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Sjogrens Topics => Living With Sjogren's => Topic started by: mspetnurse on December 29, 2007, 09:55:03 PM

Title: Head Hurts
Post by: mspetnurse on December 29, 2007, 09:55:03 PM
Are headaches from the constantly dry sinuses pretty common? Lately, my head seems to hurt all the time, and it's driving me crazy. If I use my personal steamer, or take a shower, it is some better, but pain meds do almost nothing for it.

How do the netti pots work for that? I don't know if I could handle that or not.

I have had chronic migraines before, and this is nothing as bad as that, just very annoying.

Title: Re: Head Hurts
Post by: Pooh on December 29, 2007, 10:06:31 PM
Hi Martha,
Sorry about those headaches.  When I saw the title of this thread, I thought, ut oh, this sounds like me.  I have been at the point of cutting my head off for the past 2 days, but I have the flu or something close to it. 

I have also had these headaches with the dryness but it never lasts to long.  If a humidifier doesn't help or you can't find relief from medication, then I think you should discuss this with your doctor.  Are your eyes bothering you too?  Sometimes we have other things going on that can contribute to the headaches.  Have you started a new med lately? 

I hope someone else can shed some more light on the subject.  Until then I hope you find something to relieve it.

Title: Re: Head Hurts
Post by: genko_b on December 29, 2007, 11:13:29 PM
My head does the same thing. It's especially bad in the winter with the heat on. Try Ocean Saline Spray. I got my younger sister a neti pot for Christmas (really - she asked for one!) and she will try it and see how it works. I'll let you know,

Title: Re: Head Hurts
Post by: susiekline on December 30, 2007, 06:06:45 AM
I have a neti pot and use it when I am seriously congested. I got it at Walgreen's a few years ago. The secret to the neti is to tilt your head to the side and slightly forward and then close up your throat before using it. Then the water will go through your sinuses and not down the throat--not pleasant! lol And have tissues ready because you will need to blow your nose when you're done!

But I've gotten the best relief from my dry nose from a saline mist I got at Meijer. I spritz up my nose a couple of times a day and it's been helping. The sores I had in my nose are mostly gone.

Hope this helps!
Roselle, IL
Title: Re: Head Hurts
Post by: Pooh on December 30, 2007, 07:51:50 AM
Hi Martha,
I'm sorry I didn't think of this when I answered you before, but did these headaches just start?  If they started recently, did you also start a new medication at time? 

The reason I ask this is, I was on a medication when I was first dx'd with SJS and the headaches were horrible.  I finally told my rheumy about them when I saw him at my 3 month check up and he immediately took me off of it.  I didn't know at the time that the headaches were a side effect of the drug. 

If you find this has happened to you, please notify your prescribing doctor and ask if he will change it. 

Just a thought.

Title: Re: Head Hurts
Post by: Rania on December 30, 2007, 05:33:18 PM
I use nasal spray that contains oil. That help a bit for my dry sinuses.

And thank you for telling about the neti pot! I think I tried to explain it in a thread about infections earlier tonight, but I couldn't find the word for it in English,. Well, now I found it! Neti pot! Cute name! Not so cute to use, but it sure helps.

Rania  :)
Title: Re: Head Hurts
Post by: mspetnurse on December 30, 2007, 07:17:11 PM
Hi Pooh,

My eyes are doing okay, that is something I have to watch since I have Hashimoto's thyroiditis also. The only new medicine I am taking is Buspar for some anxiety issues, and I have been on it for 3 months. Everything else I have been on for 10 months or longer.

I am using Hylamist nasal spray. It is a saline spray with hyaluronic acid, which helps hold the moisture in a little longer. It works pretty good, and you can use it as often as needed. I also swab the inside of my nose with KY jelly. This has worked the best of anything I have found, and is very nonirritating.


Please do let me know what your sister thinks of the neti pot. Yeah, I think the dry air from the central heat is most of the culprit.


Thanks for the info on the neti pot. I have never tried one, but I have seen them, and was just wondering if anyone had had any success with them.


Can you buy it with the oil in it, or do you have to add it yourself?

I have a bad habit of not drinking enough too. I try to keep track of my intake, but some days are very busy, and I forget to drink enough. I have a 32 oz bottle, and I try to drink that full twice in a 24 hour period. I'm going to try to keep up with this a little closer and see if it helps too.

Thanks for all the suggestions and support..... You guys are great!

Title: Re: Head Hurts
Post by: Pooh on December 30, 2007, 09:24:00 PM
Martha remember when drinking your water to SIP not gulp.  Gulping washes away what little moisture you have in your mouth.  Using a straw is even better. 

Just an added thought here.  Take care and let us know how you are doing.

Title: Re: Head Hurts
Post by: Shari on December 31, 2007, 06:02:33 PM
It seems that when I have anything inflamed that i get headaches along with it.  Some particularly irksome headaches have been caused by imflamation of a nerve on my scalp.  Does not really feel like that but it is what the neuro diagnosed for that particular  type of headache.

Hope you are feeling better Martha
Title: Re: Head Hurts
Post by: Rania on January 08, 2008, 03:28:43 PM
Hi Martha!

I'm sorry I didn't see your post untill now.

I buy my nasal spray with oil in it. I don't add anything. I could write down the brand name, but I doubt it would be any help, I'm in Europe, and we have other names on most meds and other helpful things a Sjogie needs.

I buy it in a health store, where they sell craneberry capsules, Evening Primrose oil and so on. I'm not sure what you call stores like that in USA. It is not a pharmacy. (Well, I guess it is posible to buy what I mentined in a pharmacy too.) But this store sell gluten free food, all kind of teas that is supposed to help for this and that, fish oil capsules, different cream too put on the skin, rice pillows to warm up and put on aching muscles and so on.

Oh if I only knew the name of such stores in English!  :-[

Rania  :)

Title: Re: Head Hurts
Post by: Shari on January 08, 2008, 05:36:49 PM
Title: Re: Head Hurts
Post by: Rania on January 09, 2008, 03:29:07 PM
Thank you, Shari!

Rania :)
Title: Re: Head Hurts
Post by: Hockey15 on January 24, 2008, 07:20:15 AM
I have a headache everyday. The pain is under my eyes, by my nose. I am so dry. I am sure it is sinus, sometimes it turns into migraine headache.
Title: Re: Head Hurts
Post by: deltagirl on February 08, 2008, 10:40:23 PM
Amen to the everyday headache.  It just depends on what's going on in my day, the weather, sounds, smells, lights - and then maybe I can function.  Doncha just want my life? ::)
I've tried everything - all the medicines, exercises, chiropractors, massage therapists, biofeedback, yoga, pilates, and even botox injections.  This is all I can think of in a couple of minutes & I've had the terrible headaches for at least 15 years so I know I'm missing some stuff.  Sleep in a dark space helps too - eye masks are a MUST.  I had new french doors installed this summer in my bedroom with black-out blinds in them & they are wonderful.  The windows have the black outs too so it's really dark.
Title: Re: Head Hurts
Post by: lynnmarie219 on February 09, 2008, 06:30:48 AM
Hi Martha!

For my dryness I use a saline nasal spray which I can use as much as needed and Ayr nasal gel which is much thicker for use at night.

I just bought a Neti pot and used it once. I thought it was the weirdest thing, but I broke down and got it when I was at my wits ends with dryness and sinus irritation. I watched it in the box for about a week thinking I cant use this silly thing........but when I tried it it wasn't bad at all......just keep your head forward and tilted  and your mouth open. There are actually videos online of people using them to teach you if you look up neti pots under a search!

I say go for it.....many people use them...its safe and I don't think you can overdue it if you use a safe solution.

Keep us posted on how you are doing...good luck!
Title: Re: Head Hurts
Post by: mspetnurse on April 02, 2008, 09:16:52 PM
Sorry I haven't been on in a while, I will tell you why in a day or two... long story.

I finally found something that helps more than anything else right now.

Just taking a Q-tip and swabbing the inside of my nose with a little KY jelly a couple of times a day helps a lot. I have tried all kinds of sprays and most don't last long and the saline burns my nose sometimes. I just happened to think about the KY, and bought one of the generics to try. It does not harm the tissues in any way, and last much longer than the sprays.

Title: Re: Head Hurts
Post by: Tamik on April 03, 2008, 08:55:57 AM
I too have been suffering from nasty headaches - especially in the morning when I woke up.  I thought it was beause I was just so dry.  My neurologist did an MRI of my head and neck and they were normal so he said it was jsut something I would have to live with and gave me painkillers as well as migraine prevention meds. The meds did nothing-  I am very persistant with the why - why was I having these headaches?  They were not an issue 2 years earlier.  I mentioned this to my rhuemy and she sent me back for a neck x-ray - one where I had tipped my head back.  It turns out that my neck muscles were weak and the vertabrae in my c-spine were sliding out of position because the muscles were not holding them in place- which was putting pressure on the nerves  -causing a lot of my headaches!!!  I have been going to physical therapy for a couple months now and the difference is amazing -  It did take time to build up to the point where I could say that though! I have been headache free now for over a week!  Considering that I used to have a constant headache all day  - in my nose and eye area the most -treated for many sinus infections that were not -  I am enjoying the days free of them!  It doesn't hurt that I get a massage from the PT after I do my excercises with him :)  Tami K
Title: Re: Head Hurts
Post by: Shari on April 04, 2008, 06:30:28 AM
Martha~~I'm glad that you found some temporary releif and hope that you continue to get a break.  I hope your story is all good ????

Tami~~Wow!  releif!  Will be glad to know that this contiues to keep you headache free!

Take good care all  ~~Shari~~
Title: Re: Head Hurts
Post by: mspetnurse on April 04, 2008, 09:59:15 AM

I may have to check into this, and I'm glad that the therapy is helping you.

Oh, I love a good massage. I have a gift card for a free one, but I have to get the okay from my surgeon before I can use it. I see him next Thursday.


I posted my story in the general folder under "MIA on the boards".... unfortunately, none of it was good.

So far so good with the Ky, and I only have to do it a couple of times a day as opposed to several times with the spray.


Title: Re: Head Hurts
Post by: irish on April 04, 2008, 11:04:21 AM
Tamik, The first question I would ask my doctor is why do I have muscle weakness in my neck. Is it because of the Sjogrens or is there something else going on? Sjogrens can cause muscle weakness as can other autoimmune diseases. I guess I would want to find out the reason for this.

Myasthenia gravis can cause muscle weakness in the neck also and that is an autoimmune disease that requires different treatment than sjogrens. Do a google on Myasthenia gravis and check out the symptoms to see if you have anything that might apply. I had symptoms for decades and never even connected it with myasthenia as it was such a slowly progressive disease with me.

So many times we think that we have a little issue and it turns out that it can head us off in a different direction with different treatments. Good luck. Irish ;D
Title: Re: Head Hurts
Post by: Tamik on April 06, 2008, 09:43:25 AM
Thanks for the suggestion -I will definitely ask about that - I hope it is just my sjogrens!:)  My wrists and triceps are also week.... Tami K