That's great, Elstep, good luck to you - long may it continue. Can I ask if something happened that may have caused the TN, like dentistry or a road accident or a fall or something? It just seems so odd that you got it all at once and then it all went away. Was it maybe even a diet or a period of bereavement or something else that was out of the norm? Do you have any ideas?
elstep said:
Been almost 3 years since my TN1 attack live in fear of it returning one day 2 years since TN2 used to bother me at night and 18 months off Pred. Was scared of coming off meds for TN1 but GP and consultant both agreed that its possible for it to be a one off attack. I do hope so. X
I had cosmetic surgery on a thread vein running from my upper lip. The Surgeon zapped it with a laser (it was just a 5 minute procedure) but it made me scream as my nerve was affected, but then all was ok and I walked away feeling fine.
Within 48 hours I began to get shocks up my face from a tooth which was just behind the part of lip which had been zapped. After a week of putting up with the increasing painful shocks I went to a Dr and was diax with TN1.
TN2 developed after a few months.
GCA was diax 6 weeks after the TN1 began.
Because some of my symptoms crossed over some doctors thought I had only one of these conditions others agreed i had both but thought the conditions were not related others disagreed and thought one had triggered the other, although they are not text booked linked.
Most did not think the laser was the cause of the TN1.
There are many doctors in our practise and therefore each time I was at the GPs I asked each one their opinion and received lots of various opinions!
My own thoughts are the laser triggered the TN1 (thankfully the meds calmed the nerve down) I think my nerve suffered mild trauma and because of this TN2 developed.
I also think I was so worried and blamed myself so much that I was going to live a lifetime of pain because of my vanity (although my TN1 stopped I was so worried the shocks would begin again) that I may have triggered the GCA myself with worry.
Well, I have to say I'm with you. The fact that you had the laser treatment, which hurt disproportionately, and then the problems all start? Absolutely it was the laser surgery. It sounds like the doctors are all 'protecting their own' by saying it wasn't, even if he is a cosmetic surgeon.
I imagine you did feel terrible guilt, thinking you might have brought it on yourself. You need to remember it was the doctor who screwed it up, not you. I suppose it's too late to sue now? More's the pity...
I could never prove it was the laser and doctors have explained that a laser could never cause such a problem but one of my GPs explained the upper lip is a very sensitive area and the power of the laser could have 'shaken' my nerve and caused the TN1. I am hoping this is correct as it should mean it will be a one off experience.
That side of my face remained very sensitive at night and I was unable to lay on my side and my glasses made my ear to eye ache, this lasted for a year but all is well now and I feel that the nerve is now fully healed.
My GCA took just under 2 years to go into remission as its an auto immune problem they say its partly genetic partly environmental but a shock like bereavement can also bring it on.
Do you think the shock of reading all that TN involves and feeling I was responsible for damaging myself in such a way could have triggered the GCA in the same way as suffering a bereavement?
I am a shift worker and everyone who I have met on the GCA forum who are my age with GCA is also a shift worker all our shifts include working nights so i also think shift work may be a trigger.
HI Elstep, your GP is absolutely spot on. I once had an electrolysis machine to remove hair from my face (I had black hair before I became a silver fox!). It was fine on stray hairs on the chin, but on my upper lip it was absolutely unusable. I tried many times because it was what I had bought the bloody thing for, but it felt like someone had stuck a needle right into the nerve of my teeth, oddly enough. How weird that these two things should come together - I had forgotten that. So yes, he's absolutely right, and all the more reason to believe it was the laser, in my opinion.
I think this is great news for you, because I do believe your GP could be right, this may well be a one-off for you, which is fabulous news - I sincerely hope that's the case. I think what you should hang onto is that you have a causative reason. With the exception of those people who have dental related TN, most TN sufferers don't have a cause so there's nothing to treat and no way to explain it, but if I was you I would hang onto the laser idea and gear all my thinking towards that being the cause, encourage your body to heal it fully and that way you'll stand the best chance of coming out unscathed.
And absolutely your upset at getting TN could trigger the GCA - TN is a bereavement. Between the medications and the way TN impacts on your life, your whole idea of yourself and all your plans are changed. It's like a little, and sometimes not so little, death. Realising that your TN probably is a one-off thing is probably the best thing you can do for the GCA. Beat it with optimism!
And how very interesting about the night shifts. You should totally look into that! No, seriously, that sounds like a good place to start. Maybe a new job is in order, or at least a change in shifts. Perhaps it's messing with your biological clock that's contributing or providing the environmental factor/s. You're not chronically tired, are you? Lots of night shift workers never adapt fully. Or perhaps it's a Vitamin D problem. Have you looked into that?
I did belong to a forum for GCA and they recommended you ask your GP for a Vit D test, but I never did. My GP seemed reluctant to agree to anything which involved cost. He did agree to a DEXA scan to see if the steroids had caused me any harm and to be honest I wasnt brave enough to ask for anything else! Another theory I had was that I may have had grumbling GCA at the time of having the laser and this may have made my face extra sensitive and resulting in TN1, who knows? Im just very very grateful not be suffering any longer as I will never forget the pain that TN1 brought. xx
Hi Elstep, yeah, I've seen Vitamin D deficiency bandied about all over the place as a potential problem. It pops up on the B12 deficiency forum and on the coeliac forum I belong to. Apparently it's getting very common and seems to go hand-in-hand with autoimmune diseases. My doc and me have had so many fights recently I feel very nervous asking him to test me for it, but I might work up the courage and get him to do a nutritional panel, just to be on the safe side and put the malabsorption thing to rest.
The grumbling GCA certainly sounds perfectly plausible, but the most important thing is you have everything in remission currently. I've just dropped another Gabapentin tablet today, so that's me down to 400mg (and 600mg Tegretol) so we'll see how well my B12 holds up against that. Fingers crossed it all works out. I would be SO glad to just lose the Gabapentin - even that would be a big improvement and let me feel more like myself. Here's hoping....
elstep said:
Hi TWWTET
I did belong to a forum for GCA and they recommended you ask your GP for a Vit D test, but I never did. My GP seemed reluctant to agree to anything which involved cost. He did agree to a DEXA scan to see if the steroids had caused me any harm and to be honest I wasnt brave enough to ask for anything else! Another theory I had was that I may have had grumbling GCA at the time of having the laser and this may have made my face extra sensitive and resulting in TN1, who knows? Im just very very grateful not be suffering any longer as I will never forget the pain that TN1 brought. xx
I have Ben suffering w/TN for a year I am now in remission & off meds. I had acupuncture and it helped get off the meds. then remission. I did have pain again I went again to acupuncture and helped the pain go away again. So for now I pray that I will continue to be pain free. I would like to figure a more permanent solution.
Hi Ernestine, that's very interesting. Did acupuncture put you into remission then? Or was remission already happening when you tried acupuncture?
Ernestine said:
I have Ben suffering w/TN for a year I am now in remission & off meds. I had acupuncture and it helped get off the meds. then remission. I did have pain again I went again to acupuncture and helped the pain go away again. So for now I pray that I will continue to be pain free. I would like to figure a more permanent solution.
Woman with Electric Teeth - So, getting back to you with those test results. My B12 is back to normal but I am to continue taking my supplements. My Vitamin D is also back to normal, which was also low, but I am to continue my supplements. As for any Lupus related testing, he only looked at my blood inflammation levels, all of which are normal. However, my research suggests that many Lupus patients have normal blood inflammation levels but that many doctor's will not give an actual diagnosis positive inflammation levels. Yesterday, I could barely get out of bed because my joints hurt so bad. They rarely swell or get warm but they HURT and are getting worse. In the case of my daughter, her joints swell to double their size when she is in a flare up, especially her knees and elbows. I am also trying to figure out how to get doctor's to listen. After all, we know our bodies better than anyone else. WE know how we feel, WE know what we are feeling and how it is impacting our daily lives! You also mentioned that you don't know enough symptoms for Lupus. Do you have any idea how many symptoms are associated with autoimmune disease? Something made you wonder. I had never even considered it until my daughter was diagnosed. There is some evidence to suggest that there is a relationship between TN and Lupus as well as some other autoimmune diseases.
Every night when I lay down and my teeth get started on one of their crazy spells, I think of you. I could not have described it better: Woman with the electric teeth!
Cathy in MD
Woman with the electric teeth said:
Hi Cathy. We certainly have a couple of things in common - gallbladder disease and Gerd, as well as TN. I've had the latter for fifteen years at least. I was also B12 deficient, but only just! However, it was enough to make a difference to TN and that's what matters. I did look at Lupus and wonder if I had it, but I don't have enough symptoms. It's a bit tragic when you are actually looking for diseases, like it's a good thing! It's just trying to find a reason/pattern to it all.
Certainly though, with a daughter with MS and your own medical history, you definitely have an auto-immune problem going on. Unfortuately I can't get my doctor to take the B12/TN connection seriously so he won't condier auto-immune seriously either. It doesn't cheer me up any that doctors might find a connection in years to come. It's amusing, in a black way, that doctors expect you to suffer in silence while they wait for 'evidence'; you wonder if they would be so keen if it was them!
Do let me know what your test results show - I'd be very interested to hear if your docs find a connection. Cathy in MD said:
You have certainly posed an interesting topic. I have TN2, and my blood work shows that I am deficient in B12 and D3. Along with that I had to have my gall bladder removed several years ago; and I take daily prescription medication for GERD.
I have also been diagnosed with mixed connective tissue disease. I am currently being treated for Lupus because my symptoms are "Lupus Like", mixed connective tissue disease is a combination of auto-immune diseases (although I think it is time to do more research because I really feel my rheumatologist isn't listening to me. My joint pain is getting much worse and other problems that she is ignoring). I have a daughter with Lupus and another daughter with MS. My daughter with MS gives herself monthly shots of B12.
I also have Sleep Hypoxemia, which means that my oxygen levels fall a great deal during 80% of the time I am sleeping. I learned of this because I was falling asleep at work as well as having trouble with grogginess during driving. I am suppose to sleep with oxygen but insurance issues are preventing that at the moment. The doctor's answer is to give me another medication to keep me alert, which I take twice a day.
Naturally, due to all of the above, I suffer from depression - great, more meds!
So...maybe there is a connection. My PCP just did a series of blood work so I will be interested in seeing what comes back.
Hi again, Cathy. I've just replied to your friend request and asked you if you suffer from any autoimmune diseases! I apologise for that. It's been a while since I was on here and I have the memory of a small drunken gnat, thanks to anti-convulsants - sorry!
Well, at least your test results look good even if you're not feeling better - some small comfort in that. But I know how you feel. You find yourself getting disappointed at negative test results, and actively wanting to find a disease. I think it's anything to put a name to it, to have something to work with and maybe fix. If you don't know what it is you can't treat it.
With your joint pain, I take it you've already thought of fibromyalgia and rheumatoid arthritis? They're both autoimmune so I'd have thought they were possible. And coeliac disease? It is just possible that you are one of the people who show symptoms of other body dysfunction rather than gut, although you have had gut problems. Just throwing the most obvious ones out there. I expect you've already investigated them all?
Ditto for having had my gallbladder removed. That was in '06 and I developed tn2 about 4 yrs later. I am also deficient D3 and low B12 as well as suspected fibro. My joints are getting progressively more painful as well as frequent pain in my muscles and sometimes my leg bones hurt. I have a wonderful female doctor who is pretty open to helping me search for answers and I am most grateful for her. It is amazing how similar many of our journeys are.
It truly is amazing how so many of us have so many problems of a similar nature that it is hard not to consider if there is some sort of connection. Gall bladder removal, possible autoimmune or diagnosed autoimmune disease, vitamin deficiencies - specifically B12 and possibly D and probably a host of other things.
It took me over 30 and 4 neurologists to get a TN diagnosis. At that point it had reached the point of being a constant dull aching pain that set off migraine headaches that would cause me to nearly loose my vision in the eye on the affected side. My pain specialists was the first to make the diagnosis and then I saw a new neurologist that finally confirmed it using some simple tests that no other neurologist had ever done!
My autoimmune disease was diagnosed only because my daughter was diagnosed with Lupus. So my doctor decided to run some blood work on me even though I had been complaining of fatigue, etc, for years.
My point is simple: BE YOUR OWN ADVOCATE - IF YOU THINK SOMETHING IS WRONG, RESEARCH (CAREFULLY, THE INTERNET IS FULL OF CRAZY STUFF), AND PUSH UNTIL YOU GET ANSWERS OR MOVE ONTO A NEW DOCTOR...SOMETHING I WILL HAVE TO DO MYSELF.
Hi Shadow, that really is a remarkably similar illness history, isn't it? We could all be related! I assume you've had your thyroid tested? I know a lot of the women on the thyroid forum I use have the muscle pain that you talk of. And the joint pain is classic autoimmune. I have developed a return of pain in all my foot joints, which is a real nuisance. The trouble is, it could be due to weight gain as well. Weight gain while eating a super clean diet for months now, I might add; classic thyroid symptom! But I am reluctant to treat for thyroid problems since I am trying to get rid of medications, not add more in. Everyone I meet on the thyroid forum keeps telling me to check my adrenal function but I'm frankly scared to do it! Don't know what I'll find!
shadow2 said:
Ditto for having had my gallbladder removed. That was in '06 and I developed tn2 about 4 yrs later. I am also deficient D3 and low B12 as well as suspected fibro. My joints are getting progressively more painful as well as frequent pain in my muscles and sometimes my leg bones hurt. I have a wonderful female doctor who is pretty open to helping me search for answers and I am most grateful for her. It is amazing how similar many of our journeys are.
You are absolutely right, Cathy. I think we should start a club: The Autoimmune Sisters! And how right you are about researching on the internet. It's a great resource, and I'm old enough to remember life before it existed, when you had to use the library, but you also have to wade through a lot of nonsense on the internet, and sometimes it's difficult to tell the difference. Unfortunately a lot of supposed 'doctors' are not to be trusted and they come up with some batty theories just to exploit people. But you have to just keep researching and follow anything that your gut tells you feels right. Instinct and more instinct. Rightly or wrongly, I believe your body knows what's wrong and if you are smart and careful about it, it will guide you in the right direction. The danger is in believing what you want to believe rather than really listening, no matter how unpalatable the message is it's trying to tell you.
Oh dear, now I sound all Californian and Bohemian. Believe it or not, I'm very strict about needing good science behind anything I follow!
Cathy in MD said:
It truly is amazing how so many of us have so many problems of a similar nature that it is hard not to consider if there is some sort of connection. Gall bladder removal, possible autoimmune or diagnosed autoimmune disease, vitamin deficiencies - specifically B12 and possibly D and probably a host of other things.
It took me over 30 and 4 neurologists to get a TN diagnosis. At that point it had reached the point of being a constant dull aching pain that set off migraine headaches that would cause me to nearly loose my vision in the eye on the affected side. My pain specialists was the first to make the diagnosis and then I saw a new neurologist that finally confirmed it using some simple tests that no other neurologist had ever done!
My autoimmune disease was diagnosed only because my daughter was diagnosed with Lupus. So my doctor decided to run some blood work on me even though I had been complaining of fatigue, etc, for years.
My point is simple: BE YOUR OWN ADVOCATE - IF YOU THINK SOMETHING IS WRONG, RESEARCH (CAREFULLY, THE INTERNET IS FULL OF CRAZY STUFF), AND PUSH UNTIL YOU GET ANSWERS OR MOVE ONTO A NEW DOCTOR…SOMETHING I WILL HAVE TO DO MYSELF.
The pain deep in my leg bones has always worried me. It really affects me at night. I'm going to pm you if you wouldn't mind sharing your thyroid online group. I know it is challenging to get any diagnosis regarding the thyroid and my first test showed nothing. I am currently awaiting the most recent results.
It's funny you mentioned the foot joints as my left foot has felt broken which I am pretty certain is impossible as I recently saw a podiatrist and they x-rayed it.
Regarding the weight gain, I have gained 40 pounds in the past year, probably closer to 6 months. And I am only 5 ft tall so I am horrified to look in the mirror. Seriously horrified. I have been blaming the gabapentin which I had to quadruple my dose over the past year but recently started questioning autoimmune as a possibility. Other strange things that lead me that way are sometimes I am uncontrollably irritable, losing a lot of hair at the temple and a couple of years ago almost over night my skin, forearms only, became mottled. I have been living in an extremely hostile work environment, extremely so, for several years now. My stress/cortisol was non-stop for the entire workday for years.
Woman with the electric teeth said:
Hi Shadow, that really is a remarkably similar illness history, isn't it? We could all be related! I assume you've had your thyroid tested? I know a lot of the women on the thyroid forum I use have the muscle pain that you talk of. And the joint pain is classic autoimmune. I have developed a return of pain in all my foot joints, which is a real nuisance. The trouble is, it could be due to weight gain as well. Weight gain while eating a super clean diet for months now, I might add; classic thyroid symptom! But I am reluctant to treat for thyroid problems since I am trying to get rid of medications, not add more in. Everyone I meet on the thyroid forum keeps telling me to check my adrenal function but I'm frankly scared to do it! Don't know what I'll find! shadow2 said:
Ditto for having had my gallbladder removed. That was in '06 and I developed tn2 about 4 yrs later. I am also deficient D3 and low B12 as well as suspected fibro. My joints are getting progressively more painful as well as frequent pain in my muscles and sometimes my leg bones hurt. I have a wonderful female doctor who is pretty open to helping me search for answers and I am most grateful for her. It is amazing how similar many of our journeys are.
You should definitely look into thyroid. It's a simple test or tests, depending on what you can afford/ want done, and it will tell you a lot. If nothing else you can strike it off your list.
I'm happy to share my thryroid forum. It's on Health Unlocked. I think it mostly has UK membership but that won't stop you getting good info from it. It's more of a problem for meds, which tend to be different between the UK and US, but I'm from the UK and I cope on here, which is predominantly American!
There's loads of different illnesses - no TN that I know of though! - and the thyroid forum is VERY busy. Practically anything you want to ask, someone will know the answer. And it's free and easy to join as many forums as you want. Good luck!
shadow2 said:
The pain deep in my leg bones has always worried me. It really affects me at night. I’m going to pm you if you wouldn’t mind sharing your thyroid online group. I know it is challenging to get any diagnosis regarding the thyroid and my first test showed nothing. I am currently awaiting the most recent results.
It’s funny you mentioned the foot joints as my left foot has felt broken which I am pretty certain is impossible as I recently saw a podiatrist and they x-rayed it.
Regarding the weight gain, I have gained 40 pounds in the past year, probably closer to 6 months. And I am only 5 ft tall so I am horrified to look in the mirror. Seriously horrified. I have been blaming the gabapentin which I had to quadruple my dose over the past year but recently started questioning autoimmune as a possibility. Other strange things that lead me that way are sometimes I am uncontrollably irritable, losing a lot of hair at the temple and a couple of years ago almost over night my skin, forearms only, became mottled. I have been living in an extremely hostile work environment, extremely so, for several years now. My stress/cortisol was non-stop for the entire workday for years.
Woman with the electric teeth said:
Hi Shadow, that really is a remarkably similar illness history, isn’t it? We could all be related! I assume you’ve had your thyroid tested? I know a lot of the women on the thyroid forum I use have the muscle pain that you talk of. And the joint pain is classic autoimmune. I have developed a return of pain in all my foot joints, which is a real nuisance. The trouble is, it could be due to weight gain as well. Weight gain while eating a super clean diet for months now, I might add; classic thyroid symptom! But I am reluctant to treat for thyroid problems since I am trying to get rid of medications, not add more in. Everyone I meet on the thyroid forum keeps telling me to check my adrenal function but I’m frankly scared to do it! Don’t know what I’ll find!
shadow2 said:
Ditto for having had my gallbladder removed. That was in '06 and I developed tn2 about 4 yrs later. I am also deficient D3 and low B12 as well as suspected fibro. My joints are getting progressively more painful as well as frequent pain in my muscles and sometimes my leg bones hurt. I have a wonderful female doctor who is pretty open to helping me search for answers and I am most grateful for her. It is amazing how similar many of our journeys are.