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dull Headache behind right ear

Posted , 11 users are following.

megangrammy
megangrammy

The sudden onset of pain in right shoulder has subsided with increase of Pred. I was at 1mg and had to go up to 5mg then my dr had me go to 10mg for 2 days and back to 5mg. I see her on Wed. I am so bummed I had to increase. I so want off this drug. Anyway the pain has moved up my neck to a dull headache behind my right ear. It is continuous making me feel nauseous. I have lost 8lbs. I am having a hard time sleeping as I cannot get my neck in a comfortable position. My neck feels so strained. It is only on my right side. This is going on 2 weeks. Anyone else had pain like this? 

0 likes, 9 replies

9 Replies

  • BettyE
    BettyE megangrammy

    Posted

    Text books say that PMR pain is bi-lateral but with this disease nothing is set in stone. I did experience neck pain while I had PMR but as I also had and have OA it could have been that. 

    Don't beat yourself up about having to increase; you're not making up your symptoms and if you want a half way ok life then pred. is, for the time being, your only option. You are in a happier position than Debbie Hurts whose doctor is saying she will stop prescribing pred. if she doesn't follow the regime that she( the doctor ) has dictated.

    Sorry; re-reading this it sounds a bit bossy. I don't mean to be. Do hope you feel more comfortable soon.

    PS I found that the exercises on the arthritis research council website helped my neck a lot and my GP was so impressed he got me to demonstrate them!  Would you like me to find the link and PM them to you?

     

    • megangrammy
      megangrammy BettyE

      Posted

      Thanks BettyE

      I am heading to the doctor tomorrow. The unknown is always the most worrisome for me. I was feeling so good and then just woke up 2 weeks ago in pain. I would love the link to your exercises. I normally do Pilates and ski so I have been missing my exercise 

    • BettyE
      BettyE megangrammy

      Posted

      Did you receive them? I sent them yesterday. Click on little envelope next to your name and they should come up.
  • EileenH
    EileenH megangrammy

    Posted

    If you have PMR and you have had an increase in symptoms then it is flaring - and the addition of ear pain could well mean that there an element of GCA in there. Ears can be involved in GCA and in GCA the problem may be only one-sided.

    "I so want off this drug." - almost everyone does. But it is the only thing that allows you a decent quality of life and - if you may have GCA, protecting your sight. Learning to come to terms with the illness itself and pred really is an important part of life with PMR/GCA. I have been on pred for nearly 9 years, I have had PMR for 14 years. The first five years were pretty hellish - pred gave me my life back and I live well with both PMR and pred. 

    Yes, pred has some downsides but when you know how almost all can be improved and lived with. What do you dislike so much? I'm sure people will have suggestions to help.

    • megangrammy
      megangrammy EileenH

      Posted

      Hi EileenH

      I know I just never think it is a flare. I always assume I hurt myself in Pilates or slept wrong etc. then it gets worse and my brain says “remember this is that Pmr pain.” I love Prednisone. It has saved me from pain. I can’t imagine life without it. I would be bedridden. I just am afraid of the side effects. I guess it was just so hard to taper down to 1mg and to get my body to make the cortisol again. It feels like a step backward. I go to the dr tomorrow . Now I just want to know what is going on. Thanks for your support. Megangrammy

    • EileenH
      EileenH megangrammy

      Posted

      You are at well below 10mg - at these levels the side effects are minimal. Here is the study that shows it:

      https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

      There are two aspects to the rest of the taper - as well as the return of adrenal function, you haven't been cured of PMR and you need the right amount of pred to manage the inflammation or - if you are on too little - the inflammation will drip drip drip into the bucket and eventually overflow . Then you have a flare on your hands and you are back to the beginning. In the end you take more pred than if you had been aware and resisted the desperation to reduce below a level you know is OK. 

      Your body has to produce top-up amounts of cortisol long before you get to 1mg - from about 5mg it is being prodded to do something. You don't have to stop altogether to get to that stage.

  • Royall
    Royall megangrammy

    Posted

    Hello there. My polymyalgia started in August 2017 with a pain in my neck that at times enveloped my head, the pain was central at the back of my neck and gradually I started to get the stiffness in my hips and pain in my legs and was diagnosed in September 2017. Hope that This is of some help to you. And hope that you get your pain sorted out soon 
  • karenjaninaz
    karenjaninaz megangrammy

    Posted

    I do not automatically up pred with assorted pains. If a small dose of paracetamol takes care of it and the pain goes away in a few days not flare. I have had headaches which I get from  Sulfates in food and msg.- usually snuck into restaurant/processed foods.

    My flare felt like ache all over and fluish without the flu.m- like the initial PMR onset.

    • megangrammy
      megangrammy karenjaninaz

      Posted

      I know the flares come on so unexpected. I think mine are brought on by stress. Thanks for the advice and sharing. Best, Megangrammy
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