1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Paranoid and GCA

Posted , 7 users are following.

paula63201
paula63201

Christmas in my house is pure chaos starting early in December, due to a large family that includes 9 grandchildren. I shop, cook, purchase gifts for them. I also just retired, so have been dealing with all kinds of paperwork and annoying one step forward 2 steps back with insurance, etc. The last of the family left this past Sunday and I was just relaxing into my post Christmas calm (I was tired, but felt pretty good, despite it), when I got a phony phone call from what purported to be my health insurance company. They got some information from me (my health insurance number), before I realized that I was being scammed. I was extremely upset. There ensued a 2 1/2 hour phone call with my real insurance company to discuss this issue and also to get me onto their website, from which I was locked out for some strange reason. As I was talking to the IT person, I developed a migraine 'aura.' I used to get ocular migraines, but have not had an episode in 10 years. This aura (both eyes involved) was no different from those I used to have and it eventually faded. Differently from other times, it left me with a headache above the eyes and that now, 24 hours later, is still with me. I took Tylenol (Paracetamol) and it helped a little. The back of my neck is sore. Otherwise, I have not other 'head symptoms.' I am on 4 mg Prednisone for PMR.

So, is it just the stupid migraine or is it GCA? My vision is normal. 

Paula-Paranoid in Northern Virginia.

1 like, 18 replies

18 Replies

Next
  • Nefret
    Nefret paula63201

    Posted

    Very odd about the migraine aura.  I used to get to get warning auras prior to a migraine, but I have just realised I haven't had a migraine since I've been on steroids - I must make a note of this to pass on to my rheumy - 15 years without one although I didn't get them very often.

    Could yours have been caused by something as simple as stress and you now have a tension headache?  I'd definitely be stressed with all that you cope with at Christmas.

    • paula63201
      paula63201 Nefret

      Posted

      Hi Nefret, yes. It is possible. And when I said I was 'extremely upset' about being scammed, I should have said, instead, that I was so furious that I flung the phone across the room; it hit the sofa, so did not break. 
    • constance.de
      constance.de paula63201

      Posted

      Sensible!  It's always safer throwing onto something soft!😃

      You certainly had a busy, busy Christmas.  Slow down now - take deep breaths and RELAX, that should, hopefully, help to clear your headache.

  • audrey80537
    audrey80537 paula63201

    Posted

    Hi Paula,

    i have also gotten the aura and sometimes in both eyes.  I have also a couple of times lost my speach during an episode at which times I was hospitalized for tests which came out nagative.  Sometimes I get headaches after them and most times not.  I had one of those headaches that lasted weeks but most a couple of days.  Started taking a baby aspirin at night about a year ago and haven't had any since.  Most times the aura lasted a half hour and that was it.

    i also worry about the GCA and in fact just this past two days it was a concern because of a jaw pain which has gone away.  

    I believe stress and/or bright lights bring on my auras.  

    Sounds to me like an aura but if it continues for a few days I'd check it out.

    problem is here in the USA most doctors don't know any more than I do.

    • paula63201
      paula63201 audrey80537

      Posted

      Hi Audrey,

      Thanks for your response. My aura lasted about 1/2 an hour (as usual). Generally, I would get a dull headache after it faded with a lot of light sensitivity for a few hours. This time, I have pain over my eyes that has gone on for 24 hours.

      How long should I wait before I have it checked out.

      If it is GCA, will I go blind in the next few days?

      I have no clue how fast GCA develops. I also feel so stupid and paranoid asking these questions.

    • JanSP
      JanSP paula63201

      Posted

      I used to have migraines with an aura before the pain started. I got rid of them about 35 years ago when I divorced my first husband. I am now remarried for 24 years in a happily ever after union. He's such an amazing help with my long list of health problems during these last six years. It sounds to me like you are having migraines but of course I'm no expert so go have it checked out and reduce your stress level. I started having horrible head and neck pain (worse than the migraines) 3 days after I had an infusion of Reclast, 6 years ago to make my bones stronger. This was after Forteo and some other drugs after I broke my hip while ice skating some years before. My GCA  jaw pain didn't come till later and it happens when chewing. I think I went 3 weeks before the diagnosis. I kept going back to the doctor who gave me the Reclast and I was told it was a very strange side effect. It was a PA who had had a patient with GCA who went blind who figured it out. He was surprised the doctor didn't order a SED rate. When it came back at #96 I was given 60mg of pred and scheduled for a biopsy the next morning. The biopsy on an artery near the surface of on one side of my head in the temporal area is invisable just behind the hairline. I asked the doc if he could do one on the other side and perform a facelift whilehe was at it. Ha, ha. My biopsy of course was positive. When I have a GCA headache I don't have an aura, nausea or the light sensitivity that I used to have with migraines. Remember, symptoms are not the same for everyone. I don't have any of the scalp tenderness I've read about. My pain is not always in the same place in my head but it feels different than a "regular" headache. I've gone to the emergency room 4 times over the last 6 years and each time it was GCA back again.

      I'd be happy to answer any questions you have. Wishing you a happy and healthier New Year.

      3

    • audrey80537
      audrey80537 JanSP

      Posted

      Hi Jan,

      When you had the jaw pain were you already on prednizone at the time. I ask because I had a rheumy who told me I wouldn't get GCA if I was.

      also, did the jaw pain only hurt when you opened your mouth wide.  Also. when I had it my bite felt out of line.

      Like Paula, I worry about GCA all the time and I don't ever want to have a biopsy.  I heard that if you have one and its negative you can't have another.

      this whole thing can be rather nerve racking and I'm so tired of worrying.

       

    • paula63201
      paula63201 JanSP

      Posted

      Hi Jan,

      Thank you for your detailed response. I am due for a SED rate next week in preparation for my regular every 2 month rheumy check up, so after the bloodwork, I shall see what is what.

      Paula

    • EileenH
      EileenH audrey80537

      Posted

      When they do the biopsy they remove a length of it - you don't need it so it doesn't really matter. But obviously - you can't remove it twice.

      There is no point in worrying about something that may never happen - while 1 in 6 patients with PMR do go on to develop GCA, that means that 5 out of 6 DON'T!

    • JanSP
      JanSP audrey80537

      Posted

      Yes,  I was on 60mg of pred (or maybe tapered down to 40) when the jaw pain started. Just regular eating caused it or keeping it opened for the dentist.  More like an ache than sharp pain. For awhile I was eating soft food - yogurt, eggs, ice cream, etc. The ice cream is probably the culprit that caused my rediculous weight gain this and last flare. I didn't feel my mouth out of line. I thought I would be running to the doc or the ER all the time too. Somehow the headaches are different even though they are not in the same place each time. I feel more of them going down through the top of my head farther to the back but they have been on the sides too, near the temporal areas. I can't take alot of pain killers because of my liver autoimmune. 
  • eddylynn36538
    eddylynn36538 paula63201

    Posted

    I too get annoying scam calls. I have now blocked all phone calls that I don't recognize that come in from outside my province. As well as all 800 numbers. If it's one I'm not sure of I let it go to answering machine so if it's important they leave a message.  

    When you can't move very fast to get phone it's more irritating. I understand your toss. Hope it's now resolved. 

  • audrey80537
    audrey80537 paula63201

    Posted

    Gosh Paula you sound just like me and I can understand your concern.

    are you on prednizone? 

    The he headaches I have gotten after an aura were either over my right eye or the top of my head right over my eye.  It was just that one spot and did not spread out.  It felt like a spike going through my head.  

    Perhaps someone who has GCA could be more helpful with the symptoms.

    There must be something more significant than a headache or every time we had one we'd be running to the doctor.

    if it were me and I noticed a change in vision I'd see a doctor or a headache that was really bad - like one where you can't function.  Otherwise I'd try to relax and take a  Xanax or something of that order if you have any.  I also take Tramadol for pain but not on a daily basis.

    let me know how you are doing.

    • paula63201
      paula63201 audrey80537

      Posted

      Hi Audrey and Constance

      4 mgs of Prednisone at this time. 

      I'll take your advice of relaxing and I'll dig around the house for some choice drugs!!

      Thanks!

       

  • EileenH
    EileenH paula63201

    Posted

    Everyone is different in their presentation of GCA so it is always difficult to tell.

    The "must have" headache? Is the presenting symptom in under 20% of patients and only ever appears in about half of patients! When it is there most patients describe it as the "headache from hell".

    Usually you tend to feel flu-ey and unwell. All the other suggestive symptoms appear in similar percentages of patients to the headache. There will mostly be more than one but there are some people who have loss of vision with no warning. However - in general there are warning signs for about a week. About 1 in 5 will not have raised ESR/CRP but that is something to look for.

    It is, however, possible to have GCA without it ever going anywhere near your eyes so there are symptoms in other parts of the body.

    I used to find any phone discussions about anything - never mind a scam stealing your insurance number - really upset me and by the end I was a frazzled wreck with a mega headache. I would say that if it doesn't fade fairly quickly a visit to the doctor and maybe seeing your optician would be in order - I'm assuming that they can examine the back of your eyes? It is very frustrating here in Italy - all an optician can do here is an eye test for new specs. Pressures or a retinal exam is beyond them and requires a hospital visit - which has to be booked in advance so you are forced to go to A&E and it really didn't help the one time I tried it as the one and only rheumy was at the other hospital! 

    • paula63201
      paula63201 EileenH

      Posted

      Hi Eileen,

      Thank you for your helpful comments and advice! 

       I can see an optometrist any time, except Friday (New Years Day) and they have a device that photographs the retina and one that measures eye pressure. Otherwise, I can get in to see rheumy or other doc sometime early next week.

      How frustrating for you that optometrists are just measurers and don't take a look at the eye.

      The headache is there, but not one 'from hell.' More like sort of sitting there. No flu symptoms or achiness.

      Happy New Year!

      Paula

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.