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Constant Head Pressure,Eye Pressure, Fogginess, etc with SS?

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Sjogren's Syndrome
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Posted 7/23/2014 1:19 AM (GMT 0)
Hey folks,

New to the forum--thanks so much for thoughts, insights, opinions, and sharing your personal stories. I've battled for 6+ long years of auto-immune type symptoms, most notably on the neuropathic pain end, but not excluding GI issues, anxiety/depression, ENT dryness, disfunction, etc. The last 6 months have been a real nightmare. I've had 24/7 pressure and pain in my head, face, and eyes, stiff neck, dizziness, fogginess, general feeing of discord and disconnect, almost like a constant vice or belt tied around. I feel drunk 24/7 and haven't had a drink in almost a year. My energy is at an all time low too.

MRIs, MRAS of brain and neck, EMGs, cardio work ups, vascular work ups, blood tests, Lyme's, everything has came back normal, except most recently I did show an antibody built up for Sjogren's. I have the biopsy scheduled for next week. My rheumatologist is trustworthy and caring, but doesn't believe the extent of my head problems are likely. I've seen several Neuros and tried several migraine/pain meds that have done nothing at all. Through my research I've found head pressure, migraines, and cranial nerve pain isn't too uncommon with SS and wanted to hear from others.

I am a 27 year old male, former college athlete and SAG actor who has been absolutely stopped in my tracks as of the last 6 months.

Best to you all and your personal journey. I'm here to chat whenever.

Thomas
Posted 7/24/2014 2:54 AM (GMT 0)
I find that I'm now VERY sensitive to changes in barometric pressure. Sometimes my head is in a vise, sometimes it throbs like my heartbeat - just feels like it will explode. When it happens I want meds, a Dr, the whole works -- but when it stops I don't want to go see anyone. I guess I don't think that much, if anything, can be done.

Let us know how it goes!
Posted 7/27/2014 2:25 PM (GMT 0)
Make sure to have plenty of ice for after the lip biopsy as that will help the most. Mine was very painful and it really hit after the novacaine wore off. My ent took 2 - 3 Samples missed getting me numb enough and so it hurt like heck. I hope your goes better than mine.
Also, this tests is only as good as the tech reading it, mine came back inflammed but not infammed enough and both the ENT and RA and eye doctor said its Sjogrens to me..after these results...So even this lip biopsy has its flaws.
Why would you submit to this when you have a positive blood results? Just go get a better RA doctor willing to treat you with your bloodwork and cancel the lip biopsy. That's what I'd do,...lip biopsy is painful!
Yes I get the head pressure, but I also have a dx of migraines from vertigo testing, which I also do not recommend.
Maybe try a pain management doctor for occiputal nerve block injections there are also botox injection for headaches however my insurance won't cover botox, maybe give the botox injections a try, but only through a good pain management doctor!
Hope your doing better soon...
Posted 8/6/2014 9:02 PM (GMT 0)
Hi:

I was interested in your posts as I have had chronic daily headaches that have not departed for the past 12 years. I had some headaches before and 2 migraines many years before but I always overcame them. This pain began at work. I was looking down reading and my head started filling up with pressure. That is the only way I could describe it to the Doctors. They think I did not have a stroke. I had a CT Scan done and an MRI after. Another MRI a few years later. Both MRIs do see "foci" in white matter that one technician suggested are seen in migraine patients. For me the headaches are more of a cervicogenic headache. I am in Canada. I am seeing a Headache and Pain Relief Doctor. There was talk at a Pain Centre at a Hospital of trying Botox but that did not happen. I am getting nerve blocks. My Doctor freezes the nerves in attempts to get them to heal. Our health care covers the nerve blocks.
I do see a R.M.T. first and then nerve blocks after every 4 weeks. It is not a cure. I was on Lyrica but was taken off due to weight gain. Once off nerve spasms in my back and behind began at bedtime.

Wind is a problem for me. Get bad flare ups of pain.

I was certainly willing to try Botox but I am glad now that I didn't. It doesn't seem right to put bacteria in your body.

Part of my pain is from Osteoarthritis in my neck. That was diagnosed in an MRI of my neck. A Dentist said I have neuralgia. Nerve damage may be from medication. I have Fibromyalgia. I do get relief when I go to bed. I wonder if they could have taken the MRIs in an upright position if the diagnosis would have been the same?

I have not been diagnosed with SS but I do have issues with my eyes. I wake up every morning with swollen eyes. It takes a couple hours before I can see as they are so sore and tired. My Optometrist told me to put drops in my eyes at least 3 times a day but has not prescribed anything. I just buy over the counter drops.

All of this happened in my late 40s. I am Female, now 60.

Hope you get some help. I am not much help in suggesting a way to stop the pain - I am still not there.

Take care.

Loring

Osteoarthritis, Fibromyalgia, Neuralgia, I.B., Chronic Daily Headaches...
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