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View Full Version : what does a lupus headache feel like?



karli1238
01-07-2009, 07:32 PM
I've had a slight headache ther last week with cold. I went to sleep yeasterday at 6pm and woke up around 11 with headache. I took some excedrin tension headache and went back to sleep. I then slept until 10 am. Still had headache so I tried imatrex. It did nothing. I was able to fall back to sleep. I have slept all day minus waking up to take something. This pain is making it so I can't think straight. Nothing is helping. I'm thinking about going to see my aunt at hospital and getting checked out when I'm there. Could this be a lupus headache? Sorry if this doesn't make sense I can't think straight kind of in a fog feeling. Weird.

iseedeadmonkeys
01-07-2009, 11:09 PM
Hiya karli,

sorry to hear your having a headache,

do you drink plenty of water? coz u should be:D could be de-hydrated?

the lupus headaches that i get are sharp pains in my head which stop me doing anything from up to 2 mins never had it longer tho,

stress? if ure stressed about something it can bring on one!

hope sorta helps

much love

bonnieb
01-08-2009, 02:09 PM
I call mine Ice Cream Headaches because that is what they feel like, you know when you eat something very cold too fast and get that real bad head ache. Then I can not think straight either.

Bonnie

Danica01
01-08-2009, 04:02 PM
I had one last February that lasted for over two months! I was in the hospital and eventually had to have the nerves in my head put to sleep with injections into the scalp :( I have not had one since and I am very happy about that! Good luck and I know it is very painful. Like they said before, drink lots of water and also, when you are in a room try to keep it as dark a possible :wink: I am sending you get well thoughts and gentle hugs :D

karli1238
01-08-2009, 04:51 PM
Thanks for all the replies everyone! Well I spent the night in the er. They said the ventricles in my brain looked swollen again. I had a shunt placed last year for hydocephalus. I ended up getting transfered to another hospital and they were about to do surgery. My headache was gone so dr decided to wait. Yeah! I hate that surgery but will do it if headache gets worse. Dr said my mom has to stay with me tonight to make sure I don't have any vision changes and that I wake up. Scary. I really thought this was a lupus headache didn't even think about my shunt. Please pray that I don't have to get surgery.

DrinkofWtr
01-08-2009, 05:25 PM
Dear Karli:

I am so sorry that you are suffering with headaches. I have a sinus one right now. I had never heard of Lupus headaches until I read your post. Thanks for informing me of such.

Danica01
01-09-2009, 07:57 PM
I am so sorry you are going through this :( I will keep sending you healing thoughts, thoughts of NO SURGERY and very soft gentle hugs! Get some rest and hopefully when you wake up you will feel much better :sleeping:



Thanks for all the replies everyone! Well I spent the night in the er. They said the ventricles in my brain looked swollen again. I had a shunt placed last year for hydocephalus. I ended up getting transfered to another hospital and they were about to do surgery. My headache was gone so dr decided to wait. Yeah! I hate that surgery but will do it if headache gets worse. Dr said my mom has to stay with me tonight to make sure I don't have any vision changes and that I wake up. Scary. I really thought this was a lupus headache didn't even think about my shunt. Please pray that I don't have to get surgery.

bonnieb
01-09-2009, 08:22 PM
Gentle hugs to you. I will be praying for you.

karli1238
01-12-2009, 02:33 AM
I'm getting another head ct on friday. I really hope the fluid has drained. I'm serously freaking out about having my head and abdomin cut into again. Oh and the small fact that they will shave from my banges to the middle of my head. I don't have to long hair to cover anymore so I will have to wear hats. I was surprised that the surgeon even saw me (@ 3am) when the cost of surgery and missed work caused me to go bankrupt last year. I'm really glad that I don't have to find a new neurosurgeon. I have had a slight headache all weekend but tension headache is helping. I got to quit stressing over this but surgery is so scary. Thanks for listening to me ramble. I have to stay up all night for eeg. This should be fun...

rob
01-12-2009, 07:10 AM
Hi Karli,

I wish you could get rid of this headache. From what I've read, people who have a shunt placed for hydrocephalus sometimes have to have another because the first stops working properly. The thought of having neurosurgery again, has to be scary. I hope this isn't the case, and that you can get this resolved without another surgery. As far as the loss of hair, if you have to have surgery again, I have a friend who is in chemo for breast cancer, and she's lost most of her hair. She's still a beautiful woman regardless. When do you get your EEG done? Don't forget that you have a bunch of folks in your corner. Ramble whenever you need to.

Rob

karli1238
01-12-2009, 07:57 AM
I'm being driven to my appt. I was thinking while up all night that I should prob wear a helmet around (like I ever would) since I have epilepsy and a shunt. You aren't supposed to hit your head. I know I hit my shunt during last seizure 2 months ago. I really hate the strobe lights in this test. I remember seizing last time.

karli1238
01-12-2009, 09:44 AM
So traffic was horrible. I got to my appt 20 min late and they wouldn't see me. I had to try really hard not to cry. I'm delirious. They said I could wait around all day but I already stayed up all night and can't do it all day. I'm going back in 2 wks. This a downer for today!!! Hopefully I will wake up in a better mood.

summerdragonfly
01-24-2009, 06:16 PM
My headaches get so bad sometimes that its hurts to do anything, i have to lay in a COOL area (i feel hot when i get them) and just lay as still as possible, it hurts to blink, turn my head, move in any way, and just control my breathing so its slow and calm. I would talk to your doctor, i'm sure if you get them often enough he/she could help you find a way to get them under control. Good Luck you have my sympathy.. *hugs*

karli1238
01-26-2009, 10:36 PM
I saw my neurosurgeon today. He just told me if the headache doesn't go away after taking medicine for a few hours that I need to get a head CT to ck for hydrocephalus. I'm still confused on how to tell a lupus headache from hydrocephalus. I get really paranoid and have panic attack. I'm going to get some xanax tomorrow. I've been to er every week for the past 3. I first time really scared me. I hope the headaches just stay away!

Thanks for all the replies.

mountaindreamer
01-27-2009, 05:20 AM
hi karli,

I am not familiar with hydrocephalus, I just want to tell you that i am sorry that you are having these problems, and i hope they can get you some relief.

phyllis

NoodleMom
01-27-2009, 08:46 AM
oh karli, im sorry. headaches are the worst thing. i am praying for relief for you Poor girl. gentle hugs

K