Author Topic: Migraines?? listed as common in Sjogrens  (Read 479 times)

mollie carey

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Migraines?? listed as common in Sjogrens
« on: July 11, 2018, 07:43:29 PM »
Hello All,

I have developed migraines over the past several years, I have a brain aneurysm they're watching so when it happens I have to have a CT to check for a bleed. I had a terrible migraine for the last two days and just wondered if others experience migraines mine come usually in the morning like at 4 AM. They're quite debilitating when they happen. I read recent research that says migraines are common CNS complication in Sjogren's patients and was surprised to read it about the groups of people who experienced them and wondered how people here deal with it if they do have them.
« Last Edit: July 11, 2018, 08:01:30 PM by mollie carey »


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Re: Migraines?? listed as common in Sjogrens
« Reply #1 on: July 12, 2018, 03:46:29 AM »
I had migraines beginning in my mix-30's, long before the Sjogrens symptoms started.   I take naratriptan for them, it's pretty effective.

Strangely enough they started easing off a year or so before the Sjogrens symptoms got going.   But now I get a different type of headache  ::)
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.


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Re: Migraines?? listed as common in Sjogrens
« Reply #2 on: July 12, 2018, 04:57:04 AM »
Hello, so sorry you are experiencing migraines...yes I get them as well.  I had them when I was younger when they were treated with Percocet mainly.  They went away for quite some time until about five years ago I started to get them again.  The intensity and severity of them can become quite bad.  I finally sought advice from a neurologist who wanted to put me on Topamax - an antiseizure medication to reduce the number of migraines along with Imitrex to help stop a migraine when it starts.

I tried the Topamax last summer - it was not for me - it made me feel extremely spacey and had me running to the bathroom (sorry TMI I know).  I stopped the Topamax and now just use the Imitrex as needed.  The problem with Imitrex is I receive 6 nasal spray doses at a time (insurance regulated I believe) and I have to suffer through some migraines with Excedrin migraine only to be certain I have the nose spray when I REALLY need it.

Imitrex can help quite a bit with some of the migraines I get but where you have an aneurysm I am not sure they would prescribe this to you.  Can you take Excedrin migraine?

I hope you are able to find some relief - having headaches really stinks but migraines are a whole other beast.

Sending positive thoughts your way.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc


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Re: Migraines?? listed as common in Sjogrens
« Reply #3 on: July 12, 2018, 09:03:54 AM »
I never even had headaches pre SJS.
Now after Dx and an ER visit..when Neurologist on-call was contacted as they checked for stroke, I was later seen by Neuro who Dx'd migraine.
I am Rx'd topamax and do very well with it. Found it aided in my case with mental clarity. So we are all different.

Stress has been high of late and I overlooked Neuro appt as other ones came to forefront.
Migranes returned.
Neruo increased dose in light of current event.. and so far so good.
Originally Neuro had asked me to keep a headache diary.. time of day, what was going on before, duration, etc.

« Last Edit: July 12, 2018, 09:17:48 AM by quietdynamics »
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

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Re: Migraines?? listed as common in Sjogrens
« Reply #4 on: July 12, 2018, 11:43:13 AM »
My migraines started when I started losing my eye. I had them daily, they weren't diagnosed until after my eye was removed. When I told the surgeon the headaches had not stopped, he asked a few questions about them and said they were migraines. I went to my primary care physician and told her, she prescribed Imitrex. It was a miracle.

Now I get Botox every three months (another miracle!). I started having migraines due to a neighbor burning wood, my neurologist told me to take promethazine as soon as I smelled it. It stops the migraines before they start!

Since the Sjogren's has become very active, I have been having some "different" headaches but they're nothing like migraines so I just ignore them.

Mollie, do they have a plan for your aneurysm? Are they watching for something that will put the plan in action? It sounds very frightening, I hope you're going to be okay!


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Re: Migraines?? listed as common in Sjogrens
« Reply #5 on: July 12, 2018, 02:42:27 PM »
Debilitating migraines began about 25 years ago for me.  They were usually 8 hours in length, and I could experience them for 80 or 90 days in a row.  In a dark room, head throbbing, often vomiting which made things worse.  All I could do was ride it out.

This went on for 20 years.  I even experienced double vision on two occasions.  Then the silent migraines began.  I would have all the symptoms but without a headache, and suffered with confusion, depression,  and even amnesia.  That's when I was assessed for stroke and seizure disorder.

I tried some of the medications that are used for seizure and migraine prevention but they made me so depressed that I became suicidal.   Then I tried 500 mg of riboflavin daily, along with chiropractic and acupuncture treatments.   These together saved me.

I still have the silent migraines though, on occasion.   I find them tough to recognize because I just see sparkly lights similar to tinsel, and nothing else.  But that's when the cognitive issues get so awful that I can't function.   I almost miss the headaches.  Almost!  At least then I knew I had to take measures to make things better.   
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis