Med. Help for ATN/Migraine Symptoms

I am at a cross road with my medication. I have been on 60mgs Nortriptyline and it is becoming increasingly ineffective. I tried to increase it and couldn't handle it (constipation, bloating, severe agitation and anxiety). So bummed out.

My ATN is bilateral and has spread to V1 on my left side. I get these severe attacks with many migraine symptoms that last a few days at a time--swelling, tearing, blurriness, tingling and burning on temple, around eye, forehead and nose, nausea, a bit of dizziness and a sharp, stabbing pain like a spike through my eye. I am also getting shocks in all three branches on my left. I never had that before. They aren't really painful but they are increasing.

My main concern with medication is gaining more weight and being so foggy headed. I have gained 15lbs in the two years with Amitrip. then Nortrip. which I am fine with honestly. That is enough though. And I notice that I can't concentrate and complete tasks. Also lose thoughts and words all the time. I am in business and need to be able to think!

My neuro wants me to try Gabapentin. Wondering about Tegretol, Topamax and Triptans. I know we are all so different but any suggestions are welcomed.

Thanks all!

Triptans are an abortive for migraines and they shouldn't be used on a constant basis, otherwise they put you at risk of rebound migraines. They're also quite pricey. How frequent are your attacks? If the attacks are migraine related and they happen less than 10 times per month, then triptans might be a good option.

I take Tegretol and it works really well for me. I am lucky, though, because some people with my type of pain (constant, non-episodic) don't get any relief from it. It has a lot of drug interactions with common medications, such as making birth control less effective, and often requires blood tests to monitor for drug levels and side effects. Classic trigeminal neuralgia is the only condition where it's still considered the drug of choice, because its effectiveness outweighs the risks of side effects.

Gabapentin and its successor, Pregabalin, are probably the medications that are used the most often for neuropathic pain these days. Unlike other anticonvulsants like Tegretol, it doesn't have many drug interactions, doesn't tend to cause serious side effects, and doesn't require monitoring of blood levels. Many people do find relief with it. Grogginess and weight gain are possible side effects, however.

You may be wanting to go on Topamax because of the weight loss side effect. However, I can tell you that it's not always a great medication. The weight loss can actually swing too far and you lose your appetite and enjoyment of food. It's also been nicknamed "Dope-amax" because of the severe effect on cognition. I personally wouldn't want to go on it, although I'd be fine with losing a few pounds too.

P.S. I am a pharmacist but I don't know the full details of your medical history, so this is just general info. I hope you find it helpful but take it with a grain of salt.

Thank you for your reply. These "flare ups" that I have been getting around my eye happen only one to two times per month lasting one to five days for the past five months..one always the week before my period. I am looking at Tripans bc it is only used for the migraine or flare up. I would love to just be able to treat each individual attack instead of taking something everyday.

I would like to try Tegretol as it is a first line treatment (I know more for Type 1) and it was never tried. Yes, I am worried about weight gain with Gabapentin. Also if I did try one of these I would like to try to ween off of Nortrip. I would like to try to find relief with one med. I am not willing to try Lyrica at this point. I already did a year ago and I didn't last a week.

Topamax does seem to be a bit dicey. Certainly the weight loss would be great but it is not my main motivation right now...I just want to do what I can not to gain more. I eat well within my caloric limits and walk/run often so I shouldn't be gaining weight.

It is good to hear about other peoples' personal experiences with these meds. I am being a bit stubborn with things right now. I am sick of the side effects and I can cope with my pain...researching thoroughly this time before making a move.



toothache said:

Triptans are an abortive for migraines and they shouldn't be used on a constant basis, otherwise they put you at risk of rebound migraines. They're also quite pricey. How frequent are your attacks? If the attacks are migraine related and they happen less than 10 times per month, then triptans might be a good option.

I take Tegretol and it works really well for me. I am lucky, though, because some people with my type of pain (constant, non-episodic) don't get any relief from it. It has a lot of drug interactions with common medications, such as making birth control less effective, and often requires blood tests to monitor for drug levels and side effects. Classic trigeminal neuralgia is the only condition where it's still considered the drug of choice, because its effectiveness outweighs the risks of side effects.

Gabapentin and its successor, Pregabalin, are probably the medications that are used the most often for neuropathic pain these days. Unlike other anticonvulsants like Tegretol, it doesn't have many drug interactions, doesn't tend to cause serious side effects, and doesn't require monitoring of blood levels. Many people do find relief with it. Grogginess and weight gain are possible side effects, however.

You may be wanting to go on Topamax because of the weight loss side effect. However, I can tell you that it's not always a great medication. The weight loss can actually swing too far and you lose your appetite and enjoyment of food. It's also been nicknamed "Dope-amax" because of the severe effect on cognition. I personally wouldn't want to go on it, although I'd be fine with losing a few pounds too.

P.S. I am a pharmacist but I don't know the full details of your medical history, so this is just general info. I hope you find it helpful but take it with a grain of salt.

It sounds like you've done your research. :) I'm sure you know this already, but a lot of these medications can take 2 or more weeks to start working. The side effects also tend to be more severe when you first start them. Consequently, it can feel like you're only taking a useless pill that is causing unnecessary side effects when you first start, but it may start to get better after a few weeks and actually help you tremendously in the long run.

FYI, the weight gain from gabapentin is reported to be an average of 4.9% of body weight, but you may not gain any weight at all if you're careful. The Neurontin monograph states than 2.9% of patients on it versus 1.6% of patients on placebo experienced weight gain. Hopefully you'd be part of the 97.1%. Most doctors prefer it to Tegretol just because of the superior safety profile, but it did not work for me and Tegretol did.

If your doctor decides to try you on a Triptan, ask if you can get a sample first (unless you have good insurance). They are over $10 per tablet.

I hope you get good relief from your pain soon.

I am very patient with increases or starting a new med and know that the side effects can lessen after a few weeks...it is just making it through those weeks! I do have permanent side effects with Nortrip. besides the weight gain--dry mouth, constipation, lack of concentration and foggy head. That increase from 60mgs to 70mgs was pure hell though...way stronger then I have experienced with it or Amitrip. before.

Do you know if weight gain is more common with Nortrip and Amitrip then it is with Gabapentin???

Oh! and I just called my pharmacy to see about the prices of Tripans and you weren't kidding that they are expensive. I live in Canada and own my own business so I don't have coverage. It is such a shame that $$$ has to be part of the decision with my health.

Tegretol is working well for my ATN pain. Topomax was working in the past for my migraines and then the ATN, but I lost 72 lbs in a year which worried me.

I am on gabapentin which helps for the TN1 pain. It decreases the TN2 but does not control it. Waiting to see a new neuro.

Last time around, two years ago, it took adding trileptal.

Right now the gaba helps the tn1. And oxy helps the tn2 with the blinding headaches I get.

I have lost weight. Likely from the oxy. I just don’t get hungry.

Glad that Tegretol is helping you :) seems that Topamax has a bad rap. I was interested in it because of the migraine type pain that I am getting.

saoirse said:

Tegretol is working well for my ATN pain. Topomax was working in the past for my migraines and then the ATN, but I lost 72 lbs in a year which worried me.

Let us know what your new neuro has to say Lisa. Oxy is oxycodone?

Lisa (iamrite) said:

I am on gabapentin which helps for the TN1 pain. It decreases the TN2 but does not control it. Waiting to see a new neuro.

Last time around, two years ago, it took adding trileptal.

Right now the gaba helps the tn1. And oxy helps the tn2 with the blinding headaches I get.

I have lost weight. Likely from the oxy. I just don't get hungry.



justjane37 said:

Let us know what your new neuro has to say Lisa. Oxy is oxycodone? And what are your headaches like?

Lisa (iamrite) said:

I am on gabapentin which helps for the TN1 pain. It decreases the TN2 but does not control it. Waiting to see a new neuro.

Last time around, two years ago, it took adding trileptal.

Right now the gaba helps the tn1. And oxy helps the tn2 with the blinding headaches I get.

I have lost weight. Likely from the oxy. I just don't get hungry.

Yes. Oxycodone. Not my favorite option but it saves me.

2.5 years ago I had my first episode. Lasted about nine months and then I was able to ease off my medication. I was pain free until December. My neuro retired and due to some insurance issues that have now been solved, I have had a heck of a time getting to see a neuro. No one should feel as excited as I do to see a neuro! Lol.

I think weight gain is more common with amitriptyline from my own observations, but not sure about nortriptyline. I don't have any hard data about that, and you'd have to do head to head trials to compare. $$$ is a big factor in healthcare decision making, not just on a personal level. Insurance companies, the government, hospitals, and health care providers all consider money as a big decision making factor.

I tried low dose nortriptyline (10mg) for a while last year in addition to Tegretol. I didn't notice any difference compared to Tegretol alone so I stopped. I actually did gain some weight while on Tegretol, but that is because I lost quite a bit of weight while my pain was uncontrolled. The side effect that I notice the most is some slight loss of coordination - my fingers sometimes twitch oddly when I'm typing on my smartphone. I also sometimes mess up words when speaking too quickly. Currently, I'm taking 200mg twice a day.

justjane37 said:

I am very patient with increases or starting a new med and know that the side effects can lessen after a few weeks...it is just making it through those weeks! I do have permanent side effects with Nortrip. besides the weight gain--dry mouth, constipation, lack of concentration and foggy head. That increase from 60mgs to 70mgs was pure hell though...way stronger then I have experienced with it or Amitrip. before.

Do you know if weight gain is more common with Nortrip and Amitrip then it is with Gabapentin???

Oh! and I just called my pharmacy to see about the prices of Tripans and you weren't kidding that they are expensive. I live in Canada and own my own business so I don't have coverage. It is such a shame that $$$ has to be part of the decision with my health.

One thing: trileptal had no noticable effect on cognition with me. Tegretol destroyed me. I do mix my words up on gabapentin. As an attorney, this is NOT a good trait to have. I do a lot of courtroom work and it can be horrifying while making oral arguments. I have to be conscience of slowing down my speech.

I am on gabapentin trileptal clonazepam desiprimine and IMITREX which is the lifesaver. At least for me. I recommend IMITREX for migraines.Although similar the migraine pain and TN pain are distinct, but I get migraines with ongoing TN and when I reach the melting point< itake an imitrex and POOF. Truly a wonder drug for me

I mix words up all the time too....especially when reading to my daughter at night. She thinks it's hilarious. Me-not so much!

Lisa (iamrite) said:

One thing: trileptal had no noticable effect on cognition with me. Tegretol destroyed me. I do mix my words up on gabapentin. As an attorney, this is NOT a good trait to have. I do a lot of courtroom work and it can be horrifying while making oral arguments. I have to be conscience of slowing down my speech.

hi jane.Im on nortriptyline 100 mgs,im meant to take 75 mg but upped it myself.I have very dry mouth with it.The other issues like lack of concentration has eased off and i feel relativly normal in terms of 'mental awareness' lol. The weight gain was around 1st for me but then i gave up the smokes too,so that will contribute. I went to see a neurologist today,he has stopped all pain relieving meds except for nortriptyline,and wants me to keep a 'headache' diary for a month.If the pain persists then he will do a nerve block or botox.The issue with burning mouth and pain in my mouth is apparently 'nerve damage'. Does nerve damage cause ATN.................

justjane37 said:

I am very patient with increases or starting a new med and know that the side effects can lessen after a few weeks...it is just making it through those weeks! I do have permanent side effects with Nortrip. besides the weight gain--dry mouth, constipation, lack of concentration and foggy head. That increase from 60mgs to 70mgs was pure hell though...way stronger then I have experienced with it or Amitrip. before.

Do you know if weight gain is more common with Nortrip and Amitrip then it is with Gabapentin???

Oh! and I just called my pharmacy to see about the prices of Tripans and you weren't kidding that they are expensive. I live in Canada and own my own business so I don't have coverage. It is such a shame that $$$ has to be part of the decision with my health.

Hi JustJane37,

I have similar symptoms to you but it’s on my right side and only the V3 branch. I was diagnosed with complex migraines which are stroke like symptoms and experience these migraines weekly or daily depending on my environment because aircon is a massive trigger for me and I also work in business. I have a cloudy mind and lose my words even my words move when I read. I also suffer TMJ and have middle ear issues. I was diagnosed 2 weeks ago with TN and refused the seizure meds because there is no cure and from what I have read they either last a few months then your back to pain or don’t even work at all not to mention the bloody side effects and damage the meds are doing.

I see an Osteopath that manipulates my muscles and boy are they tight it’s very painful but I believe it will help me. I have been requested to get a angiogram test and I also take Powerstrips which is a patch I apply to the back of my head and around my ear for pain relief and helps me sleep at night. I also take Solarstrips which give me the all the nutrients I need each day and haven’t taken endone or tramadol for weeks but only take them if the pain is excruciating. I also can’t take the meds because I am trying for a baby and the meds are known to kill foetuses and obviously can’t risk it & operation is out of the question.

I really feel for you and the more u become aware of this condition and how it effects so many people who are suffering I’m trying all this stuff to give people feedback.

Take care xxoo

Oh, I read topamax has weight loss as a side effect. When I saw

My doctor today, he wants to add it to the mix for me in two weeks. My bff had to take several pharmacology courses for her degree and when I told her we were adding it, she said, "well you should get real skinny."



Dilemma1981, that is the second time that I read on a thread where you said the pills do not work and poison people. That statement is blatantly false. The pills work for a majority of people. 3.5 years ago they placed my TN in remission. It is true tegretol has effects on or can have effects on your liver and you must be monitored. But the others are safe and help give people a quality of life. Gabapentin is why I can still work, let alone in my demanding profession.



I looked at the powerstrips you are choosing to use. I personally stay away from mid level marketing pyramid scams with no science behind them. I don’t know how a piece of KT tape with red ginseng is going to rewire my pain receptors and I could not find a piece of literature anywhere that could tell me how either. I googled and could not find one testimonial other than the company approved ones. And there was no FDA approval for use as you described. I think it’s great if it is helping you. But one thing I have learned with this disease is everyone has a snake oil idea. And 75.00 for some strips with no science behind them seems a steep price.



That said, a member named erin is into homeopathic remedies that help her. If your strips stop working, you might contact her as she has some ideas she swears by.

I saw my neurologist today. He spent over an hour with me. I told him that I am having a really hard time with the thought of adding an anti-convulsant to the mix. I am on 60 mgs of Nortriptyline and wish I weren't even on that. That I am two years in with this and have no answers and no direction. He was really great. He said to me "well I will make you a deal--you won't leave this office today until we have a plan and I answer all of your questions."

He has already diagnosed me with ATN. He said that the symptoms around my eye sound like a cross between migraine and cluster. That he has other facial pain patients with similar attacks. He is ordering another MRI/MRA at his hospital. This will be my third one so I am not even nervous about it. He said he expects it will be clear.

We discussed Triptans (Imitrex) I have high blood pressure so he said he wouldn't prescribe them to me at this point. He wants me to try Propranolol which is a beta-blocker that is used for migraines, high blood pressure and anxiety. I am to take that every day. And then he prescribed Fiorinal to take as soon as the pain starts to come on (it is aspirin and butalbital which is a barbiturate). I will only be able to take that at home around bedtime...I work full time and have a young daughter. I need to be able to drive. And thirdly he gave me Maxeran for the nausea I get with these attacks.

He said we will leave the Nortrip. where it is and see if any of this works before we tackle anything else. I feel much better after this appointment. It's a start anyways. Sometimes it helps just to have someone that is willing to help right. We will see I guess...

Hi Jane,
Happy to hear you have found another alternative with the meds and hope they give you relief and to help you get on with your day.

I understand you are trying to find a balance with the meds and support the decisions you make to help you through this.

I wish you all the best with it and look forward to hearing your updates.

Hi Lisa(iamritght) I don’t think it’s fair that you make those statements about the powestrips I take because for one it is not a pyramid scheme and you making assumptions on something you have not even tried and putting the one thing that helps me and so many others down. This forum is about sharing information and giving people support and strength so I would appreciate it if you would respect my decision to take this because obviously I can’t take these meds you all take so I have to find other alternatives and will be having a angiogram next month to test my blood vessels.

I am more then happy to have a further conversation with you not on JustJanes post.

Thanks & take care xxoo