[setApart]

I was wondering if anyone suffers from these? I've had them for quite sometime off and on, and just recently continuously for about 4-5 weeks along with migraines, my nose seems to go numb/tingle a little sometimes here and there and when my migraines are really bad my eyelids are swollen. I've recently started Imuran and wondering if there is a correlation as they have seem to have gotten worse. I see my Rheumie tomorrow, but thought I'd ask you guys first.

 

[Maia]

I have had chronic daily headache for almost 3 years now. Never found a reason, I have similar symptoms to you but do not suffer from migraines at all. The nose numbness is a very strange sensation, huh? Mine is always present, but varies in intensity often getting worse for several weeks straight, then occasionally so mild I can "forget" about it's presence.

The doctors don't want to say it's caused by lupus despite some abnormalities found on MRI. I did also test positive for Lyme, had to have been a delayed diagnosis so I am suspicious of that in my case as being the cause. That or lupus. For me it is very strange because I never had headaches prior to this one starting. Well, if I had the flu I had a headache or if I banged my head - but certainly never suffered from headache before for no known reason.

Medication changes are a possibility, but it's best to try to stay on it for a while because many side effects will ease over time & the Imuran may ultimately benefit you greatly.

 

[acard]

I suffer from chronic headaches. They sometimes are sinus headaches, but lately they are migraines. I have been having them since I had a TIA and seizures in December. They are called complex migraines. If you don't have a neuro, I recommend seeing one. They can help you.

I am sorry you are suffering so.


Hugs,
Becca

 

[BigSis]

Hi,
I have had a dull head pressure type headache for about six months now which some times makes me feel a little spaced out or tipsy.

Very depressing. My nose doesn't go numb but 'tingles' with the pressure.

My rheumie has been systematically trying to rule out causes but no luck so far. Currently trying a spell off Plaquenil .......also no improvement as yet. Will be glad to restart it I think.

Hope you find an answer......like Maia I was never a headachey person before Lupus:worried:

 

[Katharine]

Hello,

I too had chronic daily headaches. They had been going on for a very long time, too long to remember.

I saw a slight improvement when first put on pred and then on aspirin for APS but they still persisted.

My final improvement came with the imuran generally gaining control of the disease (which is obviously for me the cause of the headaches) and my neuro aslo prescribed a low dose of beta blockers as these can help control migraine like headaches as a base treatment.

So, I have now been pretty headache free for a couple of months. They have come back a little over the last few days as I've had a bit of a bad patch but it still doesn't feel as chronic as before.

Sometimes these headaches are just a symptom of the disease and little (other than gaining control of the disease) can be done. At other times a neuuro might consider an MRI and EEG worthwhile doing to exclude any other causes. APS is also another possibility and that can easily be detected through blood tests. The reasons are so numerous it's difficult to say. The main important thing is to keep telling your doc, say how badly it is affecting you and insist on further rinvestigation.

I know just what it's like just trying to think on a basic level with a constant headache and it is no fun at all,

:hug:
Katharine

 

[setApart]

Thanks for the replies, I have an appt today I'll stress to her the fact I have a problem sleeping they are so bad and reading and talking etc., I have though about the correlation between APS since she did enroll me in a research study for this.

 

[Jenkay]

I've had very frequent migraines and complex migraines (seizure like) for two years. I get generalized facial numbness with the complex ones. Been to a few neuros and tried a couple of drugs. Currently on depakote, which helps some but too many side effects and I'm hoping to come off soon.

Neuros all say the activity is lupus related and have a very hard time controlling them. All brain scans clean.

Rheumy has been going back and forth on Imuran for at least a year. My labs are good now even though it seems that I'm in an almost constant flare. She still wonders if Imuran would help my head but is concerned about long term side effects.

It is quite the conundrum!!!

 

[setApart]

Yes I saw my rheumie all she said about the h/a and migraines was to drink some caffiene first thing in the morning to see if it helps. She wants me to give it another month on the Imuran to see if it works, unfortunately the pass two days have been horrible with chills/dizziness/loss of appetite/nausea/fatigue/weakness/achiness/h/a, I checked my temp though and my temp was actually 96.2 go figure and I was chilled to the bone!:worried: So the Dr. actually called me in some prednisone so I hope it helps, its getting very depressing, I hope tomorrow brings a better day!

 

[Sage Hen]

Hi,

I get intense headaches..They, were worsening fast until, I started taking Cell Cept. I already took Neurontin, plaquenil, and pain medications for lupus symptoms.
I have had a couple of abnormal E.E.G.s and told I had seizures, but I never asked what kind I was having..that was in 2004..When, I was first diagnosed with lupus.

Fast forward to late 2007 and I had another M.R.I. and several more abnormalities were found, as well as a pea size tumor. I have to have another M.R.I in early April, and another E.E.G. as well..I think, they are trying to determine what is caused by the small tumor, and what is caused by the lupus..(if), they can..in the end.

I am now taking Depakote along with the Neurontin and Cell Cept as well as a myriad of other drugs and do feel better..

I was told by my Neuro, next time I have a headache that is that bad, to go to E.R. and get a Demoral shot.

I wish you all the best, with your migraines..I know, they must be so miserable..for you.

Love,
Sandy

 

[Jenkay]

For those of you who have stated you are on Cell Cept or Imuran did you start taking these drugs because of the chronic migraines or due to other lupus issues (if so what issues).

I'm very curious because my rheumy and I are at a cross roads with making a decision to try Imuran.

Thanks.

 

[setApart]

Mine was because of lupus issues but I've had a horrible flare the past week and she's started me on prednisone and guess what my headaches are gone as of yesterday and today, it's actually wonderful not to feel like a clouded head pounding headache all the time