You may have intentionally post the LED commercial product that you weren't supposed to, but thanks to you I clicked on the linked, read the info, and ordered the product. I am desperate and if it works then I have you to thank. Like you, I am in pain 24/7 but I also feel intense muscle/nerve movements in and around my mouth and lips 24/7. No docs really understand what this is. Some said I have dystonia and some said I have hemifacial spasm. I still pray daily that God will get me out of this mess.
Wish you and every one in pain find relief, peace and comfort.
Nina-I am in no way advertising that product but after seeing how well using that type of technique that was used by my husband's chiropractor helped with leg muscle spasms-which I get as well in the morning,
I decided to try it on my face and asked my neurologist about it and he gave his blessing more me to try it on a limited basis.
I looked for a small unit that would not interfere or dry out my eye-which also is completely numb. (I wear room darkening goggles with it when I use it near my eye) and even after the first 5 minute treatment I felt the tingling that I feel was the release of the lactic acid in the strained muscles. I only do the treatment twice a day for 5 minutes on affected areas and know this is an "out of the box" technique But having had intense nerve pain with the TN I find the AD pain is more like a muscle pain.
I still have complete numbness and follow my med routine but a little success goes a long way to keep your spirits up.
When I was in the hospital last time I had tremendous mouth burning as well and the neurologist had me use a facial pain patch for a just about two hours and it actually did help-just a suggestion , not an endorsement.
Although I work full time and and the primary caregiver for my dad who is dying of stage 4 cancer, I find my triggers for facial spasms around my mouth come from eating hard foods and swallowing and even turning my head. I do head and neck exercises each morning that seem to help.
Sorry for the long reply but I really do feel sharing information about what has and has not helped in the God send of this site.
Too often waiting weeks to get into a doctor appointment or going through the ER is not only costly but an indignity to the soul when we are at our most vulnerable state.
Best of luck to you and all that are on this sight desperately searching for nothing more than normalcy. Prayers and blessings.
First of all, I would lke to apologize for addressing you as Mr. I was only basing it on your username. Secondly, I meant to type "unintentionally", not "intentionally" as far as advertising the LED product. Thank you for sharing your experience and information. I have been using salon pas on my cheek hoping it will help ease the pain. I also have been using capsaicin cream, which burns like crazy for the first few days until your skin gets use to it. Not sure if any of this helps because I still feel pain and twisting movements in my face 24/7. The intensity of the pain depends on how hard the muscle contracts. From the time I wake up to around noon the pain level is between 2 to 5. From noon to the time I go to sleep the pain level is around 5 to 9. I cannot sleep unless I take clonazepam. I have taking 3 months off from work because the stress makes my spasm and pain worse. I will go back to work on Aug 3rd. I hope all will be ok. What is the name of that pain patch you are referring to if you don't mind me asking?
My crazy name on the site comes from a 20+ year old email account my husband set up and abandoned on earthlink so since I'm basically computer delayed I just keep using it. I love my devise and think it may help you as well but just don't over use it. If you get a charley horse it is great for that too!! Added bonus.
I used Lidoderm/lidocane that require a prescription and you have to cut to fit your facial area. I never left them on for more than 2-4 hours because at some point the patch being on my face bothered me more than the relief I was getting.
I have the same pain time pattern. I wake up in the morning thinking I can take on the world and by 5-8 pm I am home in my chair in great pain.
Best of luck and let me know how things are going. I know how frustrating the cost and waiting for an appointment and if you are like me, my face acts up the least on the day at the hospital-go figure!!!
Take care and good luck.
I was surprised when my neurologist ordered the low dose of diazepam as well but I guess it makes sense since it is a muscle relaxant-and one of the few inexpensive prescription!! It seems to really help as well and has allowed me to reduce the amount of Baclofen that I'm taking
My doc also prescribed Baclofen to replace Clonazepam, but after using Baclofen for two weeks I didn't feel like it was helping, particularly it did not make me drowsy and I needed that drowsiness to fall asleep or else I can't due to the facial contraction. Can you feel your facial muscle or nerves move constantly? I can...24/7. It is a twirling round and round motion. Sometime slow, sometime medium and sometime very very fast, which cause a lot of pain.
I will let you know how the LED works once it arrives. I still have hope and faith that what ever those movements are doing inside my face it is for the good and that I soon will be healed. I used to get really down and depressed about this condition because I was such a happy person all around. Now I don't want to see friends or talk to anyone because my mouth/lips are moving on its own due to the spasm. However, when I think of God and whatever it is happening to me it is for a reason and he is working his magic and I will be healed soon. I continue to think like this and I feel more a peace. In the meantime, I will try everything I can to manage the pain.
Before including the diazepam and light treatment I could feel nerves in my face moving all the time except when I first woke up in the morning. My lip would sometimes pull away from my lower mouth like a frown or on the upper lip like I was snearing. My also would twitch in crazy ways-my sister thought that I was giving her baseball signals. Sometimes the muscles would pull my inside of my mouth close in and I would bite the inside of my mouth-my dentist provided a mouth guard for that or other times it would pull away and I could feel large gaps between my teeth and my mouth. Now It just feels numb-I still bite the inside of my mouth but it is so much better.
The diazepam may help with sleeping as well and distraction is key. Previously as soon as I stopped to rest it felt like the left side of my face was having a show for me.
Thanks for the information Kathy. My LED light is currently being shipped to my home. I hope it will stop this crazy nerve movments and muscle spasm inside my mouth. I was totally numb after MVD surgery, which was 13 months ago, but now only slightly numb around my mouth area since that's where most of the movments are at. I guess everything is connected because sometimes I feel the movements crawl up to my right cheek and temple then back to my mouth area again. Occasionally I feel it creeps up to my ear...Yes, very weird.
Anyway, I will let you know how the light treatments go after a week of using it. Will this be enough time to see result? I think I had mentioned in another post that I had botox injections done a little over 2 weeks ago, but I don't see any improvement with the spasm. My smile is now slightly crooked, but the doctor only injected 1/2 of what I really needed. I'm due for a follow up on the July 22 for more injection if needed. I'm really afraid I'll be more crooked and not sure if it will work at all.
I think a crooked smile is just what God gives us for going through what we do. No only is my smile crooked but before I started the new treatment plan the center line between my nose and top lip was diagonal. Not a great look but that's OK. I have never used botox so I can't comment at all on that. I have lost over 30 pounds because I can't eat properly about as much as I wish things were different for now my biggest concern is to keep the pain level down and make sure I take my meds every 6 hours. Take care.
Red, I realize you were not speaking towards this but you mentioned about Teflon pads slipping. Do you think or have you read anywhere about chiropractic manipulation of the skull after MVD "messing up" the MVD procedure. Possibly making the Teflon pads slip unintentionally? I ask because I had my first MVD procedure a year ago and have had chiropractic manipulation of the skull recently. I've noticed the more manipulation that occurred made my TN symptoms reappear and get worse. Do you think the chiropractic manipulation could be playing a role in the TN symptoms? I see my neurosurgeon (Dr. Linskey) next week for my 1 year checkup and will be bringing this up to him.
Jeanie
Richard A. "Red" Lawhern said:
While I respect your surgeon's desire to reassure you, I think he may have misspoken, however unintentionally. Complete facial numbness is a fairly common side effect from MVD (like maybe a quarter of all those in whom the operation is initially successful). While it wears off over a period of months in some patients, it seems to be permanent in others. It's not always clear what distinguishes patients in these two groups. But it seems plausible that longer lasting numbness may be related to more severe damage to the myelin layer of the Trigeminal nerve from the compression, or from "excessive" manipulatoin of the nerve during surgery. A lot of neurosurgeons consciously try to avoid pulling at the nerve during MVD, lifting it only enough to detect and then correct the vascular compressions which have affected it.
Hemifacial spasm is fairly common in TN patients, and appears to result from the same mechanism of action: arteries or veins compressing the 7th cranial nerve rather than the 5th. While Botox does help some patients with HFS, and is worth trying, it doesn't help others. I candidly doubt the statistics quoted. For type I TN, about 90% of MVD procedures are initially successful, and I've never seen numbers on Botox that approach anywhere near that level even for pain relief over three or four months. I'll investigate the link you provided, Tacocat.
Although MVD isn't a trivial operation, I've talked with maybe two or three hundred patients during the past 20 years who have had more than one MVD and been greatly helped by the second or subsequent procedures. I think the "track record" on numbers of MVDs is four, if I'm recalling correctly. And yes, some of these patients had two MVDs in a year -- in most cases to complete the decompression after a teflon pad slipped out of place, or to look for additional compressions not detected in the first procedure.
I hope this is constructive, Nina. Remember please that while I'm very experienced in the support of chronic facial pain patients, and moderately well read in medical literature, my technical training is in engineering and information mining, not medicine. I'm reporting to you what I've read and what other patients have told me. Feel free to print out and take this posting with you for detailed discussion with your neurosurgical team. They are your first and more authoritative resource.
Jeanie, I've never seen evidence for chiropractic adjustment being able to dislodge teflon pads left behind from an MVD. That said, however, if someone is introducing abrupt adjustments or movements of your cervical spine, then there is reason for caution. Many TN patients first present within a few days after a whiplash injury involving extension of the neck and disturbance to the brain stem above the spine. So there is a mechanical connection, particularly for abrupt twisting motions.
Jeanie said:
Red, I realize you were not speaking towards this but you mentioned about Teflon pads slipping. Do you think or have you read anywhere about chiropractic manipulation of the skull after MVD "messing up" the MVD procedure. Possibly making the Teflon pads slip unintentionally? I ask because I had my first MVD procedure a year ago and have had chiropractic manipulation of the skull recently. I've noticed the more manipulation that occurred made my TN symptoms reappear and get worse. Do you think the chiropractic manipulation could be playing a role in the TN symptoms? I see my neurosurgeon (Dr. Linskey) next week for my 1 year checkup and will be bringing this up to him.
Nina I am trying to contact you in regards to our similar stories with the divine encouragement before our mvds. But we are not yet "friends" on this site so I've requested to be friends. Your reply very much blessed me. I will keep you in prayer in regards to this post mvd hemofacial spasm diagnosis. I cannot imagine how tough this must be - yet the fact that you are on this site and reaching out is so essential to your well being. I'm thankful auto email notifications had been set up so I saw your comment. WOW Thank you for taking time to comment
I too developed hfs after my 1st mvd. Along with glossopharingial neuralgia. Mine didn’t result in pain until my mvd failed 1 1/2 years later. It was mostly annoying. However, when my mvd failed and my pain came back, the spasms would cause my tn to set off! There were lots of times when all three were going at once. The HFS’S ,tn, and glossopharingial neuralgia. Truly thought there was no way a human could live through that kind of pain!
When was your MVD and how long after did you start having HFS? Did/Do you feel nerve moving around your face and muscle contraction? What have you been doing to get relief?
I'm so sorry to hear you are experiencing all three horrible ordeals. Have you thought of having another MVD? I am seriously thinking of doing this.
Nina
TammyT said:
I too developed hfs after my 1st mvd. Along with glossopharingial neuralgia. Mine didn't result in pain until my mvd failed 1 1/2 years later. It was mostly annoying. However, when my mvd failed and my pain came back, the spasms would cause my tn to set off! There were lots of times when all three were going at once. The HFS'S ,tn, and glossopharingial neuralgia. Truly thought there was no way a human could live through that kind of pain!
Tammy, I am so sorry for your triple suffering. I hope that you are able to find the relief that you deserve and need. I have a glimmer of understanding of why you would feel that no human being could endure such pain.
Thank you all for this discussion thread. It has taught me a great deal.
Dr. John Tew is on staff at the Mayfield Clinic and has an international reputation in the field of HFS. He is also on the Hemifacial Spasm Association Medical Advisory Board. I thought that the Mayfield Clinic's site had the best diagnostic information; even the National Institutes of Health site lacked comprehensiveness. What Mayfield practices is collecting the patient's history and performing an MRI. Additionally, an electromyogram with a nerve conduction velocity study (to measure muscle and nerve electrical activity) may be done.
Janet
I suspect that anyone who has both TN and HFS would want to go to a hospital where both diseases can be addressed.
I have been using the LED light treatment for the past 5 days. I use it twice a day 14 minutes on the painful area as instructed by the manual. My facial nerves/muscles go crazy during the treatment. They move a lot and I'm not sure if that is a good or bad thing. I was hoping my facial pain will subside somewhat by now but it hasn't. Is this normal? How long did it take for you to feel improvement on pain?
The movement is normal. I found it to be a release of the lactic acid stored in the muscles from all of the spasms and tightening. I actually only use it for 6 minutes on each of the most affected areas. I usually rest then after the treatment. I use this with a small dose of prescribed diazepam which works as a muscle relaxer instead of an anti-spasmotic. I always wait until I hear the buzzing (the fan to dissipate heat) before I start treatment. I find it takes a few minutes after the treatment but my facial pain is greatly reduced-the numbness is still there but the spasm flare ups go away. What meds are you taking right now and how happy are you with the neurologist you are seeing? Wishing you the best.