I don't know what to do anymore!

General General TN & GPN (Old Site)
1

I have had a migraine for over a month, which of course has triggered my TN. I have what I believe is the TN2, caused by dental work and still don't know if surgery is an option. It seems that my neuro is not very educated in TN.

I was finally able to get in to see him but and he said that the only thing he could do was give me a steroid but I also have a bladder infection so he told me that I would have to wait until I finish my antibiotics, 8 more days!

Then I had to see my psychiatrist today, who my PCP sent me to because of depression caused by pain and unemployment. She has just informed me that she is going to recommend that I be put in the hospital for detox because she doesn't think I should be taking any narcotics for pain. This came out of nowhere!

I am only taking what I have been prescribed, and I know that I am not taking super doses of narcotics, never more than prescribed. I am also taking Lyrica and Topamax.

I also have Connective Tissue Disease, which causes fatigue and pain all over my body.

I just feel like no one gets it and if I stop taking my meds, I am going to go back to being in constant pain! At least now, I have times when I am not in pain.

I just need some words of encouragement and understanding. The doctor's don't get it, other people don't get it and I feel so isolated and alone.

Thank you,

Cathy In MD

2

It sounds to me like you seriously need a second opinion from somebody who truly understands both Trigeminal Neuralgia and Migraine. One of the places where you might do well in obtaining such input and a fresh workup would be the University of Maryland Medical Center. There are several professionals on staff there who understand TN.
Otherwise: If your pain began with dental work, then the most likely candidate medications are in the family of tricyclic antidepressants. Drugs like Amitriptyline and Nortriptyline (and several others) are recognized by the International Association for the Study of Pain as having a cross-over effect on neuropathic pain that often is seen at doses lower than used to treat depression itself. Lyrica is sometimes used with atypical TN and fibromyalgia, but it's recognized as having significant side effects. Combined with Topamax, is can produce lethargy and lurid dreams. Drugs.com also indicates that the two can interact:

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Using topiramate together with pregabalin may increase side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience some impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with these medications. Avoid driving or operating hazardous machinery until you know how the medications affect you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medications without first talking to your doctor.

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I personally would regard any physician who pushes you toward detox to be over-reacting and under-qualified. While narcotic pain relievers don't help many chronic neurological face pain patients, they are a life saver for some.

3

Thank you so much Red! The Topamax is what helps me the most. The Lyrica does cause the side effects you mentioned, as well as weight gain, but while I'm not working, I may as well take it because it provides even more relief. As for the narcotics, they are to take the edge off because the others only go so far and I take them for break-through pain. I don't even take as much as prescribed if I don't need it but I do find it very effective.

My doctor actually started me on the narcotic pain meds before I was diagnosed with TN. I was in so much pain all the time and he started me on them as a last resort six years ago. I think what upset me the most was that she clearly didn't understand the concept of chronic pain or that I was in a migraine cycle, which needed to run it's course or be treated with steroids.

I'm hoping to get into Hopkins if I can but I didn't know that University of MD had any TN specialists. Perhaps I should check that as an option as well.

Since you answered, I'm hoping you will respond. Can tell me if TN caused by dental work makes me a good candidate or bad candidate for any of the surgeries? My pain has become a constant part (without meds) of my life.

Thanks,

Cathy In MD

4

I'm sorry you seem to have seen some doctors who don't have a clue. I hope you manage to get your pain under control soon.

5

Cathy, if your chronic facial pain is actually due to neuropathic mechanical damage during dental work, then you may be considered a less likely candidate for MVD. Some neurosurgeons may take you on for an RF Rhizotomy, but even that is a long shot unless your pain includes as a component, volleys of electric-shock stabs of pain, with quiet periods between the volleys. My personal advice would be to avoid Gamma Knife or Balloon Compression, as neither one does well with neuropathy patients, and both have a poor record of pain recurrence. You'll also need a high-resolution FIESTA MRI procedure as part of your workup, to look for evidence of vascular compressions of the Trigeminal nerve.

Go in Peace and Power

Red

6

I am so sorry, Cathy. Somehow, bastards make it into positions of power… Don’t give up. It is easy to say, but know that on this site, we understand and support you with every depth of the word.
I am in a similar situation in that I have other pain as well, and I know it is likely to get worse, because it is all neurological. I am not finding medical relief, and this week has been particularly annoying. BUT: Have you tried anything topical? I just discovered the capsaicin (chili compound), truly. I bought a cream on ebay, and as it seriously burns in the beginning, I couldn’t apply it undiluted until yesterday. But boy, truly amazing stuff!
I am currently on Tegretol (TN1) and nortriptyline (ATN),but everything triggers me, and the meds only help unprovoked pain for me. Capsaicin completely blocks the pain, and it is a fairly long-lasting effect too, at least 3-4 hrs. Today was really bad, thought I had to go home from work or take an emergency codeine, but poof - gone, with only the shadows/aftermath sensations left… True story. Give it a try. Here in the UK, they sell it as a pain reliever in the pharmacy.
If capsaicin does not cut it for you, there are other things to try, always. It is probably good to get a referral to a pain spesialist sooner rather than later, especially with multiple pain conditions.
Also, rest assured the screening at the detox place will determine if you truly need detox!

7

Ouch! I am so sorry that you have had all these issues lately. I too suffer from migraines though I have never had them last so long. My neuro has given me steroid injections in my occipital nerves which has helped with the migraines somewhat. I hope by now your suffering is less. Hugs my friend

8

Thank all of you! This really is the best site ever. My migraine broke, of course as soon as I got a prescription for prednisone, so I didn't need to use it. I spoke to my pain specialist, who told me that doctor's needed to stick to their own fields, which made me feel much better. I also had a Rhizotomy done on my neck, which has been a big help. I really love my pain specialist!

Red: I am looking into finding out if my insurance will cover one of the TN specialists at University of MD. I think I am only going to have the option of Hopkins, which will mean a very long wait time but it is a great hospital but at least I'll know if I am a candidate for any procedures.

Tineline: I have never tried any of the creams other than a prescription one that I was given. Another person on the site has also suggested something else but it is very expensive. I have seen what you are referring to over the counter at the pharmacy. FYI - The doc felt that I needed detox because I had a migraine even though I was taking pain medications. She would not allow me to explain that I occasionally get them in cycles, regardless of what I do or what I am taking. It just happens.

Again, thanks to the best group out there, I'm so glad I found you!

Cathy In MD

9

Thank you Mary :)

Mary said:

I'm sorry you seem to have seen some doctors who don't have a clue. I hope you manage to get your pain under control soon.

10

I dont know your entire story but from what I have read sounds like we have a similar story not sure whether or not dental procedures caused my pain. My severe migrane headaches were a constant for months straight i had to quit my job of 10 years. Have Trigeminal neuralgia type 2 also known as atypical face pain. I lost everything even myself. I tried anti sez meds which intensified my pain. With much research from what I read on this website I knew to ask for nortriptyline a tricylic anti depressent. 75 mg a day. I live the closest thing to a normal life I workout, hang with friends again,I have happy days. My disease will always haunt me but I am thankful for each day I am not in pain. Feel free to friend and message me if you have any questions!!

11

Thank you for your response! For reasons that I don't quite understand, they will not give me the tricylic antidepressants. It may have something to do with drug interactions with other drugs that I have to take for my Connective Tissue Disease. I get these periods of such horrible pain that lasts for weeks, especially during this time of year when the weather changes. I know what you mean when you say you lost everything, I am in that process now. I had to leave my job, I've run out of money and will no longer be able to make my mortgage payments. So, next, I will lose my house.

I am currently taking narcotics, which do help, but on really bad days, nothing helps. The connective tissue disease, which I am actually going to go get a second opinion on, because I think I actually have Lupus, causes arthritis, so I also have pain all over my body. Narcotics don't help that.

I have applied for disability, wow, what a process. I'm still waiting to hear.

12

i tried for disability twice and got declined twice. Im sorry I lost my house too but I was underwater with it to begin with so glad things worked out the way they did. I live in a nice apt now and dont have to worry about the stupid lawn being cut. lol I now work for myself have my own business vs my serving job that I had for 10 years..,was really burnt out. I want to believe things happen for a reason. Not sure about your connective tissue disease. Sounds like fybromylgia. I really hope you get outa pain soon. Hope you can find a way to try this med. I would def ask the doctor why they wont give it to you.

13

Cathy I am so sorry for your situation. The only words of encouragement I can offer is that you are not. My illness, like so many others, started with dental procedures i did not need. Fortunately, I live in an area with excellent doctors who unfortunately, have tried just about everything over the past four years. I am in pain or waiting for pain. There is nothing else. The psychological damage and severe depression that goes along with this disease is some days unbearable. I have lost everything I spent my life building, creating and sharing.

The migraines an TN go hand to hand. I find that if the migraines are triggered by pain, unless you dull the pain, you won't cure the migraines. The Opiates for pain actually help cause migraines so it is important to know why you are having a migraine. Weather is a huge factor in predicting migraines as well as side effects from other medications. I take Maxalt for Migraines but if the pain is too strong I like to deal with that first. I find that creating an very cold, dark and quiet room works best for me. I go in to my quiet place and practice breathing exercises and try to see what happens. My migraines are 15-25 days a months lasting four hours or longer. I have had Botox treatment for migraines twice. I wouldn't say it does the trick but there is a reduction in severity and length for a few months. It is not a cure. There is an electromagnetic pulse that just finished clinical trials. You take the unit home but it can be pricey. You have to find what works best for you. Diet, overall health and your ability to have quiet time come into play.

I have been on Disability for almost four years waiting for my final trial with Social Security and then I am done trying. A cavity anytime in the next decade can destroy me. As I am not one to take my own life, I plan to move away from the city I love to a remote area in Northern California, way, way North. I just want to be left alone, away from people, to suffer quietly with my dogs. I am a single dad with two teenage sons in college so it's very hard. I have had several surgical procedures, take over 5,000 pills a year and have had over 150 doctor and dental appointments to try and fix this misery I call life.

I take 6-8 10/325 Percocet a day along with Lyrica, Nortriptyline, Xanax, Zoloft and oh so much more. My RX is for 180 Percocet a month over the past three years. My tolerance is very high but it is all I have to manage the burning, gnawing, frozen, stabbing pain. My Internist and Pain Specialist know I just cannot stop taking the pain medication. We all know, if the pain ever starts too fade that I am an addict by design under my doctors case. If that time comes, i will need rehab and help to clear my system from opiates. It comes with the diagnosis. I tried medical marijuana which helps the boredom of being home alone all day.

I have been cleared for ketamine infusion therapy for 30 days but am holding off. I have become anemic over the past year which just makes everything worse. Hang in there. We are all here to help.

I know these are not the best examples of hope and support but again, you are not alone.

14

Richard,

I just sat here and read your post and cried. It felt like a beautiful, but sad love song. It felt like you really get what I am feeling! We have had a drastic change in our weather here and I am been in really bad shape for a few weeks. Fortunately, things are starting to even out a little bit.

I'm packing up my house now so that I can sell it. It's been over a year and a half since I've worked. I filed for disability but everyone tells me I'll be denied. Right now I'm living off of my 401K money and paying the high taxes that go along with taking it out early. I often feel like I'm fighting for my life.

I do have some good days but like you said, there is a constant fear of the pain starting. The depression is horrible and I have found that I have isolated myself as well. My Connective Tissue Disease causes pain throughout my body and there are days when I wake up in pain and the very thought of moving is scary. Other things that come along with that too.

Thank you so much, you are so spot on.

Cathy In MD

15

Cathy, have you consulted with a different neurologist? I get migraines and have TN2. My neuro suggested botox injections. They are effective with some types of migraines AND he said they are finding it is effective with some TN pain too. My insurance covers it… There is another poster on here I talk with that has been receiving this treatment for two years now and it has been a lifesaver for that poster.

16

Lisa,

No, I have not. I live near Hopkins and will be seeing someone there. The problem is the time it takes to get an appointment. I admit, my neurologist didn't even know that there were different types of TN. He diagnosed it AFTER I told him that my pain specialist had diagnosed me. He did however, do more testing than any other neurologist that I had ever seen before in the 30ish years that I had been looking for answers. I gave him a lot of credit for that! I am open to anything that would give me my life back.

Thank you,

Cathy In MD