Migraine

I have been having horrible migraines for years now I think out of all my symptoms that is my most debilitating ailment. I was wondering if anybody else has these problems associated with migraine on almost a daily basis…numbness on the left side OT my face…eye lip and nose twitching. Tingling in both feet carpal tunnel in both hands.painful stiff neck, Muscle weakness In legs and arms.fast heart rate and skipped beats. And severe dizziness…these are the symptoms I have along with a severe migraine.but have a lot of them on a daily basis just not as bad. I really don’t have too much joint pain just really bad fatigue and malaise. lots of inflammation. Anybody experience some or all of these symptoms?

Hello Christine,

I get migraines also but they seem to have been better lately or maybe it is because I take my meds right away now. I get a lot of the same symptoms but the numbness doesn't last long. I do get the dizziness and double vision quite a bit but the migraine headaches are getting to be better. Hopefully you take something for the migraine or see a nuerologist.

Thanks for the info can I ask what you are taking? I saw a handful of neurologists and I’m making an appointment with a headache clinic one neuro said I had vasculitis one said I didn’t others just said its from the fibromyalgia…get a run around every time I go. I’m taking cymbalta right now trying to treat the fybro but that’s not helping…Grrrr VERY frustrating!

Christine....

I also have Migraines, I take topamax for a seizure disorder not realated to Lupus. The side effect is a bonus in that my migraines are few and far between. However, it is a daily pill at bedtime, and it has to build up in your system first. You will not get relief, if your going to get relief, right away. Also you have to have liver panels done at least even six months. Also, if you are not already take NSAID's and have no stomach problems Excedrine Migraine can be very helpful, if taken immediately upon on set of first symptoms. Talk to your Doctor, there is no reason to suffer further. I would advise staying away from Imitrex though if you are already having heart problems. I am allergic to it, makes my heart race irratically! There is also a drug called Neurotine (spelling error)....it has off label uses for Migraines and numbness/tingling. It is said to be a good nerve pain drug, however agian not a quick fix and you must let it build up (increase dose to theraputic level) in your system. Again you need to have liver panels done. I am not a Doctor, but just my two cents for what has worked for me!

Thanks nd I have heard of this meds. I plan on getting something other than the cymbalta asap. Going to call my doc today!

Good for you! Being proactive and knowing some options before you go to see you Doctor is always a good idea!

christine aiello said:

Thanks nd I have heard of this meds. I plan on getting something other than the cymbalta asap. Going to call my doc today!

Yes I have the same problem after many holter monitors and stress tests and an angiogram I was told pretty much the same thing as you…never told any thing was related to lupus but I only get them when I’m feeling very sick. If you send Me your email I have something informative I can send you on heart problems with auto immune diseases. So scary isn’t it? My heart races so bad at night sometimes it wakes me up and the weird heart beats happen for no reason…I hate it :frowning:

Hi Christine - I had a funny feeling someone would reply to this. I def. think it is related to Lupus or really any Autoimmune, beacause there are so damn many, lol! Anyway, yep the waking up at night, with the weird heartbeats, is scary and really annoying! Stress, makes it crazy....but therefore stress makes lupus in general crazy! I even had an EP Study, in 1998 where they actually had me in a catherization type setting, mapped out the electrical impulses within the heart, found the arrythmia within the sinus node and kept me there for four hours, while they burned the sinus node, kinda like to kill off the abnormal cells (mind u it was equivalent to microwave heat, type of burning=AGONIZING PAIN, on only 5mg. of valium the whole time because they "Need u Awake") only to have it not work. my heart rate reached 220 on the table, I was literally bouncing on the table, thought i was literally going to die that day! I needless to say, walked the cardiac recovery area after the procedure w/ a holter mon. type device on, wiped out, in pain w/ my heart rate still close to 200bpm. It never helped, actually after I was worse, along w/ the pain of scar tissue forming on the burned muscle. Sounds Insane, but it is the truth. So after i tried many beta blockers, w/ no improvement, only side effects such as severe drowsiness, I gave up. Not on anything now. I also after the birth of my youngest son 5 yrs. ago had problems, had stress test, they thought I had a blockage, was put in for a catherization, wasn't a blockage THANK GOD, it was a shadow they saw. So I was told that someday, prob. in my 30's/40's I would need a pacemaker. Don't have one yet, and I am 34. i had my kids before 30, like they advised, so who knows. Were u told that you would eventuallly have too slow of a heartbeat? Called Brachycardia. It actually reverses. That's what they said would happen to me. I would love to see the info you have, sorry took so long to explain. It has been one hell of a long road w/ this disease and it never ends! I know u understand. Looking forward to being friends w/u. Feel Well! Suzie :0)

christine aiello said:

Yes I have the same problem after many holter monitors and stress tests and an angiogram I was told pretty much the same thing as you...never told any thing was related to lupus but I only get them when I'm feeling very sick. If you send Me your email I have something informative I can send you on heart problems with auto immune diseases. So scary isn't it? My heart races so bad at night sometimes it wakes me up and the weird heart beats happen for no reason...I hate it :(

Hi, I also have severe migraines nearly every day, and have for the past twenty two years. The WORST pain is deep behind my right eye…I press on it almost constantly, as it seems to give momentary relief. I have tried every medicine that the docs can come up with, and had migraine surgery six weeks ago, but it has not seemed to help at all. I have muscle and joint pain as well, but the migraines are the worst. Does anyone else out there experience this…and what have you found, if anything, to help? Thanks in advance! Marlene

I had headaches like these for too many years and i know how awful it is. my neuro put me on daily inderal and amitritalyne and i already take daily prednizone so i finally am headache free for the most part. I think i have only had two in the last year and before that treatment I had them for 3 weeks out of a month

Suzie, how awful that you had to go through all that. I am so sorry.