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Sjogrens Topics => Living With Sjogren's => Topic started by: Suzie on May 21, 2012, 11:45:41 PM

Title: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: Suzie on May 21, 2012, 11:45:41 PM
I'm just about back in the land of the living after my 5 day migraine with added fun fibro flare finally ended 2 days ago. I'm still woozy and not seeing straight and definitely don't feel fit to drive. And heck, I'm tired.

During the migraine every single joint in my body hurt, from my jaw down to baby toes. The soles of my feet felt like they'd been whipped. I don't think I slept so much as passed out from pain and boredom.

I take Rizatriptan (Maxalt) when I feel a migraine coming on, but it's very hit and miss to time it right as I don't get a migraine "aura" to warn me, I get totally tired (could be my usual fibro/cfs), blurry vision (could be the sicca/sjs), and generally headachey (am always). So what happens is that the pill just slows the migraine down so instead of lasting the usual 3 days of torment, it's 4 or 5. Insane.

After each one I say, "Next time I'm going to the ER to get a narcotic shot," but then I'm always barely able to make it to the bathroom, so getting to the car is a likely as getting to the moon.

This time, the fibro flare was almost worse that the migraine. Generally, my fibro isn't so bad as long as I respect my limits and break down my chores and errands into a gentler schedule than I'd like. But for 5 days I lay in bed desperate not to lay on one side too long because it hurt too much, but hating to turn over and move my poor head too frequently... and then getting scared to fall asleep.

Does anyone else get terrible nightmares when they sleep when in dreadful pain? It was all horror movie, Friday 13th stuff. I never watch those things, I'm kinda sensitive. I've never been so terrified in my life.

I've just started taking Topamax as a migraine preventative medication. Anyone else take it?

Oh, it just feels so good to share!  ;D

Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: Piebird on May 22, 2012, 12:32:25 AM
I get migraines and they send me into fibro flares.

I take Amitriptyline as a proactive measure. It works well for me. I hope you get some relief too
Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: susanep on May 22, 2012, 01:55:44 AM
I haven't so much had the migraine, but have had the fibro flare. Every joint hurting, and one foot feels like it was hit by a hammer, and I am limping when walking. I have been so tired, and really stuck on the couch or in the bed.

Today was a bit better, so I am hoping mine is on the way out for a while. It was storming most of the day today, and I went out looking at a few plants I wasn't able to get set out yet, and one didn't look good, so there  I went with a garden tool, and planted it, to at least give it a chance.

Got to go see twin great nieces graduate from kindergarten Wednesday, and we both go to the doctor Thursday. lol....

Hope you folks get to feeling better soon.

susanep :)
Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: sktaylor on May 22, 2012, 03:23:04 AM
I also get migraines with a flare that can last days. I tried Topamax several years ago, but it did not seem to lessen the migraine and the side effects were terrible.
I usually end up going from chair to bed and back again until it passes. I know what you mean about needing to roll over because of the fibro pain but unable to move because of the migraine pain.
I really don't have any suggestions. I guess you could say I have just learned to live with it. They have been going on for so long now, it is a part of my life. Not a part I like but just something else I have to put up with.
Hope the Topamax helps you.
Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: mshistory on May 22, 2012, 04:30:04 AM
I get frequent migraines. Have you tried other triptan medications? Right now, I'm using Relpax. The right triptan medication should stop the migraine by constricting the blood vessels that are causing so much pain to begin with (Imitrex is generic now too - I wish it worked well for me!) What works for us can change over time as well. Relpax is the third medication I've used.

I think it's time to see a doctor about preventatives since I seem to be getting those darn migraines quite frequently now.
Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: Suzie on May 22, 2012, 05:00:55 AM
Oh people, I love you so!

Thanks for sharing - you have helped me so much today - definitely helped me to not feel like such a freak. ;)  I'm sad for you guys that you suffer like I do, but so glad I'm not alone.

I've tried one other triptan, Relpax, but it wasn't any good for me. This one worked a couple of times. Big sigh. I just don't know. I guess it's back to the doc to try another one.

My neighbour's big tree that overlooks my yard is in bloom with gorgeous purple flowers. It blooms for one week only and I'm so grateful to be up and out of my bed and sitting here enjoying the view.


Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: quietdynamics on May 22, 2012, 09:32:44 AM

I have been taking Topamax and it has been a very good experience. I get hyper-sensory prior and during the headaches, vertigo, nausea. room tilting? I have gone to the ER twice for these headaches and twice Drs. check for stroke.
Having recently moved the medical care where I live now is much better. I am being treated by the neurologist who the ER contacted.

Dr. started me at 25mg and was slowly increasing dose. There came a point where my stomach reacted and Dr. said to discontinue.
But, I asked if I could just go back to the initial 25mg as it provided relief. (I had had these headaches once for an entire summer and just did not want to revisit that experience. I had never had headaches before.)

Dr. also had me keep a diary to bring to appts.  Date/time/ where headache is/ activity

Now I am on a preventative/maintenance dose of 25mg am/pm and I take 25mg 20minutes before I leave home and am going to drive or be in a potential triggering activity (as shown by my diary) and I carry an extra pill with me.

Lately, I have been teaching my daughter to drive...........stick..... she is such a sweetheart and so proud. She is really doing well. We went in the late afternoon Sunday so we could put the top down....she really wanted photos of her long red hair blowing while driving the "little red honda del sol" ...........took 25mg before we left and one when we got back. Was in bed by

Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: Suzie on May 22, 2012, 01:01:24 PM
Just having my daughter in the car with me is enough to bring on a headache, never mind teaching her to drive! I'm glad to hear of your success with Topamax. Driving anywhere is definitely a trigger for me. I need to take my daughter to the mall ASAP, shopping  :(. Would you be taking an extra dose for something like that, or bring your usual dose forward?

I got this from Medscape: Approximately 40% of all migraine attacks do not respond to a given triptan or any other substance. If all else fails, an intractable migraine attack (status migrainosus), or an attack lasting longer than 72 hours, should be addressed in an urgent care or emergency department. In rare cases, patients may need to be hospitalized for a short period and may need to be treated with intravenous valproate or dihydroergotamine (intravenously/subcutaneously/intramuscularly) for a few days

Why on earth didn't my GP or neuro tell me this? When I staggered in to see my GP after my terrible 5 days, he had very little to say to me. Yes, I know that doctors are human too, but I was truly in a shocking state. Time to find a new GP.

Dammit, I think it's coming back...
Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: Piebird on May 22, 2012, 02:09:58 PM
Suzie - You are totally not alone.

Like I said Amitriptyline works well for me as a proactive med. They keep the migraines down to 1 a month or less.

When I do get them I am helped by Zomig. I sometimes have trouble telling if it is a regular headache or the beginning of a migraine. The Zomig will help me even if the migraine is already in full swing.

It leaves me feeling like I have been hit by a bus but the head pain is controlled.
Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: quietdynamics on May 22, 2012, 02:30:59 PM
Oh no.....the MALL.

At least with the driving lesson I do that after traffic hour, on back road and with the windows open...numbing my senses.

I do not know where you are in your start/dose with Topamax. I would keep a diary (as my Dr. asked me to do). You may hit a level where you can back-off and reduce the dose.  Even better is when one med takes care of more than one symptom. My headaches lasted for weeks and once an entire summer. I sip gatorade or pedialyte  to avoid dehydration -----> wonky electrolytes.

My script is for 50mg. x 2 am/pm.

As I mentioned it was slowly increased...but my stomach could not tolerate the higher dose.
Now I cut 50mg in 25mg x 2 am/pm.....and before I have to go out (esp driving I take an extra preventative 25mg (3-4 hrs after morning dose) and if I need carry some with me to take an extra 25mg....rare.)

I have not had a headache in months. When I did go to the ER they were going to admit me.

I think the key is keeping the level even to prevent to onset.

Clinical pharmacology of Topamax

-Topamax is absorbed well and peak plasma levels are reached in 6 to 8 hours.
- The half-life of Topamax is approximately 21 hours with normal renal function.

Steady state
Steady state is reached after 4 to 5 days in patients with normal renal function. The dose that a patient takes should not be increased until steady state has been reached (or some time later), so that the effects of the previous dosage can be assessed.
Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: Suzie on May 22, 2012, 10:44:57 PM
Piebird - I'll definitely ask about Zomig as it helps you even after the party in your head's started. "Hit by a bus" LOL! Yeah, I often feel that way on a regular day anyhow, but at least you don't have labor pains in your brain, right?

I guess they didn't give me Amitryptilyne because I take another kind of antidepressant already, Effexor. My neuro said it's actually also used to help against migraines, but it aint working that way for me!

Quietdynamics - You're right, I'll start my headache diary right now. Headache, check. I've done 3 days of the Topamax, 50mg at night. No ill effects, unless you count my brain ache. I don't know why it's so much. I think my GP just didn't give a darn. I can't get in to see my neuro for 3 months! I think I'm going to cut down to 25 daily for this week, then go see a different GP. I read that that is the normal starting dose.

I'm hoping I get the appetite reduction side effect. Even though I can't eat during a migraine, I sure make up for it in between. There's got to be an upside to all this, hasn't there?

It's funny - I can't stomach water during a migraine and I usually crave something fizzy and sugary when I don't really drink soda and hate the feel of sugary drinks on my teeth. This time it was Coke and I'm not a big fan. Maybe my body wanted the caffeine or something? Usually caffeine doesn't help my migraines at all, although alot of people say it does?

Your driving lesson sounds rather calm and lovely - compared with my planned trip to the mall anyway. :P I hated shopping when I was fit and able. Now it's torture. At least when I shop alone I can wear earplugs to block out the dreadful noise (why oh why do they think we want to shop in a night club?). I have finally mastered the Greek for ,"Please turn the music down - or off,". It's only taken 5 years of living here.


Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: Piebird on May 23, 2012, 01:20:50 AM
I am on an antidepressant, citalopram, as well as the Amitriptyline proactively for my migraines.

Also, the Amitriptyline works really well for my Fibro symptoms!
Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: quietdynamics on May 23, 2012, 01:13:18 PM

. Suzie
Hope you made out (survived the mall  ;))

Just came back from appt with my therapist, who is a Nurse Practitioner and writes/ manages my meds. I am really blessed to have her she graduated from Columbia University/ Medical and NYU and is really sharp.

I just had an appt with a new GP and was not very impressed. Showed him my feet were blue and he asked if I was I mentioned that I get "electrical quick bursts/pains?" in the left side of my chest and he said nothing?

Rochelle (NP) told me to bring this up with the neurologist and the rheumy; that GPs' don't know what to do with this type of symptom.

So I will add this do my diary.  The neurologist was going to investigate the numbness next anyway. He got the headaches and sleep under control and I am so happy.

You can call the neuro, you don't have to wait for an appt to ask a question or voice a concern.

Daughters driving: We are along the Delaware we did have to cross a narrow metal bridge. At one point she asked if I could put the radio on to help calm her.....not in this  I did mention that I did take 25mg when I got home, put on the fan and crash (nap)  for 2 hours?  Even daughter got worn out by all the maneuvers, winding road and I did drive the last part home.

Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: smallfry on May 23, 2012, 11:18:26 PM
Until my sjs took a turn for the worse 12 months ago I have never suffered from migarines.
I now get what they call complex migarines the nuerologlist wanted to put me on valoprate but after seeing my GP we decided to go with Sandomigarine.
I take 3 per day it had stopped the migarines I tried to come off them a few weeks ago with no luck.

Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: quilt4fun on May 24, 2012, 08:12:30 AM
You guys make me feel fortunate!  My migraines only last for 24 hours. 
I don't take anything for them since they are so few and far between.
Just coming off one this morning, Top of my head and right side of face are still a little touchy.
Title: Re: 5 Day Migraine with Fibro Flare - anyone else so blessed?
Post by: Suzie on May 24, 2012, 10:37:59 AM
I made it back from my dangerous mission to the mall with only tiredness and a regular headache, no migraine. Score!

Quietdynamics - it sounds like you got a doc out of the same mould as mine. Idiots both. You're right about calling the neuro. I don't know why we didn't - my husband is usually embarrassingly pushy and forthright, but not when it comes to our health.

Smallfry - Isn't it the most shocking thing, to suddenly be struck down with these things? If you don't get any side effects from your miracle pills and they've stopped the migraines totally, I'd stay on them forever!

quilt4fun - yep, that's definitely something to be thankful for! I'd LOVE mine to be that short. A dream! I hope you recover from this one speedily and don't get another for a good long while, with any luck, never!

 :) Love to all my fellow migraine sufferers