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Any one else told to get off of Triptans because cause rebounds?
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An_241858 posted:
I need some help. I have had a constant headache/migraine for 6 months. I have always had them, but something triggered a change and no test or neurologist can find a cause. I saw a doctor who believes I am now causing my own migraines by using the Triptans which he believes causes the rebounds and continued cycle. His only recommendation is to cold turkey get off the meds and then migraines will be under control. I tried for three days and ended up in bed for two days. Is there anyone else who is being told that this is a problem and that they need to get off the medications? If so, aside from diet changes, what other options are you being offered while you get off the meds so you or I don't go through the kind of withdrawal and incompacitating pain that I experienced. I plan to try again, but will need to take a week or two off from work so I can be home and go get 'approved' shots of various medications when the pain become too severe to manage. I would appreciate other people's thoughts, opinions, experiences with the Triptans; if they have heard about this before and anything else since I suffer with them and the pain is debilitating (as you all know) without some intervention.

Thank you for reading this and any responses you have to offer.s
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NeNe_11 responded:
I saw a headache specialist for the 1st time last month & he said the same thing. He prescribed me a steroid for 12 days to help with the pain & I am to take no otc pain meds or maxalt. He did, however prescribe the Sumavel DosePro Pen to use when I get the migraines. I showed him 3 months of migraine calendars which showed between 10-18 migraines headaches everyday in between. I thought the headaches were more tension type. He said they are all migraines at this point due to overuse of all serotonin stimulants-triptans, pain meds, advil etc..
I have not taken the steroid or tried the Sumavel yet(which is just imitrex) because I am going through another med change for something else & didnt want to put my body through too much. I am very sensitive to med changes & always suffer alot of sleep disruption & nausea.
Did your doctor mention the use of a steroid? Im wondering if anyone else has tried this & did it help?
 
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confusedalk replied to NeNe_11's response:
Hi, he mentioned the steriods, but did not offer. I tried getting off the meds earlier this week, while suffering with a debilitating migraine that increased over a three day period. I ended up in bed. I have read more and there is a lot that suggests that the Triptlans are a problem and i have been using Imitrex and now have been on Relpax which works. In order to get off i am planning two weeks off from work...ironically hoping i get a migraine during that period so i can work through the withdrawal. This whole thing seems so insane and the pain i went through already...in my past attempt, has me terrified to go through it again. Essentially if i do go through the withdraw I have to plan to be bed-ridden over the holidays because of the sleep issues, nausea, photo and sound sensitivity and shear pain. I know i have overused the medications, getting 8-10 migraines a month and headaches in between.

I will call about the steriod, but he was very scripted and not warm...essentially saying i had to do this and if i failed it was my fault; my lack of strength and conviction. nice...no?
thanks for responding it is good to know others are going through and have heard similiar things. good luck to you.
 
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NeNe_11 replied to confusedalk's response:
This doc doesnt seem very empathetic to your needs. I know what you mean about doing this over the holiday's, as the same thought has been on my mind. I thought i would wait to do the steroid thing until after Christmas & when my other meds are straightened out.
My new doc, who I've only seen once, was great. He told me if I cannot do this at home, on my own that he would hospitalized me. Its nice to know he cares enough about wanting his patients healthy. I will not go to the hospital for this, no way-but good to know the option is there.
I hope you will be able to get straightened out with these meds so you can stop the rebound effect-Good Luck.
 
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Swimgirl57 replied to confusedalk's response:
omg, I can't believe how unsympathetic these doctors are. I get about two or three migraines per week... so that's about 12 per month! I also take a triptan drug (Maxalt) which helps tremendously, but it can cause the rebound headaches and it's hard to get off that track! My husband helped me with a really strict diet and no otc meds, and it did cut the migraines in half but I still got at least one per week. There's got to be another way -- I ate only fruit and vegetables, no meat, no dairy -- I did lose 15 pounds but all I really cared about was to get rid of migraines forever. But some people just get them, and I don't think the doctors know enough on how to prevent them. I have been on a new drug, Neurotriptylene, which is an anti-depressant, to prevent the migraines. So far I don't have any side effects, thank goodness, but it's only helped a little with the migraines. They say I have to give it at least 4 weeks. I'm on a very low dose, but I'm supposed to increase it next week, so we'll see what happens. I'll let you know how it works if you're interested.
 
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confusedalk replied to Swimgirl57's response:
I agree...the doctors who don't have migraines don't see us as people, rather see us as a symptom that needs to be medicated or placated. I am familiar with Nortriptyline; I was told if I get to a baseline and still have migraines they would consider it. I have been told to stay on the migraine free diet (i'm not losing weight and stay off meds. So it is a crap shoot, going on the belief that this will get sorted out before i have to go back to work. On a fun note, in order to trigger a migraine during this period I plan to take off, I am going to have a party and eat everything I have not eaten in over 6 months...it's going to be the 'trigger a migraine' feast. If I have to get in pain, at least I will know why...have to find humor somewhere is this nightmare of emotional and physical exhaustion. Good luck with your new meds. I hope they work for you. take care and here's hoping you have a pain free week.
 
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Swimgirl57 replied to confusedalk's response:
Oh man I would not want to trigger a migraine and not have anything to take for it -- good luck -- you are brave! I see why you're doing it though. Can I ask what your migraine diet consists of? I'm wondering if it's similar to what I was doing.
Thanks.
 
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davidwbonner responded:
YES. I know what you're going through. I got off triptans cold turkey. It was hell, but somehow I did it, and my life is 100% better today. Email me and I will tell you my whole story. I think it will help you. newbonner at gmail dot com
 
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confusedalk replied to Swimgirl57's response:
Hi, it is amazing and so great to finally have other people to talk to about this. I wake up with a headache every day and then worry about whether it will stay at level 3/4 or shoot up to a 7/8. If i'm working it's a nightmare...fortunately most of the absolutely...i need a shot of something, happens on the weekends which i have learned is common. As for my diet I am on a diet that I found on different web sites, but also using the book by David Buchholtz who is suppose to be 'the man' on migraine prevention. Basically, take everything you love to eat and get rid of it...no aged cheeses, citrus, caffeine, chocolate, nuts, some dairy, condiments, vinegar...the list goes on. Some are more extreme, but usually they are consistent about what they don't want you eating. I would assume your's is similar? Believe me I don't want to trigger a migraine, I just don't know how to get off this roller coaster because unlike others i don't get a migraine every day; but if i get one I can expect it to be a bad week of two or three in a row (without any known trigger...kept diary since spring). Let me know if you have had any luck with the diet with or without meds.
 
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confusedalk replied to davidwbonner's response:
Did you have daily migraines? My problem is I could go a week with nothing and then bam....so if after a week am i technically off the meds impact? no one seems to be able to answer this question. If I get a migraine today, but haven't taken the meds since last week (using ibuprofen 800mg instead) am i already free and clear or do still have to go through something else? This is the confusing part for me...i suffer frequently, but not daily. such a mess. I would be interested in whether your pattern was similar or different in terms of how often you had migranes and how often you took the meds. Last month I had to use it 9x...which doesn't seem like a lot to me, but to my doctor he says absolutely stop. Has that been your experience? thanks for sharing....any support is welcome as i try to sort this out with the help of others who have gone through it vs. 'the professionals' who just tell me w/o explaining.
 
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carpetcrawler5 responded:
The reason you get a constant migraine is because one begats another, meaning the first really bad one causes inflammation and nerve irritation, making it easier to respond negatively to triggers. If you're taking as many as 9 triptans a month, what's going to happen is they won't work anyomore for you. You could get rebounds from triptans, but only if you take them excessively, and it's much easier to get rebounds from OTCs or narcotic meds. Another way to wean yourself off of them is to take Indomethicin, but only as an abortive because it can cause stomach upset(so take with food). Other prescription NSAIDs such as Mobic, Etadolux , celebrex or Bextra could work for you also.

If your headache goes all the way away, the next time it comes back, try drinking coffee right away, it might stop it.

Also, put ice around your head. Get Techni-ice or a simular product and cut them into strips, put them in water and let them puff up. Then wrap them into bandanas or scarves and freeze them. Once frozen, wrap them around your head. Also, look into a TENS unit, which can help when all else fails.
 
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confusedalk replied to carpetcrawler5's response:
Well, all bets are off. The migraines are still ever present; daily headaches are now apart of my life; i have not taken the triptans in over three weeks, but 800mg of ibuprofen and i are best friends Interesting you suggest coffee...my doc and everything i read says get off. The caffeine like the meds is a temporary fix...it opens up the blood vessels, but then can easily cause a caffeine withdrawal rebound...constrict and make matters worse. So in addition to everything else, I have worked myself off all caffeine related meds (like Excedrin Migraine), drink one cup of half/half coffee and plan to end that during my two week period when I go into full 'detox' from everything...(i'm already abusing the ibuprofen which is what got me on the triptans to begin with...I've gone full circle). This doc wants to find my baseline and see if I can be pain free. Given that a major trigger is weather changes and I am in for topsy turvey week...I don't see this being a pain free week. The rebounds come whether i take the triptans or not so I am in a painful wait it out game. I'll look into the ice since when I am in a full blown migraine my face burns up. thanks for the thoughts.
 
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Swimgirl57 replied to confusedalk's response:
Confusedalk, I can't remember if you said you tried a daily preventive med, but I've been on Pamelor, generic is called Noritriptylene, for about 3 weeks now and I believe it is starting to work! I may be speaking too soon, but I haven't taken the Maxalt in about 5 days now. I am crossing my fingers. Has your doctor suggested a daily preventive med, like Topamax or an anti-depressant (low dose)? It sounds like that's what you need to try now... or another one is one of the blood pressure drugs (Nanalol or Propanalol). I feel your pain. I have also heard that caffeine just triggers the rebound headaches, so I would be careful about too much caffeine. I'll keep you posted if this drug is really working for me or not. But as I'm typing this my neck is getting stiff and crackly, which tends to lead into a migraine for me. Anyone else get that in their neck. Sometimes I'll got to one of those massage chairs in the mall and have them work on my neck for 15 minutes and it really helps. Good luck to everyone trying to get off the triptans!
 
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confusedalk replied to Swimgirl57's response:
hi, first thank you for responding.This has been such a support to be able to talk to other people who know what it is like to wake up or go through a day in pain. I woke up with big one today and am getting ready for a long work day. Tomorrow is my last day before my two weeks of letting the headaches run their course. I wanted to let you know that I get stiff necks and crackly necks all the time. I am in physical therapy 2x a week to try to address since my range of motion is compromised. I was also in acupuncture for a while which I don't think helped. I was told to get a cranial-sacral massage which may be my next option.
I did try Topamax, got up to 100mg along with Maxalt for 'rescue.' I was sick for a month, had serious side effects, lost a lot of weight and continued to have break through migraines. This neurologist, after I was equally unsuccessful on Butterbur decided I was too complicated a case and referred me to a pain management center so I could get on narcotics. That was when I had my first break down. I am extremely sensitive to medications so the very idea of putting me on those kinds of drugs dumb founded and sent me into a depression. At this point, the doctor I am working with wants to find out what my baseline is because he is convinced once the rebounds stop I may not suffer anymore (only someone who hasn't had migrianes/headaches for upteen years would suggest such a ridiculous idea...but that is the 'guru.' ) If I continue to have migraines/headaches as I suspect (although I have been accused of not being hopeful...so I hope I don't), then he will consider a medication like Noritriptylene or a beta blocker or some of the other preventives. The catch is I don't see him again until February, but if I get off this stuff and still suffer I expect to see him sooner. I am so tempted on a day like today to take the darn meds; I know I could feel better, instead it is going to be a long day of popping mega doses of 'allowed' meds.
Good luck with you and the Nortiriptylene. I have heard good things about it...there is a lot of reason to believe it will help. Take care and happy holidays.
 
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Swimgirl57 replied to confusedalk's response:
Good luck to you too! I think you are doing the right thing by trying to get off everything... and having a week off work is a good time to try it. I did the same thing, I think I wrote about it, and was on a strict diet, and it definitely did cut down on the headaches. I think I was rid of the rebound headaches, but still had a migraine once a week (as compared to 3-4 times per week!). Re the Noritriptylene, I don't have any side effects (except for dry mouth), and I actually have more energy, so it has some positive effects. Hang in there, and hope you can get through today... I know it's hard to work with a migraine! Maybe take a half an excedrin to help... cut it down gradually. Good Luck and Merry Christmas!


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