Do you have Ehlers-Danlos syndromes (EDS) & Migraine?
I have recently been diagnosed with Ehlers-Danlos syndrome (EDS), hypermobile type. I am starting the journey to determine what effect EDS may have on my chronic migraine.
I was wondering if anybody else has both conditions and what effect EDS has had on their migraine treatment plan.
Thanks in advance! - Amanda W (team member)
Ugh, another diagnosis, I'm sorry to hear this. Now you can move forward and treat it?
I don't have this but know many of our members do. Could you share some of your symptoms?
Gentle hugs, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team
So frustrating. It seem one chronic illness leads to more....You're not alone!! Gentle hugs, Nancy Harris Bonk, Patient Leader/Moderator Migraine.com Team
Hey Amanda! Sorry you have to deal with EDS but I hope the diagnosis opens up some answers and extra support for you.
It seems like we've had quite a few people visit in the past with EDS. I specifically want to tag
and our colleague , who may want to share their perspective. I ran a couple of searches in the archives if you want to take a peek:
https://migraine.com/search?s=ehlers
https://migraine.com/search?s=edsI also know that Facebook has a large EDS community. I'm sure you can find some folks with migraine if you ask!
Sending hugs to you as you navigate this new experience. -Melissa, migraine.com team
Thank you so much for the resources. I am definitely hopeful that the diagnosis will open up some better control for my migraine related issues, especially since traditional methods have not been very helpful. - Amanda W (team member)
To answer your specific question: having EDS doesn’t change my personal migraine treatment plan. I still try to avoid factors that contribute to migraine, embrace factors that reduce flares, and take preventative and rescue medications.
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Well, there is one MAJOR change. I have fragile veins with EDS. So if I have to go to hospital to treat a migraine flare, I show my EDS pocket card to the staff that lists fragile veins as one presentation of the condition. And I insist on any picc line, blood draw, etc being done according to fragile vein protocol (it is different and you can find it online). I was always getting blown veins, etc. Knowing it’s EDS related enables me to advocate for myself. Too often nurses or lab techs think I’m just being a needle wimp. The medical id card lends me authority to insist on proper care.
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Many people I know with EDS also do not respond well to pain medication. It simply doesn’t work. So my migraine action plan for hospital care specifically lists which medications to avoid and which have historically helped.You have such a unique arrangement with your doctors. It definitely provides some hope that I can still find some doctors who are willing and able to work together in order to help me out. Thank you so much. - Amanda W (team member) I hope the same for you also. My doctors are all literally in the same building (a hospital) for the most part. And all are on the same network with immediate digital access to all my records, pasts appointments, notes etc. So that makes a big difference. I do keep a medical journal in order to share information across providers also to save them the time of hunting through my extensive database or at least direct them where to look.
I too have been recently diagnosed with EDS. Actually I'm too exhausted to really research it yet due to the chronic fatigue syndrome and a bunch of other comorbidities.
I think my hyper mobile neck causes the nerves to be compressed and triggers the migraines.
So many competing challenges that can come with migraine. It definitely makes it difficult to pursue treatment due to the way these conditions can deplete and exhaust us. Are you working with a migraine specialist who may be able to help you navigate these challenges? Sometimes we have to take it slow when it comes to researching and trying new treatments as that process in itself is both time and energy-consuming. We are here for you on this journey. Warmly- Holly -migraine.com team. I am so sorry that you are dealing with multiple diagnoses and of course the fatigue. CFS is another diagnosis that we share. I understand just how complicated all of the conditions can make life. From what I am learning, EDS can cause a variety of issues that would lead to an increase in migraines.
I hope you know that as a community we are here for you. Hopefully, you have found the community to be helpful and informative. - Amanda W (team member)
