My pain is back and torturing me for the last 6 weeks .It seems Dilantin is not working for me anymore. I’m waiting for an appointment with specialist at University Hospital in London, Ontario and my impression is that nobody cares and nowhere to go. I’m searching for neurologist in Ontario who has some experience with GPN patient but no results. The neurologist that I have right now is pain specialist and practically I am his first GPN patient. Desperate situation! From my research there is a Cranial Nerve Disorders Clinic in Winnipeg but to get referral for that place is the same trouble as get referral for Clinic in Pittsburg, USA. Issues with OHIP( Ontario Health coverage)!
All members are mostly from USA and unfortunately I cannot use their valuable experience with different clinics and doctors.
All ideas are welcome. Any information how to deal with this problem is more than welcome.
Hi Nikola, sorry to hear you are having trouble. Can't help you with your problem on specialists but can suggest you try acupuncture if your meds are not working. Try this while you are sourcing out another neurologist to see.
I wish you luck in seeking treatment. I don’t know how your insurance works. Can you use it in the USA? Do you have to have a referral? University of Pittsburgh Medical Center is an awesome place if you can get there. Having insurance issues stand between you getting treatment is awful.
Sorry to hear that you are going through such pain. It is very important that you see a specialist that has experience with this GPN. I'm seeing Dr. Fukushima and I've heard people from all over the WORLD had come to him for their pain. I'm having surgery with him on Oct. 23. I'm also seeing a pain specialist that is very familiar with my GPN and the surgery is the only way to be pain free. I'm taking medications now and still having pain.
I’m fairly new to this group but have suffered with GPN for nearly 30 years. I’ve investigated surgery but I’m terrified of the thought because I’ve had three different procedures suggested. The Pittsburg option sounds the best to me.
Has your doctor tried carbamazepine (Tegretol)? It does not completely eliminate the attacks but can mitigate them. This was prescribed for me when I was diagnosed and I believe that if it had not been for that medication I would have ended everything many years ago.
I am just now learning about other options through this group and I hope it can help you.
Thank you for your reply all of you My family doctor has changed my medication.He prescribed Lyrica 75mg twice daily and if that does not work- Cesamet 0,5 twice daily.I had my first pill yesterday and still no results. Still taking Dilantin because you shouldn't go off that drug suddenly.Yes, I tried carbamazepine three years ago and did not work.They have no idea what they are doing- this is guessing game. Appointment with neurologist is unknown zone- could be for a couple weeks or twelve months.I do not know how I can get to Petersburg with Ontario health coverage.Any idea how much it would cost if I would go on my own? I tried to contact Pittsburgh Clinic a couple years ago but they couldn't tell me the "number".
Thank you Tinabh. I wish you luck and my heart and prayers will be with you on Oct 23rd.I'll be waiting for good news.
tinabh said:
Sorry to hear that you are going through such pain. It is very important that you see a specialist that has experience with this GPN. I'm seeing Dr. Fukushima and I've heard people from all over the WORLD had come to him for their pain. I'm having surgery with him on Oct. 23. I'm also seeing a pain specialist that is very familiar with my GPN and the surgery is the only way to be pain free. I'm taking medications now and still having pain.
I have tried acupuncture- unfortunately no result.Ii hope that new drug will work.
Thank you.
Kaz said:
Hi Nikola, sorry to hear you are having trouble. Can't help you with your problem on specialists but can suggest you try acupuncture if your meds are not working. Try this while you are sourcing out another neurologist to see.
I hope the new drug works for you too! Just a quick question on the acupuncture though, how many treatments did you try and how many days inbetween? Also did you have any scalp acupuncture? Just curious to know as sometimes people will say they have tried acupuncture and maybe have only gone twice. Not saying that's the case here, just curious to know your experience. Also was it a TCM practitioner or a medical doctor or physio doing dry needling. That's another important issue as one should only see a trained TCM practitioner for this type of acupuncture.
I've done the accupuncture using the points that I got off of this site. Started about 6 months ago and have gone twice a month...not sure if that's what is helping, but, I have gone into remission and I have an acupuncture appointment this afternoon. I'm going to keep it up...
What dose of tegretal were you on? I needed a huge amount.2400mg a day. I still had pain with that in the end before my surgery. I am not sure how much my total bill was. I haven’t recieved any statements yet. If I will let you know when I do. I honestly was ready to find a way to pay myself if insurance wouldn’t cover it…mortgage my house or something…anything to get it fixed. Nobody should be in pain like that.
That's great to hear. I'm so glad you are getting relief!! Were they the points that I suggested? Twice a month is good to manage your symptoms to keep them quiet. If you notice it begins to niggle go twice a week to bring it back under control. As mentioned in my previous posts it is what saved me as I was considering suicide as mine was chronic and severe. I would be so unwell I would lose massive amounts of weight. The pain was relentless at every 3-5 minutes for months on end.
I am now studying traditional chinese medicine focusing on acupuncture for neurological issues and pain management for neuralgias because I know it works and I know what a different it can make to a persons quality of life to be living without this pain. Ths pain we experience other people cannot really comprehend as the intensity of it is indescrible and most people, even specialists don't quite get it because they have never experienced it.
I think it was your post where I found the acupuncture points. I found it a few months ago before I joined the group.. Printed them and took them to the acupunturist. She new exactly what they were.
The first couple of sessions made the attacks more frequent but she said that was to be expected. I'm glad I stuck with it. We'll see how long this remission lasts.
I also get frequent theraputic massages. I recommend that for anyone--better than drugs.
Thanks for all the support
Kaz said:
Hi Bill,
That's great to hear. I'm so glad you are getting relief!! Were they the points that I suggested? Twice a month is good to manage your symptoms to keep them quiet. If you notice it begins to niggle go twice a week to bring it back under control. As mentioned in my previous posts it is what saved me as I was considering suicide as mine was chronic and severe. I would be so unwell I would lose massive amounts of weight. The pain was relentless at every 3-5 minutes for months on end.
I am now studying traditional chinese medicine focusing on acupuncture for neurological issues and pain management for neuralgias because I know it works and I know what a different it can make to a persons quality of life to be living without this pain. Ths pain we experience other people cannot really comprehend as the intensity of it is indescrible and most people, even specialists don't quite get it because they have never experienced it.
I was taking 1000 mg. a day when it was bad. I've just gone into remission but I'm trying 400-600mg a day to keep it at bay. I've been doing the acupuncture thing and I THINK it's helping--see Kaz's and my exchange.
How did your surgery work--I'm terrified of that.
Laura said:
What dose of tegretal were you on? I needed a huge amount.2400mg a day. I still had pain with that in the end before my surgery. I am not sure how much my total bill was. I haven't recieved any statements yet. If I will let you know when I do. I honestly was ready to find a way to pay myself if insurance wouldn't cover it...mortgage my house or something..anything to get it fixed. Nobody should be in pain like that.
The surgery was an absolute success! Totally pain free now for 1 month. Yesterday was the one month anniversary of the surgery. I am so glad I finally did it and wish I had done it sooner. Pittsburgh was fabulous and I can’t say enough about Dr Horowitz and his office nurse Lois. She got me in immediately to be seen and my surgery was the following week…of note…they can also set up consult, pre-op, and surgery in one time frame if needed. Consults are on Tuesday’s and surgery on Wednesday’s. You can read about my surgery on here under “my surgery…” I wish you luck!
$26,865. This is what it looks like my total surgery cost was. This includes the initial consult with Dr Horowitz and staff and seeing a ENT that day, all of the pre-op testing the day prior to surgery (MRI, ct scans, blood work, EKG, hearing tests, brain wave tests, etc…, the surgery, 2 day hospital stay, and the follow up appointment and staple/suture removal a week after surgery. The other expenses would be travel costs and hotel. You have to stay in Pittsburgh area for 10 days at the time of surgery. They do have a place for patients and a family member to stay that is about $50 per night and has limited availability they gave me the pamphlet on it the week before. We chose to stay at a regular Marriott hotel near the hospital on arriving the 2 days prior to surgery. The day prior I had testing all day. So we arrived on Monday. Testing all day Tuesday and surgery was Wednesday. I left the hospital Friday and my husband had changed to the Marriott residential suites near the hospital so we had more room. It had a little kitchen and he went and got groceries…The following wednesday we checked out and went back to hospital (Drs office) for check-up and suture/staple removal. Hotel cost was about $2000. But if you stayed at the other place could be around $500. We have a Marriott rewards card so we get some free nights and points:) basically for the price of a nice car you can get the surgery. I am very fortunate as it appears that other thN the travel and hotel fees it will personally cost me $60. Going into this I thought it would be a lot more. When we went there the week prior for consult we also stayed overnight before the visit as it was at 930am. I hope this info helps. In my opinion it is worth taking a loan or borrowing from someone if you have to. I would have sold my house if I had to. That’s how bad the pain was.
Thank you so much for this information. I'm so glad that you are so well. I hope that we will stay in touch .
Laura said:
$26,865. This is what it looks like my total surgery cost was. This includes the initial consult with Dr Horowitz and staff and seeing a ENT that day, all of the pre-op testing the day prior to surgery (MRI, ct scans, blood work, EKG, hearing tests, brain wave tests, etc.., the surgery, 2 day hospital stay, and the follow up appointment and staple/suture removal a week after surgery. The other expenses would be travel costs and hotel. You have to stay in Pittsburgh area for 10 days at the time of surgery. They do have a place for patients and a family member to stay that is about $50 per night and has limited availability they gave me the pamphlet on it the week before. We chose to stay at a regular Marriott hotel near the hospital on arriving the 2 days prior to surgery. The day prior I had testing all day. So we arrived on Monday. Testing all day Tuesday and surgery was Wednesday. I left the hospital Friday and my husband had changed to the Marriott residential suites near the hospital so we had more room. It had a little kitchen and he went and got groceries...The following wednesday we checked out and went back to hospital (Drs office) for check-up and suture/staple removal. Hotel cost was about $2000. But if you stayed at the other place could be around $500. We have a Marriott rewards card so we get some free nights and points:) basically for the price of a nice car you can get the surgery. I am very fortunate as it appears that other thN the travel and hotel fees it will personally cost me $60. Going into this I thought it would be a lot more. When we went there the week prior for consult we also stayed overnight before the visit as it was at 930am. I hope this info helps. In my opinion it is worth taking a loan or borrowing from someone if you have to. I would have sold my house if I had to. That's how bad the pain was.
I'm trying to find your post regarding acupuncture and I'm not sure that I'm not on the right path. Could you please promt me at the information that Bill is talking about.Than you.
Bill said:
Kaz,
I think it was your post where I found the acupuncture points. I found it a few months ago before I joined the group.. Printed them and took them to the acupunturist. She new exactly what they were.
The first couple of sessions made the attacks more frequent but she said that was to be expected. I'm glad I stuck with it. We'll see how long this remission lasts.
I also get frequent theraputic massages. I recommend that for anyone--better than drugs.
Thanks for all the support
Kaz said:
Hi Bill,
That's great to hear. I'm so glad you are getting relief!! Were they the points that I suggested? Twice a month is good to manage your symptoms to keep them quiet. If you notice it begins to niggle go twice a week to bring it back under control. As mentioned in my previous posts it is what saved me as I was considering suicide as mine was chronic and severe. I would be so unwell I would lose massive amounts of weight. The pain was relentless at every 3-5 minutes for months on end.
I am now studying traditional chinese medicine focusing on acupuncture for neurological issues and pain management for neuralgias because I know it works and I know what a different it can make to a persons quality of life to be living without this pain. Ths pain we experience other people cannot really comprehend as the intensity of it is indescrible and most people, even specialists don't quite get it because they have never experienced it.
I have been on lyrica for over a year (previously on tegretol) and it appears to work although I have flare ups ocassionally that last approximately 6 weeks. My neuralogists increased my dosage to 100 mg 2x daily as a result of a recent flare up due to the severity. I am still experiencing pain but it is tolerable. i have also tried accupuncture which seems to provide some relieve. I find sometimes taking an anti-inflamatory like IBprofuen for a few days also provides some relief.