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allisono
10-10-2010, 04:52 PM
I have been having more migraines the last five months than I have had in a long time. I began taking topamax about six years ago and since then the migraines virtually went away until five months ago. My lupus symptoms also became worse about that same time. Many of these migraines come on after I have been in the sun, I do not get photosensitivity rashes however. I assume these migraines are related to my illness. I know I need to make sure I have sunscreen on and stay in the shade as much as possible. Does anyone else get migraines? I am really tired of losing entire days to them.

Nonna
10-11-2010, 03:41 AM
Welcome to my Life.
I've had this problem since I was 18. I had a mild sunstroke or so it was thought at the time. But it is all Lupus related; you don't have to get the complete molar rash to be photo sensative. I get a red butterfly on my face and that's it. I get migraines from the bright light and even wear sunglasses on cloudy days. If I could find a pair dark enough I'd be really happy.

So you are not alone in this. Migraines are not fun, but survivable.
Meds, a dark room and soft music has worked for 40 years for me.


Hugs
Nonna

hopenfaith
10-11-2010, 09:12 PM
Hi Alisono,
I think Childbirth is more tolerable than migraines!! The worst of the migraines I ever had sent me to the ER after 3 days of HORRIBLE pain and blurred vision. The episode lasted a full week!!! Not fun! Luckily I have not had one in about 6 months. I also suffer from seizures as well. Lupus is a phantom that will rob you blind and knock you on your butt!! Some of the more popular meds for migraines have side effects that are nasty, not to mention the toll they take on the kidneys. Valerian root is what I will try the next time I have a migraine. It is supossed to help with the seizures as well. I am in the midst of saving my money to see a dr in Mexico that is a referral from my husbands uncle. I wish you well in our world. Take care and God bless you.

Shantelle
10-12-2010, 02:16 PM
Hi there
I don't know if this info might be helpful for you, but i'd been battling migraine headaches for years and only now (being monitored for DILE or onset SLE offically since Sept) i'm realising it was my possible first Lupus symptom. What I've found helps is ensuring I eat regulary every 3-4 hours. If I go for long periods of time without eating something e.g. 4+ hrs, my blood sugar gets low spurring migraine headaches. When I get these migraines the base of my skull at back of my head is throbbing and extremely painful, and my eyes are very, very sensitive to any light. I'd be in tears when they happened. I have no idea why low blood sugar spurs these migraines but just thought i'd share this incase anyone else finds this helpful. I'm glad to have found what my trigger was!
Best, Shantelle

Saysusie
10-12-2010, 03:52 PM
Migraines are, absolutely, related to the disease. They are actually called "Lupus Headaches" and they often occur when the disease is active. These headaches, for all intents and purposes, are just as painful and debilitating as migraines. However, they do not often respond to migraine medication. When the underlying disease (Lupus) begins to be controlled by medication, then the Lupus Headaches often lessen too.

I have chronic migraines/Lupus Headaches and, since I've been in a flare-up for over a month now, the migraines have been almost a daily event. I hope that you get some relief soon. Here are a couple of websites with a bit more information:

www.relieve-migraine-headache.com/lupus-headache
http://www.ehow.com/how_4472166_treat-lupus-headache.html

Peace and Blessings
Namaste

Linda From Australia
10-12-2010, 03:59 PM
Thanksfor your help again and for the links. Will you mind copying the first link again, I cannot access it.

Saysusie
10-12-2010, 04:04 PM
http://www.relieve-migraine-headache.com/lupus-headache.html

I hope this one works

Peace and Blessings
Namaste
Saysusie

Linda From Australia
10-13-2010, 12:42 AM
Thank you for your links, they are very informative. I heard of Lupus headaches, but now I understand it a bit more.

Angel Oliver
10-15-2010, 06:31 AM
Im sorry to hear you suffer with the dreaded migraine.Over tha last few months ive had some bad ones and am on meds for them,migraleve i think theyre called.They do help,but a dark room n comfy bed is helpful.Hope today they are leaving you alone.

thinking of you
love Amanda.xxxx

gin
10-27-2010, 01:20 AM
I have been having more migraines the last five months than I have had in a long time. I began taking topamax about six years ago and since then the migraines virtually went away until five months ago. My lupus symptoms also became worse about that same time. Many of these migraines come on after I have been in the sun, I do not get photosensitivity rashes however. I assume these migraines are related to my illness. I know I need to make sure I have sunscreen on and stay in the shade as much as possible. Does anyone else get migraines? I am really tired of losing entire days to them.
Oh yeh I get horrible migraines; also the other problem with me is I have DDD in my neck which Lupus makes worse; so if I lay on my back I start getting a migraine in or on the two large bumps right above my hair line on the back of my head in then the headache moves up to the middle of my head up to the top of my head. and it gets really bad so much so that I would be okay if my head would no longer be on my shoulders because it just get horribly bad and I can either wake up with a headache or go to bed with one sleep the day away and still never get rid of it. There are times that I wake up with one I wish I would not wake up so yeh I get them and get them bad!

rob
10-27-2010, 07:02 AM
Oh yeh I get horrible migraines; also the other problem with me is I have DDD in my neck which Lupus makes worse;

Hi Gin,

Does DDD stand for Degenerative Disk Disease?

Rob

PS-Welcome to WHL!

corazon170
10-27-2010, 10:43 AM
Hi...I've had lupus for 7 years now and the migraines vary for me. Stress definitely trigger it as well as not eating when I'm suppose to. Overall sometimes nothing helps but waiting it out. It's nice to know I'm not the only one who suffers from the painful migraines.

I hope your migraines get better. Some days are definitely better than others.


Betty

tgal
10-27-2010, 03:28 PM
I have had migraines since I was a child. I use to get the so bad that I would lose sight in one eye. There were no meds for them back then so they just gave me cocktails of morphine and Demerol until it went away about a week later. Of course stress was a key factor but my trigger food was chocolate. When everything was set up for a migraine i would begin to crave chocolate like crazy. I would tear the house apart looking for some. As soon as I ate it I would be down for the count. I had them until I had my hysterectomy 14 years ago. After that I would have maybe 1 or 2 a year and only for an afternoon. About 3 years ago (when I began to get sick) I noticed them coming more often and getting more severe. Luckily mine seldom lasts more than a day now and throwing up, a dark room and silence will eventually make it go away. Looking back I now see so many things that were going on when I was a child that relate to what is happening to me now.

Ohhh the joys of being ill

rat
11-10-2010, 11:08 PM
My wife wanted to go a see a particular psychic, we were there with 5 of her friends at the second last, the psychic came out and was white and said is any body here have a friend who has a brain tumour. No one put up their hand next time she came out I thought it had all finished then she pointed at me and said come with me. I said I was only here as a taxi driver, she said no you are coming with me. We get into the room and she says its you isnt it, I said I did not believe that I had a brain tumour, she said it has to be you I have this pain in the back of my head my eyes cannot focus and I want to vomit, I laughed and said that is a Lupus head ache, I get them all the time, she says that she gets migrains but this is so much worse, then said oh its gone now it has been aknowledged, she then went on about how do you put up with them, she just wanted to kill herself in that short time she had it.
As a post script, I found that sunlight was a problem but cold was the main instigator and this was from the aircon in the car hit the back window and coming back and hit the back of my head. I now keep a beenie with me and put it on at the first sign, normally my eyes going off and I make sure it covers from the back of my ears and neck, symptom goes in minutes. I think it is a Raynauds style problem, but my doc just laughs, but hey it works for me.

BonusMom
11-11-2010, 07:48 AM
I've had moe migraines in the past year than I've had in my lifetime.

I've kept a symptom diary and it was looking like it was related to my menses. Now I'm not so sure. The location has changed from frontal to the back of my head, where it feels like I have knots.

My Topomax was just increased to 300 mg daily. I have no energy and feel generally achy and unwell-much different than I was 1-2 months ago when it seems like I had unlimited energy.

I've missed a lot of work due to the headaches.

smokerscat94
11-16-2010, 08:50 AM
I can definitely relate! I have been having horrible migraine or (lupus headaches) for 14 months now. They have tried several different prophylactic meds to prevent them. Currently on Depakote and Gabapentin to prevent them. Tordol, Phenergan, and Vicodin 10 to stop them. But I have found just in the last week by my primary increasing my prednisone to 40mg that my migraines are much better. However every time they try to taper down again they get really bad. They are now talking about another mri and a possible spinal tap. So I know how you feel. You are soooo not alone. I really hope you get some relief soon.
((((Gentle Hugs))))

mountaindreamer
11-16-2010, 03:58 PM
i also struggle with severe headaches....most of mine are in the back of my head (close to my neck). My rheumy and i think these are associated with the fibromyalgia (because of all of the trigger points in the back of the head). I also get piercing pains in my temples...all of horrible. My mind is not working so great this evening, but i believe i have been told that mtx can cause headaches too.