Searching for support and answers

[Jan]

I received this message from a lady (hope she replies here so everyone can talk directly to her)
Good evening. I came across your website after searching on the subject Trigeminal Neuralgia.  I am 46 years old and have been to see Dr. Scott Wilson Neurologist in Calgary in January, who had indicated to me that I have a form of Trigeminal Neuralgia and had prescribed Gabapentin for me and sent me off to follow-up with my family doctor. 

I’m assuming after researching the internet that I have Atypical Trigeminal Neuralgia as I have pain with this every day and am still trying to get it controlled with Gabapentin Levels.  My family doctor has yet to receive a consultation letter from Dr. Wilson’s office.

I am seeking support and am wondering what is out there for me? Where do I view the Newsletters etc. etc. Any support groups in Calgary?

Anything you can provide me would be so wonderful.  I am so tired of dealing with this and just can’t take it some days.

Thank you so very much for your time.  I really appreciate it!
I did send her information about the Calgary group.   

[Gina]

Hello and thank you so kindly for starting me out on this journey of support to which I am very grateful.  It's only been since January of this year, 2010 that I was to see a neurologist in Calgary, however looking back now, my TN experiences I believe started for me in 2005 wherein I was experiencing episodes of pain and pressure but relating it to TN was the furthest thing from my mind (not knowing what TN even was) and from my family doctor's mind.  I was sent on a medical rollercoaster that involved a diagnosis of headaches to sinus related issues over the next years.  When my symptoms increased and became daily and started to become unmanageable by the end of a day, a referral for sinus surgery was recommended and completed in May, 2009. Granted I did have some sinus issues, however little did I know that TN was also an underlying issue until now.  After my 6 month check-up, my sinus surgeon indicated to me, everything was beautiful and healed and I shouldn't be having any further pressure or pain, but unfortunately this was not the case.  He then referred me to Dr. Scott Wilson here in Calgary.  After explaining my symptoms to Dr. Wilson and learning about TN, I was putting 2 and 2 together myself and he had indicated to me I have a form of Trigeminal Neuralgia, although my family doctor has yet to see the consultation letter from him and a confirmed diagnosis, which is very frustrating to myself and my doctor.  He sent me home with a prescription of Gabapentin as "we all know how long it takes to get an MRI" were his words. He just told me to follow-up with dosage increases with my family doctor.  I can't imagine having the "electric-like" shock pain that I've read some of you have to deal with (Dr. Wilson indicated I was lucky I didn't have this), although I have felt these sensations to a small degree on ocassions and I'm really nervous that mine will eventually turn into such pain.    I'm really not enjoying feeling spacey and being tired on this medicine, however I guess it must be helping some as I'm not going to bed every night in tears lately. So strange.  I still feel alot of pressure though like everything's inflamed inside my face and a throbbing sensation. I think the medicine has maybe started to numb things,  but there's still issues. May have to increase dosage some more?? How long did any of you have to be on any medicine before it helping?  Seems like surgery is the best fix.  Don't know when I'll get in for an MRI.  Last time I got through on the phone to Dr. Wilson's office, they indicated he hadn't even had time to do the paperwork yet as they were so busy seeing new patients! (Another frustrating and upsetting issue)I will be looking  forward to attending the next meeting in Calgary.   Thanks so much for listening and for your support. I'm at home today from work as I need some rest.  Bye for now and I hope you're all taking care.  I'm hoping I did this post correctly.  Sorry for it being so lengthy.Very Sincerely, Gina

[Jan]

Hi Gina,  Your posting skills are just fine.

I think most people are on Gabapentin (Neurontin) for about 2 - 3 weeks before they feel the full effect.  But this is a great question and I am going to ask the Pharmacy about it.

I'll post the reply.

[Gina]

Thanks so much Jan.  I'm beginning to doubt if Gabapentin will work for me.  I've gradually increased it to 1800mg/day now and it's still not controlling things for me.  (sure makes me very tired and dopey which is very unpleasant and very disappointing).  I'm going into 3 weeks now on it at this level. I actually tried Tegretol in January and ended up being allergic to it.  I go see the Neurologist Apr. 8 for follow-up - thank goodness.  Boy, the wind today I think sure aggravated things for me. I have so much pressure and deep ache. It feels like the inside of my face is being squeezed ever so tightly.   Is there anyone that has similar symptoms?  I don't have the electric shock pain, although at times I have felt little shocks on my right side.  If only there was a magic pill and I could get back to being me. I know I best remain optimistic with the medication.  After reading some of your stories, I guess I best be grateful that I'm not debilitated with the shock pains, although dealing with this kind of pain every day is definitely no picnic either. I never get a break from it.  Thanks to all for your support. Bye for now.

[June]

Hi Gina,

I have a very mild form of TN and fortunately have never had to take medication.  However, I am affected with the wind as well.  My face is sore today as we were walking around Banff yesterday where it was very windy.  I'm in Calgary and I never go out unless I have a winter or summer jacket with a hood on it.  If it's windy, my hood is up and protecting the left side of my face.  I don't care if I get strange looks from people.  It works for the most part, but not yesterday for some reason.  I do get some relief by putting the heating pad on my face.

Good luck with Dr. Wilson.  Hope you can get some answers soon.
June

[gargon]

Hi Gina, my name is Derek and I am a Pharmacy Technician and a TN patient. Gabapentin is started on a titration dose depending on what the physician sees as the final maintenance dose. Doses of up to 2400 mg in 3 divided doses are usually well tolerated. Dosing of 1800 mg daily in 3 doses is often the usual range. The dose is often titrated up over 3 days depending on how well it is tolerated, though this will be slower in some patients. This drug has very high incidence for side effects of drowsiness and dizziness, so physicians often go slowly. If you have experienced some relief this is a good sign that the medication would be effective. You should definitely talk to your doctor if you are not experiencing significant pain reduction. I do not know what your current dosing is, so it is difficult to judge for sure if you should increase the dose.  After doise changes you should feel improvement in a couple of weeks for sure. You should probably not exceed 600 to 800 mg three time daily. If you are still having problems, there are other medications to try. Hope that helps. Let me know how you are doing. Best wishes. Derek

[Barb]

hi Gina, I hate gapapentin, I take it, but it makes me feel horrible, I have blurred vision, wooziness and generally my brain doesn't work the way it should on it, I take it with tegretol, but there are other drugs, you can ask your family doctor to see another neurologist if  this one is not meeting your needs, not all neurologists are familiar with TN, I was diagnosed by an oral surgeon to begin with, the first neurologist i saw at Sunnybrook in Toronto, while I'm sure brilliant was odd and offered to take bone out of my head and leave it out, he was too odd for me and I went to see a second one, who seemed to know a lot more about TN, he was great and right on getting things done, now 8 years later here in Edmonton I just saw a 3rd and an "expert on TN" as well as very knowledgeable about the drugs that are out there, he was Dr. Stenerson, if you are having pain still maybe something with the gabapentin will work better, hope you get the help you need.

[Gina]

Hi.  It's been some time that I've visited, however I wanted to thank you all for your notes.  I sure appreciated them.  I guess since I last wrote there was some uncertainty with my diagnosis and really to this date, my neurologist is still not convinced I'm dealing with Trigeminal Neuralgia as maybe my symptoms aren't typical, but it may be time to seek a new doctor as I am convinced this is what I'm dealing with. I had my MRI done, but only the "dry" one was ordered and nothing showed as far as tumours/growths etc.  From reading on-line, I have learned that the "wet" MRI is what is required to see blood vessels, nerves etc. which I believe now is what I need to have done and the doctor should have ordered this type for me (frustrating!).  I gradually have increased my Gabapentin to 2400 mg. /day (4 doses throughout the day of 600mg) and can honestly say it has helped, not 100% but I am at least able to cope throughout a day of work and evening.  As the majority of you, I do not like being on this medicine, but really don't have a choice at this point.  Although I am not faced with sharp disablng stabbing pain, mine is more of a constant intense pressure/ache in the upper face region and without the meds. is disabling.  I have started to try a herbal support (Myelin Sheath) to see if this will make any difference. I've taken it a month now, with no change though - it may take up to 3 weeks.
I have also noticed the food triggers (caffeine (still need a cup in the morning, peanut butter/chocolate/aspartame pop) are aggravating which I have started to stay away from as I would have these quite often.  Stress is an isn't aggravator which can occur daily in my life.  Even being on the meds., these things will intensify my symptoms.  Well, I hope you are all managing.  I must close for now but hope to write again a little sooner than last time.  Take care for now.  I think I'll make a goal to attend the next evening Calgary appointment(if there is one),  as I work during the day and cannot make the afternoon ones.   Bye for now all. Sincerely, Gina

[Jan]

One time I looked it up and there are 67 different diseases that cause facial pain - TN is only one of them so it doesn't surprise me when it seems so difficult to get a diagnosis.  There are a lot of different options to consider.  Sometimes it takes a lot of persistence on the part of both the doctor and the patient to get to the specific cause of a person's pain.

Just don't give up - you need answers.  Until you know what causes your pain you can't begin to deal with it appropriately.