Lupus & Headaches

[QueenV]

Hi I've been diagnosed with SLE Lupus & was wondering do you suffer with hurrendous headaches with your Lupus? Are you perscribed anything for these headaches eg blood thinners, pain meds etc? Nothing works for me except sleep. Thank you.

[Barnclown LUPUS SUPPORT Volunteer]

I hope you're looking into these headaches with your medical team. It's important they ID the underlying cause. But, for what it's worth, here is how I cope:

For me, lifestyle management is key to preventing the horrendous headaches/migraine, which come on when I haven't been pacing my activities as strictly as I should, or sticking to am antiinflammation diet most of the time, and also when I'm in a neuro cerebral flare, or starting a new prescription med. I'm lucky that the pescription NSAID Mefenamic acid 500mg stops my migraine headaches in their tracks...I take a tab the minute I see the flashing silver lights &/ot feel the other migraine hints....and the migraine never fully developes. Over the decades, I've been on all sorts of other prescription NSAIDS & analgesics for spine pain, but none have stopped my migraines the way mefenamic can.

My only prob is that mefenamic isn't recommended for patients with SLE, but because I only have to take a tab now & then (rather than take tabs daily), my gp & rheumy allow me mefenamic for occaisional use, and tell me to take oesomprazole at the same time + make sure I have food in my stomach

My lupus was infant onset, but received only treatments for emergencies & secondaries until 4 years ago. My horrendous chronic recurring migraine headaches began in childhood, possibly worse after an accident falling on my head (don't laugh) and we think the damage to my cervical spine may be one of the causes. From childhood, no OTC treatments helped my migraines....and drs just shrugged....all I could do was lie in a darkened room and tough them out. but when an inspired gp gave me mefenamic for endometriosis pain in my early 20s (I'm now 61) i was thrilled when I realised mefenamic could also stop my migraines...since then, I've discovered that mefenamic is also prescribed for migraines too.

Hope this is some help

Good luck & take care

[lupus-support1 Administrator in reply to Barnclown]

This is a truly astonishing story - although you may have different words! Although you make light of falling on your head, this was a trauma to your body. Doctors shrugging is unfortunately very common and for those who are suffering, this is far from funny!

May I ask whether your diagnosis was neo-natal lupus (ie from birth) or whether this developed during infancy. You do not have to answer as this is personal and you may not want to disclose. The LuPUS MB is more private should you wish to join.

You, Atribrat and PickledGinger all have to deal with very acute and chronic headaches.

With good wishes,

Ros

[Barnclown LUPUS SUPPORT Volunteer in reply to lupus-support1]

Thanks ros

Yes, my version of lupus was diagnosed in the USA by big city drs not long after birth when I was a young toddler with dreadful rashes in the 1950s. My rheumatologist refers to this as infant onset lupus. I am a DES daughter. I went on to be diagnosed again with lupus at least once more as a teen during a particularly bad flare. But my mother didn't understand the significance of these diagnoses, and never told me about these diagnoses until my lupus was finally recognised in the uk

So at 21 I moved to the uk where I mainly lifestyle managed while my version of lupus progressed without daily systemic treatment until 4 years ago when multisystem symptoms were debilitating enough to finally be recognised by a brilliant rheumatologist. Now at 61 I'm feeling better than I have since the 1970s thanks to daily hydroxy + mycophenolate + amitriptyline, with 3 low dose prednisolne 4 week tapers per year, and treatment plans for secondaries involving mainly various prescription topical steroids etc

[lupus-support1 Administrator in reply to Barnclown]

Thank you for your reply. I am glad you found a good rheumatologist in the UK!

I look forward to talking with you more at the LuPUS MB. Please feel free to introduce yourself.

Be well!

Ros

[Atibrat Moderator LUPUS SUPPORT]

I have gotten migraines for years and was diagnosed with SLE 7 years ago. The only thing that helps my headaches is Zoning nasal spray at the onset.

[Atibrat Moderator LUPUS SUPPORT in reply to Atibrat]

Sorry that is Zomig nasal spray.

[PickledGinger]

I was suffering extreme headaches that were affecting my vision as well so they referred me to neuro who noticed my optic discs were swollen, so performed a lumbar puncture which really helped. My pressure was very high and after numerous tests I was diagnosed with benign intracranial hypertension (think meningitis without the virus). I've had 9 LPs now for the pressure and take meds to remove excess fluid from around my brain but I still get horrible episodes. My way of coping on really bad weeks is through my art, I've been an artist for twenty years and use that as a form of pain control. Consentrating on art helps me ignore the pain and with an addled brain it makes for some interesting creations (mostly fit for the bin). if your headache are ruining your life ask for them to be thoroughly investigated as GPs tend to blame everything on Lupus when it might not be. Hope things improve for you.

[Barnclown LUPUS SUPPORT Volunteer in reply to PickledGinger]

You inspire me pickledginger!

And the info you've given us about intracranial hypertension helps me a lot.

Thanks

[PickledGinger in reply to Barnclown]

I hope and pray you do not have BIH I wouldn't wish it on anyone. It sounds weird to most but I'm so happy when I have a migraine as it's a 100 times less painful. It's like everything though, we HAVE to cope, it's not going to get better nor go away, so you have to find ways of managing it and that's where art comes in. I focus just on positives, life is far to short to entertain negativity, you don't have to be an artist to be one, what is art anyway, it's what you make of it and if you are happy creating something who is to say it's wrong? Art can be anything at all, you create something from nothing and that's good enough for me.

Take care

PG

[Barnclown LUPUS SUPPORT Volunteer in reply to PickledGinger]

Agreed!

(With apologies to queenv for kind of monopolising your thread)

After a lifetime of misdiagnosis + keeping calm & carrying on, through countless tests & ops & invasive procedures, and fruitless treatments, my feeling is: if finally my current treatment plan is consistently managing to minimise all my multisystem symptoms, and if theories about the causes of these symptoms are credible, I can feel free to relax even though my diagnostic process is still evolving.

My long term persistent & flaring neuro cerebral symptoms are about to be considered more closely. The last time was in the 1990s when my gp sent me to neurology and I tested neg for MS....but back then, once MS was excluded, the drs dropped the diagnostic ball. But because my NC symptoms continue to flare requiring pred tapers, even though myco does damp these symptoms down, I suspect a Lumbar puncture is in my future. This is one procedure I've avoided and dreaded....even though I've learned to tolerate equally formidable procedures. Your testimonial gives me courage.....I've encountered other testimonials re lumbar punctures, but none have comforted me as much as yours has

My creative work is through writing, photography and illustrated lectures....when & as my health permits. I totally can relate to how much art means to you

thank you so much

And take care

[PickledGinger in reply to Barnclown]

You really have been through it but please don't be scared or worried about lumbar punctures, they're nowhere near as bad as people think. The pain is minor and mostly related to them injecting local anaesthetic. Then you curl into the foetal position to widen the space between the disc and then they draw fluid and if your pain is related to BIH you will feel instantly better. The entire process is about 20 minutes and then you have to lay flat for 1 hour and then you're free to go. A few years ago we had to lay still for four hours! I promise you it's not scary at all and I've never had any issues related to them, I've always felt loads better afterwards.

[Barnclown LUPUS SUPPORT Volunteer in reply to PickledGinger]

Thanks so much pickledginger: if/when the time comes for a lumbar puncture, I'll remember your kind words

QueenV: have just read about lumbar shunts: v interesting: I'd not heard of this technique & I too wonder what pickledginger knows about this

[QueenV in reply to Barnclown]

Has it been suggested for you to have a shunt so you won't ever need lumbar punctures?

[PickledGinger in reply to QueenV]

Yes they suggested a shunt but as my antibodies are so volatile my neurologist felt it would do more harm than good. They gave me meds which help to remove excess brain fluid which helps a bit but I still get really bad spells that can go on for four weeks.

[QueenV in reply to PickledGinger]

Hi I'm really sorry for your suffering. If it wasn't for your antibodies a shunt might have been perfect for you. I hope you get some relief & are pain free today. Take care x

[lupus-support1 Administrator in reply to Barnclown]

I am curious about your name "Barnclown"! It sounds as though you also have a creative outlet that allows you to express your sense of identity, which I think is life affirming. I alos invite you to publish your photos and writings on the LuPUS MB if this is something you would like to do. There is a Gallery for this purpose.

I understand how scary these tests sound. MS is sometimes described as "lupus of the myelin sheath" which means that unlike MS, lupus can attack anywhere, including giving MS symptoms, especially if someone also has the antiphospholipid antibody (Hughes) syndrome.

With good wishes,

Ros

[Barnclown LUPUS SUPPORT Volunteer in reply to lupus-support1]

Ros, thanks so much...and WOW I've never heard of MS being described that way, but it REALLY fits: I'll remember this!

[lupus-support1 Administrator]

This sounds horrendous and this must have been very distressing for you. Your way of coping is inspirational. I wonder whether you would like to talk more about your way of coping by inviting you to join the LuPUS Message Board. The Lupus MB also has its own Gallery and should you want to display your work, as you would in an exhibition, please do so.

With good wishes,

Ros

[PickledGinger in reply to lupus-support1]

Hi, I was trying to reply to your very kind letter but I'm very new to this site and couldn't find out how to 'follow' your group.

I would dearly love to be more involved as I believe we are in together and if I can encourage others to find ways of coping then that would be wonderful. I would love to add some photos of my artwork if you feel that would inspire others. What's funny is being a lupie the very first pictures I did were butterflies and 3 years ago I plucked up the courage to enter a National Trust art exhibition (my first ever) and I succeeded in getting two got in. This drove me on to take my art seriously and it's now my entire pain control.

However it's much much more than that. When you have a life long illness the quickest thing you lose is your identity, people stop calling, friends disappear and before you know it you're just a person with an illness (and one that no one understands). I found that people would just blank me or ask the person next to me how I am, I felt invisible and because people couldn't see my illness they just didn't get how very poorly I was.

My life became really lonely so I took up art again and I decided that no longer would I be the illness, instead I was an artist. So, for me art gave me my identity, people no longer ignored me, instead they couldn't wait to talk to me about my latest work and in the last year I took the decision to start my Creative Arts Degree, which I love. It's distant learning so fits perfectly around grotty periods but it's there, it's my focus and above all else it's something positve in my life.

Thank you for taking the time to read this, if you think others would benefit from reading this please feel free to pass this on. Let me know what else I can do please I really would love to be involved.

PickledGinger

[lupus-support1 Administrator in reply to PickledGinger]

I feel inspired by you and hope you will write this on the LuPUS MB, of which you are now a Member. I think your story is amazingly positive and shows that there is "hope" that even something traumatic, such as lupus, does not define who you are and that it is possible to find creative and therefore "life-affirming" activities.

With good wishes,

Ros

[lupylulu]

Hi I was just at my doctor last night, with the same complaint amongst other things that were bothering me. This last headache lasted for seven days. He didn't say anything I guess because there so many things going on with me. On Dec.11 I go to the Mayo Clinic in Rochester Minnesota in the USA to see my Lupus Specialist Ive been keeping a journal, but what I've done is make a list from the journal to take with to address. Hopefully when I come back I'm able to answer a lot of questions. Keep your chin, God bless you and I hope you get some type of relief. Lupylulu

[QueenV]

Hi thank you for your reply. Please let me know how you get after your appointment. I saw my GP yesterday & I'm continuing to take steroids so hopefully that will help my headaches. Take care & I hope you're having a good day x