Dealing with Migraines when Diagnosed with Lupus

129 views
3 times supported
14 comments

Unregistered member

03/14/2019 at 2:24 AM

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?

All comments

Go to the last comment

Unregistered member

04/16/2019 at 11:34 AM

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 https://www.carenity.us/forum/other-discussions/living-with-lupus/dealing-with-migraines-when-diagnosed-with-lupus-839 2019-04-16 11:34:18

Unregistered member

04/29/2019 at 1:05 AM

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 https://www.carenity.us/forum/other-discussions/living-with-lupus/dealing-with-migraines-when-diagnosed-with-lupus-839 2019-04-29 01:05:51

Lee__R

Community manager

07/01/2019 at 2:53 AM

Good advisor

Lee__R

Community manager

Last activity on 04/03/2020 at 5:04 PM

Joined in 2018

1,338 comments posted | 37 in the Living with lupus group

2 of their responses were helpful to members

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend
Top chef

View profileView Add a friendAdd Write

Hi @Bean72‍,

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 https://www.carenity.us/forum/other-discussions/living-with-lupus/dealing-with-migraines-when-diagnosed-with-lupus-839 2019-07-01 02:53:28

jrosa711

07/16/2019 at 10:58 AM

jrosa711

Last activity on 05/14/2020 at 6:47 PM

Joined in 2019

4 comments posted | 3 in the Living with lupus group

Rewards

Explorer

View profileView Add a friendAdd Write

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 https://www.carenity.us/forum/other-discussions/living-with-lupus/dealing-with-migraines-when-diagnosed-with-lupus-839 2019-07-16 10:58:18

johnboy7981

08/01/2019 at 6:21 AM

Good advisor

johnboy7981

Last activity on 11/11/2024 at 12:34 PM

Joined in 2019

10 comments posted | 6 in the Living with lupus group

Rewards

Good Advisor
Contributor
Explorer

View profileView Add a friendAdd Write

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 https://www.carenity.us/forum/other-discussions/living-with-lupus/dealing-with-migraines-when-diagnosed-with-lupus-839 2019-08-01 06:21:35

mvn481

08/02/2019 at 3:59 AM

Good advisor

mvn481

Last activity on 09/02/2023 at 12:01 AM

Joined in 2018

70 comments posted | 25 in the Living with lupus group

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend

View profileView Add a friendAdd Write

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?

@johnboy7981‍ @jrosa711‍ @eleanee‍ @Bean72‍ are you taking anything for migraines? have you found anything to help?

Dealing with Migraines when Diagnosed with Lupus https://www.carenity.us/forum/other-discussions/living-with-lupus/dealing-with-migraines-when-diagnosed-with-lupus-839 2019-08-02 03:59:40

johnboy7981

08/02/2019 at 7:52 PM

Good advisor

johnboy7981

Last activity on 11/11/2024 at 12:34 PM

Joined in 2019

10 comments posted | 6 in the Living with lupus group

Rewards

Good Advisor
Contributor
Explorer

View profileView Add a friendAdd Write

@mvn481 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 https://www.carenity.us/forum/other-discussions/living-with-lupus/dealing-with-migraines-when-diagnosed-with-lupus-839 2019-08-02 19:52:30

Unregistered member

08/03/2019 at 11:14 PM

@mvn481‍ I've taken a few different prescribed medications for my migraines, but sadly nothing helps at all

Dealing with Migraines when Diagnosed with Lupus https://www.carenity.us/forum/other-discussions/living-with-lupus/dealing-with-migraines-when-diagnosed-with-lupus-839 2019-08-03 23:14:44

lupus38

08/11/2019 at 4:07 AM

Good advisor

lupus38

Last activity on 01/10/2023 at 10:56 AM

Joined in 2018

91 comments posted | 49 in the Living with lupus group

Rewards

Good Advisor
Contributor
Messenger
Explorer
Friend

View profileView Add a friendAdd Write

@jrosa711 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

Dealing with Migraines when Diagnosed with Lupus https://www.carenity.us/forum/other-discussions/living-with-lupus/dealing-with-migraines-when-diagnosed-with-lupus-839 2019-08-11 04:07:19

jrosa711

08/11/2019 at 6:12 AM

jrosa711

Last activity on 05/14/2020 at 6:47 PM

Joined in 2019

4 comments posted | 3 in the Living with lupus group

Rewards

Explorer

View profileView Add a friendAdd Write

Thats my only relief actually (Ice packs). I Hope you all find something that works for you to help ease through it. I know it's tough, wishing you all well.

Dealing with Migraines when Diagnosed with Lupus https://www.carenity.us/forum/other-discussions/living-with-lupus/dealing-with-migraines-when-diagnosed-with-lupus-839 2019-08-11 06:12:43

Dealing with Migraines when Diagnosed with Lupus

All comments

Give your opinion

What do you think about the Carenity Forum and community?

What are your expectations from Carenity and what would you like to see in the future?

Articles to discover...