I take Amitryptiline which is also a tricyclic antidepressant (same family).
Many have a lot of negative thoughts on this med becasue of some of the side effects. They do not give it enough time to give it a chance to "Work".
Mostly it will make him tired in the begining until it gets into his system. This is partly due to not having that REM sleep that we need for "complete" rest. It takes a good 6 weeks to get in to the system for him to get the optimum (sp) affects of it. I sleep very good with it :) And it has been around for a long time....an Oldy but Goody! Also, he may have dry mouth (cotton Mouth) in the begining, but that to will subside.
Good Luck. I am sure he will do fine w/ it and get some of that REM Sleep that he so desperatly needs. Oh ya, this med is also used for chronic pain so I feel quite sure that he will see an improvement w/ his head aches.
Take Care and keep us updated on how he does w/ it.
I don't know how old your son is but I do know that that particular antidepressant is known to cause weight gain. I took it yrs ago and gained about 40 lbs that I can directly attribute to the drug. I didn't have headaches but it definitely did help me sleep.
While weight gain CAN be a side effect....I have not had a problem w/ that either.
It does give you a bit of a sweet tooth ;) But again, if benefits outweigh the risk...then there is no questioning on which is the best thing to do.....while FDA has approved this drug for depression, it is like so many other rx's out there that they use "Off Label" for other things. One of my meds I take for my MS is actually a seizure medication.....Again, using it off label.
Besides, there is nothing written in stone that he will be on this med forever.
Your body just kinda seems to adjust to it..
My son did take it in the 7th grade for one week. He became extremely emotional(crying for no reason). His teachers called me and asked what was going on because he became disruptive which was completely out of character for him. So his doctor had him stop taking it immediately.
The doctor said that was an uncommon reaction.
On the other hand, my daughter takes it for her preventative migraine med (30 mg daily at bedtime-she is petite 99 lbs) and it is working great for her. So just keep your eyes open for any side effects, and sometimes the side effects are more tolerable to the migraines/headaches.
I'll keep my fingers crossed that it works for him.
My husband also takes Nortriptyline for back pain and he got a terrible sweet tooth with it. He got in trouble from the dentist for sucking on Jolly Ranchers too much and losing his tooth enamel on the back of his teeth from it. So do beware of the sweet tooth.
Thanks all! We're going to start on it tonight. Reading through the warnings and side effects I see that cotton-mouth and constipation are listed. My concern is that it could cause dehydration? I don't know if that's exactly what I mean....I really mean, since we are supposed to be keeping him on a diet so high in fluids to help with his blood pressure, could this medicine work against that?
Christy-I should have read back over your note. I see you told me about it already.
I'm not too worried about weight gain--well, actually I am! But I WANT him to gain weight. Currently he is 6'3" and weighs about 148. Still no appetite tonight. :(
I used a small dose of nortryptyline daily for two months. This was for rib pain caused by a pinched nerve in my back. My doctor explained this drug is not used as an anti-depressant hardly at all anymore but has been found to be very good for some types of pain. It actually worked quickly for me and very well. I had this pain for well over a year and it was gone within a few days. The problem came later when it began to cause skipped heartbeats. It can cause A-V abnormalities in some people who are susceptible.
I don't know as yet why I am susceptible but I had the same problem with verapamil although I was able to take it a few years back with no problem.
LA, how old is your son? Taking a prescription by a Dr he hasn't even seen doesn't sound like to great an idea. From looking at his BP numbers, he could have some issure there. Has he not seen a cardiologist? Like mtgardner said, it can cause heart irregularities. I didn't mention it before but I took amitriptyline, which is pretty much the same thing for 2 yrs and not long after I started getting episodes of a-fib which I'm still dealing with today. If he is a teenager or younger I would not get him started on a med that might affect him badly over time. Believe me, he doesn't need any belated, possibly life-long side effects. He has said he has pains in his heart area, and according to his chart his pulse rate is all over the place. Did the Dr prescribe the magnesium supplements as well? Could you give us a little more information by answering some of the forementioned questions?
I took the related amitriptyline before and didn't have issues with side effects, though over time it proved not enough to keep my migraines at bay, particularly when they worsened when I quit smoking. (I know, awful that I smoked, but at least I quit!!) I ultimately ended up taking Topamax as a migraine preventative instead, but don't have anything negative to say about amitriptyline; it's certainly worth giving a shot!
To address the concerns that Linda brought up, I think that every time any of us with fluctuating BP and/or HR (i.e. dysautonomia) gets Rxed a new medication by a physician who is not our main dysauto doc, we should run it past our "head honcho" for final approval. In my case, I tend to have my general practitioner (who I see at least once monthly) play the role of "ringleader" on my team for my whole healthcare, keeping abreast of all test results, hospitalizations, med changes, and symptoms; if there are potential cardiovascular side effects of a medication or treatment, I run it past my local cardiologist who is the head of my dysauto treatment; and if there are very technical questions that seem to require the attention of someone with deep knowledge in dysautonomia, I call my dysautonomia specialist cardiologist at the Cleveland Clinic's syncope/dysauto clinic.
By giving "veto" power to whomever has the expertise needed in a given scenario, I can have increased confidence that Rxs written for me by doctors who may not be thoroughly versed in my entire case history or in dysautonomia in general will nonetheless be safe for me.
Occasionally specialists will just give me a list of several different options to run past my dysauto doc(s) to see which is safe/preferable (if any), especially if they are aware that there are likely contraindications; an example of this is when my sleep neuro was trying to choose a narcolepsy medication for me, as many of the usual medications for this have cardiac side effects that might exacerbate tachycardia. My cardiologist crossed off one suggestion, gave another a "maybe," and okayed a third so we went with the third and kept the "maybe" on the back burner in case the first one we tried wasn't effective. Your son's doctors should have no problem giving you a second opinion on any Rxs he receives from other physicians and this may give you added peace of mind to cross-check them with the other specialties.
I hope he does well on the new med and gets relief!!
Thanks both of you.
You know, I am getting more concerned about the effects the nortriptyline is having on Nick. His bp is consistently high now. It does drop still when he stands but before the last week or 10 days, he hardly ever had high blood pressure--just normal or low. His headaches have definitely decreased.
I think I have the problem of not having a doctor who regularly treats dysautonomia. We will see the cardiologist again at the end of June. Beyond that, we have no appointments scheduled.
To answer your questions, Linda, Nick is 15. This whole thing is very new to us--his first symptoms (vertigo, falling, fainting) began a week or two before Easter and his condition rapidly deteriorated. He has seen two cardiologists--one "regular" and one pediatric. The pediatric is the one we will see again the end of June. The other cardiologist wanted to do nothing and have Nick come back in 4 months to recheck (this after stating an echo showed a 45% ejection fraction and a holter showing instances of tachycardia, etc.). The pediatric "diagnosed" him with autonomia, but did not do a tilt table test. He did have another EKG and another echo, and the pediatric doc disagreed with the other about the EF.
He wasn't perscribed magnesium by anyone, but after having that recommended several times to us by people on here and elsewhere, we got some ourselves. He currently takes 400 mg magnesium, 400 IU Vitamin D3 (i just figured he needed that since he's inside so much now...), 400 IU Vitamin E (I don't remember why), .2mg Florinef, and 40 mg Nortiptyline.
The Nortr. was perscribed by the neuro after talking with our pc (who is just a PA) and getting a report of what tests he's had done and the results, but no, he's never seen him.
How do you all think I should proceed?
Well, I am concerned about your son as well. I can't help but think that all this has to be related to the nortriptyline. I don't know anything about the fludrocortisone. With his heart rate running high and his BP numbers I think you need to consult someone besides that PA. He clearly feels awful ...what about that Lyme test? I almost wonder if it couldn't be Lyme Disease. Who put him on the high-salt diet? Your son has a lot going on right now and I think you're going to have to find another Dr. to tie all of this together. I really hesitate to tell you to discontinue the nortriptyline, but..... I'm assuming you have read about possible side effects listed in the information pamphlet? I wish I had more to offer you. I do know Texas Childrens Hospital in Houston is a very good hospital.
Well, we had a third lyme test done this past week. We will wait and see what it says. It seems to me that his symptoms (up till the high bp this week) seemed to fall right along the dysautonomia/POTS line, and less along lyme, but I don't know. I think I read that the heart problems withy lyme actually result in some sort of inflammation or something--and he has had 2 echos, many EKG's, and a chest CT w/ contrast that haven't shown that. We'll see, I guess, when the results of this one come back.
The pediatric cardiologist is the one who diagnosed with with dysauto. and put him on both the Florinef and the high-salt diet. He also recommended 70-80+ oz. of liquid, mostly Gatorade, but anything is fine, a day.
Our PA will give us a referral to anyone we ask to see--the problem is just knowing who to ask for. And getting in. B/c he's only 15 there are a lot of docs around here who won't see him. That's why she just did a phone consult with the pediatric neurologist. Can't get in to see him till October.
Thanks for the recommendation for Texas Childrens Hospital. We may have to look them up when we move to Texas next year. :) (although I hope we're done with all this mess by then!)
Florinef made my BP go up. At first it seemed to help, then the BP increaed and I started getting terrible headaches. Had to stop it.
Also, I found that magnesium lowered my BP too much. I used to take it at night because it helped me to sleep then my BP started dropping out and I'd wake with high pulse and low BP.
Nortriptyline- oh yeah, I've had experience. I had a constant mild headache while on it, felt like a walking zombie as well, and when I went in and (prior to being diagnosed with postural orthostatic tachycardia syndrome) the neurologist said my pulse was I think 130, and he said we are discontinuing this drug. I believe I was having a pounding migraine at the time.
Have to be careful to keep him out of the sun and not to expose him to high tempatures over 90 degrees. I disagree with them putting him on this particular medication especially with summer being here what were they thinking??? There are other meds that could have been tried first.
It's so interesting how there are so many different experiences with each drug.
FWIW, Nick is not taking the nortriptyline anymore. His bp had increased so much that our pc recommended taking him off it. I haven't noticed any improvement in his bp since doing so, and the last several days he's had bad headaches again.
Back to the drawing board....