Occular migraine with aura

[JennaShi]

Please keep me in your prayers and thoughts, I’m dealing with the above and just waiting for it to subside. Aura left thankfully but was so weird . Anyone have anything that worked for relief and good medication relief?

Thank you and hugs

[svfarmer]

Sorry can’t give any advice but hope you start feeling better soon - sending hugs 🤗

[JennaShi in reply to svfarmer]

Thank you so much! Hugs are very much appreciated <3 <3

[DRunnerchick]

JennaShi,

Have had these (or similar). Buggar, they are! Have also had optic neuritis unknowingly multiple times. For the migraines, I am on Topiramate 100 mg 1x day as preventative. (I’m also on gabapentine and duloxetine for neuropathic pain) I take rizatriptan as a rescue med if absolutely needed.

My migraines were well controlled until we recently had 🔥🔥 and off the chart smoke for a week. My city 🌃 had the dubious honor of having the worst AQI in the world 🌎!!! I had been down to maybe 2 migraines every 6-8 weeks but I‘ve had 7 in the last 2.5 weeks. 🤷‍♀️🙆‍♀️🤦🏽‍♀️Hope yours feel better 😘🍀🌷

D🏃🏽‍♀️

[JennaShi in reply to DRunnerchick]

Don't they suck;Literal pain in the head so to speak!

I'm so sorry that you have to deal with this; I wasn't sure what that was but googled it and it sounds rough! Where you/ are able to see normally? Is the neuritis due to your Lupus/ phospholipid syndrome or another disease?

How are you feeling now and how are the fires? I hope that your migraines have stopped and no more neuritis these days, that would be awful! I feel for you and am so glad you have back up plans incase one doesn't work. I used to be against any kind of pain relief but not as pain is more consistent, I've had a change of heart.

It's also so hard to know sometimes when to go to the doctor and when to stick it out, especially now days. Hugs to you during this time <3 <3

I've never had aura to my recollection (bad short term memory) so can I ask you if this sounds similar? I assume that's what it was and will talk to my doctor; have an appt this friday for those ganglioside antibody results:

Horrible pain on right side of head and around eye, horrible nausea, the what I thought was an "aura" was on the left side looked like a sliver of a moon and had about eye level and had all kinds of lines and colors moving around. Everywhere I looked it was there and was painful and making me nauseous to keep my eyes open. A little while later, on the right side I saw what looked like the air moving around on my right side (you know when you see heat rising off blacktop?) and the left side moon thing was gone. still hurt to keep eyes open too much and nausea was great/ dizzy when standing and pain in head worsened. It was the nightmare that wouldn't end. Later on yellow flashes in both eyes. I hope this makes sense?

have been taking Advil and trying to catch it quick but these days what seem like a right sided headache end up being a full-blown migraine a little bit late on which take atleast 4-5 advil to knock it down a bit. Primary prescribed Sumatripin (Think thats how you spell it) but I have this will reaction and am not sure if it's normal. If I wait to long it doesn't work but I've have this weird sensation on the right side of my neck following weakness so I try not to take it but was desperate and my prescription expired. Now I have it but I should probably tell and see if that's normal.

[DRunnerchick in reply to JennaShi]

Yikes! Sounds like a really cruddy migraine aura. I had better results with rizatriptan than sumatriptan. You have to take it right at the beginning to head off the aura. Can take one more two hours later but that’s all for a week. They are powerful drugs and I do weigh the risks and benefits.

Migraine is nothing to mess with. Don’t be fooled into thinking they are just headaches. They are a neurological process with consequences! Take care of yourself. If you feel pain when moving your eyes to look around, call your doctor. Or since you have an appointment this week discuss warning signs. I didn’t know when I had optic neuritis. I’ve had it multiple times now and I have damage. It isn’t because of migraines but they confounded the picture because I didn’t go in for help.

D🏃🏽‍♀️

[bedboundjules]

Maxalt works great in a pinch. You should be on something everyday to keep them away. A nerve blocker and have your blood tested to see what your INR number is. You don’t want to have s stroke. Good luck!!🍀

[JennaShi in reply to bedboundjules]

Hi bedboundjules, Thank you for sharing, I will definitely write this down, as I think a conversation is on the horizon for trying something new. I'm guessing by your response that they tend to be more frequent than less? I had my first weak positive cardiolipin antibody test and nest one pretty soon so I'm not sure what to expect or which doctor to talk to about this or even when to stick it out and when to set up an appointment. Thank you for letting me know, thankfully no stroke from what I gather; migraines can rough!

[Bakbre]

Hi there

I feel very sorry for you because I think it is one of the most awful pains there is.

I have had Migraines for years and usually get around 3 or 4 a year. Recently I have had at least 1 a week for about 8 weeks. Doc is sending me for an MRI next week to see if anything else is going on. I must add I am also feeling dizzy and light headed.

In the past I have tried preventative treatment but don’t really want to take extra medications as well as all the Lupus ones I am already on! Plus they didn’t work.

So I now have a tablet called Naramig, which I take 1 of as soon as the aura starts and it helps stop the majority of the pain. If I were you I would ask your GP or Consultant about it.

I hope you feel better soon.

[JennaShi in reply to Bakbre]

thank you for your support and I couldn't agree more.

I'm sorry that your migraines have been increasing and hope that the mri helps you figure out what is going on and whether they are tied to your other symptoms.

I felt the same way, as I was taught by my dad that medication can cause more damage and until recently I didn't think it was that bad that I can manage without alot of medication. My dad was a chiropractor and my mom had M.S., unfortunately through most of her time she only took tylenol but that barely put dent a dent in her pain ( this I didn't understand as a child.) I couldn't see her pain and didn't understand as I thought my dad was right; my naive view of the world, her disease, and how much better she could've felt. It's funny how different our view is when we go through things ourselves and humbly learn so much more. <3

[suzannah16]

I had them for years but had no idea what it was and just mentioned it while at my GP's one day. He gave me fluoxetine and since then I have only had one episode in 2 years.

[Wendy39]

Hello JennaShi

I am sorry to hear that you are suffering with unbearable migraines.

I have suffered headaches / migraines / cluster migraine / ice pick headaches / migraine with myalgia all my life but they have been a real issue since my lupus kicked off.

I have read that teenage migraine are a warning sign now, along with other symptoms.

I was told that mine, starting at 12 years old were hormones, then eye strain due to GCSEs, then working long shifts and not eating properly, not enough sleep, etc etc. But now I can make sense of it. I have read recently that migraine might be autoimmune in nature, which would make even more sense for many of us here. There are many here who have struggled with them.

So paracetamol and ibuprofen never worked and the GPs had prescribed migraleve, sumatriptan 50mg and sumatriptan 100mg. Still got them. I can now get the pain behind my eyes and ears (migraine with myalgia) without the headache - just the eye and ear pain.

Mine did not disappear with hydroxychloroquine and then MMF added in. I was still getting them break through.

My lupus expert rheumy added 30mg of amitriptyline in, at night. This is as a preventative measure, rather than wait for them to happen and react. I think everyone gets to the point at different times, as we can all tolerate different things. Even though I was already taking many tablets, I knew that at some point in the day they would strike. Once a stabbing pain right through my eye ball making me close my eyes in pain, whilst driving. So for me, enough was enough, I wanted to add the amitriptyline.

It definitely helps, although sometimes they still break through, but now 2 paracetamol sends it away.

By the way, I was refused an appointment with an NHS Neurologist, so I saw one privately. I had had brain MRIs done a few years apart - the first because of an issue on my spinal cord - but the neurologist was able to reassure me that there was nothing untoward on my brain MRIs and that my migraine were definitely lupus related. This was reassuring, as at times so many things go through your mind. Pain clinic can also help. Some have injections that help a lot.

Have you been tested for APS / Hughes Syndrome / Sticky blood? This can be a reason for migraine too. Unfortunately some lupus patients also have APS. You should check this with your doctor.

I am not sure if you realise that there is a search facility on this site where you can search certain symptoms and read others posts on headaches.

There are some of my posts on this subject and others. There might be useful info in there, in some of the replies. Here's one of my posts:

healthunlocked.com/lupusuk/...

lupusuk.org.uk/publications/

lupusuk.org.uk/headaches-an...

Hope I've helped. You are definitely not alone.

Best wishes

Wendy

[KayHimm]

Jenna -

Auras are freaky, I know. I wonder if the migraines are part of your neurologic syndrome. Since you have a neurologist, you have access to the best advice. Migraines are complicated. They don’t even know exactly what they are, but new medications have been developed that are apparently working. You may be put on a preventive as well as an abortive medication.

Have you had a discussion with your neurologist about your positive antibodies?

Hope you get on successful treatment soon.

Xk

[daniel55]

For some years now I have been on a tablet called candesartan suggested by a neurologist after trying many different treatments It works very well for me I still get a few migraines but not half as bad as before simple pain control tablets do help as well and they don't last as long.

[Roarah]

I had migraine with aura, a scintillating scotoma, for most of my life multiple times per month. However, after my strokes it was discovered I had a very large pfo ( hole in my heart), with an ASA ( atrial septal aneurysm ). My pfo closure was nov. 3 2018 and my last scotoma was Nov 21, 2018.

Turns out large PFOs in combo with an ASA are not only linked to stroke but also migraine with aura and the latest data shows that patients with asa benefit the most from closure.

As of yet pfo closure is only recommended for secondary stroke prevention so not something doctors will explore in non stroke patients. However, this might change as more studies are showing such statistical stroke prevention and now with a subset of ASA patients having very statistical migraine with aura improvement. A few doctors believe PFO might be a cause of chronic fatigue and POTS aswell.

interventions.onlinejacc.or...

tctmd.com/news/atrial-septa...