Migraines/Lupus Headaches

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Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 426
   Posted 2/24/2009 10:07 PM (GMT -7)   
Hello All,
I haven't posted in awhile mostly because I have been suffering with migraines and/or lupus headaches. They really are not as intense as a full blown migraine, meaning I haven't gotten to the degree where I throw up and all that, but I have had a serious stream of headaches for well over a week that I just cannot shake, therefore, I'm guessing it's the good ole' lupus headaches that we get. I have tried every medicine in the book, tried resting, laying in a cool, dark, quiet room, you name it and nothing works. Just when I think I might have it under control I wake up the next morning and it's back with vengience!
I had an ablasions (could be mis-spelled) in October 2001, and am one of the lucky percentage that no longer have a menstral cycle as a result. That said, I am wondering if these headaches aren't a result of my body still reacting from hormonal changes and such. I remember I would always feel much, much worse before the ablasion and to the point I would almost go into a flare. I had horrible migraines at that time and literally they would take me down and the only thing that would stop them would be for me to get a shot that would knock me out!
For many years the headaches let up, then have slowly come back, not to the pain level to which they once were, but I am wondering if over time if that could possible happen again. Lord, I pray that it does not happen. I am on all kinds of medicines to try and prevent headaches and I am still getting them, so I truly hope they do not come back full force again.
My question is do any of you ladies experience headaches or migraines during your time of the month? Even if you do not have a cycle any longer do you still feel worse at the time of the month that you would have normally had your period? I have never discussed this with my rheumy, but I am wondering if it is something I should discuss on my upcoming appt next week. Your thoughts?
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 2/25/2009 10:16 AM (GMT -7)   
Hi Melissa,
I had a hysterectomy (kept ovaries) last November.  I still have my hormones and I definitely feel worse about a week before my period would normally come.  I get the headaches, etc.  Interesting thing is that my headache pattern has changed since the hyster.  I have a headache probably 2 days out of every week.  So it's hard to follow a pattern if they're due to my hormones.  I also wondered if my headaches were Lupus oriented, but all my blood work says my Lupus is dead quiet. I have absolutely no inflammation happening.  So I'm chalking it up to stress, my Fibro and possibly my hormones, and most definitely changes in the barometer. I get weather related headaches BAD!
Where are you headaches located?  I get mine behind my eyes and forehead mainly. I'd tell your Rheumy about these for sure. Headaches are so draining aren't they?  I wish you well, sis!!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
Co-Moderator for the Lupus and Fibromyalgia forums

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 426
   Posted 2/25/2009 1:47 PM (GMT -7)   
Hi Ginny,

Yes, headaches are most draining! I can handle pain of almost any kind, but headaches knock me down totally. My headaches are mostly in the sides, right about the temples, sometimes behind the eyes as well. I have discussed this with my doc before, with a neurologist as well, they have me on topomax that is supposed to alevate the headaches, supposedly the effexor I take is supposed to help eliminate them as well. It did help for quite awhile, they never went totally away, but certainly reduced in the number I had per month as well as the intensity. But here lately, it seems that I am getting more headaches and I cannot seem to get rid of them. While they are not as intense as my migraines used to be, they are harder to get rid of.

I'm going to go ahead and bring it up to my rheumy again, but I'm not sure he will have any answers, other than it's part of lupus!

If anyone has any tricks of the trade I would certainly be open to trying them.

Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 2/26/2009 7:55 PM (GMT -7)   
Hi Melissa, I usually get headaches around that time of the month then all the sudden last month I started having them 3-4 days a week usually starting on Thursday at work. It went on like this for almost a month then all the sudden I had one every single day for over a week, I am not talking about little nagging headaches, I am talking full blown, light sensitive, sound sensitive and nausea. I ended up being out of work all week and that is not like me at all. Turns out it was probably the worse lupus flare I've ever had, rheumy put me on Pred for 10 days and it helped a lot. I'm still having them but there not as bad as before. I ended up in the ER they did a CT scan and it was clear a couple of days later an appt opened up with a neurologist, he said mine were like a tension / migraine. He wanted to me start a preventative, I was excited but then had severe abdominal pain. So now he wants me to try neurontin.

Definately keep a headache diary and talk to your doctor about it. I do hope you find some relief soon!
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)

New Member

Date Joined Feb 2009
Total Posts : 7
   Posted 2/27/2009 2:13 AM (GMT -7)   
Hey Melissa,

I get migraines with flares of my CNL lupus. I take topamax along with verapamil (a calcium channel blocker normally used for hypertension). I originally took neurontin, which helped my small fiber neuropathy, and lessened the headaches, but caused severe cognitive disfunction. I'm a Ph.D candidate and lecturer at a university, and my students and committee didn't particularly appreciate the fact that I suddenly turned into a complete idiot...even though i felt pretty great, if foggy. I then switched to a high dose of topamax (or dopamax, as I've heard some people refer to it :)); the drugs side effects were initially almost as severe as the neurontin, and not nearly as effective. My neurologist then lowered the dose of topamax and added the verapamil, and I've been migraine free since December, and functioning nicely on the mental front. I do however, find that I experience dull, behind the eyes headaches during my menstrual cycle, and while they're not nearly as bad as when i was suffering migraines, they are a considerable inconvenience. When I do have such a headache, I find it really helps to do something to get my heart rate up (jog up the stairs in my building, brisk walk, do a few jumping jacks in my office) and then sit for a few minutes with my head between my legs; it sounds silly, but it always seems to get the blood flow back in my head and wipe out the headache. Also, those migraine cooling patch things you stick on your forehead seem ridiculous, but they feel great.

Have you considered other causes of your headaches? Mild dehydration is often the culprit in many individuals. I also see you're taking Norco; any painkiller that contains hydrocodone has the potential to cause 'rebound' headaches, in which the brain misinterprets the effects of the painkiller. I used to get such headaches when i was taking a lot of vicodin, and they were very similar to the headaches that you described.

I really hope you find something that helps!


Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 426
   Posted 2/27/2009 11:18 AM (GMT -7)   
Hi Christrian,

Thanks for the input. Yes, I take Norco for pain, trust me I wish I didn't have to take it. I actually have an appt with a pain clinic on the 10th to explore other avenues to eleveate pain as I do not like the fact that I have to take 6 to 8 Norco a day. I am going to look up the side effects, I didn't realize headaches could be one of them.

I have been on Topomax for a number of years, it helped immensley in the beginning. I was migraine/headache free for quite awhile. The last 6 to 8 months however they are slowly creeping back into my life and becoming more intense with each one. I too have been on the calcium channel blockers, I believe it was about 3 years ago my cardiologist and neurologist decided to pull me off of that (don't remember why but I remember it made me really sleepy).

Brain fog is the worse, when I was working I remember feeling like such an idiot because I would loose simple words as a result of my CNS lupus. I have a BS in Business Mgmt and handled the training for my company, I traveled around the country holding training seminars. I wrote the training manuals and such, so braing fog seriously was not a good thing to have at work! Actually, CNS lupus is one of the main reasons I went out on short-term disability, I got to the point to were I couldn't even remember the passwords to my computer, or would forget what the topic of conversation was mid-stream, not good.

Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 2/28/2009 12:01 AM (GMT -7)   
You might find it helpful to keep a diary whether on hand or comp of what you eat or drink. document when migraine starts, and try to find your triggers by trying a thing you had and see if it can reoccur the migraine. its helped me find most of my migraine triggers.
Smurfy Shadow
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
Medications: CellCept, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D

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