I know this is crazy to give a go at a new neurologist but I’ve never been keen on my current one. Living in northwest New Mexico is sometimes like living in the middle of nowhere. I hate having ATN because it’s like living in the land of no hope of ever having a pain free day again. I have learned to survive the really bad days and enjoy the pretty good days. I’ve some questions for you all as I only pop on everyonce in a while so I’m certain I’m not totally up to date on things in the ATN world and hopefully you can give me some good questions to ask my new neurologist. Currently I’m on Oxcarbazipine, 50 mcg of fentanyl via a patch, 2 mg if dilauded when needed, medical marijuana and nuerontin. I’m allergic to Tegretol which worked great . I also use lidocaine in a nose spray which helps my burning pain in my nose but does nothing for the ache along my upper cheek bone area. I also experience dizziness and balance issues that I’m pretty certain are not a result of my ATN. I thought that the oxcarbazipine might be the cause but when I tried to reduce the dose this summer not only did my pain level skyrocket it did nothing to help those issues. So I will address them with my new neurologist. I could never get my old neurologist to take the dizziness and balance issues seriously even though it causes me to fall an average of firmer times a month. Now back to my ATN, what questions would you all suggest that I ask my new neurologist? I appreciate all suggestions.
How many patients with ATN has she treated?
What is the most successful treatment a patient has tried?
Make sure your concerns are taking seriously… I had a concern with my right arm going numb with a migraine on a fairly regular basis, for more than seven years no one cared. I moved to a different state, found a different neuro, told him about it, watched his face blanch, he did additional tests on me right then in the office and told me that was a forewarning of stroke and if it happens again go to the ER. He put me on one 325mg aspirin a day and my arm hasn’t gone numb again in 23 years. Problem solved in less than five minutes during one office visit. So, make sure you’re taken seriously.
- You may want to consider explaining you’re looking for new doctor because your pain is not responding as well as you think it could to treatment and your old doctor didn’t take you seriously, you need someone to really help you at this point.
As a side note, I have ATN as well and I have found that the lidocaine patch does miracle-level things for me. You may want to try that along with the nose spray.
Another thought for you – gabapentin (brand name neurontin) tend to work as a booster for other meds, making them work better. Maybe try an increase in gabapentin?
I take gabapentin and nortriptyline combo for ATN. Neurosurgeons say TN because I have compression. Anyway, 600 of gabapentin and 40 of nortriptyline work well for me. I have the boring, crushing pain along with the shocks.
Those are great points. Thank you. I will take them along with me. It also reminded me to discuss my poly nuerapathy. So far no cause has been discussed with me. I had a Whipple Procedure done in 2005 due to a non cancerous growth in my pancreas and became a type 1.5 diabetic (due to the removal of part of my pancreas) in 2014 but in 2016 my blood sugar went back to normal so diabetes doesn’t seem to be the cause. I am really looking forward to this appointment as I’ve been so frustrated with my neurologist I had been seeing. I’ve always felt she doesn’t really listen to me and plays down my symptoms.
I’ve not used a lidocaine patch yet. I’ll give that a go. I’m not certain that I can go up on the gabapentin. I also have Bipolar 2 and when I was on 900 mg three times a day my psych doctor thought that it somehow interacted with my other meds to cause a major hypomania problem that hospitalized me. They dropped the dosage down to 400mg 3X’s a day at that time. Now I’m back up to 600 mg in an attempt to help control the ATN and fibromyalgia pain.
I’ve been on and off nortriptyline since I was 29. I can’t take it now that I’ve been diagnosed correctly with Bipolar 2. When I go on antidepressants I have to be careful and can’t be on them longer than 4-6 months at a time because they trigger my hypomania during the summer. For a time we tried amitriptyline for my ATN but my body can’t deal with it. Along with my ATN I periodically have signs of TN1 with severe shocks. But my daily issue is the constant burning along the nose and aching along the cheek bone. I dread this time of year as instead of a daily pain level of 2-4 it is 4-6 upon waking with several days a week of 6-8 or higher. I know you all can easily relate.
glosmenagerie, that is interesting that you also had long-term nortriptiline use. I was on tricyclics (primarily amitryptiline and imipramine) pretty much continuously for 35 years. My ATN started up immediately after I tapered off the drugs. I think the tricyclics and withdrawal created my ATN somehow. But I’m stubborn and no way I’m going back on those drugs. Keep your chin up and try to find relief however you can. Hope the new neurologist works out for you.
Do you have migraines? I know that vertigo is a migraine symptom but mine doesn’t happen when I have a headache just at random times. Doesn’t matter if I am sitting, standing or lying down.
I started having migraines when my menstrual cycle began when I was 12. If I knew how problematic my cycle was going to be in causing my migraines I would have pushed to see if I could have a hysterectomy in my late 20’s or early 30’s. I averaged about one to one and a half weeks migraine free each month during my 30’s. I went through early menopause in my late 30’s and finally by 44 I as cycle free and migraine free. It was great. I dropped to only having 4-7 migraines a month. When I was in my early 50’s I was visited by pain on my left side that acted sort of like a migraine or a sinus infection without any build up on the left side right where most of the migraines I had. I have had migraines on the right side but most were on the left. Unfortunately none of my migraine medications worked for this pain. Eventually I was sent to an ENT who listened to my symptoms and said I can tell without checking your sinuses that you don’t have a sinus issue you have Tic Douloureux. I had seen that mentioned when desperately trying to figure out what was causing such severe pain I could not stand it. However I read it was sharp shocks not the continual burning, aching and when things really get going stabbing pain. I was then referred to a neurologist and it was confirmed I had Trigeminal Neuralgia type 2. I’m not certain that being on tricyclics caused it. I wonder if the nerve was damaged more by my severe migraines over 30+ years. It’s a bit of a mystery to me. I may ask the Lord when I get to heaven after the many other things I’d like to ask him.
As to my vertigo being caused by my migraines, I suppose it’s possible. However I’ve only been dealing with it for the last three years. I just know I’m tired of losing my balance and falling or bouncing off of walls. I drives me bananas.
I didn’t realize that I had migraines when I was in my 20’s, I just thought they were sinus headaches and never saw a doctor regarding them. They went away for many years but have come back. I have facial pain in my sinuses besides the jawline pain but am now wondering if they are connected. I need to see my neurologist soon I guess. As far as balance, I have never had good balance so I don’t know what that’s about and my first neurologist didn’t/couldn’t answer that.
I know, I have questions too
Glos – I’ve had nuerologically complicated migraines for 30+ years, averaging a migraine a week for the majority of my adult life (each migraine lasting an average of 3 days). After 20 years or so I developed ATN. Could it be from the blow to the head I had that one time? Maybe. But more than likely it’s from all migraines over all those years – that’s the working theory anyway, and what my neuro says is the ancedotal reason for the ATN. She has two other people in her practice that are just like me.
ATN apaers to be a horrible, horrible secondary condition to chronic migraine. The connection is just now starting to be made.
Hi Glosmenagerie - just some left-field ideas for you: could it be a B12 issue? B12 deficiency causes ataxia (unsteady gait) and balance problems and I see you have had some gastric surgery which can cause B12 deficiency. You’re missing part of your pancreas, yes? That may also be causing a malabsorption issue. Also you seem to be on a lot of meds - they could contribute to a low B12 count. If you haven’t had it measured recently it’s very easy to do, a simple blood test form your GP. It would be worth it to check. Lastly, is it possible you might have coeliac disease? That causes ataxia in some people. In fact, in some people it’s the only symptom. Again, it’s a simple blood test to check. As an added bonus, coeliac disease can cause neuropathic pain and mental health problems (it can actually cause schizophrenia). Lots of people go undiagnosed for many years so if you’ve never had it tested, it’s worth a shot. If you turned out to have it, it might cure a lot of other problems for you once you started treating it. Best of luck!
Thanks for the ideas. My PCP for many years tried to see if my poly neuropathy was caused by B12 and I took shots between once a wee to once a month for several years trying to slow it down to no avail. She passed away this past year. When my PCP of a few months tested my B12 my liver had stored enough to keep me at normal. So shots have been discontinued. I’m on my second PCP since my long time one passed as the first left the practice I chose. I got lucky and I really like the replacement to him. I do have Vitamin A, D, and E deficiencies which I take prescribed heavy duty vitamins for as well as sodium deficiency. I will begin the B12 shots again once my stored levels go away. My Whipple Procedure really did to a number on my body that wasn’t followed well for years. My trips to the gastrointerologst were numerous and diagnosed as IBS eventually after weight loss that was on its way to anoerexic. I did some research and finally asked the gastroenterologist to check pancreatic enzymes. I have virtually none. Finally I was put on pancreatic enzymes with meals and am back to a low healthy weight. But the neurological symptoms seem completely apart from my malnutrition. I sometimes have to remind myself that I’m not a disease or just a patient at times. I have more specialists than I wish to have and each day I wake feeling good is a blessing.
Those issues would certainly impact on the nervous system; it’s a wonder you’re still walking. I can only say again, coeliac (celiac in the US) is worth checking if you’ve never been tested for it. It’s amazing how many people with gastric issues/IBS (I’m one of them) are never checked for it, especially when you consider it’s becoming more and more common. Here’s hoping you get a revelation and you manage to sort it out. Very best of luck!
Sorry I forgot to say I was tested for celiacs and it was a no go as well. I lose track of everything I was tested for. I wouldn’t have minded it I had had it because I was literally starving to death slowly. When I got the diagnosis of exclusion of IBS. It was frustrating. Once I was put on creon. I gained weight, stooped having severe nausea throughout the day and stopped being afraid of what was going on in my body. I must admit watching myself drop from 185 to 115 over two years when I wasn’t trying to lose weight really messed with my head. The Whipple procedure was done 14 years ago but no one thought to deal with the fact I didn’t have the enzymes to digest food. Such a simple fix. I still have to watch for malnutrition but I can eat again
I just thought I would give an update as to how my appointment went with the new neurologist. I think I really like the doctor. He took me seriously regarding all issues, which was amazing! He told me that he really thought I should get a second opinion on the potential to be able to have gamma knife to “stab” my trigeminal neuralgia into submission. (Just kidding, I know it doesn’t work that way.) I had been told several years ago shut down by three surgeons that I could not have any of the surgeries available for trigeminal neuralgia because mine was a atypical. This neurologist thinks that I actually have a mix between the more normal presentation, because I do get the shocks periodically” as well as just have this continuing atypical presentation with pain that never goes away. So a referral to Mayo in Phoenix it is on its way. The best thing for me in looking at doing the gamma knife is I can get off a ton of medication that I’m on. The best on that front would be getting off of the Fentanyl patch and the dilauded. Don’t get me wrong, I’m so grateful to the fact that I can get prescribed opiates through my pain specialist because prior to that I had no life. It was inside my house try to deal with the pain as best as I could. And as you all no, that’s no way to live. He also told me that much and my dizziness is probably caused by all the medication because as we know these meds are messing with our brains to confuse the pain. But in regards to the balance issue with the numbness in my feet it is going to take further testing that I’m scheduled for in December. Thanks everyone for your help and support! Any thoughts on the gamma knife ?
That’s great that you had such a positive consultation. Here’s hoping this is the starts of path to recovery for you!
To you all. I bless your strength each and every day. Have severe ATN for 8 years now. After 10 Drs, pain clinics, hospitals, and yes even dentists and every drug listed above, and more, had a great neurologist put me on low dose oxycodone. I WAS NORMAL for 4 years! Only side effect-constipation which was fixed in 10 days taking Miralax.
Then it happened:the fake opioid crisis. You all propably know the rest:Legitimate narcotic patients were made out to look like junkies and many of us had our medication taken away. Reality check-less than 2% of pain patients actually become addicted, dependent yes, addicted no. Personally I also was not addicted. Dr. sent me to rehab cause he stopped prescribing any opiates due to the new regs.
Guess what, this junkie took all of 4 days to come off oxy.
Addicted, Not. Then in 1 week the ATN returned in full. Had to quit working, take 4000mg tylenol 3000mg advil. Not a dent.
Here is the thing folks-When these new laws (regs) passed the hippocratic oath was thrown in the garbage.
“First do no harm” “I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.” Doesn’t mean, “Oh this office no longer prescribes opiates.”
Never give up fighting our “Suicide Disease”.
I totally agree with everything you just said, Larry. The stupid “addict crisis” has really hurt a lot of folks in need of opiates for pain. Not only that but if one goes to the ER for anything the first thing that the ER docs want to do is take that person off of needed medication. It’s like the ER docs think that they know more about treating folks than doctors the patient has been seeing for various medical issues. I had an extreme manic episode several years ago that landed me in the ER and put me in the hospital for several tormented days. The ER doctor decided to pull me off of my dilauded, oxcarbazipine, neurontin, baclofen, clonazipam and ambien. I already had not had more than 6-7 hours of sleep in the previous 3 days. Going through withdrawal for the next two days dropped me down to no sleep. I was never so thankful to see my psychiatrist come and restore my meds. It took another day before I was able to sleep. I truly considered bashing my head into the wall just to get pain in some other part of my body so I wasn’t dwelling on my TN pain. I try to avoid the ER and new doctors because I get the “look” and the comments about my medications. I never ask for my illnesses. I guess doctors have totally bought into the opiate crisis lie. I didn’t ask to be bipolar and have TN. I do however ask from my doctors for help at leading as much of a normal life as is possible. I love spending time with friends, being a CASA volunteer, being active in church, doing crafts, going on walks with my dogs and so forth. All of those things bring me sanity as actives other folks do bring normalcy and sanity to their lives. I’m physically addicted to the opiates I’m on, I know that. I also know as does my pain doc, that I do not abuse the pain meds I’m on. I push my days to taking my rescue dilauded only at night if needed when possible. I don’t get high on the opiates I’m on. The medication issue especially the opiate one way conversation that is going on across the U.S. is frustrating to me. Ah well, all that we can do is try to educate doctors the best way we can. And for me, try desperately to stay out of the ER even if not going could be detrimental to my life.