There are some nights where it feels as if there is a hot searing knife being pushed/pulled out of my cheek, I just cannot sleep for more than 4 hours - any tips/guidance/advice is appreciated?
Sorry, I do not have any answers to help with this awful problem you have. I suggest you put key words in the search box at the top of the page on the right as I remember this has been the subject of many past discussions. Many will pop up for you to read and I truly hope there is something there to help you.
Jackie
Albee - My pain seems worse at night too. Am wondering if it has something to do with pressure on the nerve when lying down. I find a hot gel pack helps and also I take one 1 mg. Ativan which seems to help me sleep. I can deal with the burning and aching, but when the nerve spasms it is incredibly painful. Also, I have used baby 'Orajel' inside my upper lip. It numbs for awhile, but needs to be reapplied every once in awhile. This may not be of much help, but thought I would share for what it is worth. Do hope it settles down. I know what it feels like only too well!
Christine
I rarely have pain at night, however, my doctor prescribed 1 mg of lorazepram for night sleep. I was not sleeping because I was so scared the pain would start. I don't know if this is helping with the pain, I do know that I sleep, and sleep really well.
Down side is I am a walking pharmacy.
My pain always worsens at night. I dont sleep at all. I have a bunch of pillows set up behind me...and Im literally just sitting up the entire night. The pain is still there.
I heard that our nerves go into a relaxation mode and the purpose is to unwind and rest....but the pain intensifies because they cant do that.
Its like clockwork at 11pm my pain starts up..so I feel your pain!
Hi Saeeda! I also have the same problem. Just when one needs to sleep the torment begins! I also use a lot of pillows. The one comfort I have is a small, hot gel pack which I can place on my cheek. This seems to settle the nerve spasms somewhat. Think perhaps when we lie down, there is more pressure on the affected areas and this causes more pain and spasm. Just a theory though. ( - Wonder if there is any way of sleeping standing up? LOL!)
Saeeda Islam said:
My pain always worsens at night. I dont sleep at all. I have a bunch of pillows set up behind me...and Im literally just sitting up the entire night. The pain is still there.
I heard that our nerves go into a relaxation mode and the purpose is to unwind and rest....but the pain intensifies because they cant do that.
Its like clockwork at 11pm my pain starts up..so I feel your pain!
ok there seems to be a few diff types of gel packs :
http://arthritis.about.com/od/assistivedevicesgadgets/tp/gelpacks.htm
Do you have any recommendation?
Hi Albee,
The one I use is a 'reusable hot & cold compress by 'Formedica'. Very simple. About 12" long by 6" wide. Comes with a little cover which can be removed. This compress can be boiled, microwaved or frozen and always stays flexible. I find the size convenient as it can be easily moved around. Also inexpensive. I find heat a great comfort.
Albee said:
ok there seems to be a few diff types of gel packs :
http://arthritis.about.com/od/assistivedevicesgadgets/tp/gelpacks.htm
Do you have any recommendation?
Awesome! I am going to order one of these straight away.
I find that diphenhydramine (Benadryl) can be very helpful when I'm having bouts of insomnia. Also, it's available over the counter. I always get diphenhydramine, not Benadryl because I don't need the extra stuff Benadryl has. Next time you see your doctor you should mention that sometimes you have trouble sleeping, perhaps he/she will give you something that will help.
Hello Albee! Thanks so much for your welcome and e-mail!
Know just where you are coming from. I have the same feelings. Sharp, stabbing, totally excruciating pain when a flare-up begins and then continuous aching and burning beside the nose, upper lip and especially the cheek with periods of 'spasming'. Amazing how such a small part of a nerve can cause this amount of pain! With this flare-up, for some reason I find it has been worse at night just when I want to get some sleep. Last night I took a 1 mg. Ativan and that helped immensely. Finally slept through without pain. Ativan itself doesn't kill all the discomfort, but as it is a muscle relaxant, it does help a bit to control the spasming - at least I have found it so. Also, I don't have any side effects with it. Does make you a little 'laid back' during the day, but with the low dosage, I can tolerate it better than any other drug. Docs. don't really like to prescribe it as it tends to be quite addictive, but I've had Ativan over the years and I am careful how I use it. I swear by it. This might help you. At least it relaxes you so you are not all tensed up waiting for the next attack and it does help you to get a good night's rest! - Here's hoping that in the coming New Year there will be more breakthroughs to help the sufferers of this most devastating neuralgia.
Hope you have a good Xmas break Albee. Mine is going to be QUIET. Will probably spend the day with two of my sons, daughter-in-law and two little grandsons.
Hugs,
Christine
I am the opposite with pillows, I have to have only one feather pillow, to be able to get comfortable without my face hurting, more pillow, more pressure on my face.
I have been doing SO research on TN lately that my head is spinning. It would appear that microvascular decompression is the surgical treatment of choice, but again, it isn't guaranteed to work for everyone. In spite of the radiation, I would still consider the Gamma Knife because it is non-invasive and can be done on an out-patient basis. We are very fortunate to have an exceptional hospital here with good neurosurgeons and that makes a difference. Before considering surgery though, I am thinking of going to a chiropractor, as I have a severely degenerated disc in my neck and pressure on my neck can trigger the pain in my cheek. Am wondering how many other folks have considered a neck problem. The 5th cranial nerve runs up the back of the neck and the degenerated disc might be pinching it. I had an MRI done which didn't show anything, but of course, they didn't take a look at my neck at that time. TN sure is a complex problem.
elstep said:
I am the opposite with pillows, I have to have only one feather pillow, to be able to get comfortable without my face hurting, more pillow, more pressure on my face.
Christine, Within 6 weeks of the TN Attack, I also for the first time in my life started to suffer with neck ache which crept up to the back of my head.
Travelling in the car was as a passenger was very difficult as i would find find my head was being shaken and needed a pillow to support it. Also if i linked arms with my husband and he moved his hand to make a gesture, i felt the impact in my body and had to ask him to stop moving his hand. This was not continues but came on me if I was stressed or tired but at times i woke up with it. Also if i tried to walk up a hill back to home or tried to exercise this also brought it on.
My doctor thought it was tension in my neck and head muscles. My rheumy (as i have an autoimmune problem) thought it may be muscle related and has recommended I see a physcio which I am planning to do in January.
My neuro thought it was migraines, but i did not explain it fully to him as by that time the neck was much better and I did not think it was related to the TN but now I wonder.
My neck gradually started to improve and my back of headaches stopped. I did wonder at the time if i had occipital neurolgia, but I did not have any stabbing pains there, just a bad ache.
One thing I must mention is mine would ease if I laid down flat and rested.
I still feel a little delicate in the car and still prefer to link with the opposite arm with my husband, but the neck is so much better, I am able to now walk up the hill to home without the ache coming on, but in the morning my back of head still feels sensitive on the pillow and my temples hurt if i lay on my side. I can only ever use one pillow now, as any more and i feel the stress on the back of my neck.
Like you I do not know what is related to TN and what is not. What is the difference between a Chiropractor and a Physiotherapist?
Hi Elstep!
Put bluntly, a Physiotherapist and a Chiropractor do essentially the same thing as far as I can see. Physiotherapists are accepted by the Medical Community and Chiropractors are not, at least up until a few years ago. There used to be a big difference of opinion between doctors and chiropractors - whether or not this was due to the 'competition' between conventional health practices and chiropractic manipulation I do not know. I have a great chiropractor here where I live. She is very well trained, friendly and has helped my neck pain a lot. I originally went to her for help with the TN. About thirty years ago after the birth of my youngest son, I had physiotherapy for my neck which didn't really help a great deal. I regret not mentioning my neck problem at the time I saw the neurologist, but it just hadn't occurred to me. I'll definitely mention it next time. Just to add to my problem, I had shingles in the past which affected the course of three nerves in my back. Also had a bilateral jaw osteotomy done when I was thirty to correct an open bite deformity. Any one, or all of these factors could be contributing to my TN. From what you have told me here, I would think that a chiroprator or physiotherapist could help you. On other TN sites I have read several comments where folks have been to chiropractors who have helped them with their pain. As that 5th cranial nerve that leads to the trigeminal nerve could get pinched on its way up the neck it would seem reasonable to relieve the tension in the neck. The pain we feel in our faces, head, etc. is a radiation of pain, in effect, the problem is not coming from our face although it feels like it, but from the part of the trigeminal nerve that has been irritated or injured. Certainly would talk to your family doctor about physio or chiropractic manipulation. Lots of luck. Have a good Xmas and a New Year with 'good happenings' :)
Hugs,
Christine
Christine, Within 6 weeks of the TN Attack, I also for the first time in my life started to suffer with neck ache which crept up to the back of my head.
Travelling in the car was as a passenger was very difficult as i would find find my head was being shaken and needed a pillow to support it. Also if i linked arms with my husband and he moved his hand to make a gesture, i felt the impact in my body and had to ask him to stop moving his hand. This was not continues but came on me if I was stressed or tired but at times i woke up with it. Also if i tried to walk up a hill back to home or tried to exercise this also brought it on.
My doctor thought it was tension in my neck and head muscles. My rheumy (as i have an autoimmune problem) thought it may be muscle related and has recommended I see a physcio which I am planning to do in January.
My neuro thought it was migraines, but i did not explain it fully to him as by that time the neck was much better and I did not think it was related to the TN but now I wonder.
My neck gradually started to improve and my back of headaches stopped. I did wonder at the time if i had occipital neurolgia, but I did not have any stabbing pains there, just a bad ache.
One thing I must mention is mine would ease if I laid down flat and rested.
I still feel a little delicate in the car and still prefer to link with the opposite arm with my husband, but the neck is so much better, I am able to now walk up the hill to home without the ache coming on, but in the morning my back of head still feels sensitive on the pillow and my temples hurt if i lay on my side. I can only ever use one pillow now, as any more and i feel the stress on the back of my neck.
Like you I do not know what is related to TN and what is not. What is the difference between a Chiropractor and a Physiotherapist?
Hi Christine
I had an underbite, I had it partiely corrected by wearing a brace to push my upper teeth forward. My teeth now meet edge to edge but my top teeth cannot over lap my lower jaw, like they do with most people.
I feel clenching my teeth is a trigger for my TN and I did wonder if my bite contributed to all of this?
When I have mild ache I do stretches with my jaw, and it seems to help.
Christine,
Where are you located? I am in southeastern PA - I am lookin for a good Neurologist who understands TN and is will manage my care as opposed to sending me back to my Primary Care Physician who really is not well versed in the disease.
Thanks,
Donna
Christine said:
I have been doing SO research on TN lately that my head is spinning. It would appear that microvascular decompression is the surgical treatment of choice, but again, it isn't guaranteed to work for everyone. In spite of the radiation, I would still consider the Gamma Knife because it is non-invasive and can be done on an out-patient basis. We are very fortunate to have an exceptional hospital here with good neurosurgeons and that makes a difference. Before considering surgery though, I am thinking of going to a chiropractor, as I have a severely degenerated disc in my neck and pressure on my neck can trigger the pain in my cheek. Am wondering how many other folks have considered a neck problem. The 5th cranial nerve runs up the back of the neck and the degenerated disc might be pinching it. I had an MRI done which didn't show anything, but of course, they didn't take a look at my neck at that time. TN sure is a complex problem.
elstep said:I am the opposite with pillows, I have to have only one feather pillow, to be able to get comfortable without my face hurting, more pillow, more pressure on my face.
Donna - I live near Sherbrooke, Quebec, about thirty miles from the Vermont border. We have an excellent University Hospital here (Sherbrooke University Hospital) and some good neurologists. This center is one of the few in North America that has a 'Gamma Knife'. My neurologist told me that they had a patient come all the way from England to get relief from his TN pain. They did the operation in Sherbrooke and with good results.
Yes, Elstep! That wouldn't surprise me at all. I have a neighbour who had a similar operation for an underbite. Although she does not (yet) have symptoms of TN, she does admit to having some pain on occasion in that area. I sometimes hear quite a loud 'crack' from the right side of my jaw when I am moving it, so wonder if the TN is related to a nerve been pinched due to the 'adjusted' alignment of my lower jaw. It's a thought. As I mentioned, I had an MRI, but that was just of my head, not my neck or jaw. The plot thickens!
elstep said:
Hi Christine
I had an underbite, I had it partiely corrected by wearing a brace to push my upper teeth forward. My teeth now meet edge to edge but my top teeth cannot over lap my lower jaw, like they do with most people.
I feel clenching my teeth is a trigger for my TN and I did wonder if my bite contributed to all of this?
When I have mild ache I do stretches with my jaw, and it seems to help.
Thanks Christine,
I am near the University of Pennsylvania in Phila, PA and we also have a Gamma Knife; I was hoping you were in the same area and could recommend a Neurologist who stays with their TN patients as opposed to returning them to their PCP for follow up care.
Christine said:
Donna - I live near Sherbrooke, Quebec, about thirty miles from the Vermont border. We have an excellent University Hospital here (Sherbrooke University Hospital) and some good neurologists. This center is one of the few in North America that has a 'Gamma Knife'. My neurologist told me that they had a patient come all the way from England to get relief from his TN pain. They did the operation in Sherbrooke and with good results.