day based on what I have been reading here, and other research I have read. I'm a tad bit concerned because I read that Asians have a higher potential for some side effects, (I'm half Japanese), but I'll wait and see. I'm also concerned about coming off the Tegretol later, especially if the cranial adjustment is received, and is successful again.
Thank you again, for your comments. I pray for everyone who suffers from this disease, and hope for a better tomorrow!
Cindy
Mimi said:
hi CindyStar,
Relief from Tegretol can be felt initially within 48hrs for some, but usually takes time to build in your system to a theraputic level. On average theraputic levels are usually reached between 600mg-800mg, but we're all different. side effects usually minimize after 10 days.
hope you find relief soon, Mimi
I'll add a note here if I may... The TN Association sponsored some panel discussions on Cervical Chiropractic in some of its national conferences around 1998-2002. The bottom line at that time seemed to be that some patients believed they had been helped. They were not in the majority, but those who had gotten relief were strong in their advocacy.
My personal view based on a fair amount of reading and online research is that there is no such thing as cranial chiropractic in adults. The bones of the skull are fused. And I have profound reservations about any other form of chiropractic including that delivered by NUCCA practitioners. It is known that a temporary anesthesia can be introduced in the trigeminal system by stretching the spinal chord. The same effect can operate during MVD, if the surgeon manipulates the nerve while padding it out. However, the effect is temporary and it can be accompanied by long term nerve damage if the manipulation over-extends the spinal cord.
I very much doubt that any chiropractor will put you in touch with their patients. There are restrictions in the US under the HIPPA laws. And even if you talk with someone, you don't know how the practitioner has cherry-picked them out of a larger group.
My two Red cents, for whatever they're worth..,
Regards, Red
Those Tegretol totals are per day.
I used to take 2x200mg Tegretol XR in the a.m and then 2x200mg at night. The slow release version always worked best for me.
I was able to work and function, felt normal at 800mg/a day. But that was me…
I am now taking 1200mg a day 400mg in the morning, 400mg at noon and 400mg at night (200mg tablets). ( I was up to 1600mg pre-mvd)
Yes, it’s important to increase the med slowly, remember I’m not a doctor, but in my experience with my doctors instruction, I have added 200mg Tegretol when my current dose wasn’t covering the pain, after 2-3 days another 200mg. Every time you increase the side effects increase until your body adjusts.
Coming off the Tegretol is similar and you shouldn’t have a problem, you just cannot stop all at once. It’s a weaning off process to prevent seizures.
Studies have shown that people with Asian ancestry have a higher risk of developing Stevens Johnson syndrome SJS as well as Toxic Epidermal Necrolysis TEN. I would advise asking your doctor for a screening before you increase anymore.
Everyone taking tegretol should also be having frequent blood tests to look for lower white cell count and toxicity.
Don’t increase anymore without your doctors guidance and proper blood work done.
Hope you find relief
(( hugs )) Mimi
A note of caution: titration schedule for anti-seizure meds can depend on body weight and any evidence of medication sensitivity. So it's not a great idea to generalize from an individual's experience .I know that Mimi is aware of this and I'm not picking on you, Hon. Just reinforcing a point you made. Tapering up or down should be done with a physician's concurrence.
Regards and best,
Red
Hey Red,
I said that at the end of my post…
“Dont increase anymore without your Doctors guidance”.
Mimi ; )
Like I said, just reinforcing your point, Mimi. Regards, Red