[cispence98]

Hi everyone I have a question I have been getting really bad migraines lately (last few nights to be exact) I used to get them about 10+ yrs ago the reason they gave me back then was the birth control pills I was on!! Well...
I am not on BC pills and its really odd how they came back with a vengence I haven't read about this being a symptom of lupus, but does anyone know if it is or if anyone else has been getting them I am going to rheumy at the end of the month so I will talk to her then, til then any info or help is appreciated!! Also what meds help you if you get them I took Vicodin...no helpand darvocet...no help any med I should ask about?!

 

[helloos]

I too get these weird headaches that nothing takes the pain away.

I don't know if pain meds would do good for the head. I know that some pain meds, when coming off them can cause a headache all in itself.

I tried some over the counter headache meds and some of them have worked and took the edge off.

Maybe asking your doctor by phone if there is something you can take along with any other meds you may be on.

Try laying in a dark room, with an icepack, sometimes that helps me.

 

[cispence98]

Thanks I should have mentioned that I do use the ice packs on my head and I wear a eye mask during these headaches I am going to call the doc I just didn't know if this was a new symptom or just random, thanks for your reply nothing new as far as meds go so I don't think its a reaction to meds wish it was that simple to pinpoint its not even that close to that time of the month to blame it on hormones although I do turn 40 this yr maybe its just old age:rotfl:
thanks for your help and I would love to hear from anyone else that gets migraines, I don't know whats worse the unbearable pain in the head or feeling nausea
thanks!!

 

[PrincessDi]

I also get migraines/severe headaches which last for days at a time. No drugs seem to work on it. My rheumy said it is a lupus thing and it does tend to happen when I am heading downhill.

 

[halfpintfl]

Hi Laura, I am not sure if migraines are on the list of "must-have's",
or not, but somewhere I read that they very often acompany a lupus
person, or a flare. I inherited mine from my mother. I use a spray under my tongue which contains feverfew but if you can't get that I would do the ice and dark room thing. Let us know.

 

[SoCalEric]

Migranes are the first symptom that drove me to see a Doc. MANY years ago.
Do you get a visual disturbance? I usually get a visual disturbance that will last for 15-30min., then the headache will set in for about 24hrs. One thing my Doc. recomended way back when. During the visual dist. take 4 Advil (800mg) AND a high dose of caffine (coffee, soda w/added caffine). It must be during the visual, afterwards is too late. I tried this and it seemed to help. It's been years since I've tried it. These days I'm on blood thinners so no more Advil or asperin.
These days I still get visuals, but the headaches don't seem to be as bad...or maybe I'm getting used to pain, I don't know.

Best Wishes,
Eric

 

[Jenkay]

Sorry to hear about your migraines. I've had complicated/seizure type migraines the past two years, I have them all the time. If things get really bad a neurologist may need to be sought out. I've tried some different anti-seizure meds and depakote helps a little. With mine I tend to go unconscious and the depakote seems to prevent that but I still get the migraine and all its symptoms.

My newest neuro said these types of episodes are a-typical and directly related to the lupus so they are a bit different than migraine.

I'm just waiting for spring because things seem to get a bit better then.

Hope you are well.

 

[jane1]

Hi....yes...me too get them.......when flaring......jane

 

[chloe girl69]

awful things

Hi Laura,
sorry to hear about these awful migraines.
I never use to get headaches or migraines before I was diognosed with lupus.
Now I get them every week. :worried: Mine can sometimes last for days.
The only medications that helps me, are the ones that make me sleep. The doc told me this is all part of lupus.
Good luck Laura

Denise

 

[JudifJ]

Hi

Migraines were one of my first symptoms, especially visual disturbances, in my teens. They went away until my 30s when I was pregnant and I've had them on and off since then.

My other type of "lupus" headache is one that can last for days if not weeks and nothing will stop it. (high dose of steroids helped but can't do that all the time).

Since I've been treated for sleep apnoea the longer lasting headaches have improved but I still get the stabbing ones (like an ice pick in the skull).

I haven't been dxd yet but have APS symptoms (among others) and positive Lupus anticoagulant so my headaches are probably vascular in origin.

Hope you get some relief soon.

Love Judi xx

 

[ALWIN]

Me too

Don't know what will take away the pain, but a doctor found a way to prevent mine ...

Like Judi, mine started in my teens, and eased up in terms of frquency later in life. In my teens they used to 'cure' themselves by inducing sudden vomiting. After vomiting, migraine lifted almost immedaitley. Even certain smells could give me a migraine??!!

Later migraines were just unshiftable bad headaches, but infrequent, and I just put up with them.

Around late 30s / early 40s I started to get them for 2-3 days at a time, sometimes 2-3 times a week. Felt like putting my head through a wall to stop the pain.

Saw a neurologist whilst being checked for ? MS last year, and he diagnosed migraine again (causing visual disturbances, pins and needles in hands, speech diificulties - I had no clue you could get pins and needles from a migraine). I never had these symptoms in the past, so I was sceptical because I did not always get the typical headache with these symptoms.

He asked me to try half the minimum dose of a betablocker, which I am still on, and I have only had 2 migraines in around 14 months. For me, this is success indeed.

So, for me, it must have been mainly vascular (have Hughes, Sjogrens, mild lupus).
I am eternally grateful to that man.

PS: No side-effects what ever, except my BP and pulse are like that of an athlete .... which I am way off!

Oh, and I've now injured a nerve, so got different pins and needles now!!!

Hope you get somewhere with this.

Good luck

 

[Tallulah]

Hi, I'm another who has suffered with them since I was a young child. I also have the aura and sometimes stroke like symptoms. A beta blocker and amytriptylene did the trick for me and I'm happy to say that I've only had 2 or 3 in the last year. Hallelujah! The beta blocker has made my raynauds worse tho, can't win them all.
Hugs. Tallulah

 

[macfamily53]

Dear Laura

I know you most certaintly got enough advice on what to take for them but thought i would share what and why i have to take them.I was getting them way before being diagnosed with having lupus then once i was diagnosed and was on the plaqunil they for some reason got better.Of course that lasted about two years and are now back again grrr.I absolutley have to say i think i almost hate the migraines then pain sometimes.I do finally have something i take for mine but everyone is differant what works for them but it is Imatrex for mine and it works wondeful for me.I would defantely ask about them and what to take when you go but maybe you could call in and see if they will prescribe something to get you through until you see the rhueme the end of the month.Hope you find something real soon.I am not at all if i know what they are from though and never asked really.



Tammy

 

[MichelleAnn]

The only thing that works for my severe lupus headache is prednisone. I also get daily chronic migraines but advil or percocet takes the edge off. The severe lupus migraine is unbearable and usually goes with my flareups but not always. Hope you find relief soon!! Take care.

:give_rose:

 

[cispence98]

Thanks to all for your kind best wishes and sharing with me, I have had these yrs ago and did get loss of vision with them back in my early 20's they stopped after the birth control pill, they said that was the cause:hehe:
Anyway I see the rheumy soon so its high on my list because I again had one a couple of days ago who knows maybe its the same one and it got better for a while and then came back again!! anyway I feel like I am going nuts!!
Thanks again for all your comments and sharing!!

 

[Sage Hen]

Hi,

My Headache history is much the same as other's that posted..

I am sorry you have to deal with such painful headaches..

Get Well Soon,

Sandy

 

[freakyschizogirl]

I have bad headaches and migranes that last days to, it really is the most annoying thing.

I have very strong tablets from my doctor that space me out...but do get rid of migranes called paramax. Like i said tho, they are very strong and i'd rather not take them unless the migrane is severe. Otherwise i take paracetamol and ibuprofen.

 

[BKK]

Hi Laura,

So sorry to hear about your headaches. I too suffer from these. I went for many years with headaches until I found my Dr. that I have now. He put me on a betta blocker. WOW what a difference. I still get one that will break through, but I can take something for it and it will help. The beta blocker has been a true saving grace.
Ask your Dr. about this.
Hope this has helped.

Love,
Sonja

 

[setApart]

I have migraines/headaches going on for about 4 weeks straight now with not much relief. I have only had like 2 migraines my whole life. I was recently dx w/ sle last year. I'm having a horrible flare at the time right now too flu-like symptoms, I also have peripheral neuropathy which I take Zonegran for. My question is my nose has recently been feeling numb. I'm wondering if I should see my GP as nothing I take seems to give me much relief from these headaches and now the numbness on my nose has me kinda worried.:worried:

 

[hardcandy]

I, too, have been having a bad migraine bout, which can last a month or more, and consists primarily of neurological symptoms. Like many of you, it was the first thing I was diagnosed with, years before Lupus.

I take feverfew (herbal supplement) every day (my neurologist recommended it, along with coq10 and cal/mag), and it's made an amazing difference. Now it seems the migraines return when I change brands of feverfew or if I'm having a flare. My doctors all always seem very interested as to whether I'm having migraines, including my rheumatologist, so maybe they count them as a marker for disease activity? Dunno.