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Life With Lupus

Having the time of my life over here!


#1

Hey there

Just a quick question. I’ve just had what I suspect is my first really bad flare since finding out I have lupus. Ouch !!!

Does anybody else get a really severe headache when they have a flare? I’ve had headaches and I’ve had migraines, but this thing was in a league of it’s own. My head was pulsating constantly and then it felt like it was going into spasm - I don’t even know if that’s possible but that is the only way I know how to describe it. When I laid down I had a horrible whooshing in my ears and my head went really tight and as if it were full of pressure. Has anybody else experienced this before?

My inflammatory markers were up and I had a lot of back, side and chest pain too.

I’ve had flares and bad days before but nothing like this. I know I’ve been doing too much and I’m still in the process of trying to get over my stubbornness of ‘I can still do everything I did before’ but I don’t ever want to feel like that again.

Any suggestions on pain relief that works will be greatly appreciated. I’m allergic to NSAID and don’t do too well with strong painkillers - they make me feel really nauseated. The anti sickness tables the doc gave me help a little but the drunk feeling that accompanies my stronger pain meds is not very nice either.

Thank you n advance :relaxed:


#2

HI Chuckles,
I’m so sorry about your new pain. Your symptoms sound like a high blood pressure headache, perhaps you could get a blood pressure monitor for home and take your blood pressure when you get that headache. If it’s raised, you can ask your Dr. for blood pressure meds to take during those times, my Mom used clonidine. (Chemical name for Catapres). There also may be supplements that help to lower blood pressure if you Google “natural blood pressure remedies”.

Another possibility, since your inflammation markers were raised, was that you had either cerebritis, inflammation of the lining of your brain, or vasculitis, inflammation of the blood vessels of the brain. I have had both. We get inflammations everywhere. I can’t take NSAIDS either. I have found some relief taking Krill oil, which is an over the counter Omega 3 supplement, It’s a strong anti-inflammatory but doesn’t make you have fish tasting burps like other fish oil does. I also started on the anti-inflammatory diet, and I avoid sugar and flour and processed foods as much as possible, because those cause inflammation and pain.
Best wishes.
Sheila


#3

Hello and thank you very much for your reply.

Fortunately my blood pressure was taking a few times over the episode and it seemed to be okay. They do think my blood pressure might keep dropping though as I get really dizzy when I’m moving about and have little black outs almost.

I’ll have a look into The krill oil as I’m happy to try anything.

What is an anti-inflammatory diet? I’ve not heard that term before.

Thank you again for your post x


#4

hello there. increased migrain activity is pretty common during flare. not only your frequency of migrains increase but aalso the intensity of the pain. even i suffer from the same. the headaches will decrease as soon the flare gets tamed. to be honest during remission i get less than half headaches i used to before i was diagnosed with sle. so hey, there is some light at the end of the tunnel. to minimize the episodes of headache during flare try to keep your stress levels as low as possible. get adequate sleep. sleep on time and wake up on time. eat healthy. if possible avoid animal proteins. and exercise regularly even if it is just 20 minutes of walk. these things not only helped me with headaches but also improved my overall health. who knows it may work for you too.
good luck.


#5

It is nice to hear someone say headaches and migraine are part of lupus because all of my doctors claim it has nothing to do with it! Do most have headache issues as well? Just curious if anyone knows. I had such a migraine over the weekend I lived in my bedroom.


#6

Hi there :slight_smile:

I get where you are coming from. I have other issues that are apparently not down to my lupus which I’m not convinced is entirely accurate. I think the unfortunate thing is that SLE affects us all in different ways that even the Drs and Rheumatologists find it hard to pin point what is and isn’t down to the condition.
My Dr suggested taking Vitamin B2 (Riboflavin) to help ease migraine symptoms - it might be worth a shot. I take it everyday and then when I get a bad headache I have some Amitrypline on hand. X