Head pain description with GCA

Hello all,

I just took 60 mg of prednisone and have noticed a slight difference in the head pain. If possible, I wanted to obtain an understanding of the typical head pain description associated with GCA so that I can monitor the mitigation of my symptoms and compare it to the experience of others. I also want to tell all of the doctors I've seen that these symptoms should not be overlooked as I now have infotmation from others also suffering with this condition. I want to make sure these doctors know to look for certain indicators/diagnostic signs to help patients based on the specific symptom descriptions. I realize that not everyone will have the same symptoms, but it would be helpful to get an idea of the symptom descriptions for future sufferers to get treated earlier. Could anyone please tell me if you have experienced any of the following head pain related symptoms:

1. Dull ache on affected side of head near temple and around ear. Dull ache worsens when bending over or tilting head or leaning body to affected side.

2. Dull ache develops into constriction-like sharp pain when temporal artery is touched or pressed on. This sharp pain lingers after touching artery and worsens when tilting head to affected side.

3. Scalp tenderness (typical symptom I know).

4. Head pain worsens when lying down.

5. Pressure in forehead and in upper front and back teeth

6. Pressure behind nose near top and bottom of septum that worsens when bending over.

7. Pain in head when talking, chewing too hard, opening mouth to wide, and singing.

8. Throbbing head when lying down, heart beat moves whole body and head, very annoying.

9. Swishing noise with heartbeat in ear when lying down (pulsatile tinnitus?)

10. Pain in temple is relieved when pressing on artery in front of ear and stopping blood flow to superficial temporal artery above ear and in temple region.

11. Hurts to wear glasses

Thanks,

Devin

[DorsetLady PMRGCAuk volunteer]

Hi Devin,

Before diagnosis had following - 3,5,7 & 11. Also pain from nape of neck up over top of head and down sides of face (vertically through the eyes) down to throat. Different from scalp tenderness.

Still had some pains, particularly jaw, throat for about 3 weeks - started on 80mg, reduced to 60mg after two weeks.

[cdenoncourt]

Hi Devin,

I responded earlier, but I don't see me reply, so I will try again. Points 1,3,4,8 and 9 were all part of my experiences. I have had GCA for 4 years, including 2 relapses.

[Suex2015]

Hi Devin, I am in the process of reducing my Preds was on 40 mg daily in October now on 30mgs for PMR then GCA. I have also experienced most of the symptoms you have listed in addition to that I am and have experienced numbness and tingling on both sides of my face also in my right arm and leg, and currently having lots of dizziness along with lack of ability to concentrate or focus, memory issues are also a problem at the moment.

[DorsetLady PMRGCAuk volunteer in reply to Suex2015]

Hi Sue,

Dizziness and lack of concentration can be attributed to both GCA and side effects of Pred. Doesn't help does it? Double Whammy.

[Joyful13]

Dear Devin,

I have experienced 4,7,8,9. I am currently on Prednisone 40mg reducing from the original 60mg. I had one flare up when tried to reduce to 30mg.. severe, explosive pain from top of my head, included pressure/pain in my forehead. This lasted for 7 days and was seen in the Emergency Room. I continue to have occasional temporal and frontal headaches. I've had lots of jaw pain, but it is much better now.

I wish you the best now that you are being treated. Hopefully, your pain will decrease overall. Take care.

[Bramwater]

Hi Devin,

I have been diagnosed with PMR/suspected GCA (biopsy negative). My head symptoms were a throbbing migraine type headache on the left with ear pain. I did not have a tender temporal artery at the time of starting Prednisone. I started on Prednisone 40 mg/day and after 3 days the headache/ear pain disappeared. Other head symptoms started at the time I started on Prednisone such as tingling in my neck & shoulder and jaw fatigue when chewing, dilated temporal arteries both sides of head but not tender initially. My body muscle pain took much longer to disappear - about 13 days. The pulsatile tinnitus you mention is something I have had in the past - my GP said it was because I had a lot of wax in my ears. The tingling and dilated temporal arteries were slower to go but seem to have disappeared now at day 43.