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Post  msmolly on Fri Oct 15, 2010 3:27 pm

Good news - my new neuro told me not to worry about rebound, but to treat every migraine (Maxalt is great for me and always works). And, a new preventative was reducing the number of migraines dramatically.

Bad news - for no reason I can identify I started getting lots more migraines again, and actually had four days in a row this week where I took the Maxalt, including yesterday. Met with neuro yesterday, and we are going to increase the dosage of the Lisinopril to 20 MG from 10. That, along with 50 of Nortriptoline, was the preventative combo that worked so well for me until just recently. He feels confident that upping the dosage will help within two weeks, and I am hopeful.

But now I KNOW I am in a rebound cycle, no matter what he says. I've lived like Bubble Girl in terms of triggers all week, and this morning woke up with yet another bad migraine. I went through this once before a few years ago, and was advised to abort the rebound cycle by stopping the Maxalt (duh) and toughing it out for a few days. Today I did not reach for the Maxalt but took an Oxycotin left over from my last surgery, and it hardly helped but enabled me to get out of bed and do a few necessary things in my (home) office. I'm still hurting, but minimally functional for a few minutes at a time.

Does anybody have a magic number for me of when I can take Maxalt again? I\m probably asking the impossible but this group has helped me so much over the years I thought I'd at least ask. I also promise to post how the increased dosage of the Lisinopril does, because the combo of that plus the nortryptoline had reduced my migraines from 3-4 a week to 3-4 a month for seven months. Have to hope it might help others, too. Thank you.

How many days do I need to abstain from the Maxalt to break the cycle? Is there a magic number?
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Post  Kate on Fri Oct 15, 2010 3:49 pm

Can`t believe he told you not to worry about rebounds.

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Post  lentils on Fri Oct 15, 2010 3:59 pm

There is no magic number, you will have to experiment and see what that number is for you. I could look in my diaries and tell you what I did, but that will probably have little relevance to you. I wish you luck in trying to reduce the number of headaches your experiencing. Let us know what happens, I'm interested in hearing other people's experiences.

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Post  pen on Fri Oct 15, 2010 5:36 pm

I can believe he told her not to worry about rebounds. My neuro told me that too.
Watch the OTC, hit the Triptans is what he said....
I have no idea how to answer the question though.
Think it might be trial and error.
P

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Post  Kate on Fri Oct 15, 2010 5:51 pm

Makes you wonder about these Drs.

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Post  msmolly on Fri Oct 15, 2010 6:03 pm

Thanks and I agree it will have to be trial and error, just was as always looking for a quick fix. I feel good now after a nap, and am praying that tomorrow will start well. (I always get my migraines between 4-6AM). If not, I will again forgo a Maxalt and tough it out. My sister's 60th birthday is Sunday and we have lunch and a play planned - I am so hoping I can live up to that committment. The last time I had the rebound cycle I think it took a couple of days to clear my system.

I do need to say that I like this doctor and he is managing three neuro issues for me - CPEO (weak eye muscles, droopy eyelidsno eye movement, double vision - all progressive) , migraine, and now essential tremors in my legs that have me very unsteady and using a cane. (I am just 61, and resent that like hell). Perhaps I misheard him on the rebound - when we talked about whether to treat all migraines (my fear of doing so), I was having just about 4 a month. I didn't specifically ask about rebound, and he probably felt safe to say it was not an issue given the infrequency of the migraines. I know I am guilty of hearing what I want to hear at times.

Sometimes I think that if it were not for this group I would go crazy during the bad times. Bless you all.
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Post  pen on Fri Oct 15, 2010 6:14 pm

I am pretty much your age. I struggle a lot now. Migraines every 4 days, and Fibro.
I have an apt with the neuro on Monday.
I dont have much chance of getting there.
Last one was total waste of time.
I emailed him to see what to do. No reply.

He has nothing to give me.
I dont think he cares that I have a half life.
He is nice, but his pills dont work, so that's it.

I have had 9 triptans this month and we are half way through.
I dont know what I will do the rest of the month.
It s been a tough two months.
But I didnt mishear him......watch the OTC, take all 12 triptans if you need to.
Well 12 is regular now, and he has no answer, but her doesnt subscribe to rebounds.

If you ask on here, I think its 50/50, but many dont believe it.
Sometimes it is just lots of migraines, not MOH.
Other times Iguess it is the drugs.
I wish they would stop confusing us.

Hope you make the birthday OK.
I just did Christening last sunday and funeral today....hence the extra drugs...

Pen

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Post  msmolly on Fri Oct 15, 2010 7:22 pm

Pen, so sorry you have had such a rough time. Can your doc give you any Maxalt samples if you run through the insurance companies limit of 12? Mine did. Also if you go to the Maxalt site you can get a coupon for a free trial, which my pharmacy will fill as long as I have a valid prescription.

But yes, the mixed messages are frustrating. I try to keep in mind the days before the triptans were available, when I was stuck with Midrin which did me no good at all.

Feel better,
Molly
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Post  pen on Sat Oct 16, 2010 9:05 am

Hi Molly, excuse this brief reply, hard day yesterday, my cousin's funeral.
I am in the UK. We dont have samples that I have ever heard of. Mad
I hate to take so many and yesterday had the worst side effects for ages, last 3 hours.
Almost didnt make it to the funeral.....

I wish the so called experts would all get on a conference call and make up their damn minds......

Pen
Do we see you on FB BTW? sunny

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Post  dawn.binks on Sat Oct 16, 2010 12:27 pm

i was told 3 months without maxalt to clear all signs out of body then we started with a clean sheet, it was the best thing ive done . i too was getting the daily bah heads that was there when i woke and then was sending me back to bed by 11!!!! my consultant did promise id clear the daily head and as hard it was to go without the drugs HE WAS RIGHT!!
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Post  Hal on Sat Oct 16, 2010 1:18 pm

MS Molly,

What is the Lisinopril supposed to do?

As for the Maxalt, maybe when the migraines stop for a few days you could start taking it again.

Hal
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Post  pen on Sat Oct 16, 2010 1:40 pm

dawn.binks wrote:i was told 3 months without maxalt to clear all signs out of body then we started with a clean sheet, it was the best thing ive done . i too was getting the daily bah heads that was there when i woke and then was sending me back to bed by 11!!!! my consultant did promise id clear the daily head and as hard it was to go without the drugs HE WAS RIGHT!!

Dawn, as you know I am glad this worked for you. But what about those of us that done have obvious signs of rebound.
It is clear it doesnt effect everyone. Wasnt it your neuro that said it is 2% or something.
So does he give any clear guidelines as to how we can tell?
I know Andy Dowson has said that people go through Hell getting off, thinking they have rebound, and then they still have the pain.
So they have frequent pain, but it isnt caused by medication. I believe we have a few people here who have experienced that.
It isnt all rebound, so how might we know? What is the criteria?

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Post  msmolly on Sat Oct 16, 2010 1:46 pm

Hal, my neuro combines Nortryptoline (50 MG at bedtime) with Lisinopril (now 20 MGS in morning) as my preventative cocktail. I was already on the Nortryptoline when I found this neuro, who runs a headache clinic here, but having at least 12 migraines a month. He suggested adding Lisinopril, a blood pressure med, to test that before moving on to heavier drugs with more side effects like Topomax. Within a month of starting the combo, I was down to about 4-5 migraines a month and stayed at that miraculous level for about 7 months. Then in August the frequency spiked dramatically, till I hit this month with 8 or 9 migraines in 15 days - the last four of which I think were rebound.

He thinks the increased Lisinopril will probably do the trick. Only change in my life in August was the advent of severe leg tremors due to an essential tremor that used to be only in my hands, and I got scared about falling down and breaking more bones. He thinks that the stress of that, plus building up a resistance to Lisinopril, caused the change. Sorry for such a long reply but I do think this combo is wonderful, if I can get it to work again with the increased dosage, and want to be sure to put the info out there for others who might benefit.

Rode a migraine out with no Maxalt yesterday, and today woke up with no migraine. I am hopeful that I have broken the cycle, and as you say, will try Maxalt again after a few days when I get a migraine.
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Post  dawn.binks on Sat Oct 16, 2010 2:26 pm

msmsolly, agree all you can do is try and if it showing that it is working, HOORAY! keep going and enjoy the relief it is giving you. pen all you can do is try it and see and work and work and work away with your neuro and not give up and keep going back and work WITH them exploring every possible avenue. for you pen it will be worth you going to see your neuro on monday and report back to him about your neck whats happened with the physio etc and see what he says after all he agreed that the neck could be causing the head probs.
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Post  pen on Sat Oct 16, 2010 4:00 pm

Thanks Dawn. I need some guidelines, I think we all do.
Rebound has become like religion. The believers and the non believers.
I think just like that subject, there are degrees, it isnt necessarily black and white.
But few of the neuros seem to be able to agree with each other either.

As for my neuro. My chances of getting there are not good.
its at noon. Its an hour and more away and I have already had too many triptans.
I have to allow 5 hours for them to work and the s/e to allow me to function, so that means waking at 6am.
And even then, given my bad back at the moment, not a fair chance.
I emailed him 10 days ago. He is supposed to deal with patients on email, that is why he was recommended to me by MA.
I told him everything that has been going on, and asked if we could do a phone consultation as I am not good right now.
I also offered to cancel the apt if that was okay.
No reply............

So I havent cancelled, but the way I am right now with the fibro and the migraine, I think I have about no chance of getting there.

P

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