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purplegdaisy
Regular Member


Date Joined Feb 2005
Total Posts : 242
   Posted 12/8/2005 3:49 PM (GMT -7)   
Has anyone tried this for migraines? My neurologist gave it to me today.. 25 mg at night for a month and then 50 mg at night for a month. May need to increase after that. Supposed to be an preventative for all these headaches I've been getting.

I looked up the side effects.... black tongue? Not sure I want that one. but bulemia... I could handle that for about a year! My neuro went on to tell me how obese I have become since October when I first started seeing him. (I've gained 16 pounds), not that I wasn't already overweight... I tried to explain that it was pretty hard to get up and move around alot after you had been in an auto accident at 65 mph and had something wrong with your back. He suggested that I watched what I ate. I then explained that with Ulcerative colitis I get no fruit, no veggies, no salad... just what did he think I should eat? He suggested I see a dietion. (sp) I think that would be a great idea, however my insurance does not cover weight loss medication or treatment of any kind or I would have already had gastric bypass surgery and lost 150 pounds.

Lets just say my self esteem went right through the floor today!

Tracy
Diagnosed UC october 2004
Asacol 3x3 daily
tried Rowasa enemas (hated them...burned like crazy)
Ccurrently in remission.... no blood or D...

Sleep Apnea
bulging disc in lower back causing me tons of pain from car accident in July
currently in PT for back... not helping.. (2x week)
Seeing new Chiro now, Hope to get some relief
DDD L4-S1
right hip 1 inch higher than left (think me standing on the brake during accident caused this)
left shoulder lower than right

Glucosamine for pain in back (doc said try this in addition)
TENS unit for home... seems to help some when I am standing for long periods of time
Facet injections 16 (8 on each side) didn't help)
Lumbar Medial nerve branch injections (radiofrequency burning on Wed)
axert (migraine abortive)
Imitrex for migraines (injections only work)
paxil
xanex for sleep
Zonegran (nerve pain)
Celebrex
Darvocet


Nicky (coquitlam55)
Veteran Member


Date Joined Jul 2005
Total Posts : 505
   Posted 12/8/2005 10:35 PM (GMT -7)   

Sorry Tracy, I haven't heard of it or tried it.

I though you mentioned in another post you were taking Topamax? That might help with your weight loss.


Nicky
 
Fall seven times, stand up eight.
                 --Japanese proverb


purplegdaisy
Regular Member


Date Joined Feb 2005
Total Posts : 242
   Posted 12/9/2005 1:29 AM (GMT -7)   

Nicky. I had to stop the Topamax.  Too many side effects.

 

Tracy


Diagnosed UC october 2004
Asacol 3x3 daily
tried Rowasa enemas (hated them...burned like crazy)
Ccurrently in remission.... no blood or D...

Sleep Apnea
bulging disc in lower back causing me tons of pain from car accident in July
currently in PT for back... not helping.. (2x week)
Seeing new Chiro now, Hope to get some relief
DDD L4-S1
right hip 1 inch higher than left (think me standing on the brake during accident caused this)
left shoulder lower than right

Glucosamine for pain in back (doc said try this in addition)
TENS unit for home... seems to help some when I am standing for long periods of time
Facet injections 16 (8 on each side) didn't help)
Lumbar Medial nerve branch injections (didn't help)
Radio Frequency ablation on right side 12/7/05 (still waiting on outcome)
Zonegran (nerve pain) for back

axert (migraine abortive)
Imitrex for migraines (injections only work)
Nortriptyline 25 mg at bedtime as migraine abortive
Amitryptiline 50 mg at bedtime for sleep


paxil
xanex as needed for "those days!"


CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 12/9/2005 3:40 AM (GMT -7)   
Hey Purplegdaisy,
You problably don't want to hear from me, but I've had experience with several of the things you mentioned.  First,the Nortriptyline.  Do you normally have high blood pressure? If not, be careful standing up or moving too fast.  You can get the room-zooms and pass out easily.  The idea behind Nortriptyline is to keep your blood pressure from spiking when you have a migraine attack. I have very low blood pressure, and it was like my own personal amusement ride everytime I moved around, but then I figured anything that was that fun, couldn't be good for me, so I stopped.  I couldn't every verify it did one bit of good for me when it came to my migraines.  My last trip to the ER, my BP  was 90/64.  So much for spiking duing a migraine.
 
While food modification can be talked until death, I don't every remember seeing a fat jogger.  You mentioned a gastric bypass, which if you are grossly overweight, is really something to consider, but must take into consideration not just all your health issues, but you lifestyle issues as well.  I can discuss this topic from personal experience as well.  I had a Roux-n-y Bypass four years ago this month.  It can be a miracle or it can be a nightmare, or anywhere in between.  You have to be clear on your expectations, and research as much as humanly possible on the subject, especially the clinics in you area conduction the procedure and whether or not they provide continuing care.  I was initially very successful, losing 140 pounds, plus 180lbs(a husband), but I didn't get any of the built in negative side effects that are supposed to keep you from the wrong foods.  Then I got put on DEPAKOTE, got major, certified eating disorders, and gained eighty pounds back. SO just beware.
 
I know you hate it when I end up talking about me, but one thing that might help with both the migraines and the physical issues is hydro-therapy.  I have a really bad back, but things get better if I can spend a half hour, two or three days a week doing mild exercises in the family pool at the YMCA.  In case you need swimwear, check out www.junonia.com.
 
Hope this helps and I didn't piss you off this time.
Leigh Ann cool

"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 12/17/2005 9:19 AM (GMT -7)   

Big surprise...I took nortriptyline also, it worked alright for me...better than the older anti-depressants like elavil/amitriptyline or trazodone (for headaches, not depression issues)

My biggest issues were weight gain...like I needed that! and it also made me extremely tired. The first few weeks I took it I was working an 8-5 job and I remember driving home some afternoons thinking that I was going to fall asleep behind the wheel...and that is something I could NEVER do, not at my tiredest point (without medication of course) I eventually adjusted, but then again, it came to the end of my insurance and the point in time where I went without all medications.

I would not be opposed to taking it again...hesitant about the weight thing, but if it works and you are in a bad enough place with the headaches, the trade-off is well worth it.

Right now though, I am on Topamax and wouldn't budge off that if someone forced me (I know..broken record player, you've heard me say that a million times)

Sara


Sara-Migraine/Headache Forum Moderator
 
Thanks for Visiting HealingWell.com


laura l.
Regular Member


Date Joined Oct 2005
Total Posts : 54
   Posted 12/17/2005 4:22 PM (GMT -7)   
Hi Purpledaisy,
Sounds like your neurologist is somewhat insensitive (if well-meaning.) I started nortriptyline on Halloween (not a difficult appointment to remember) of this year. Prior to being on it I was on (still am on) Topamax. Not sure exactly how your neurologist started you on the Topamax, by the way, but it has to be slowly. There are quite a few side effects, but (at least for me) I found that after I was on it for a while the vast majority of them wore off (except the weight loss, which I was glad of, since I had been on Neurontin before that and gain a ton of weight.) So I would not rule out Topamax entirely, depending on what your previous dosing experience was with it. Anyway, back to nortriptyline. I have been taking 25 mg per night. It actually can increase your blood pressure overall, but when you stand up your blood pressure can go down (orthostatic hypotension is what they call it). But if you stay hydrated it is not usually too noticeable...The dry mouth is a little bothersome. I drink a lot of water and chew sugarless gum - that helps. No black tongue yet. I have gained a couple of pounds but I must admit I have not been exercising the way I should, either. I think Leigh Ann's idea about exercising in the pool is a good one -- that really cuts down on any impact and is a gentle way to get back into exercising. Of course I do not know what your health issues are since your accident, but most injuries do tend to benefit from mobilization. In any case, I have to say that since I started the nortriptyline I have had hardly any migraines. Only one really bad 2-day one when a nasty really LOW low-pressure center went through a few weeks ago. And a couple of milder ones. The dry mouth and 3 or 4 pounds have been worth it for me. And I have not seemed to need more than 25 mg. If I know something bad is coming (like that low-pressure front or a bad hormonal time) I might take 50 mg -- but that is occasional. Another benefit I have had from it is that I was having tingling and pain in my arm from a herniated disc and all that went away, too. Pretty amazing. But it is supposed to be good for neuropathic pain (pain resulting from screwed up nerves, more or less...which happens with migraines when the nerves covering the blood vessels of the scalp become inflamed). Hope it works as well for you. Best of luck.
Laura L.

purplegdaisy
Regular Member


Date Joined Feb 2005
Total Posts : 242
   Posted 12/17/2005 10:52 PM (GMT -7)   
Hey Laura,

Thanks for the reply. My neuro started me on the Topamax at 25 mg for 2-3 weeks and increased by 25 mg each time. My side effects got worse instead of better, I stopped it on my own, without my neuro's thoughts and boy did I pay for it when I had my last appt. I had tried going back down again and slowly going up again, but same results. I had the worst sores in my mouth that you can imagine. I could not eat... which is why I had some weight loss.. (though not enough to note really)

The Nortruptyline doesn't seem to be doing anything so far, I am currently trying to ward off a migraine I can feel coming on. Have taken the axert and if I could sleep I know it would go away. For some reason I have become an Insomniac. I don't know why, and was before the new meds so I know that is not the reason. I have already upped the dosage to 50 mgs so I don't know what else to do. We never really talked about how "high" my dosage could get, so I could adjust gradually if needed. He just said take 25 mgs for a month or so and if no improvement add 25 more. After the 2nd week I started getting them again, so I upped my dosage automatically and here I am with another on the way.

I asked about being on the Topamax at the same time and he said no way... I did not have migraines while on the topamax I believe, but liike I said, the side effects were horrible. I've been on so many new meds in the past 6 months I can't keep anything straight anymore....

I have not experienced the blood pressure stuff, so at least that is one good thing.

Thanks again
Diagnosed UC october 2004
tried Rowasa enemas (hated them...burned like crazy)
Currently in remission.... no blood or D...

Sleep Apnea
bulging disc in lower back causing me tons of pain from car accident in July
currently in PT for back... not helping.. (2x week)
Seeing new Chiro now, Hope to get some relief
DDD L4-S1
right hip 1 inch higher than left (think me standing on the brake during accident caused this)
left shoulder lower than right

Glucosamine for pain in back (doc said try this in addition)
TENS unit for home... seems to help some when I am standing for long periods of time
Facet injections 16 (8 on each side) didn't help)
Lumbar Medial nerve branch injections (didn't help)
Radio Frequency ablation on right side 12/7/05 (still waiting on outcome)
Zonegran (nerve pain) for back

axert (migraine abortive)
Imitrex for migraines (injections only work)
Nortriptyline 25 mg at bedtime as migraine preventative
Amitryptiline 50 mg at bedtime for sleep and lower back pain
Ativan... when all else fails...put me to sleep!

paxil
xanex as needed for "those days!"


Nicky (coquitlam55)
Veteran Member


Date Joined Jul 2005
Total Posts : 505
   Posted 12/24/2005 12:03 AM (GMT -7)   

Hi purplegdaisy,

I recently read an article that said a lot of migraine sufferers don't find relief with treatments because they don't stay on them long enough. The example they provided was Topamax. The article said that most people need to stay on it at least 4 months to see any effects. I had similar side effects to yours but found that once I backed off and increased the dose very slowly the side effects were far less significant. I don't know anything about how long Norytriptiline can take to work but you may want to do some research to find out.

I also find that working out in the pool is really good for my headaches. I find that exercising heats my body up and triggers a migraine. The pool stops me from overheating by constantly cooling me down.

Good luck. You'll find something that works.


Nicky
 
Fall seven times, stand up eight.
                 --Japanese proverb


wenmarie
Regular Member


Date Joined Nov 2005
Total Posts : 63
   Posted 12/26/2005 5:50 PM (GMT -7)   
I was on this for several months and suffered horrible heart palpatations. It also did not work so well for my migranes either. I am on topamax right now and so far so good. I am having some of the side effects but they are much better than the headaches. I hope for you that they work and I wish you well.
Klonopin 1mg for anxiety and panic attacks
topamax 100mg ---preventative for migranes
----------------------------------------------------------------------
Have tried effexor, prozac and celexa for depression
Actually just got put back on Celexa 20MG
 
Have tried maxalt, and imitrex for migranes

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