>:(
I'M WAKING UP AT THE MOMENT EVERY MORNING WITH SUCH A BAD HEADACHE THAT I CAN HARDLY GET OUT OF BED. I FEEL NAUSEAS ALMOST LIKE WHEN I WAS PREGNANT BUT I'M NOT PREGNANT OF COURSE. THE HEADACHES AREN'T GOING AWAY WITH PAIN KILLERS AND IT'S DRIVING ME MAD. ALSO HAVING KIDNEY PAIN WHEN I MOVE. SAW GP WHO SAID,WELL DEAR YOU DO HAVE ALOT TO FEEL GENERALLY UN WELL ABOUT WHAT WITH TH SJS. WELL THAT DIDN'T HELP ME MUCH. SHE DID DIP MY WEE THOUGH AND IT WAS CLEAR. I'M SEEING RHEUMY MONDAY AND SHE SAID JUST WAIT TILL THEN AND DISCUSS IT ALL WITH HER.
ANY IDEAS AS TO WHY MY HEAD IS SO BAD AND FEEL SICK ALONG WITH KIDNEY PAIN. IS IT ALL JUST DOWN TO SJS?
XXXXXXXX CPORT
Hi,
Cport sorry your feeling bad, don't you wish you could wave a magic wand and feel better. I don't know if it is down to SJS, but I suffer the same types of symptoms.
I also know when I am starting to feel bad (beginning of a flare), I usually start feeling tired and then the nausea starts then I start with the headaches. At first I just thought the Nausea was because of the tiredness but I think it is all part and parcel of SJS. This last week I have been feeling pretty bad, and have been struggling with headaches and Nausea and tiredness (great timing as my hubby has had a week of holiday and I had a few days away from work :-( )
I get daily headaches that are on and off each day, every day. My doc is suspecting inflammation in my brain (CNS involvement) because when these come I get confusion and memory problems. I do get nausea too but I'm not sure if I can connect it with the headaches or my meds, or something else. Neuro docs may help you as they deal with headaches. Hope you can find some relief... these are no fun indeed. :-[
Thank you both.
I am actually feeling rougher this past week or so,so probably down to that. My eyes started really hurting and stinging today so maybe thats why headaches seem so bad. Did think at first nausea was down to pillls but since finishing my steroids I'm not actually on anything at the moment,not till i see rheumatologist Monday anyway then think she's thinking of starting immunosuppressants.
Thank you again for answering xxxx cport
cport, When did you stop the steroids? Your body may be having a tough time without them, this is not unusual when you stop steroids. I'm assuming you were tapering down.
ACTUALLY THINKING ABOUT IT NOW THE HEADACHES AND NAUSEA HAVE BEEN ABOUT SINCE STOPPING STEROIDS. HAD A SIX WEEK COURSE STARTED WITH 30 MG FOR 2 WEEKS 20 MG FOR 2 WEEKS THEN 10 MG FOR 2 WEEKS. DIDN'T EVEN CROSS MY MIND IT COULD BE THAT XXXXX
Good observation. I get headaches and nausea and steroids make them go away until I stop the steroids then they come back worse than ever. So I have stopped taking steroids now and the headaches are much better. Of course I had them for several weeks after stopping the steroids and had to wait it out. So I either have to take them all the time or not at all. So I am only going to take steroids now when I get pleurisy so bad I can't take a deep breath at all.
Hope the neurologist helps you. Mine told me not to take steroids and gave me Axert which is a migraine medication but I only get 6 a month and they cost me $10 a pill as a copay. So it is good the headaches got better.
KL
BLIMEY SO SOUNDS LIKE DEFINATE SIDE EFFECT FROM STOPPING THE STEROIDS. I'M VERY LUCKY AS I'M FROM THE UK SO HAVE THE NHS. ALTHOUGH HAVE TO PAY FOR PERSCRIPTIONS THATS IT. I HAVE FANTASTIC DRS AND MY RHEUMATOLOGIST IS A WONDERFUL LADY SO WILL HAVE TO TELL HER I THINK THE HEADACHES AND NAUSEA ARE FROM THE STEROIDS.
THANK YOU ALL FOR YOUR HELP IT'S BEEN VERY MUCH APPRECIATE XXXX
I'd like to know what your doctor says then. I just made this connection recently. Steroids make me feel great and it's kind of like a rebound headache when I stop taking them. I think it happens with other meds too. And the headaches are so bad I throw up. I had my last steroids in November and then had bad headaches for several weeks and since then I have not refilled my migraine RX since March and I have one pill left. That is only 5 headaches in 3 1/2 months. I hope you feel better soon.
KL
Of course after my last reply to you I started thinking. You should not take my own experience as medical advice. I started worrying, Oh No what if the steroids were shrinking a brain tumor. I always go for the worst case scenario. Anyway it's good you are going to talk to your doctor. That is always the best person to get information from. My neurologist gave me the advice to try and not take steroids after the MRI.
KL