Having “half a head” - unsettling feeling with GCA and sight loss

[TheSmartestGiant70]

“Half a head” - feeling loss of the sensation of half the head - with GCA and sight loss - has anyone experienced this? My mother is currently experiencing this and feels incredibly ble stressed that it nerve damage.

[Devoid]

Hi I have numb feeling in side of face with gca , can actually feel pinch etc but just odd feeling, helped at first with steroids but as I m not particularly well controlled it does return, definitely helps to rest and reduce stress I found I need to lie flat, not enough just to sit down

[TheSmartestGiant70 in reply to Devoid]

Thank you for replying - how long have you had that feeling? Did it improve? Have you been told why?

[Devoid in reply to TheSmartestGiant70]

I still get it, not all the time but off and on , I have experienced extreme swelling with the steroids so I think every thing is under more pressure. I have had an ecg and bloods which I think gave some reassurance as they were normal. Is your mother seeing GP and consultant?? I also have contact number for rheumatology nurse and they can be very good for the days when none of this illness makes sense.

[Yellowbluebell]

I dont have gca but with any new symptoms concerning vision and strange feelings in the head i would reccomend visiting a&e or emergency room.YBB

[DorsetLady PMRGCAuk volunteer]

Is the pain the same side as the “lost” eye? And does she have it all the time, or does it vary during the day?

I guess she’s been diagnosed for about 3 weeks or so now, and what dose is she now on? I know she started at 60mg.

If she’s been reduced too quickly maybe not all inflammation has been mopped up. Is she being monitored by GP or hospital and are her blood markers being tested?

For example I was on 80mg for 2 weeks, and then another 8 weeks at 60mg. If I recall it took me 2-3 weeks to get rid of all head pain.

[Blearyeyed]

It's not necessarily Nerve Damage but the numbness can happen because of the way your nerves are reacting to the change in Pain.

I often get that feeling that part of my head , or other parts of the body , don't feel like they are there when I touch them , sometimes it because of the nerves reducing the pain response because the brain is " sensing" the Pain is being treated and it reduces the Nerve Pain response because it knows that you do not need to be told you are suffering from Pain or Inflammation in the same way.

Sometimes it can be short term inefficient response of your nerves because of having long term pain .

Is your Mother on any Nerve Pain Medication or Antidepressants , Nerve relaxants for other conditions too?

A side effect of these is often that numbness in the places you usually get nerve pain because these drugs suppress the Nerve response.

It's early days so it could just adjust as her dose decreases and the Steroids stop masking the feeling in the nerves.

But as it is the beginning of treatment , if any new symptoms cause Stress or are very different it's really important to discuss it with your GP but also your Specialist so that they can check that there aren't any other Health Issues and they can put your mind at rest that it's " Normal"

[Hellyowl]

If she is in her first few weeks of GCA she should be monitored. My GP rang me every day for a week then saw me once a week for a month. Also, if you have already been to Rheumy there should be a help line for queries. Ask the questions. I didn't have any numbness when I had GCA. The pain went quickly. I was back at work after 2 days. Worrying won't help her recover

[Hidden]

Hello thesmartestgiant70,

When I was diagnosed with PMR and GCA back in March this year I had a numb feeling over the top of half of my head. It did extend a little further than half of my head, but not by much. It started at my left ear, up through my left temple and then it widened out to extend over the left side of my head. It didn’t go down the back part of my head.

Also the numbness went down from my left ear and extended to the left side of my jaw, although once again, it did extend a little bit past the halfway point of my jaw. The numbness in this area extended to my lips and my tongue. It didn’t prevent me from moving my lips or tongue. It’s just that the whole area I have described felt numb.

I also had a numbness / pain that seemed to go into and around my left eye. I had very blurred vision. I never list the sight in my eye, but I was frightened that I would.

I can fully relate to your Mother’s description of having half a head. I could easily have described my head symptoms like that.

I was put on 60mgs prednisolone initially which reduced my symptoms overnight. I am down to 8mgs now.

I too was very frightened and worried.

I would have no qualms about going back to the GP or Rheumatology if you have any worries about your Mother’s condition. My GP told me that if I had any worries, particularly about my eye, that I should make an emergency appointment with them. Similarly, the eye consultant and the rheumatologist told me that if I ever had a return of symptoms particularly with the eye to either go to the eye Outpatients emergency section, or straight to Accident and Emergency.

It’s like my GP says, we have paid for the NHS, so we are entitled to use it..... so do.

I hope this is if some help and all the best to your Mother.

Linds

[Hidden in reply to Hidden]

I forgot to add that the Rheumatology Department (Bradford, West Yorkshire area) where I go has a telephone advice line... in the contact section at the bottom of the link. I have given you a link to this below, so you can see the sort of help that is available. I don’t know if a similar thing is available in your area.

bradfordhospitals.nhs.uk/rh...

[Yellowbluebell]

How is your mum? What did you decide to do about her sensations?xYBB

[TheSmartestGiant70]

So far she’s been to her GP to get referrals but they have no idea about what to do

[Hidden in reply to TheSmartestGiant70]

Aww...that's just SAD! So wrong! How's her attitude coming along? Is she eating well, getting out some for fresh air and movement?