Migraines :(

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Permalink Reply by Flutterbymare on February 1, 2012 at 10:59am

I sympathize with you...I have suffered from migraines sincei was in my twenties. I have been hospitalized with them and once, God Bless my rheumy( who unfortunately has since passed on) hadme moved to a private room where he made them put blankets on the windows so I wouldnt have to constantly wear my sunglasses cause their weight added pressure to my head. Have used everything from OTC excedrin migraine, to Imitrx and now I take Relpax which works 50% of the time if I take it at the first symptoms (very important factor) - I think what is important is that I take maintenance meds like Depakote and Neurontin ( anti - seizures ). The other thing which is a daily education is learning to manage the trig ors. I kmpnow this is easier said than done. Onebthing inhad to do was swallow my pride and educate the family about migraines and trigors. 1. Don't let me eat certain foods I may love but will bring on the pain 2. Help Mom get to bed at a consistent reasonable time, this helps the whole family's health by practicing a nighttime routine. 3. Remind Mom to "chill" over the little things. After 35+ years I can finally say I don't suffer regularly from the migraines. They still come but I used to have them all the time which meant they controlled my life. Yech! My last tip would be that when you do feel the symptoms coming on, don't try to fight them. It just tenses you up. I now accept that I have one coming on, that it will be around for at least four days ( mine have a definite pattern) I take extra care of my diet, I rest as mch as I can, use my ice packs meds and meditate with visualization ( I picture the pain as a boulder that I am pushing out of my body). Relaxing takes practice. I will keep you in my thoughts and prayers because it can't be easy managing with the little ones, but ask for help. Give yourself permission, I do hope some of this helps. ~ Mare

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Permalink Reply by bern on February 1, 2012 at 11:07am

Hi Bells,

I am so sorry to hear....they are not fun...I got them so bad my whole left face drooped...no light, no noise...no nothing...I totally understand......but I finally found a Dr. (I live in Vegas) that gave me topiramate, I take 25mg twice a day and have had excellent response to it.

I hope this helps you.....good luck...I will have you in my prayers...

Bernice

 

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Permalink Reply by MsThang928 on February 1, 2012 at 3:07pm

I have a migraine right now! If you find out something that works, please post it.  I have tried everything. :-)

 

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ModeratorPermalink Reply by janice on February 1, 2012 at 3:51pm

Well, this is right up my alley bc i have suffered with horrible, debilitating migraines since I was 10.

I could not count the number of vists to the er for shots i have had to make.

then when lupus hit my migraines changed into a pain so intense i really thought I would die. It felt like a hot knife was being pushed  perpetually through my scull--horrible. And then the normal remedy: Demerol etc, didn;t even touch it. Finally my son did some research about headaches and lupus and learned about Lupus migraines. The tx for that is pain meds and nice big shot of steriods trhough the iv, and though that did work, there was always the next one to worry about. I had to stop tx with imitrex and maxalt because it was making heart unhappy. I tried nerve blocks and pressure point points and everything including trying to avoid foods. Finally the neuro put me one amitrptaline and and...? one other beta blocker--i will think of it a min and now that I am on prednisone every day the migraines all but  stopped. now i think i only had to in for a shot maybe once in the last year---

propanolol and amitrptaline---that is what worked for me...

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Permalink Reply by bells884 on February 2, 2012 at 5:36am

Thank you I will def. try some of the things you mentioned and hopefully talk to my pcp in regards to some of the meds you mentioned.

Blessings,

Belinda

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Permalink Reply by bells884 on February 2, 2012 at 5:37am

bern said:

Hi Bells,

I am so sorry to hear....they are not fun...I got them so bad my whole left face drooped...no light, no noise...no nothing...I totally understand......but I finally found a Dr. (I live in Vegas) that gave me topiramate, I take 25mg twice a day and have had excellent response to it.

I hope this helps you.....good luck...I will have you in my prayers...

Bernice

 Thanks Bernice I will def keep this in mind and ask my doc if she has heard of this med and if it interacts with any of the meds Im on now :)

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Permalink Reply by bells884 on February 2, 2012 at 5:38am

MsThang928 said:

I have a migraine right now! If you find out something that works, please post it.  I have tried everything. :-)

 

Thanks I will def keep you posted.

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Permalink Reply by bells884 on February 2, 2012 at 5:41am

janice said:

Well, this is right up my alley bc i have suffered with horrible, debilitating migraines since I was 10.

I could not count the number of vists to the er for shots i have had to make.

then when lupus hit my migraines changed into a pain so intense i really thought I would die. It felt like a hot knife was being pushed  perpetually through my scull--horrible. And then the normal remedy: Demerol etc, didn;t even touch it. Finally my son did some research about headaches and lupus and learned about Lupus migraines. The tx for that is pain meds and nice big shot of steriods trhough the iv, and though that did work, there was always the next one to worry about. I had to stop tx with imitrex and maxalt because it was making heart unhappy. I tried nerve blocks and pressure point points and everything including trying to avoid foods. Finally the neuro put me one amitrptaline and and...? one other beta blocker--i will think of it a min and now that I am on prednisone every day the migraines all but  stopped. now i think i only had to in for a shot maybe once in the last year---

propanolol and amitrptaline---that is what worked for me...

 

 

I am also on amitrptaline and all it does is put me to sleep. I dont want to sleep I would miss most of my life pass me by. I just want to share a normal day with out a migraine with my kids :)

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Permalink Reply by poobie on February 2, 2012 at 1:30pm

Amitriptyline can be taken at night- helps you sleep when you are supposed to be sleeping   I am on Verapamil for my lupus migraines- this is a calcium channel blocker   I also found large dose motrin to be more effective for pain than any of the other meds if started at the first hint of a headache and every 4 hours until well past  Doesn't work if you wait until the headche is roaring

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Permalink Reply by sunshinespraypaint on February 2, 2012 at 2:04pm

You know I read somewere that Migraines are not a Lupus symptom, but my doctor has a list to derterman how bad your lupus is and it has Lupus headaces on there.... I dont have a problem with that. Thank the Lord

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Permalink Reply by aboutmygirls on February 2, 2012 at 3:44pm

Ok, I have had migranes now for several years....but I only experienced them once every year or two and they only lasted 24-48 hours. They were horribly painful and I had light and sound sensitivity with severe vomiting. I was prescribed NASAL Imitrex because of the vomiting and I went to the ER several times and was hospitalized a couple of times because I had dehydrated so badly. That is my "migrane" history....

but then....a couple of weeks ago (before I even knew that I might have Lupus) I ended up with the worst migrane I have ever had. This migrane lasted 3 whole weeks and I wanted to die!!!! I was in the ER twice for migrane cocktails, I was given a headache cocktail by my Neurologist, and I was seen several times by my PCP who gave me injections of tigan and toradol. None of this lasted more than a day or so.

I was told to take benedryl, prednisone, tigan, etc...etc...etc... I was also told that I could no longer take the Imitrex because of the side effects and I couldnt take my fioracet anymore because of the other medications I was on .Finally my PCP gave me a shot of toradol and tigan and sent me home on prednisone and flexeril and a couple days later, it was gone.

I then found out that this was probably a Lupus Migrane. I am not sure how or why it happened and I pray that it never happens again...but I have to think that it was the prednisone and flexeril that helped cause it was gone a couple days after I began that treatment.

 

I am sorry that you are having such pain. I can totally sympathize with you and hope that you can get some relief. I wont be seeing my Rheumatologist until the end of this month....but I guarantee you that it is one of the first things that I will be discussing with him....other than the huge open ulcers I have in my nose!!!!

 

Good luck!!!

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ModeratorPermalink Reply by janice on February 2, 2012 at 3:52pm

Man what an awful ordeal...i know that pain and it is like a migraine amplified by a million. i am glad youi found what works...and i have muscle relaxers and extra prednisone too if i need it for migraine. But thank God I haven't had to use it many times, and even when I do I actually get relief. Did you feel like you had lost brain cells when the headache went away after a big battle like that? no joking (which is really hard for me bc the jokes are trying to burst out about my brain cells...brain cell.)

but seriously I felt like there was a trial of dead tissue where the pain had been...I could actually feel the path the pain took during thew migraine rampage. did you notice that?

aboutmygirls said:

Ok, I have had migranes now for several years....but I only experienced them once every year or two and they only lasted 24-48 hours. They were horribly painful and I had light and sound sensitivity with severe vomiting. I was prescribed NASAL Imitrex because of the vomiting and I went to the ER several times and was hospitalized a couple of times because I had dehydrated so badly. That is my "migrane" history....

but then....a couple of weeks ago (before I even knew that I might have Lupus) I ended up with the worst migrane I have ever had. This migrane lasted 3 whole weeks and I wanted to die!!!! I was in the ER twice for migrane cocktails, I was given a headache cocktail by my Neurologist, and I was seen several times by my PCP who gave me injections of tigan and toradol. None of this lasted more than a day or so.

I was told to take benedryl, prednisone, tigan, etc...etc...etc... I was also told that I could no longer take the Imitrex because of the side effects and I couldnt take my fioracet anymore because of the other medications I was on .Finally my PCP gave me a shot of toradol and tigan and sent me home on prednisone and flexeril and a couple days later, it was gone.

I then found out that this was probably a Lupus Migrane. I am not sure how or why it happened and I pray that it never happens again...but I have to think that it was the prednisone and flexeril that helped cause it was gone a couple days after I began that treatment.

 

I am sorry that you are having such pain. I can totally sympathize with you and hope that you can get some relief. I wont be seeing my Rheumatologist until the end of this month....but I guarantee you that it is one of the first things that I will be discussing with him....other than the huge open ulcers I have in my nose!!!!

 

Good luck!!!

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