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Hi
I am really having a bad time with headaches for the last week and wondered about other lupies experiences with them. I have had headaches (migraine type) before but this last week has been the worst. I have had daily (almost continuous) pain in the back of my head and neck. And I sometimes have pain in my face and forehead also. Even though the pain has been almost continuous, it is not always in the same spot(s). I finally went to the walk in clinic yesterday and had a cat scan and some blood work. Thankfully, the cat scan was negative and the blook work ok so they gave me some pain meds and told me to contact my rheumy. I put a call in but haven't heard back yet. Anyone else had headaches like this. This has been very intense and going on 8 days. Thanks!
:sad:
 

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Heather

I have had the same type of headache for the past 4 weeks. It reminds me of a sinus headache but I don't have synusitis. They are terrible headaches and they just don't shift. Nothing you take for them helps. Let me know if you find a releif! I would like to have a day without a headache!

Stacie
 

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Snap!! This week I've had a constant headache too - from neck right up around my head into my jaw and face - I hope you find some relief and answers - I'm afraid I haven't got a clue what causes it - so I'm not much help really am I - but at least you know you're not alone :)
 

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I am glad the tests showed "nothing" as frustrating as that can be to not pinpoint a specific cause.

Headaches that started in the neck and worked their way up was my earliest symptom and still one of the first indications of a flare for me. I use ibuprofen and I have found that tramadol, prescribed for lupus pain helps also.

Just to let you know I empathize and hoping you can get relief soon!

(((HUGS)))

Holly
 

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Yes I've just got over headache, neck/jaw ache felt like glands swollen too, plus tep was raised too!

These symptoms lasted for 3 weeks!

Yes it was increase of Lupus flare in my case- still flaring but those symptoms have eased!

Love Lesley
 

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hbos0527;512272 said:
Hi
I am really having a bad time with headaches for the last week and wondered about other lupies experiences with them. I have had headaches (migraine type) before but this last week has been the worst. I have had daily (almost continuous) pain in the back of my head and neck.
I too have these pains and am still undergoing diagnosis although mine have been occuring for the last three years, as you can imagine my life is a living ****!!

hbos0527;512272 said:
Anyone else had headaches like this. This has been very intense and going on 8 days. Thanks!
:sad:
Do any of the members know of any method of treating this ie diet, homeopathic. I have been given codiene ad other stong tabs and nothing works.

Please help.

Amanda

:sad:
 

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Yes

I struggled with headaches for years. I did not think they were migraines because they were different from the migraines i experienced as a teenager. They lasted for days and days and i just got used to living with them.

I eventually saw a neurologist who prescribed a small dose of a beta blocker (after a normal CT scan) which gives me no side-effects except a slightly lower BP and pulse rate. I take half a tablet every day and it actually prevents me getting them. I have no intention of giving up these tablets. They have literally changed my life. I will fight hard if anybody tries to take me off the things!

It is the first time anybody gave me practical help with the headaches and it actually made a huge difference to my quality of life.

I now know what it means to be able to think without the throbbing fog and I can concentrate better than i used to.

It is very important because you can be forgetful and have problems concentrating anyway with autoimmune problems, so you don't need the headaches too.

I don't suppose it is the right treatment for everybody, but there are others on the site who have experienced the same relief from a low dose betablocker. I suppose it just depends on the type of headache and the cause.

Sometimes the problem with normal headache tablets is that they give you rebound headaches. It upsets me to remember how I used to get. I remember wanting to put my head through the wall on ocassions. It quite literally drove me mad after a few days or a really intense bout of pain. I thought my left eye wanted to burst and my skull would break. Blooming awful.

I so hope you get some help soon.

Take care.
 

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Yes, I have headaches like that...just posted a few days ago about it. My neuro gave me pred. pack and my headache went away. Hope you get relief soon because I know what you are going thru.

Another thing...about the cat scan. Not trying to alarm you, but I don't think they are the best scan for looking at the brain because mine was negative also, I kept having problems so the doctor did an MRI which showed deep white matter lesions. If you still have serious headaches it might be best to ask for a MRI. Best of luck to you.

Mary
 

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Discussion Starter #9
Thanks for the support

I really appreciate the posts. I am still having headaches. The pain meds help but only for a short period of time. My gut feeling is they are inflammation (lupus) related. I still have not heard from my rheumy. I am afraid that prednisone is going to be the only answer and I am trying to REDUCE my prednisone. I have been at 10mg for 6 months and can't seem to get any lower. I also take methotrexate, enbrel, placquinil and diclofenac. Thanks again! It's good to know I'm not alone.
 

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I have had migraine headaches since I was 4 years old. I would be out for weeks at a time with a killer headache. I would have to lie in bed, with the curtains closed with towels hung over them so no light at all would come into the room, no sound whatsoever, and a cold rag on my head and just be completely still. :sad:I missed a lot of middle school due to headaches. I still suffer from them, and I will be 40 this year.

I tried just about every combination of medicine my Neuro's could think of, and they would work for a while, then they stopped, and the headaches came back even worse. Now, I am finally on something that is working. :hehe: I take Topamax 200mg. twice a day, and I have Relpax 40mg. to take when I feel a headache coming on. I keep these with me at all times. I went through all the tests as well, and all of them were negative.

I went to a teaching hospital at the University of South Florida and was treated by one of the best teaching Neuro's there who diagnosed me as a "classic migraine" sufferer. He brought about 5 students in to talk to me to examine me to see why you wouldn't order any further tests.

Good luck with your headaches, and I hope you get relief soon. :)
 

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I know unfortunately very well what you are going through. I had a similar post here few times ago "constant headaches" - you should check it too. Some good advices may be there , at least lots of good words.

And by the way I found something new for myself aswell. Already mentioned Relpax somehow helped me. At least it took the pain away that usually no other pill doesnt.

And by the way - one thing that one very experienced neurologist suggested me: I get Milgamma shots. Its not against headache and pain per sé but it is kind a "vitamine coctail" as I have undestood and the goal is to strenghten and boost my organism to prevent the weakness and conditions that help the headaches to come.

For some periods it seems to work a little - but it doesnt help when the pain is already there though.

Anyways I have realized that all we can do is to try, try, try and experiment different things until we find the ONE.

I hope it gets better for all of us! And we all find THE thing that helps us.

Best wishes!

Ruta
 

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Hi,
I am going through a really bad time with migranes write now. The imitrex and oxiconde and muscle relaxers have breifly kicked in for now.

I should have gone to ER a few days ago but had a very bad experience last time I was there. Was in ER from 3:pm till 12:30 AM. Took them forever to see me plus they lost me in the system. When I finally got into a bed I was there for 2 hours when they came to put an IV in me. No body ever noted on my chart that I had had one done hours before.
They also put me in an exam room with a screaming child and all her relatives. It was a level 10 migrane that started at 9 in the morning. Tossed my cookies at least 20 times.

They finally gave me a migrane cocktail then a narcotic. It had to be repeated another time. They wanted to do a spinal tap in ER. Said no way. ER was not very steral...saw old needle under bed next to mine.

I think this round of headaches is due to sinuses. Migranes are getting a little better ever day. Have some antibdics I started on yesterday. Doc gave me some extra to have if I got one on a weekend.

Also last nite I could not get my balance. Kept falling. Could not get up. Vertigo and dizziness. My Mother who does not way 110 lbs wanted to suport me. I would have crushed her. I ended up crawling. Must have looked like a turtle with a big but.

If not alot better in morn will call Neuro and go to ER. Neuro (who also suffers from migranes) has me on the strongest meds that he says he can give me out side of the hospital. Also vision is messed up in one eye.

Sign of sinus problems bringing on migranes is farhead, temples under eye etc sensative touch.

Good luck Elaine
 
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