New member here, trying to retain positive outlook

Welcome New Member Introductions
1

I just found this website today. So far I'm impressed by the amount of information and caring that's shared here.

My little back story: For quite a while (maybe 12-18 months), I was certain I had some dental problem that was occasionally flaring up. I assumed my dentist would eventually tell me I needed a root canal or something, but every time I had a check-up he told me nothing was wrong.

I vividly remember the day when my occasional sharp pains could no longer be confused for a mere dental issue: Last Christmas I went to a friend's house for dinner and most of the day and evening I was suffering from sharp, stabbing sensations in the left side of my face. I still didn't know what was wrong. I had never even heard of trigeminal neuralgia. The pain continued throughout the holiday weekend, so I contacted my doctor the following Monday. I got an emergency appointment the following day, and that's when I got my TN diagnosis.

My initial treatment was with gabapentin. The doctor started me out on a very low dose -- just 100 mg once per day, at night before bed -- and told me to keep adding an additional 100 mg dose per day until the pain subsided. I found it very sedating to take only one pill per day, and it didn't seem to be helping my pain much. Two pills per day turned out to be sufficient for the pain, but in addition to making be drowsy during the day, causing me to want to overeat to try to stay awake at work, it also seemed to have a generally dulling effect. I particularly noticed this with sexual stimulation, and it reminded me of the sort of side effect I previously experienced with various SSRIs I took for depression. How can one's mind be excited but the body basically be saying, "I'm bored. Can we stop now?" Not good.

So my doctor switched me to carbamazapine. It also seemed to take away the pain, but its side effect profile was even worse for me. Though not quite as sedating, it messed with my hearing. Suddenly music sounded lower in pitch. A phone's ring sounded wrong. The dialtone sounded wrong. At first I thought I was imagining things, and then I read online that this is a common side effect to carbamazapine (for some people, at any rate).

Unfortunately, my doctor (a general medicine, primary care doctor; not a specialist) doesn't seem interested in exploring any alternatives and just put me back on the gabapentin. Don't get me wrong. It is taking away my pain (for the most part, any way), and I have extremely happy about that. But I honestly don't want to live with these side effects for the rest of my life.

My headline includes the phrase that I'm trying to retain a positive outlook, and here is what I meant: 1. I know that some people suffer a lot more from TN that I am -- so far, at least. It was excruciating before I was diagnosed and treated, but with a fairly low dose of gabapentin I can almost forget there's anything wrong with me. 2. Sometimes the world reminds one that despite what one might be going through, there are others with far worse situations. Right when I was living with the worst of my pain, I learned that a co-worker 20 years my junior who had been missing from work for nearly a year had died. I knew him on a casual, friendly basis, but I didn't know what was going on with him. Turned out he had leukemia and then passed away, leaving two small kids behind. I still tear up a little when I think about it (for a variety of reasons), but it also reminds me that what I am dealing with is, to use a cliche, small potatoes compared to that.

2

Thank you for sharing your story and trusting us with such intimate feelings. I can understand some parts of what you have said. Noises are different for me as well. I find I need the TV at a higher volume as I can’t seem to make out all the tones. Very quickly though I turn it down as it causes my pain to flare.

I would encourage you to learn everything you can about this condition because as you have already discovered most doctors, while concerned, are not particularly knowledgeable of TN. You will need to become an advocate for yourself. Not hard to do when you are having pain.

I am sorry for the loss of your co-worker. We all have a story and our reality does not change anyone else’s. Stay strong.

3

hi Jeff,

I see that you are from SF (i am from San Jose). We have some of the best hospitals in the world around here and so you have many options. I am seeing a neurologist at stanford and I am going to UCSF for a second opinion. UCSF is the #1 hospital in the US for neurology and they even have a trigeminal neuralgia clinic:

https://www.ucsfhealth.org/clinics/trigeminal_neuralgia/

Get a referral and go to see them, there are many options for dealing with TN and I think most GPs are not trained enough or experienced enough to deal with TN.

good luck!

H

4

I don't want to intend to rub anyone up the wrong way, but kinda play devils advocate, I think it important.

So you go to UCFC see the best neurologist in the US, hey they even have a TN clinic. What are the options going to be presented to the patient? Maybe UCFC can correct me. It will be in the order of meds, change of meds, minor destructive surgery, maybe skip this, and go straight for MVD, or a major destructive surgery. Once in their hands your options are seriously limited. As in how trained are these folk in considering something they see very little of- national incidence.

How many consider the neck, how many consider autoimmune causes, unless you get an answer from said specialist, run, run faster, run faster still, unless the previous has been considered, otherwise you could find yourself on a treadmill to ruin.

5

After reading the link supplied by haach76, I rest my case.

6

The OP mentioned that he is not happy with his GP, i suggested some options in our area, including UCSF and I also mentioned Stanford. I think it is generally understood that we should look around until we find a good doctor. I have personally seen 4 doctors so far and continue my search for one that will really listen and not just give me tegretol.

But what is your suggestion aiculsamoth? How would you respond to the OP? the good thing about these forums is that we can all give our two cents to help the person asking the question and hopefully he will read through the replies and learn something and pick the best ideas.

H

7

I am not happy with my GP in the sense that I don't think he is taking my complaints about side effects seriously, but I will say that because the gabapentin is at least addressing the pain (for the moment, anyway) I don't have a sense of urgency to go to a different clinic that would require me to pay all of the costs out of my own pocket. (Kaiser member here with no out of network coverage.) At some point I probably will ask to see a specialist at Kaiser, at the very least. It sounds like I should try to see a neurologist? I had always considered that specialty to be more focused on brain disorders, but I guess I was mistaken about that.

8

H,

I'm in strong agreement with your sentiment about the info provided by forums, gives the poster options, hopefully educated options or the very least a channel they can pursue.

Sorry I'm unsure what you mean by OP, although in writing this I'm thinking original poster. I think I've nailed it :).

In one sense you might seem to confirm my point in you have seen four and you still seem to be lacking in ideas/ solutions.

I've mentioned this tonight in another post, how is a GP, Neuro going to help long term by adding anything? Bearing in mind what they are going to be adding, pharma etc., destructive procedures. Bearing in mind most were OK before a certain time frame, wouldn't it make more sense to remove something? Which leads us to functional medicine which I've mentioned in a previous post. Purely a personnel opinion, but to me makes much more sense than the orthodox approach of adding something, when at some point the patient was fine without it.

Functional Medicine;

Toxins

Microbes

allergy

stress

diet

trauma/ posture

If all these were addressed we wouldn't have circa 50% of US kids suffering with chronic illness. TN is primarily about overall health, unfortunately we're all accustomed to think a pill/ orthodox medicine is the answer in ADDing something, a ridiculous notion, in the main we should be taking something out of the equation.


.
haach76 said:

The OP mentioned that he is not happy with his GP, i suggested some options in our area, including UCSF and I also mentioned Stanford. I think it is generally understood that we should look around until we find a good doctor. I have personally seen 4 doctors so far and continue my search for one that will really listen and not just give me tegretol.

But what is your suggestion aiculsamoth? How would you respond to the OP? the good thing about these forums is that we can all give our two cents to help the person asking the question and hopefully he will read through the replies and learn something and pick the best ideas.

H

9


Absolutely Jeff! i would see a neurologist next (or a few). Nerves are all over your body so its not just the brain that they look after.

There is a neurologist in redwood city's kaiser that is known to deal with trigeminal neuralgia, if you look in the northern california group you will find the name. Or use the search function on the forum and look for "redwood city".

if you cant find it send me a private message.

H
Jeff said:

I am not happy with my GP in the sense that I don't think he is taking my complaints about side effects seriously, but I will say that because the gabapentin is at least addressing the pain (for the moment, anyway) I don't have a sense of urgency to go to a different clinic that would require me to pay all of the costs out of my own pocket. (Kaiser member here with no out of network coverage.) At some point I probably will ask to see a specialist at Kaiser, at the very least. It sounds like I should try to see a neurologist? I had always considered that specialty to be more focused on brain disorders, but I guess I was mistaken about that.

10

aiculsamoth,

Yes, OP is the original poster :D good guess.

I think you are talking about integrative medicine and i 100% agree with you! If i knew of anyone who does anything similar to that in california believe me i would recommend it to the OP but i know of none like that! my search for a doctor who knows something continues and the day i find one i will come back to this thread and let our friend know about it. I am pessimistic though, most doctors know so little about this condition and are not even willing to listen to you. I do all my research and when i go to the stanford neurologist (who happens to be a professor at the stanford school of medicine) and suggest something they just tell me basically to F off and take my tegretol :(

Actually my best luck so far has been a "doctor" who is in a sketchy neighbourhood here and when i go to him and ask him for something he will just write me the script. I do the research, he just does what i ask. I know that is terrible and nobody should be self medicating but i think right now i know more than any of these doctors. Not because i know so much about TN, but because they know so little.

H


aiculsamoth said:

H,

I'm in strong agreement with your sentiment about the info provided by forums, gives the poster options, hopefully educated options or the very least a channel they can pursue.

Sorry I'm unsure what you mean by OP, although in writing this I'm thinking original poster. I think I've nailed it :).

In one sense you might seem to confirm my point in you have seen four and you still seem to be lacking in ideas/ solutions.

I've mentioned this tonight in another post, how is a GP, Neuro going to help long term by adding anything? Bearing in mind what they are going to be adding, pharma etc., destructive procedures. Bearing in mind most were OK before a certain time frame, wouldn't it make more sense to remove something? Which leads us to functional medicine which I've mentioned in a previous post. Purely a personnel opinion, but to me makes much more sense than the orthodox approach of adding something, when at some point the patient was fine without it.

Functional Medicine;

Toxins

Microbes

allergy

stress

diet

trauma/ posture

If all these were addressed we wouldn't have circa 50% of US kids suffering with chronic illness. TN is primarily about overall health, unfortunately we're all accustomed to think a pill/ orthodox medicine is the answer in ADDing something, a ridiculous notion, in the main we should be taking something out of the equation.


.
haach76 said:

The OP mentioned that he is not happy with his GP, i suggested some options in our area, including UCSF and I also mentioned Stanford. I think it is generally understood that we should look around until we find a good doctor. I have personally seen 4 doctors so far and continue my search for one that will really listen and not just give me tegretol.

But what is your suggestion aiculsamoth? How would you respond to the OP? the good thing about these forums is that we can all give our two cents to help the person asking the question and hopefully he will read through the replies and learn something and pick the best ideas.

H

11

H,

I think functional medicine goes by many different names, depending on the practitioner, but in my opinion should be the only true medical model at least for starters, it would save the UK NHS millions, probably save america's future working population bearing in mind all the sick kids.

I'd agree with you H, in that most folk here Know more than their neuro etc. about Tn, it is a very informative site especially if members avail themselves to the TN Basics Tab at the top of the page.

As it happens, there is someone, probably one of many that are practising this, in CA one is Dr John Bergman, all be it a chiropractor. If he practices what he preaches- he has plenty of youtube vids and is quite entertaining, then he is one. Some folk might " ooh a chiro, I don't want my neck cracked", fine tell your said therapist they have other techniques, that's if they were going to use them in the first place.


haach76 said:

aiculsamoth,

Yes, OP is the original poster :D good guess.

I think you are talking about integrative medicine and i 100% agree with you! If i knew of anyone who does anything similar to that in california believe me i would recommend it to the OP but i know of none like that! my search for a doctor who knows something continues and the day i find one i will come back to this thread and let our friend know about it. I am pessimistic though, most doctors know so little about this condition and are not even willing to listen to you. I do all my research and when i go to the stanford neurologist (who happens to be a professor at the stanford school of medicine) and suggest something they just tell me basically to F off and take my tegretol :(

Actually my best luck so far has been a "doctor" who is in a sketchy neighbourhood here and when i go to him and ask him for something he will just write me the script. I do the research, he just does what i ask. I know that is terrible and nobody should be self medicating but i think right now i know more than any of these doctors. Not because i know so much about TN, but because they know so little.

H


aiculsamoth said:

H,

I'm in strong agreement with your sentiment about the info provided by forums, gives the poster options, hopefully educated options or the very least a channel they can pursue.

Sorry I'm unsure what you mean by OP, although in writing this I'm thinking original poster. I think I've nailed it :).

In one sense you might seem to confirm my point in you have seen four and you still seem to be lacking in ideas/ solutions.

I've mentioned this tonight in another post, how is a GP, Neuro going to help long term by adding anything? Bearing in mind what they are going to be adding, pharma etc., destructive procedures. Bearing in mind most were OK before a certain time frame, wouldn't it make more sense to remove something? Which leads us to functional medicine which I've mentioned in a previous post. Purely a personnel opinion, but to me makes much more sense than the orthodox approach of adding something, when at some point the patient was fine without it.

Functional Medicine;

Toxins

Microbes

allergy

stress

diet

trauma/ posture

If all these were addressed we wouldn't have circa 50% of US kids suffering with chronic illness. TN is primarily about overall health, unfortunately we're all accustomed to think a pill/ orthodox medicine is the answer in ADDing something, a ridiculous notion, in the main we should be taking something out of the equation.


.
haach76 said:

The OP mentioned that he is not happy with his GP, i suggested some options in our area, including UCSF and I also mentioned Stanford. I think it is generally understood that we should look around until we find a good doctor. I have personally seen 4 doctors so far and continue my search for one that will really listen and not just give me tegretol.

But what is your suggestion aiculsamoth? How would you respond to the OP? the good thing about these forums is that we can all give our two cents to help the person asking the question and hopefully he will read through the replies and learn something and pick the best ideas.

H