Nortriptyline?

[misstraci]

Have you or do you take nortriptyline? My neurologist prescribed it for migraine activity on my EEG yesterday. I wasn't aware I was having migraines but apparently.....

I just wanted to see what you thought of this drug.

Thanks

[misstraci]

and on one of the drug descriptions, it says this..... "Like all TCAs, nortriptyline increases levels of norepinephrine and serotonin, two neurotransmitters, and blocks the action of acetylcholine, another neurotransmitter." Now what is it with dysautonomia that "norepinephrine" does? I've heard this plenty of times but not sure I understand it's position. As well, the drug side effects are increased heart rate and low blood pressure....... hello....... now i'm wondering should I even try it.

[SpinnyC]

I had a bad reaction to this drug.

When I was still trying to find a diagnosis a neuro put me on it as a trial for atypical migraines, thinking this was a possible cause for my symptoms.

I tolerated the initial low dose ok but during the ramp up to the therapeutic dose I developed very high tachycardia. I was sent to the ER by another department in the hospital when, at an appointment, they discovered my hr was in the 160's. After evaluation the ER doc told me I was reacting to the drug and to go back on the low dose and call the neuro about how to get off it. For a few weeks after that I had a resting rate in the 120's and ended up having to see my cardiologist because at that point the drug should have been out of my system. My cardiologist said he thought it was definitely the drug and that my transmitters are probably very sensitive... so it was taking a while to get back to "normal". The neuro on the other hand refused to believe the cause was nortriptyline, said it was an uncommon reaction and wouldn't have lasted as long as it did. Although... he and my cardio seemed to be at odds over other things too. Cardio thought I had Pots, and wanted to send me to another neuro who was an autonomic specialist. The neuro who prescribed the nortriptyline heard about it and took my postural vitals on my next appointment. Then promptly told me that despite having a hr that increased more than 30 beats a min on standing... I probably didn't have Pots because my BP didn't go down when I stood up). Turns out the cardio was right about the Pots so I believe him and the ER doc about the nortriptyline too.

I've also had sensitivity to other drugs and my BP usually goes up not down when I stand. (Not sure if those things made a difference or not when it came having a nortriptyline reaction.)

Also I didn't have any documented migraine activity- it was a "lets give this a try" to see if it helps scenario.

I would say to definitely ask your doctor if you are uneasy or unsure about taking it. Maybe consult your autonomic person too if it's a separate doc from the neurologist rx-ing the nortriptyline.

[Batik]

My neurologist prescribed it for migraine activity on my EEG yesterday. I wasn't aware I was having migraines but apparently.....

Could you explain more about this? Do you get headaches of any sort? Do you get the other symptoms of migraine without the headache?

[misstraci]

Oh my goodness SpinnyC. I'm sorry to hear of your reaction. I read that though, I read that tachycardia was a side effect and that is why I'm concered about it a little. See and we start out with tachycardia, we don't want to add to that. Sorry about the reaction and the dr's disagreeing. I'd also go with the cardio's point of view

Batik... Friday before last, I had an episode at work (and then two additional times over the weekend) in which I smelt really strong burning and it felt like everything stopped, I couldn't breathe or swallow and of course I was extrememly lightheaded. I had went to the ER that Friday and the lady said I had a migraine or seizure and to follow up with neuro. So, I wasn't able to see them until yesterday and they wanted to do an EEG to rule out epilepsy. He told me that the results were abnormal but said it wasn't seizure activity but that it was migraine activity, that was the first I've ever heard of that. I do not have headaches. I've never had headaches. He said that you can have migraines without pain ????? Seems odd to me. And I'm not familiar with other migraine symptoms so I'm not sure. I had the "aura", that burning smell. I don't feel nauseated/vomit, none of that. I do have head pressure in the back and that is why he gave me the shot in my neck..... which has not helped yet.

[Christy_D]

My son took it for 5 days as a migraine preventative when he was in the 7th grade. He was an emotional wreck on it. He was crying before school on the fifth day(and he is not a crier) and was crying over something petty after school. The doctor told us to stop it immediately. He has not had any problems with any other medication, but nortriptyline made him so emotional.

At one point, once his migraines stopped, they thought he might still be having 'silent' migraines (no pain but all the side effects..nausea,etc.). They haven't given up entirely on that diagnosis, but no medications have helped.

[Batik]

misstraci - how many of these alleged migraines have you had? As far as I am aware, they don't try people on daily anti-migraine meds unless they get lots of migraines on a regular basis. This all sounds rather odd. Which country are you in? I know that in the UK, the Migraine Action Association are great for talking to about this sort of thing.

[Batik]

Having read through your other thread, it definitely seems a bit early in the diagnostic procedure to be putting you on preventative meds, especially since they still haven't ruled out epilepsy. I'm wondering whether the doctor is trying to diagnose you by plonking you on their pet drug to see what it does to you. I had a gynaecologist do that to me when I was trying to get diagnosed with PMDD (bad version of PMS) once. She wasn't interested in running the usual diagnosis, which my nice simple symptom/period diary would have made beautifully clear. She just wanted to put me on Cerazette, and when I did badly on Cerazette (as do most people with PMDD - she really shouldn't have been handing it out like that), she sulked and decided that I didn't have PMDD after all. Thankfully my GP had more sense, made the diagnosis without trouble, and patiently tried me on meds, working with me and listening to my responses, until she found something that worked. Anyway, my migraines are of the boring variety known mainly for causing pain rather than fancy neuro stuff, and I don't know anything about epilepsy, but I'd proceed with caution here and maybe get a second opinion.

[Zap]

I was put on Nortriptyline for migraines and neuropathic pain. I had the rise in heart rate, blood pressure, etc. It was wonderful for stopping the migraines - but I could not tolerate the side-effects.

Everything came back down after I stopped taking it. Mind you, this was all at 10 mg per day - I am VERY sensitive to meds.

I'm on Propranolol 3x per day now, and that isn't working as well, but it is helping the dysautonomia symptoms. I have separate neurologists for migraine and dysautonomia, and I'd like to consolidate. I want someone who will properly treat me as a whole.

[misstraci]

ChristyD... sorry it didn't work for your son either! I hope something turns up that will help him. Apparently I am having the silent migraine as well.

Batik... I'm not sure how many "migraines" i've had because I didn't know that's what it was, still not convinced. All I know is that the lightheadedness I used to think was horrible is nothing compared to the lightheadedness I've had these past two weeks. It feels as though there isn't much blood in my head. I feel like my head is a balloon and if someone popped it, maybe I'd feel better

I'm in the states and it does seem odd to try me on something for something I didn't know/don't agree is happening. Eww, your gyno did that? That seems so uncool. I've read a lot recently about western medicine/eastern medicine and how the jist of it works and the pharmaceutical companies and their part, swooning the doctors, pushing the drugs who then, like you say, the dr then pushes on us. I promise to proceed with caution. I had my MRI yesterday and of course haven't heard back about it yet, but I am convinced that if I do not have a brain tumor (not thinking negatively but what else could cause such horrid effects on my body), then I am convinced I have lyme diesase!!! Just my own personal thoughts.

ZAP.... Sorry it didn't do right for you either. Looks like this drug is more bad than good. I'm glad the propranolol is helping a bit with your dys symptoms, that is good news! Does your dysautonomia dr know about migraines? Maybe he/she could take that on as well.

[Batik]

In fairness, that gynae was the only doctor I've seen who's tried that route. Though I did once have a GP who, when I said that I had migraine, wanted to put me on the pill to check out whether it was really menstrual migraine. To which the answers were: a) yes, we already know it's menstrual migraine, I've been getting them since I was 15 and the menstrual pattern became very obvious once I gave up dairy at 19; b ) you're not meant to put migraineurs on the pill, it increases the risk of stroke too much. I know that sometimes it's a good idea to put a patient on a drug as a way of ruling out conditions, or for other reasons early in the diagnostic process, but on the other hand, some doctors just aren't very good, I think!

I would suggest hunting down patient associations for both migraine and epilepsy and having a good chat. No idea about the American ones, but the UK ones have helplines. In fact, if you like, you could call the UK helplines. Migraine Action +44 116 275 8317 Mon-Fri 9.30-4.30 GMT. Epilepsy Action +44 113 210 8800 9-4.30 Mon-Fri (and they specifically list the international number, so are evidently happy to take international calls). I have spoken to both and they are good. They also have email addresses you can contact on their websites, and I know that Migraine Action has a really good team of specialists they can ask for advice. If you do try the English places, don't forget to look up the pharmaceutical names of any meds involved, as the brand names aren't always the same across the pond. Nortriptyline is the pharmaceutical name, so you're OK there. It's usually quite cheap to call the US from the UK these days (and far, far cheaper than calling mobile phones from landlines), so I hope it's affordable from your end as well.

I'm posting this at 13:51 GMT if you want to work out the time difference.

[Batik]

Lyme disease? Eastern vs. Western medicine? Are you sure you've not stumbled onto the dodgier websites, by the way? I know there are major problems with all convenational medical systems, no one's perfect yet, but I've heard an awful lot of nonsense talked by people who claim that Eastern medicine is the only way to go. Also there are some conspiracy theories out there about Lyme disease, I'd be cautious there as well. While this particular med may not have been the best one for you, generally it sounds like your doctors are on the right track, and it may well be absolutely normal for things to be rather muddled at this stage. That's why I suggest talking to the migraine and epilepsy folks, they will know far more about how all of this works.

[misstraci]

Thanks for the info and phone numbers Batik! I will definitely give it shot. I don't mind calling internationally. I will also try to look up someone local as well.

As far as lyme disease, I think I'm just trying to prove it to myself that feeling like death and no one knows why just has to have a name. We've ruled out so much, I've had so many tests, yet I have such widepread symptoms, what else could it be I'm just frustrated. I know that both types of medicine have their goods and bads. It just seems like recently that I have read a lot of good things about going natural when trying to deal with an illness, especially a chronic one. The book I'm currently reading talks about the mind and how powerful it is, how this surgeons' patients "willed" their cancer away by thinking positively. Breathing is key, exercises such as Tai Chi and QiGong are supposed to be really good. And of course only the best/whole foods diet. Massage, acupuncture, herbs, etc etc. stuff like that. I'm hesitant on both levels actually. I just want a name for what is causing my suffering. POTS/Dysautonomia is fine but that is not my "disease", that is my collection of symptoms, there is an underlying reason for the condition, I have to find out what it is.

Oh gosh, sorry if i sound like i'm venting. I didn't mean to

[Batik]

I've had ME/CFS for fifteen years, I've tried umpteen natural treatments (which all cost a fortune and almost never helped at all), and I've learned enough by now to be very wary of any book talking about 'how this surgeons' patients "willed" their cancer away by thinking positively.' I know you're feeling rotten and desperate to find out what's wrong, hon, but just because it's hard to identify and may be hard to treat (too early to tell the latter just yet) doesn't mean that orthodox medicine is useless and that positive thinking will miraculously cure you. Complementary therapies can sometimes be useful, but they shouldn't be mistaken for more than they really are.

Do you have any reason to think it's Lyme? Were you bitten by a tick, or lived in an area where tick bites were common? I've seen a lot of people with ME and similar illnesses desperately searching for any other condition it might be, any treatment no matter how shady it may sound, just in the hope that they can be treated. There's a point at which this is healthy, and there's a point where you're just putting all your time, money and emotion into false leads. You sound like there's enough investigation going on right now that you are probably OK with pursuing the neurological route, slow and frustrating as it may be.

In similar venting news, I've just realised that it's probably going to be 2 months at least until I get a 24 hour ECG (Holter monitor), and that my GP won't even try to refer me to a specialist until after that, so it may be 8 months or longer until I even get a diagnosis of POTS, let alone treatment. And right now I am flailing about trying to work out shortcuts too! Pain in the backside, isn't it.

[KevInChester1]

I was put on this ages back to treat ADHD as it is used off label for that purpose. It turned me into a complete wreck, liable to cry at any moment, it also made me yawn a lot (with intense nausea when I did), and made me totally unable to balance on one leg. Not a good medication for me, I came off it as soon as I could.

[misstraci]

Kevin, sorry that your reaction was bad as well, seems like thats the pattern I've seen here.

Batik, sorry you've been sick for so long, I've only been sick for 2 1/2 years and it feels like forever. You're right that the natural treatments tend to get very pricey and are hit and miss. I do hang on to the littlest hope of something that may be my answer. I was bitten by a tick but it's been years ago, however, two weeks prior to when I first got sick, we were spending lots of time at this creek back in the woods, a park by my home. I always keep it there as an option since I have a LOT of the symptoms and no other test is coming back positive. Speaking of the neurological route and the nortyptiline. I called my DR and asked for an alternate but similar medicine. He was very nice about it but was asking why I had the concerns and thought it would increase my HR and stuff like that. I had done my own research as well as asked you guys, I heard nothing positive from either outlet. I told him that I already have a pretty high HR and i didn't need anything that may make that worse. He told me since I was going to look up the meds, he would give me a list and i could choose what i wanted to take, I thought that was very nice. He gave me (gabapentin, lyrica, cymbalta, lemintal, or tegritol) I chose gabapentin. I think I'll start it this weekend and i hope i can see some improvement in the near future.

Batik, sorry that you can't get the appt for another two months. How come it's going to take PCP so long to refer you? I hope it turns out that it happens sooner than later. Fingers crossed for you!!

[Batik]

Gabapentin is used for both migraines and epilepsy, so it makes sense in that respect. It can be quite heavy in terms of side-effects and withdrawal, so do be cautious with it, particularly if you come off it. I'm still wondering about the diagnosis, though. It really isn't usual to put someone on long-term medication for migraines unless they are getting migraines very frequently, I think more than two a week or thereabouts. And you're not even sure they're migraines!

I think my GP is waiting until I've had the 24 hour ECG before she'll sort out the referral, and that's going to take at least two months.

[misstraci]

Oh ok, I understand now. They have to do your monitor and get those results prior to the referral.

And I hope the medicine doesn't cause any issues for me. It is weird to give me a full time med for absent migraines I'm not even feeling. I think he's going off the EEG activity that was abnormal and giving me something that will even out abnormal waves and hopefully some of my severe lightheadedness can be controlled with the medicine. This is what he's telling me, I really hope he's right.