Dealing with Migraines when Diagnosed with Lupus

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Member Carenity
Posted on

I'm still not 100% that my lupus causes my severe migraines as I was just recently diagnosed; but for 5 years now I've had one constant, excruciating migraine. Every day, every second, my head is in pain. I've tried everything I can think of and nothing helps.... does anyone else have this issue?

Beginning of the discussion - 4/16/19

Dealing with Migraines when Diagnosed with Lupus
1

Member Carenity
Posted on

migraine is one of the common sign of lupus. If you doubt your migraine is caused by lupus, you can click the link to know more https://www.lupusuk.org.uk/headaches-and-migraines/

Dealing with Migraines when Diagnosed with Lupus
Member Carenity
Posted on

That was an incredibly informative article! Sadly though, none of it explains why mine has been constant for several years now :c

Dealing with Migraines when Diagnosed with Lupus
1

Member Carenity • Community manager
Posted on

Hi @Hidden username‍,

I wanted to let you know that Carenity has added a Migraine to the conditions - creating a new group specifically for migraines and a group of forums. The group has only been created a for a few days, so it is a growing community still, but I would encourage you to add it to your conditions so you can chat and share experiences and advice with others who are suffering specifically with migraines.

Add Migraine to your profile: https://member.carenity.us/conditions and click Add Condition. You will now have access to the Migraine group by just clicking "My Groups"

Access the group https://member.carenity.us/forum/my-groups?input=migraine

Dealing with Migraines when Diagnosed with Lupus
1

Member Carenity
Posted on

Hello,

I have recently been diagnosed with Lupus in March and everyday for the last three weeks including my birthday I have spent in pain due to Migraines. I even went to the ER for the pain, and to have a CT scan. I have my PCP that says its due to my Lupus and my Rheumatologist who says it's not. It was hard enough for me to get a diagnosis for Lupus as every specialist I saw would tell me the thg didn't understand/know what was causing the problem for my Lupus. I am saddened by the medical community who continues to point fingers elsewhere leaving us feeling overwhelmed and in pain. I don't wish this on anyone.

Dealing with Migraines when Diagnosed with Lupus
Member Carenity
Posted on

I've had bad headaches and migraines since my early teenage years. Ones to where I go lay in a dark room, no light, comfy blanket and a box fan to block out any possible noise. Over the last few years it seems that headaches can come more often and migraines have resurfaced, before I was diagnosed with lupus. I've found it helpful to grab a frozen gel-pak from the freezer and use that.. in conjunction with tylenol and rest. 

Dealing with Migraines when Diagnosed with Lupus
Member Carenity
Posted on

I have been getting migraines as well... any type of light seems to make it worse and I have not really been able to identify what is triggering them to become more often and intense.

Has anyone figures out what is triggering their migraines?

@Hidden username‍ @Hidden username‍ @Hidden username‍ @Hidden username‍ are you taking anything for migraines? have you found anything to help?

Dealing with Migraines when Diagnosed with Lupus
Member Carenity
Posted on

@Hidden username what I've found out on lupus.org is that individuals with lupus are twice as likely to have headaches and migraines, which are called 'lupus headaches'. It seems I have more when I'm in a lupus flare, where everything hurts; or if I've been in the sun or heat too long. 

Dealing with Migraines when Diagnosed with Lupus
Member Carenity
Posted on

@Hidden username‍ I've taken a few different prescribed medications for my migraines, but sadly nothing helps at all

Dealing with Migraines when Diagnosed with Lupus
Member Carenity
Posted on

@Hidden username thanks for the tip, i am going to try the frozen gel pack. i feel like i have tried everything but don't exactly remember if i have tried that, though it's possible.  at this point willing to try it all