Author Topic: Sjogren's Headaches  (Read 28234 times)

melo1964

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Re: Sjogren's Headaches
« Reply #15 on: October 22, 2010, 07:26:54 PM »
I was just diagnosed a few months ago.  I had a chronic sinusitis for 8 months and had sinus surgery before they discovered what was wrong.  I kept getting the sinus infections and finally got paroditis.  That is when my ENT sent me to the Rheumatologist.  I had terrible headaches and always blamed them on my sinuses, but now my sinuses are fine.  I started investigating on my own and I found out that migraines cause a feeling of intense sinus pain (feels like my check bones and forehead are very tender to touch).  I also have an aching in my teeth.  I do have throbbing pain behind one eye or another, and sometimes both eyes.  My jaw also gets very tender and sometimes painful.  I also get a trigger point in my back that runs up my head to behind my eye.  I am also very sensitive to light, sound and smell.  I just started to see a neurologist and she put me on Trazadone.  She wants to start me on Topomax.  I just started doing Yoga and it seems to really be helping the discomfort.  Much more so than the meds.  I am not sure if these headaches are Sjogren's related or not.  As a matter of fact, I mentioned the "face pain" that I was experiencing and 3 of my doctors, including my Rhematologist, told me they did not know what it was.  I started investigating on the internet and discovered it for myself.  I am glad we have this forum to get the word out. 

littleme

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Re: Sjogren's Headaches
« Reply #16 on: October 23, 2010, 05:09:38 AM »
I have had headaches all my life.  They intensified as I have gotten a little older and my symptoms have been more intense.  I have a headache that lasts about 3-4 days about every two weeks.  Best way to describe is pressure through my sinuses and in the back of my head down my neck.  It feels like I am getting a migraine.  Nothing takes it totally away.  I just deal.  Had an MRI last year...didn't show anything.

I have what I think is a sinus infection right now.  Trying to decide whether to go to Urgent care or not.

Glad I am not the only one with headaches.
Female. No diagnosis, plaquenil, prednisone (for flares), restasis, multivitamin, fish oil, vitamin d

littleme

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Re: Sjogren's Headaches
« Reply #17 on: October 23, 2010, 05:11:41 AM »
Forgot to mention that..yes, I think it is due to SJS.
Female. No diagnosis, plaquenil, prednisone (for flares), restasis, multivitamin, fish oil, vitamin d

season

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Re: Sjogren's Headaches
« Reply #18 on: October 23, 2010, 02:02:55 PM »
I too have horrendous headaches that usually last for 3 days. I also have trigemenal neuralgia "face pain".

kathylee

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Re: Sjogren's Headaches
« Reply #19 on: October 23, 2010, 03:46:23 PM »
For me I think I know what I would considered a Sjs headache. When I have tried to stay over at my duaghters and dont have my usual great humidifiers I get this deep, dull headache that makes it hard to sleep or have a good time. The only thing that makes it better is a big dose of hydrocodone but that I dont prefer. For a true solution I have to be home for several hours in my humidified air and drink more water.

Kathylee

Patze

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Re: Sjogren's Headaches
« Reply #20 on: October 23, 2010, 05:25:00 PM »
Hi Melo,

Let me also welcome you to the SJS World and family!  Please continue to look around the board as you'll often find me among the stacks trying to learn about something or another.

I understand miserable sinuses as mine have been awful since I was eight or so.  And as I hit the teen years, the migraines started (thankfully only once in a while, and not until I was in my thirties did they start to get pretty bad and more frequent), ack!  I'm lucky that I don't get many migraines anymore (thank goodness for Lyrica), and the ones I do get aren't life changing anymore (they are painful, but I can work through them now with some OTC pain killers).

Oh yes, the nerve pain in the face...the worst pain I've ever had and that includes having kidlet au natural.  I remember once taking six OTC extra strength pain killers that barely touched the pain.  Oh my, my, my....  I'm lucky enough that the 1st neuro put me on Lyrica and that seemed to take care of a lot of the nerve pain (I'm not advocating Lyrica as some folks can take it without any side effects and others have major side effects and everything in between (it causes a lot of dizziness for me, and I already have steadiness problems); and in others, it really doesn't help them and can be expensive even with insurance). 

Again, welcome, and I sure hope that you'll stop in and chat with us when you have a moment or two .  You'll find the chat information by clicking on it at the top of this page.

Take care of yourself -

Patze
Our home page  http://www.sjogrensworld.org/index.html
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puccini914

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Re: Sjogren's Headaches
« Reply #21 on: October 24, 2010, 03:12:10 PM »
Hello Everone, in advance please excuse my typing or typos, my hands are having a bad day.  My head is too, which is why I wanted to respond to this thread.  I wish I had voice recognition software.  Anyway, I've been having headaches/migraines for about 2 years now.  Various different therapies have been tried, many treatments were outed due to med conflicts.

  The best combo for my headaches was Atenelol, Trazadone and Topamax.  With the increase in Neuopathy symptoms, my Topamax was taken away and Neurontin was put in it's place.  Neurontin is not a good substitue.  My migraines have increased and my insurance only cover 9 Imitrex tablets a month.

 My nerve pain is better with the neurontin but having headaches in i'ts place is not a fair trade.  I've tried Propanolol, but the dose required to be theraputic made my BP drop so low I was having dizzy spells.  So the Ateneolo was it's replacement.  My HA's have varied from once a month to 4-5 tims a week.  With two small boys in the house, a migraine can be pure heck.

 I've noticed that any change in my original trio cocktail brings the headaches back.  Everyone is different and responds to different meds in different ways.  I would find a good Neuologist or if you have one then make sure to discuss these headaches in detail.  There are good treatments and every bit of relief we can manage is one less pain to suffer.  Best of luck to all of you and I hope you can find a nice cool dark room to lay down in when you need it most.     Jennifer
« Last Edit: October 24, 2010, 06:21:54 PM by puccini914 »

Patze

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Re: Sjogren's Headaches
« Reply #22 on: October 24, 2010, 04:08:12 PM »
Sending you a giant soft

( ( ( ( ( H U G ) ) ) ) )

and I sure hope that you feel better soon (at least your doctor find a good combo of meds that you can use and live well with).

How old are your sons if you don't mind my asking?

Take care of yourself -

Patze
Our home page  http://www.sjogrensworld.org/index.html
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Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

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sis

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Re: Sjogren's Headaches
« Reply #23 on: October 25, 2010, 03:31:51 PM »
I get the stabbing pains that prairie gal mentioned. 

Sometimes they proceed full blown migraine sometimes not.

I get a horrible burning type pain behind my right ear just before a migraine.
Does that happen to any of you?

I have had the MRI  and it is normal.  Not as bad an experience as Bernice had thankfully!

I've also had a CAT scan on my sinus?nothing.  My family doc sent me for that years ago.
He was shocked that my sinuses looked fine with the chronic sinus infections and pain I had.

My neurologist has been great.  I took topomax for 4 years for migraines.

I just went off of it to see if it was affecting my eyes.  They don't hurt as bad but are still dry and scratchy. 

I did have a hysterectomy last Sept. and I hope that I may be able to handle the headaches better now.

I'm also taking  mindfulness based stress reduction class (MBSR) that  I hope will help me get fewer headaches and handle my chronic pain.

I have also found that taking magnesium helps ward of my headaches.
I use a neti pot religiously!
I take an advil and some flexeril when I feel the warning signs (neck ache is a warning too) and sometimes it wards off a full blown migraine.
I take relpax for the migraine.

I still don't have a diagnosis.  Have an appointment at  Sj?gren?s clinic at  Duke in March.
The neurologist is sending me.

Thanks to all of you for sharing.  It helps to hear what you all have to say.  I don't feel like I'm loosing my mind!!!


puccini914

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Re: Sjogren's Headaches
« Reply #24 on: October 25, 2010, 04:51:43 PM »
Patze. My boys are now 8 and 3.  The 8 year old is now and always has been a pretty easy kid, he did have some eating problems that we are still working on, but we're doing much better on that, but he's always been a good boy.  He and his brother are opposites.  They're both really smart and the youngest, Joey, is so adepts for finding new ways to make a mess or get into to trouble.  Stubborn as a mule and a trantrum thrower.  I keep telling myself that this stage will pass.

I said I found a good cocktail, but I didn't say I got to keep it.  When the neuropathy symptoms popped up, they took away the Topomax.  They were also concerned bout my weight loss.  40 pounds since May.  Not that that's huge, but I have not appetite and can't eat more then one small meal a day without feeling stuffed and sick.  They also took e off the Methotrexate for similar reasons and that it didn't seem to be making much difference.  We always learn the hard way what a drug is doing for us onmly when we stop taking it.  So in a wa, I'm back at square one.  Imitrex helps, but 9 pills a month doesn't cut it.

I hope you find some relief soon.  These migraines can be the worst.  Anyone every get an aura hangover from Zomig?  It's like your whole world is underwater and everythings a fog.  Just wondering.   

Jennifer

melo1964

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Re: Sjogren's Headaches
« Reply #25 on: October 25, 2010, 06:38:25 PM »
I know that hangover feeling, but I can't tell what is a hangover from the headache and what is medication side effects.  I am happy to say that I have been headache free for 5 days now.  ;D I have done Yoga all but one of those days and I am being mindful of my body's cues.  I also upped my Trazadone to 200 mg over the weekend.  I don't know exactly what is working but I am thanking God for these wonderful days.  I hope all of you find something that works.  It is horrible to be in pain every day.

Patze

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Re: Sjogren's Headaches
« Reply #26 on: October 25, 2010, 07:32:29 PM »
Hi Jennifer,

Your boys sound wonderful and they are a true blessing, lucky you!

Have you seen your neuro lately?  If you have, have you asked him if Lyrica might be an option for you? 

Like I mentioned, the migraines were just awful and I would be down and out for two to four days at a time (not so good if you're a singleton).  I still get them sometimes, but it helps so I can work through the migraines with OTC pain killers now, and it also helps decrease some of the neuro pain (it also makes me very dizzy so I mainly take it at night).

I sure hope that you feel better soon.  Take care of yourself, okay?

Patze
Our home page  http://www.sjogrensworld.org/index.html
Live chats  http://sjogrensworld.org/chats.htm

Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

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BonusMom

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Re: Sjogren's Headaches
« Reply #27 on: October 25, 2010, 08:50:52 PM »
I saw my headache specialist/neuro last week and since it appears that my migraines may be related to my menses, she's instructed me to start taking 400 mg Magnesium one week before the anticipated onset of my menses.  I was warned that it may cause "D".

I began taking 200 mg and it made me a bit nauseous, but that may be just a coincidence as I have had an increase in gastroparesis symptoms of late.  I will persevere and try to work up to 400 mg because my ins co only pays for 9 tabs of Maxalt/Imitrex also.  I am also taking Topomax. Which does help.

lighthouse33

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Re: Sjogren's Headaches
« Reply #28 on: October 26, 2010, 02:45:11 PM »
I have had migraines for years.  These past three weeks, one day a week I've had a terrible headache that lasted all day.  But I think I picked up on a possible trigger.  I wear a bruxton night guard at night.  But the nights before these headaches I didn't wear my night guard.  Sometimes I'll be in so much pain, I'll climb in to bed and forget to put it in and well once you're in you're not gettng back out.  Since then I have had it in every night and haven't had a headache.  Makes you wonder if in my case it has to do with grinding of my teeth at night?
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

gsmraxe

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Re: Sjogren's Headaches
« Reply #29 on: October 27, 2010, 10:57:05 AM »
Since 2004 I had daily headaches usually accompanied by dry sinuses.  I quit smoking in 2009 and the headaches stopped.  But, I've noticed that last few months they're back.  Not as bad as when I smoked, but I'm again getting headaches, eye pain and swollen sinus passages.

Best of luck!   :)