Migraine Cycle - Have Migraine Every Single Week on Same Day - Desperate

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Migraine Cycle - Have Migraine Every Single Week on Same Day - Desperate

Post by Gigi on Sun Oct 13, 2013 4:02 am

So glad to have found this forum and thank you ahead of time for reading this. As I am sure many of you are or have been, I am desperate to find an answer to what has become a life changing condition.

Quick background: I'm a healthy and happy, early-50's career woman living in the big city. I can remember having migraines as a child but maybe one a year, if that, and they always went away after a nap. As an adult, the same thing. I can also remember events that caused an adrenalin rush triggering a migraine - like a big earthquake. But again, a dark room and some sleep and it was gone. Nothing out of the ordinary.

About three years ago I began have menstrual migraines that I could link to my monthly cycles. But then they began increasing in frequency. Fast forward to today and the problem I am now dealing with is that I seem to be on a "migraine cycle" (that's what my neurologist calls it) - every single Saturday morning I awake from sleep (sometimes at 4 in the morning) with a raging pounding migraine.

Last year I began seeing a neurologist who taught me about "cycles" and said this was not uncommon. He put me on a round of Prednisone and started me on Nortriptyline 10mg. It worked! The cycle broke and life became normal again.

A few months later they came back.

A new round of Pred did nothing and my life has changed completely. I'm desperate, have a migraine as I write this and am about to cry.

Two months ago I started Topamax and that did nothing so a few days ago he upped the dose to 50mg x twice a day (I'm working my way up to that (along with increasing the dose on the Nortriptyline from 20mg a day to 25mg I believe - need to pick it up today)

An MRI showed nothing unusual and I am scheduled for a second one next Friday. I also have a Botox consultation next week.

Migraines have lasted up to four days and some have been so severe I have been to the emergency room.

For pain relief I recently started on Zonig nasal spray and thankfully it usually works very well. Although this morning I had to have a Fioricet because the Zonig did not work.

The unusual thing now is that they are only starting on Saturday's.

So what's different? The only thing I can think of is that I sleep a bit more. Most nights I sleep from 8p to 2am (work an early shift) and on Friday nites, I usually go to bed at 10-11p and try to sleep in to 8a. Most Saturdays though I awake by 4a with the splitting pain.

That is the only thing different.

Anyone else here on a "cycle"? I am thankful it does not interfere with work but it has completely put my life on hold. Saturday's are spent in pain, nothing gets done and I don't go out and Sunday's are spent recovering and catching up. Basically I no longer have any type of life.

Suggestions? Help? Please.

Sign Me, Desperate


Gigi

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Re: Migraine Cycle - Have Migraine Every Single Week on Same Day - Desperate

Post by Sarah on Sun Oct 13, 2013 5:26 am

Hi and welcome. I know just how you feel. Sadly, I had to give up my job, as I was finding things really difficult - spending the weekends zonked out in bed, and all week struggling to work with a migraine.

I don't envy you with that sleeping pattern, to be honest.

I assume you've already looked at things like medication overuse headache, and aren't taking too much of the Zomig.

My own situation now is that I have one 'good' week (which isn't migraine-free) in every four, one absolutely vile one, and the other two pretty bad. Hormones certainly have a lot to answer for, in my case.
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Re: Migraine Cycle - Have Migraine Every Single Week on Same Day - Desperate

Post by Gigi on Sun Oct 13, 2013 6:37 am

Ouch, Sarah. That sounds even worse than what I am going thru. I just started the Zonig and no, am not taking too much of it. The doctor said I can only do two nasal sprays in a 24 hour period and that's about what I do a week. Today I only did one and when it didn't work, two hours later I took a Fioricet which thankfully did. I have to find a cure for this though...

I'm doing a hormonal blood panel this week too.

Thanks for your reply.

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Re: Migraine Cycle - Have Migraine Every Single Week on Same Day - Desperate

Post by pīwakawaka on Sun Oct 13, 2013 8:46 pm

For many people changes in sleeping pattern can be a migraine trigger. Even small changes. Have you tried keeping to the same sleeping pattern on Friday nights as you do on the rest of the week?

I haven't been able to work full time since 1999, and not at all since 2008 as migraines incapacitate me completely on about 10 days a month and partially on 10 to 15 days a month, so I do understand what you are going through.

In some ways I'm envious of the fact that your migraines are predictable. At least you can plan the rest of your life around the migraines. What I find most frustrating is that I am unable to plan any activity with any degree certainty that I will be able to do it. The odds are that about 60% of the time I won't be able to take part at all, and in about half of the remaining activities I will be affected to some degree by a migraine.

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Re: Migraine Cycle - Have Migraine Every Single Week on Same Day - Desperate

Post by Sarah on Sun Oct 13, 2013 9:30 pm

Yes, to a small extent I can at least plan a bit (as long as it's near enough to predict my cycle). My husband took a week off work recently, and we planned it on what ought to be my 'good' week. Thankfully it did work out, so we got a few days out. Smile

Gigi, what I meant by medication overuse was taking triptans or analgesics every day can cause rebound migraines. It certainly does with me, so it's a constant battle to restrict myself to around twice a week only (although in my worst week I can't achieve this).
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Re: Migraine Cycle - Have Migraine Every Single Week on Same Day - Desperate

Post by Gigi on Mon Oct 14, 2013 2:04 am

pīwakawaka wrote:For many people changes in sleeping pattern can be a migraine trigger. Even small changes. Have you tried keeping to the same sleeping pattern on Friday nights as you do on the rest of the week?
Good Morning...Awoke up with a migraine. Surprise. Not. ;-(

No, I haven't kept my sleep schedule on my day off but it's worth a try. This upcoming week my schedule is all over the place so it should be interesting to see what happens.

Praying for some relief for you both and wishing they could some how find a cure. I say this about colds all the time but if they can send a man to the moon, can't they cure our our "headaches". ;-)

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