[kw66]

Hi all,

My story: I've had constant headaches (just the severity varies) and tinnitus for about a year. It's affected my work terribly (self-employed software developer). My GP had me on amitriptyline but it didn't help and made me drowsy. A neurologist diagnosed ON and put me on topiramate but that also hasn't helped. A few days ago I had the steroid injection to the left side, which is the only tender side. The GP had never done the injection before but I don't know if that had any bearing on this.

I immediately felt a welling up and tension throughout my face, jaw, eyes, forehead, throat, neck, shoulders. I felt nauseous and dizzy, and they helped me to the bed. I got spasms and tingling throughout my upper body, down my arms, back, and partly down my legs. My spine and especially my lower back was in pain. I felt flushed, sweaty, yet soon became cold and shivered and shook uncontrollably, so much so that they could no longer monitor my heart rate and BP for a while. They were about to send me off to ER but were also on the phone to the neurologist who wanted the GP just to keep monitoring a while longer. My temperature rose, my heart rate rose, my BP fell. After a period on oxygen things improved, and they monitored me for 4 hours before someone came to drive me home (I was in no state to drive).

That was 5 days ago. I've been shut inside mostly in bed since then with the curtains drawn, lights off, and wearing sunglasses. My eyes hurt like hell and are super-sensitive to light now, although slowly improving. My vision was very cloudy for the first 2 days, then cleared, but my focus is all way out. I had 3 pairs of prescription glasses of varying ages and types: progressive, occupational and single vision, with the latter being only 3 months old and optimally designed for the position of my computer screen (to try and help with my headaches). I couldn't see a thing with any of them after the first couple of days so went to get an eye test. The optometrist said the steroid had most likely permanently altered the stiffness of the eye and the ability to focus and I would need new glasses. I was a bit sceptical about new spectacles so I got a $2 disposable pair just so I could use my phone again.

Now after 5 days, my eyes aren't as sore and weepy, and not so light-sensitive. I also think the focusing has improved and I started trying my old glasses again, so maybe the effects from the steroid is not permanent. It did nothing for my headaches anyway. The steroid was depo-medrol.

I'm seeing the neurologist again today for a debrief, and figure out what to do next about my eyes most importantly, then maybe a plan B for the headaches.

Has anyone else had reactions like this?

[Carebear89]

Originally Posted by kw66

Hi all,

My story: I've had constant headaches (just the severity varies) and tinnitus for about a year. It's affected my work terribly (self-employed software developer). My GP had me on amitriptyline but it didn't help and made me drowsy. A neurologist diagnosed ON and put me on topiramate but that also hasn't helped. A few days ago I had the steroid injection to the left side, which is the only tender side. The GP had never done the injection before but I don't know if that had any bearing on this.

I immediately felt a welling up and tension throughout my face, jaw, eyes, forehead, throat, neck, shoulders. I felt nauseous and dizzy, and they helped me to the bed. I got spasms and tingling throughout my upper body, down my arms, back, and partly down my legs. My spine and especially my lower back was in pain. I felt flushed, sweaty, yet soon became cold and shivered and shook uncontrollably, so much so that they could no longer monitor my heart rate and BP for a while. They were about to send me off to ER but were also on the phone to the neurologist who wanted the GP just to keep monitoring a while longer. My temperature rose, my heart rate rose, my BP fell. After a period on oxygen things improved, and they monitored me for 4 hours before someone came to drive me home (I was in no state to drive).

That was 5 days ago. I've been shut inside mostly in bed since then with the curtains drawn, lights off, and wearing sunglasses. My eyes hurt like hell and are super-sensitive to light now, although slowly improving. My vision was very cloudy for the first 2 days, then cleared, but my focus is all way out. I had 3 pairs of prescription glasses of varying ages and types: progressive, occupational and single vision, with the latter being only 3 months old and optimally designed for the position of my computer screen (to try and help with my headaches). I couldn't see a thing with any of them after the first couple of days so went to get an eye test. The optometrist said the steroid had most likely permanently altered the stiffness of the eye and the ability to focus and I would need new glasses. I was a bit sceptical about new spectacles so I got a $2 disposable pair just so I could use my phone again.

Now after 5 days, my eyes aren't as sore and weepy, and not so light-sensitive. I also think the focusing has improved and I started trying my old glasses again, so maybe the effects from the steroid is not permanent. It did nothing for my headaches anyway. The steroid was depo-medrol.

I'm seeing the neurologist again today for a debrief, and figure out what to do next about my eyes most importantly, then maybe a plan B for the headaches.

Has anyone else had reactions like this?

I would say that certainly could have been an allergic reaction. Glad to hear you are going to the doctor!!! If this injection bothered you, other injections with larger amounts of steroids could present in an even worse way!

[kw66]

Originally Posted by Carebear89

I would say that certainly could have been an allergic reaction. Glad to hear you are going to the doctor!!! If this injection bothered you, other injections with larger amounts of steroids could present in an even worse way!

The neurologist can't explain it but we're obviously not going to be doing the injections again. He's going to continue on the list of meds. Next is Propranolol starting today. And a CT scan next week.

My eyes have improved a lot yesterday and today, so the optometrist was wrong, and fortunately I didn't spend money on new glasses.

[Carebear89]

Originally Posted by kw66

The neurologist can't explain it but we're obviously not going to be doing the injections again. He's going to continue on the list of meds. Next is Propranolol starting today. And a CT scan next week.

My eyes have improved a lot yesterday and today, so the optometrist was wrong, and fortunately I didn't spend money on new glasses.

That's good to hear. Propranolol did help me a little bit with preventing the most intense of my headaches. Given that most of the other meds didn't help at all, I consider this a good one. Just a hint -the extended release formula of Propranolol can be more expensive than the regular formula depending on your insurance. If you notice that the medication is expensive, you might be able to have it written as Propranolol SA instead of Propranolol ER. It makes little to no difference in actually preventing these episodes. There are certainly a lot of alternatives to steroid injections. Good luck in finding what works for you, kw66!!!