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Old 05-16-2010, 01:01 PM   #1
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Danigirl22 HB User
Sjogren's and migraines?

I've had migraines since I was a teenager. I'm now 33 and suddenly, last summer, I started getting very severe migraines, once a week for two months straight. They slowly improved to twice a month and now about once a month. I saw a neurologist and am taking daily medicine which has been a miracle for me.

Ironically, this doctor suspected Sjogren's Syndrome based on my new patient paperwork. I checked yes to having dry eyes and mouth. He was familiar with it, didn't treat it, but as a side note, mentioned I should see a rheumatologist. He was right. I recently got diagnosed, about a year later.

After seeing this doctor again and asking questions, he said Sjogren's Syndrome is not related to the migraines I've been having. It's apparently a coincidence. Does anyone else have migraines that started or got worse with Sjogren's? My doctor said Sjogren's can cause headaches, but not migraines, however headaches can turn into migraines. It makes sense to me that the two are related, but I'm confused why my doctor doesn't think that's the case.

 
Old 05-18-2010, 05:20 PM   #2
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surreygal HB User
Re: Sjogren's and migraines?

Hi There:
Vasculitis is inflammation of the blood vessels, and is very common in SS. I have it and get debilitating migraines from it. I also get small purple spots and bruises in places where I haven't hurt myself, another sign of vasculitis. Have you been tested for brain lesions? I have those--many SS patients do. They may cause neurological problems. I have symptoms like multiple sclerosis.
Have you tried Imitrex or any of the other anti-migraine prescription medications?
Take care and I wish you well.

Quote:
Originally Posted by Danigirl22 View Post
I've had migraines since I was a teenager. I'm now 33 and suddenly, last summer, I started getting very severe migraines, once a week for two months straight. They slowly improved to twice a month and now about once a month. I saw a neurologist and am taking daily medicine which has been a miracle for me.

Ironically, this doctor suspected Sjogren's Syndrome based on my new patient paperwork. I checked yes to having dry eyes and mouth. He was familiar with it, didn't treat it, but as a side note, mentioned I should see a rheumatologist. He was right. I recently got diagnosed, about a year later.

After seeing this doctor again and asking questions, he said Sjogren's Syndrome is not related to the migraines I've been having. It's apparently a coincidence. Does anyone else have migraines that started or got worse with Sjogren's? My doctor said Sjogren's can cause headaches, but not migraines, however headaches can turn into migraines. It makes sense to me that the two are related, but I'm confused why my doctor doesn't think that's the case.

 
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Old 05-18-2010, 06:20 PM   #3
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Re: Sjogren's and migraines?

Thanks for responding. It seems like I do have Vasculitis, although no doctor has told me this. I happened to find a mysterious bruise just last night, a purple circle that looks different than a typical bruise. I'm on low-dose daily aspirin for "elevated clotting", which I was told is related to Sjogren's/inflammation, but it sounds like it helps Vasculitis too?

How would I know if I have brain lesions, other than from having tests done?

I used to take Imitrex for migraines, but it stopped working last year when they got really bad. I now take Maxalt, which works much better, in addition to daily migraine medicine that works to prevent migraines rather than just treating them as they come. It has helped a LOT! It's called Lamictal and is actually anti-seizure medicine. I don't have seizures, but a side effect of the medicine is improvement in migraines.

Thanks again!

Quote:
Originally Posted by surreygal View Post
Hi There:
Vasculitis is inflammation of the blood vessels, and is very common in SS. I have it and get debilitating migraines from it. I also get small purple spots and bruises in places where I haven't hurt myself, another sign of vasculitis. Have you been tested for brain lesions? I have those--many SS patients do. They may cause neurological problems. I have symptoms like multiple sclerosis.
Have you tried Imitrex or any of the other anti-migraine prescription medications?
Take care and I wish you well.

 
Old 05-19-2010, 09:14 AM   #4
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surreygal HB User
Re: Sjogren's and migraines?

Hi again:
You can discover if you have brain lesions by getting an MRI done. (Lesions rarely show on any other type of imaging.)
I take Lamictal, too. I had wicked migraines since my adolescence. I started having temporal lobe (conscious) seizures about a year ago. Then I had my very 1st Grand Mal (unconscious) seizure, where I chewed up my tongue and lost my bladder control, at the end of Jan 2010. My neurologist started me on Lamictal, and I have since noticed my incidence of migraines is greatly reduced, and I now rarely get them.
I couldn't use Imitrex--it made me really sick.
I'm glad you've found something that works for you.
The purple spots you are getting may have something to do with the lose dose anti-coagulant drug you're taking. I don't take any anti-coagulant meds, though and I get those purple spots, in places where I couldn't have injured myself. Plus, I frequently get pin point red spots on my legs and sometimes my arms, too. I also often get redness (not exactly a rash, as it doesn't blister or itch) on my upper chest. This can last several days, then mysteriously disappears.
Good luck and take care.

 
Old 06-01-2010, 10:32 PM   #5
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Re: Sjogren's and migraines?

Hi ,
My sister has S.
and S seams to attack the r vulnerable places in the body..
so if there is a history of migraines in your family or yourself..( a weakness) then it probaly can effect your S.
Migraines are a neurological desease, cuase by calsium channels not working right.
and or serotonin deficency..

youre born with it.
you dont accuire it.

best of luck

jen

 
Old 06-01-2010, 10:44 PM   #6
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Re: Sjogren's and migraines?

Hi ..
yes Sjorens can cause neurological problems , it often attacks vulnerable ares, if you have been a migraine sufferer any time in your life OR if your family ie Mother father our aunty has migriane , that mean it's possible to have migraines, migraines are inherited.
it's a desease not a syndrome.
I have vertigo with my silent vestibular migraines, rocking 24/7 and so do many other people .
and good luck to you.
It's a shame DR's dont seem to READ anymore.

PS my sister has Sjogrens.
i feel for you

jen

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Old 06-03-2010, 03:13 PM   #7
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Re: Sjogren's and migraines?

Hi Ladies: I just wanted to say that I found out through a hormone study that I was in in 2007 that I was estrogen dominant. I started having seizures 5 years ago which was the start of perimenopause for me. I haven't been able to get them under control.

The seizures go right along with the migraines. I had cousins, all 3 of them sisters, that either had seizures or migraines. The one with the migraines also has Sjogren's. The neuro-endocrinologist told me that it's the increased estrogen that is causing the seizures. I'm trying to get the estrogen levels down by taking Lupron and Progesterone treatments.

I read in Dr. John Lee's books: "What your doctor won't tell you about menopause" and perimenopause", about the estrogen dominance. There are over 40 symptoms of it and I've got about 14 of them. Dry eyes, cold hands/feet, hypoglycemia, magnesium and selenium deficiencies, and insomnia, to name a few.

So, have your hormones tested by an endocrinologist and see what they say. Most PCP's and gyno's won't do the testing. You might benefit from some HRT. Good luck.

 
Old 07-13-2010, 12:27 PM   #8
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Re: Sjogren's and migraines?

Quote:
Originally Posted by Danigirl22 View Post
I've had migraines since I was a teenager. I'm now 33 and suddenly, last summer, I started getting very severe migraines, once a week for two months straight. They slowly improved to twice a month and now about once a month. I saw a neurologist and am taking daily medicine which has been a miracle for me.

Ironically, this doctor suspected Sjogren's Syndrome based on my new patient paperwork. I checked yes to having dry eyes and mouth. He was familiar with it, didn't treat it, but as a side note, mentioned I should see a rheumatologist. He was right. I recently got diagnosed, about a year later.

After seeing this doctor again and asking questions, he said Sjogren's Syndrome is not related to the migraines I've been having. It's apparently a coincidence. Does anyone else have migraines that started or got worse with Sjogren's? My doctor said Sjogren's can cause headaches, but not migraines, however headaches can turn into migraines. It makes sense to me that the two are related, but I'm confused why my doctor doesn't think that's the case.
Yep, have had migraines since I was 20...now 44. was diagnosed with Sjogren's about 8-9 years ago. My migraines were about 6 a year until about 2 years ago when they tranformed into daily migraines. Eventually even had a hemiplegic episode. My neurologist put me on Topamax as a preventative which I take daily (250 mg) as well as Magnesium (500mg) and Riboflavin (200-400mg) daily. She won't let me take any of the Triptans because I am on high blood pressure meds and the hemiplegic episode.

I also have been diagnosed with "lesions", but my neuro told me that most migraine suffers have them. She said the goal is to prevent them from getting worse! Do I think the sjogrens is connected...you bet I do since my sjogren's has been in a terrible flare the past couple years. Do they think so?? Well, who knows?? I have yet to be diagnosed with vasculitis but I do get the purpura and I feel that this diagnosis could be right around the corner.

 
Old 07-18-2010, 05:51 PM   #9
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Re: Sjogren's and migraines?

The migraines may or may not be part of the Sjogren's but it is NOT co-incidental. When the migraine is not treated, it will set into the eye with something called Horton's Syndrome. A migraine in the eye on top of Sjogren's is extremely painful.

 
Old 05-09-2011, 08:52 PM   #10
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Thumbs down Re: Sjogren's and migraines?

Danigirl22
I've had migraines in my right eye for years. They are less now.
I don't know what you think of alternative medicine but I have been doing Bodytalk with my massage therapist and it has done wonders for me. She connects the heart and the brain with the pain and taps it out (energy work) and it's gone. Longer time 'til I get another and now I can tap it out by myself with pretty good results. You might see if you can find someone who knows it and see about working with it.
She also used it to tie in my hydration system into the Evoxac I take and no it doesn't make me sweat a while after taking it. If you find someone see if they have a good reputation as it is really a healing art and tis gal has it.
Good luck and hope you can get those headaches knocked out for good.

 
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Old 06-25-2011, 02:12 PM   #11
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Re: Sjogren's and migraines?

Hi , as I read the messages here i sure see what threads us all together. I have Migraine Variant but have had that for as long as I can remember BUT it has only been diagnosed as such. I haven't discussed a possible link with Sjogrens with my neurologist however so I don't know what he thinks. I am in a smaller town and I don't have doctors or dentists that know about Sjogrens at all. It frustrates me to death. It is hard to understand at best. I had that for 10 years before I was diagnosed with Celiac Disease as well.

 
Old 06-25-2011, 11:10 PM   #12
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surreygal HB User
Re: Sjogren's and migraines?

Quote:
Originally Posted by Danigirl22 View Post
I've had migraines since I was a teenager. I'm now 33 and suddenly, last summer, I started getting very severe migraines, once a week for two months straight. They slowly improved to twice a month and now about once a month. I saw a neurologist and am taking daily medicine which has been a miracle for me.

Ironically, this doctor suspected Sjogren's Syndrome based on my new patient paperwork. I checked yes to having dry eyes and mouth. He was familiar with it, didn't treat it, but as a side note, mentioned I should see a rheumatologist. He was right. I recently got diagnosed, about a year later.

After seeing this doctor again and asking questions, he said Sjogren's Syndrome is not related to the migraines I've been having. It's apparently a coincidence. Does anyone else have migraines that started or got worse with Sjogren's? My doctor said Sjogren's can cause headaches, but not migraines, however headaches can turn into migraines. It makes sense to me that the two are related, but I'm confused why my doctor doesn't think that's the case.
Hi There:
Yes, I've had headaches of all types that are Sjogren's induced. Migraines are frequently caused by eating certain foods on an empty stomach such as caffeine, chocolate or cheese, and they are associated also with an increase in estrogen say around menstruation time. But, they are also Sjogren's related as the rogue white cells can attack anywhere in the body, which can result in a secondary headache as a result. They can also directly be caused by brain lesions, which can also be caused by Sjogren's. I have brain lesions that were originally mis-diagnosed as stemming from Multiple Sclerosis. The difference between these 2 diseases is the MS lesions move around in location, healing and then arising in new parts of the brain, where as Sjogren's lesions stay in one place, and tend to grow slowly. Ask for a brain MRI. Don't bother with a CT scan as lesions rarely show on one, but they will on an MRI. I hope you find answers. Best wishes and take care.

 
Old 06-26-2011, 10:58 AM   #13
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Re: Sjogren's and migraines?

I've had migraines since I was a little girl. My Sjogren's is in my brain and I do have symptoms very much like MS. My guess would be yes. I beleive Sjogren's can effect any part of our bodies.

I am taking Topamax and Gabapentin for my headaches and have been for some time now.
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God Bless

 
Old 05-18-2012, 03:39 PM   #14
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Re: Sjogren's and migraines?

yes sometimes i get them every night and i awaken with severe pain that leaves me seeing circles of light. i'm sure it's related to ss.

 
Old 05-19-2012, 05:24 PM   #15
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Re: Sjogren's and migraines?

Thanks for your reply. I have also read just recently in Sjogren's material that they are associated. I am finally having things clear for me after so many years. Quite interesting but also frustrating for it to take so many years for things to come together and it is so often the patient themselves that finally figure it out since Sjogrens is such a baffling disease. Thanks for your imput. CBG

 
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