I have talked to two TN sufferers in my area who have had MVD surgery (both successful surgeries) and have never had their B12 levels checked. When I mentioned that mine was low, one of them said she just found out hers was low. She had surgery 7 years ago! I mentioned that when your B12 is low it could mean that there is an underlying issue; for example Celiac's Disease (which runs in my family). She just called me tonight and guess what she has been diagnosed with Celiac's disease.
Please if you haven't had your B12 checked it is a simple blood test and I definitely recommend getting it done.
Why aren't doctors automatically checking this when people are diagnosed with Trigeminal Neuralgia or better yet on a periodic basis?
My sister has Chrone's disease and she has had B12 shots for years. My mother has B12 shots but she is 74 and has diabetes. My sister died of pancreatic cancer at 39 . . . was hers low too?
Thanks for the reminder, I will make sure my GP gets this checked when I have my next blood test. I used to be vegan (now vegetarian) and always had my B12 checked, I sort of let it go when my diet became less restrictive.
I do have vitamin D shots, my levels are hideously low.
I am very sorry you lost your sister at such a young age.
I am a gastric bypass patient and we have to keep a very strict eye on our B-12 levels. The damage this vitamin, when it gets very low, does to the nervous system is shocking. Just yesterday my neurologist stressed to me to keep my vitamins, especially calcium, magnesium and B-12 on the up and up in order to further better the outcome of my treatment.
Vitamin D, especially if the levels are very low, can cause neurological symptoms. My mother's hands vibrate and get very cold because of this and the doctor's continue to try to get her levels up.
My iron was so low once my ferritin was at 9 (regular is 70-90). Could vitamin deficiencies be contributing to my sudden onset of neurological pathologies? I wouldn't doubt it one bit.
Collete, you seem to be finding a pattern in your family for sure! If the doctors wont bring it up maybe, by educating our community, we can help ourselves and encourage people to be proactive when they approach the doctor. Nutrients feed our bodies and without them our bodies begin to die. Nerves depend on those nutrients too.
A lot to think on and again, thanks for bringing the topic up. Now I am going to go take my vitamins =P
Sorry to hear about your additional illness. A deficiency of B12 caused the myelin sheath (protective layer around nerve) is a major contributor to TN. If you are low, taking vitamins sometimes is not enough, you need to get injections. It is best to have a doctor manage all of your levels especially considering your abdomen issues. Yes, definitely a pattern. I forgot to mention my other sister and niece have Celiac's disease which is also a result of B12 deficiency.
I have always said we have to be our own advocates but this site helps to take the load off because there are so many people that understand and who are so caring and willing to help.
Hugs,
Collette
Coqi said:
I am so glad you bring this up!
I am a gastric bypass patient and we have to keep a very strict eye on our B-12 levels. The damage this vitamin, when it gets very low, does to the nervous system is shocking. Just yesterday my neurologist stressed to me to keep my vitamins, especially calcium, magnesium and B-12 on the up and up in order to further better the outcome of my treatment.
Vitamin D, especially if the levels are very low, can cause neurological symptoms. My mother's hands vibrate and get very cold because of this and the doctor's continue to try to get her levels up.
My iron was so low once my ferritin was at 9 (regular is 70-90). Could vitamin deficiencies be contributing to my sudden onset of neurological pathologies? I wouldn't doubt it one bit.
Collete, you seem to be finding a pattern in your family for sure! If the doctors wont bring it up maybe, by educating our community, we can help ourselves and encourage people to be proactive when they approach the doctor. Nutrients feed our bodies and without them our bodies begin to die. Nerves depend on those nutrients too.
A lot to think on and again, thanks for bringing the topic up. Now I am going to go take my vitamins =P
Silly me I forgot to mention this, most of you probably already know this but for those of you that don't, a deficiency of B12 causes the myelin sheath to deteriorate. The myelin sheath is what surrounds and protects the nerves.
Mine is low, several years ago the Dr. gave me a B-12 shot, I was looking for the energy they said it would give me.
As a matter of fact I was real excited cause I have always has a lack of energy. That evening I got really nauseated
didn't throw up but had the bucket ready. I was suppose to get a B-12 shot once a month but needless to say, that was my last. Years went by then last year I decided to take B-complex vitamin cause they are good for your nerves.
I actually had forgotten about the incident with the B-12 shot until that evening when after taking the pills, I think it was just one maybe two days, again I got really nauseated and then I remembered the B-12 shot incident. So, no more of those either. Of course the Dr. thinks I'm nuts says that's not possible but I'm not taking any more.
Silly me I forgot to mention this, most of you probably already know this but for those of you that don't, a deficiency of B12 causes the myelin sheath to deteriorate. The myelin sheath is what surrounds and protects the nerves.
That doesn't sound good Maddy. I have read that there are 2 different types of B12 shots . . . might want to talk to your doctor again.
Maddy said:
Mine is low, several years ago the Dr. gave me a B-12 shot, I was looking for the energy they said it would give me.
As a matter of fact I was real excited cause I have always has a lack of energy. That evening I got really nauseated
didn't throw up but had the bucket ready. I was suppose to get a B-12 shot once a month but needless to say, that was my last. Years went by then last year I decided to take B-complex vitamin cause they are good for your nerves.
I actually had forgotten about the incident with the B-12 shot until that evening when after taking the pills, I think it was just one maybe two days, again I got really nauseated and then I remembered the B-12 shot incident. So, no more of those either. Of course the Dr. thinks I'm nuts says that's not possible but I'm not taking any more.
You know it's funny this came up. When I had my TN attack 6 years ago, the neuro told me I was lacking in B12 and gave me a super strenth b12 vitamin to take and it literally lasted about 2 weeks and the pain was gone and I had no more pain for about 5 years. I would get a ache here and there and so continued taking the b12 vitamins I could get at the store. I even got my mom to take them. The energy from them was great! Of course I kept finding bottles with larger and larger dosage and even got some sublingual ones. That's when this current round started. I got slammed this time with pain and NOTHING seems to be helping. My neuro told me that too much can also have a devesatating effect! I quit taking them altogether. Now I am afraid to try them again as I don't want anymore problems.
Miss Maddy, my sister in law could not take them because they made her extremely nauseas as well. I think it is just in your make up whether you can take them. It is NOT impossible.
I would have your doctor check your levels again. I have also heard that certain types of vitamin B can cause more pain. It is also important to know that a lack of B12 is a sign of malnutrition which depending on your diet means an underlying issue. I would investigate and discuss with your GP. I think that just treating TN with drugs is not enough, we need to get to the root of what is causing it in order to prevent it and possibly treat it.
tinah276 said:
You know it's funny this came up. When I had my TN attack 6 years ago, the neuro told me I was lacking in B12 and gave me a super strenth b12 vitamin to take and it literally lasted about 2 weeks and the pain was gone and I had no more pain for about 5 years. I would get a ache here and there and so continued taking the b12 vitamins I could get at the store. I even got my mom to take them. The energy from them was great! Of course I kept finding bottles with larger and larger dosage and even got some sublingual ones. That's when this current round started. I got slammed this time with pain and NOTHING seems to be helping. My neuro told me that too much can also have a devesatating effect! I quit taking them altogether. Now I am afraid to try them again as I don't want anymore problems.
Miss Maddy, my sister in law could not take them because they made her extremely nauseas as well. I think it is just in your make up whether you can take them. It is NOT impossible.
I figure if the Vitamin B-12 shot and then the Vitamin B- Complex pills did that to me I don't want to do that again.
Really don't like feeling like that.
xxOxx
collette said:
That doesn't sound good Maddy. I have read that there are 2 different types of B12 shots . . . might want to talk to your doctor again.
Maddy said:
Mine is low, several years ago the Dr. gave me a B-12 shot, I was looking for the energy they said it would give me.
As a matter of fact I was real excited cause I have always has a lack of energy. That evening I got really nauseated
didn't throw up but had the bucket ready. I was suppose to get a B-12 shot once a month but needless to say, that was my last. Years went by then last year I decided to take B-complex vitamin cause they are good for your nerves.
I actually had forgotten about the incident with the B-12 shot until that evening when after taking the pills, I think it was just one maybe two days, again I got really nauseated and then I remembered the B-12 shot incident. So, no more of those either. Of course the Dr. thinks I'm nuts says that's not possible but I'm not taking any more.
I think Vit B plays a role in this whole TN thing. I always have stomach problems with vitamins, so I found a liquid multi that works great for me. I had to assume that my intestinal tract was having problems with vitamin absorbtion so I got a B12 supplement that you stick under your tongue to be sure it got into the blood stream. Two nights this week I did not take it and my sleep pattern changed. So, last night I took it again - usually right after dinner - and I slept great and my normal hours. I had to take B12 shots when I was in second grade for stomach ulcers. I have always wondered if a lifetime malabsorbtion of B vitamins caused this. I am definitely having my B12 checked on my next blood test.
You SLEPT better! Oh my goodness, I have the worst insomnia. I am gonna start taking it again, maybe in lower doses. I would do anything to sleep thru the night!
My diet is actually pretty balanced. We have 5 children and I am a stickler for eating right. Not so much as organicly, but we have a meat, starch, vegetable at each meal and snacks are usually a bowl of cereal. They think they are getting something sugary (and they are), but it's also whole grain. We are on weight watchers too so I cook very low fat. I don't think it is so much malnutrition as it is malabsorbtion.
You are right about the malabsorption. Deficiency of B12 is common in 3rd world countries because of malnutrition, but North Americans do not suffer from malnutrition that is why we need to identify why we are not absorbing the nutrients we are getting.
Wow, I did not know b12 would help with sleeping. Good to know:)
tinah276 said:
You SLEPT better! Oh my goodness, I have the worst insomnia. I am gonna start taking it again, maybe in lower doses. I would do anything to sleep thru the night!
My diet is actually pretty balanced. We have 5 children and I am a stickler for eating right. Not so much as organicly, but we have a meat, starch, vegetable at each meal and snacks are usually a bowl of cereal. They think they are getting something sugary (and they are), but it's also whole grain. We are on weight watchers too so I cook very low fat. I don't think it is so much malnutrition as it is malabsorbtion.
Since 2008 while in grad school, I eat B12 sublinguals like candy! Sleep disorder keeps me up all night, supposed to function like others in the day! They even taste good!
i always wondered that too i also had a very low vitamin d level. dr was trying to treat me for fibromyalgia and here my d was super low. i read where if on pain meds it can drain your d and i was inside so much with pain i was starving for some sunshine for sure
. so blood work is important with all this for sure. i had stomach problems very young too. had an ulcer in my early 20's. maybe high acidic has something to do with affecting the nerves???
D McGinnis said:
I think Vit B plays a role in this whole TN thing. I always have stomach problems with vitamins, so I found a liquid multi that works great for me. I had to assume that my intestinal tract was having problems with vitamin absorbtion so I got a B12 supplement that you stick under your tongue to be sure it got into the blood stream. Two nights this week I did not take it and my sleep pattern changed. So, last night I took it again - usually right after dinner - and I slept great and my normal hours. I had to take B12 shots when I was in second grade for stomach ulcers. I have always wondered if a lifetime malabsorbtion of B vitamins caused this. I am definitely having my B12 checked on my next blood test.
A lady in my area was treated with TN by lowering her acidic levels through a herbalist. I don't know the details but it is worth a try.
julie said:
i always wondered that too i also had a very low vitamin d level. dr was trying to treat me for fibromyalgia and here my d was super low. i read where if on pain meds it can drain your d and i was inside so much with pain i was starving for some sunshine for sure
. so blood work is important with all this for sure. i had stomach problems very young too. had an ulcer in my early 20's. maybe high acidic has something to do with affecting the nerves???
D McGinnis said:
I think Vit B plays a role in this whole TN thing. I always have stomach problems with vitamins, so I found a liquid multi that works great for me. I had to assume that my intestinal tract was having problems with vitamin absorbtion so I got a B12 supplement that you stick under your tongue to be sure it got into the blood stream. Two nights this week I did not take it and my sleep pattern changed. So, last night I took it again - usually right after dinner - and I slept great and my normal hours. I had to take B12 shots when I was in second grade for stomach ulcers. I have always wondered if a lifetime malabsorbtion of B vitamins caused this. I am definitely having my B12 checked on my next blood test.
Luckily, B12 is one of those vitamins that won't hurt you if you take a lot. about 10 years ago I kept falling down, having really bad muscle spasms. My arm would come up and hit me in the head while I was sleeping. After the first month on b12 the symptoms went away. I still have mild neuropathy in my feet. It could have been so much worse. I now have to have the shots as the pills no longer work.
I'd like to add that it's better to take just b12 without b6 because b6 can mask the symptoms of b12 deficiency. My body can not absorb nor store b12 in my intestines which is why I need the shots. For those of you who get sick on shots, try the sublingual tablets. They work well but believe me you do not want to have what I had. People used to die from it and now it can cause permanent neurologic effects if not treated soon enough. For example, I was outside and took one step and BOTH my ankles gave out. It was unreal and I had to crawl to my house. I was falling down stairs and my toes were constantly wiggling. I have to have shots for the rest of my life but I actually look forward to it. The week before my shot I'm dragging.
I don't know if it the deficiency was a contributing factor of TN but I doubt it. Perhaps the myelin sheath was damaged permanently. Remember B6 can mask the signs of a b12 problem. So get JUST the b12 and not the bcomplex pills. You also need a LARGE dosage to get just the few micrograms into your body and the Bcomlex pills do not have a large enough dose. FYI
After I was diagnosed with TN and then had an allergic reaction to Tegretol that messed up my liver function, my family doctor found out I was low in B12. Maybe that's what caused my TN or maybe I went low because of my liver problem. I don't know but she ordered some shots for me and they worked like magic on my energy levels. She tested again a few months later and my levels were OK but I continue to take it sublingual, about 1000mcg every few days or less - when I remember. I seem to be in remission and one of the things I attribute that to is the B12. If I go a few weeks without it, the flurries definitely increase in intensity. Red said in the chat room a few days ago that B12 does NOT have a role in re-myelinating the nerve sheath.
Red was right it cannot re-myelinating the nerve sheath, but it is essential for the health of the myelin sheath. My neuro told me that because I had problems with b12 there was permanent damage but thankfully it was very mild neuropathy in my feet. My feet can't feel the cold. That's where the symptoms started.
Since TN is a neurological problem, although it's more of a artery wearing on the myelin sheath, it can't hurt to have your b12, especially as you get older. I do wonder if would make more of a difference in type 2 TN or MS and TN, but that's just conjecture. Or perhaps the myelin wouldn't have "shorted" out as soon as it did, (I'm 44). But again just conjecture.