she also had an infection in her gum treated with IV antibiotics. She has a previous diagnosis of trigeminal neuralgia and CRPS ( chronic regional pain syndrome). Her pain is dreadful. She asked the doctors to check her levels for b12 after us reading that this might be connected to her symptoms ….. they have not done any tests …. Does anyone have any experience with this with TGN and CRPS. I am on the site for myself also and regularly SI with B12 and am encouraging my daughter to seek this avenue of enquiry … she is 35 and suffering really badly but the medics don’t seem interested
Many thanks I would so appreciate your thoughts
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Delilahmy
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Thankyou Nackapan… her history is also very long in awaiting diagnosis also dystonia now and has been to pain clinic in Bath as resident to learn to manage her pain. She also has been having non epileptic seizures which are horrendous. She is at her wits end with pain …. She is on many medications which don’t even manage her pain…. It’s such a nightmare …..
I was diagnosed with trigeminal neuralgia, via an MRI, at the very same time that I found the b12 deficiency. It was a coincidence in timing. But a fruitful one. It had been going on on & off for over two years. Sometimes I would just sit up, rock and moan - outrageous pain.
It all disappeared right after my b12 loading doses. Like poof.
It tried to come again -not quite fully - but I had already made the decision to go to every other day injections, instead of just once a month at the doctor's office (cyanocobalamin here). And it never returned. (I did that for close to a year - don't have a set schedule these days)
A couple of notes -
*Trigeminal Neuralgia can go into remission periods. So I can never be 💯 certain the b12 shots are the reason it left (over three years now). But I am relatively sure. The timing is too bang on.
*Don't expect any neurologist, as crazy as this sounds, to know a thing about b12 deficiency/Pernicious Anemia. The one I saw thought I should eat more meat. And told those shadowing him that he did not have one patient with it. Of course he doesn't - they are way too busy masquerading as his MS, dementia & Trigeminal Neuralgia patients.
*Close to the end of the pain period the only thing that remotely soothed, and just soothed - pain was still there, was Vicks Vaporub along the nerve line.
If it came back for me I would not hesitate to do the surgery. There would be no way I would live with that pain nor deal with the effects of the needed nerve pills.
I am so sorry this is happening for your daughter. I can only imagine how helpless you must feel.
(If I have replied to you during another earlier inquiry, my apologies. Regardless it is good information to have out there.)
Thank you so much. Was never diagnosed with trigeminal neuralgia. I did however ever experience it.
I did figure out on my own that something was going on with my Trigeminal Nerve. This nerve is responsible for the dive reflex. I could lessen the pain with swimming. I would dive under often as I swam 1/2 mile. I could also put my face in cold water in a bowl and blow bubbles.
It tried to come again." I experienced what you are expressing.
It got worse when I started to inject B12. I hung in there and it started to go away. I expect this was caused by only injecting 1 mg every other day. It was caused by B12 decency. It did not go away completely until I gradually increased my B12 to .50 mg SC hydroxocabalamin 5 mg methylcobalamin/adenasolcobalamin three times a day SL and a B-complex. I also take Pyridoxal-5-Phosphate .25 mg liquid in water twice a day.
I still can tell it tries to come on again but that is happening less often.
I experienced what was dx as pseudo seizures I learned to tell when they were coming on and found a safe place and had them. Then would recover for three days with an increase of pain during that period.
Tenacity is your best friend. Take care of yourself as best you can. I believe that you will be successful eventually and your daughter will not suffer as she is now. It is a nightmare.
Thankyou Wizard you seem to have had similar pains and symptoms…. Such an eye opener to see connections to b12 that show improvements …. As the doctors have been asked and have not even done a test (although they said they would)?) my daughter might trial a test herself …. She feels she has nothing to loose and everything to gain … thwnkyou again for sharing your story … it’s helping her enormously to just hear some similarities which give her hope xx
hi again Litatamon…. Sorry for the short reply … yes I agree that it’s hard to find a neurologist with the knowledge …. Or a doctor. But there are so many symptoms with b12 deficiency that are neurological in their presentation ?? Why is this this not looked into. So much seemingly staring us in the face …my daughter has been through so many scans tests and this was never even discussed. Same for myself really and it’s proven to be invaluable to me …. I couldn’t do without it. If I had the energy I’d try to do more to help increase awareness. The nice guidelines are to treat with injections every day initially until symptoms subside then slowly reduce them watch for symptoms. the test ranges are soooo low and shouldn’t be the only determining factor as many patients are tested and within range…. And then not treated.
It is appalling and such a waste of our health care dollars (I am in Canada) when they look into a myriad of issues when so many can be one thing - b12 deficiency.
My own GP told mey eye issues that went away with loading doses were not b12. Insert sigh.
It was a documented symptom of b12 deficiency & even if it was not where is the common sense here? I had over thirty symptoms, many for years, and they suddenly disappear with supplementation (over 80% of them) but your medical brain can not figure out that connection. So ridiculous.
definately picked up the silent inserted sigh …. Did one myself. It beggars belief that doctors deny believing in the connection when it is a ‘nose on the face’ to those of us that are ironing out some devestating symptoms…. Gentle hugs x
Also want to note that I have had non-epileptic seizures, at one point pretty regularly.
When I figured out what they were by my own research I always assumed they were due to prolonged childhood abuse (not my parents - always feel the need to say that), as that was listed. And I stopped researching.
So strange - and interesting - to read that they are/were possibly connected to these issues at hand.
FYI. You can get a private blood test at a pharmacy/chemists in the UK. Haematology profiles: including full blood count, B12/Folate and Anaemia profile.
Thankyou and yes we are going to look at private testing… we were just hoping to get help from the doctor route as much as possible… which has not proved very successful. I think it’s the luck of the draw and some health care professionals are very knowledgeable but others are not …. And her health is now at such a low point we need to take action x I have helped as much as I can with my experience as a nurse and encourage her to look at these other options. Again thankyou for your help this is such a brilliant group xx
I did look through some of the results, but it can be much more difficult to do on a phone compared to a computer. Here are some articles I flagged. One downloaded as a pdf file, rather than opening in a browser, so anyone wanting to read that paper would need to know where on their device to look for downloads.
I have had some seizure like symptoms that doctors said where migraines. Mine were pressure just above left ear followed by not being able to work out words. Then sometimes white zigzag in my eye. Lasts 2 minutes. I also recently had pain in my gums on one side and pain in lip Does this trigeminal neuralgia? I did have ornathgenic surgery there some years ago. But the pain just started. Does TN go away with b12 treatment or.does patient have to get other treatment. Please let me know pain was awful yesterday just one day of it but it was bad and I had a high pain limit I once drove to the hospital with total broken wrist once. But I would take that over the pain yesterday.
hi Janeames … your symptoms could be migraines as suggested or TN …. All symptoms seem to cross over with various diagnosis… including my own symptoms … my daughters too … I have found evidence based research that suggests that TN symptoms are helped with b12 supplementation… for which the Nice guidelines are every day injections until symptoms subside then every other day then reduce if tolerated. I am trying to help my daughter deal with her pain and we are going to do injections as seems to be all pointing to this avenue. I myself inject and have found it has been a life changer. I am not offering medical recommendations although I am stating what I have found helpful for me. I have researched and found evidence based articles and followed nice guidelines In my course of self treatment. I am a nurse although now retired ….I retired on ill health hence now looking for a needle in a haystack. I also was low vit D so now take vit D also . Good luck x
ps also see reply above from
Wiscguy in this thread he has included some great links to b12 and TN treatment
Also look at Sally Patcholock YouTube I found this really helpful
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