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sjogren's headaches

Posted , 6 users are following.

marianb
marianb

Hi everyone. I'm new to the forum but not to sjogrens. I was diagnosed in 2006. First it was melanoma, then right after that sarcoidosis and then sjogrens and fibromyalgia. This was all within 6 months of each other. My sarcoidosis is in remission but the sjogrens and fibromyalgia are with me most of the time. I thought I was going to be lucky because dry eyes, dry mouth and fatigue seemed to be the worst of it for years. The last six months all has changed and it seems that it is progressively getting worse. Now I have headaches that won't go away, I have that phantom smell that comes from nowhere, one second I'm hot the next I'm freezing and the list goes on. I recently went to my RA for a six month checkup and I had blood work done. My BP was really high and my cGFR value was 55mL/min/1.73m2. I saw this on my chart online but it said everything was normal even though the kidney function was flagged. My GFR was flagged a year ago but he never even brought it up as a concern. I'm wondering if my headaches have anything to do with the kidney function and the bp being too high. It's not always high but seems to fluctuate back and forth. It was 155/100 in his office. All he said is to cut the 5mgs of prdnisone down to 2 1/2 mgs to see if that helps the bp. I tried but my flare ups are coming so frequently I can't survive on that low of a dose. I usually have to up my dose when a flare up hits not lower it. I do take 75 mgs of lyrica X3 daily. Is there anyone who can suggest what to take for these headaches. I use restasis daily but when I have a headache like this the restasis doesn't seem to do much. It feels like my eyes are huge and they just hurt. The fatigue has increased 5 times what it used to be. If anyone has any ideas please share. 

2 likes, 15 replies

15 Replies

  • estelle44124
    estelle44124 marianb

    Posted

    I'm just wondering if you might be sensitive to light. I certainly am; I don't get headaches but my eyes are so sore around the edges I often need to close them and use warm compress. If you haven't tried anything to reduce light levels, is it worth a try,?

    • marianb
      marianb estelle44124

      Posted

      Sorry I've taken so long to thank you and everyone else who responded to my headache issue. My Headaches and fatigue have been off the charts lately but today has been good so far. I have been making sure I wear sunglasses while driving and it does help. I have begun to realize that dry eye plays a huge role in my headaches. For some reason, even though I've been dealing with the dry eyes (and DRY everything else) for years they have started causing headaches. It has begun to affect my vision. even with new glasses there are some days I just feel like I can't see good. 

    • Cowgirl918
      Cowgirl918 marianb

      Posted

      If I miss any of my eye drops or forget my sunglasses I have eye pain. My left eye is worse than my right and the left cornea had the most damage. The lesions have healed but I still have the pain if I am not careful. My younger Sister died unexpectedly last week and all the tears have left me with dry eyes and a red face. THanks goodness for the Eucerin and Lavendar face cream.
    • estelle44124
      estelle44124 Cowgirl918

      Posted

      Sorry about your breavement. I just lost a friend of 52 years from an unexpected, unusual liver disease which took her in just 5 months. I sometimes get an exceptionally sharp pain in my eye. It makes me cry out but resolves in a few seconds. It seems to be when I look at something without actually turning my head.

      As for lesions: I had them umpteen years ago, offered laser treatment which I declined. AT NO TIME WAS SS MENTIONED. Grrrr

    • Cowgirl918
      Cowgirl918 estelle44124

      Posted

      It is frustrating that it takes so long. And the doctors dont speak to each other so it is up to us to connect the dots. Thats really difficult when you have never hear of SS! I still have those random shooting pains in my eyes too. They usually resolve within a few minutes. Did I read that the eye disease also progresses?
  • Tumtum1963
    Tumtum1963 marianb

    Posted

    I think Estelle's suggestion is a good one. But also I think you should speak to your GP about getting onto a BP med perhaps? Mine was high so often that a hospital doctor requested my old gp put me on BP meds. He refused saying it was just steroids and white coat Syndrome. I came off steroids but my BP continued to be borderline high (average 145/95 say). Finally I asked new GP to put me on BP meds and she agreed, with support of new rheumy. Briefly my GFR dropped below normal but it went back up again so I stopped worrying.

    Later I was rediagnosed from RA to primary Sjögren's and am now on trial of Mycophenolate. I'm not sure if it's helping or not - been on it for ten weeks now. No improvement with the neuropathic/ toothache pain yet but some marked improvement with my off kilter balance. I wonder if this is because it's helped lower my BP a bit - hasn't been checked since I started it.

    If you do have early stage kidney involvement then it might be a good drug for you to try out because it's often used to treat kidney disease.

    Re headaches - this could be down to photosensitity as Estelle suggests but it is also always listed as a Fibro symptom. I have recently bought prescription varifocal shades and they make a huge difference to me. Also been diagnosed with Meibomian Gland Disease and started using heated eye pads and massing around eyes as directed. Also seems to be helping.

  • amkoffee
    amkoffee marianb

    Posted

    I don't know what you take the prednisone for but I will tell you that I take prednisone for something called PMR and that requires a constant tapering. So knowledge of how to taper prednisone is very important. If you lower your dose of prednisone too much too quickly it can cause headaches. However I would suspect the most likely cause of your headaches is your blood pressure.

    • marianb
      marianb amkoffee

      Posted

      I learned the hard way about tapering off of prednisone. Made my own choice years ago to stop it thinking maybe I coukd do without it. Wrong!  It landed me in the hospital. My RA told me I would have to take it for the rest of my life since my adrenal glands no longer make cortisol. The BP BP may very well be the culprit. I'll start taking it twice a day to see if it continues to be high. Thanks for responding!

    • marianb
      marianb amkoffee

      Posted

      I'm going to research the varifocal shades. Never heard of them. I'll do anything that helps!  My BP just keeps fluctuating so I guess I'll just keeping taking it and keeping a record. Thanks

  • jane75220
    jane75220 marianb

    Posted

    Hi

    ​I was wondering if the dr had done any tests for anaemia and thyroid disorders?

  • Cowgirl918
    Cowgirl918 marianb

    Posted

    I only resently began to experience headaches. I assumed it was my eyes and possibly inflammation or food sensitivites. I can't tolerate any chemicals such as cleaners, bug spray etc. I use Theraputic Grade Essential oils in a diffuser. I also rely on quiet and a heating pad. Stress can bring on a big one! Last but not least I found that the muscle relaxers prescribed for my back will alleviate the shoulder and neck tension. Good luck. I feel your pain>

    • Cowgirl918
      Cowgirl918 jane75220

      Posted

      I dont take pain killers. I do take muscle relaxers as prescribed when very sore and I use heat every day. Heating pad or therapeutic oils both help. The muscle relaxers I use are the same ones used for back issues such as Robaxin. Honestly I do better with the heat and oil most of the time.
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