I take Lyrica for the pain that the plate creates across my head. It helps. There is the odd time it doesn’t work. I do balance exercises to become more stabilized. I also take tramadol for my headaches when they are severe. I take Tylenol when I wake up and before I go to bed…just for precaution because if I wait and start moving around the headache starts and is hard to control when it does that.
Just a word of caution about acetaminophen (Tylenol) make sure your PCP is monitoring your liver enzymes. I’ve a bit of experience with it building up in my liver decades ago. It was my first experience waking up in ICU.
1 Like
Good Morning,
Thank you @Moltroub for the word of caution. My doctor does monthly bloodwork to check my blood, kidneys, liver and thyroid. Since I had Cryptococcus Gaetti, I get tests done all the time.
1 Like
Had to look that one up, it sounds painful.
@Moltroub It’s not painful but in saying that it was very hard to breathe because it is spores from trees that can invade your lungs…if you are immunocompromised, you have a higher risk of breathing them in. I couldn’t breathe, so I went to emergency, and they did x-rays which showed my lungs were full of these spores. The x-ray looked like a Christmas tree all lit up. the spores caused a blood infection, and I was on a toxic medication like chemo for 2 weeks straight. Each lung had six cups of fluid in them. The doctor drained my lungs. I hadn’t eaten for three months because of the medication. I was in the hospital for a month, and it took me six months of physio to actually be able to move and get stronger. Beig this sick trigger melanoma. They caught that in time, but it has been a struggle. the aneurysm was caused by the medication I was taking for the spores. The first neurologist was supposed to keep track of it but didn’t. Now I advocate for myself because I know my body better than anyone. I noticed yesterday there is swelling on the side of where my plate under the eye. Is that normal after 10 or 11 months? I don’t know anymore…I am still going to phone the doctor today.
You’re a strong woman! The worse I had with my lungs was when I had pleurisy and it hurt like the dickens to breathe. Had to stay in the recliner for a month or so just to get shallow breaths. Fortunately it was a big recliner because the 8lb cat and the 60 lb Labrador wanted to be in it with me😂
I did not know that certain meds can cause aneurysms! I was aware that the unknown, head injuries and family genetics can play a huge roll, but not meds. I wonder if it’s on the rare side effects warning?
It’s a very good thing you’ve become your own advocate! I think without that skill we get dropped into the cracks. We all need to learn it.
I haven’t had a craniotomy and I hope folks who have will respond with their experience. I believe Merl @ModSupport has had a few…what did your doctor say?
Hey Suszanne,
Moltroub is correct with regard to me having a craniotomy. I also have to agree with her in regard to acetaminophen, it can be nasty stuff for the liver. I use acetaminophen/codiene as my primary pain management tool and I have regular blood tests, just to be sure I’m not pushing my limits.
I was trialled on Lyrica, but for me, it’s not good. I had an awful reaction to it. Sent me into a downward spiral. For some people it’s a ‘wonder drug’, just not for me. I think that’s the same for many meds. Some people (including dr’s) will swear a certain med can have fantastic results, and for some people they may work really well, but this is not a ‘One-size-fits-all’ scenario. Although 'Patient ‘A’ and Patient ‘B’ may have the same symptoms, that does not mean they will have the same result from the same treatment. If it works for you… well, that’s all that matters. I have given all sorts of professed ‘wonder drugs’ a trial, but I still haven’t found my ‘key’.
I have a couple of metal plates holding my skull together. Both the skin and the hair over the craniotomy scars and plates has become much thinner, this has made the humps and holes much more prominent. I wear a baseball cap to hide it all because it looks like someone’s taken a baseball bat to my skull. At times, differing headaches seem to radiate from that region and I try to manage the headaches when I can feel them coming. I’ve found if I use medications regularly, I can get ‘phantom pains’, so I only use it when I need it. Tramadol is an opiate and my body likes that stuff too much, so I try to avoid it. I have some here, but if I need Tramadol, I also need medical attention too.
I think we all have to find a level where we can manage. I try to keep my med use down so that when things get chronic, I’ve got a gun big enough to manage it. I’ve been in a position where I want to rip my eyeballs out with a teaspoon, the pain was just SO intense, I was already using high dose opiates and the pain was still bursting through. It was bloody awful. Arriving at hospital, they did a scan and knocked me out themselves. Now, I keep a close eye on what I’m taking and keep it down.
Merl from the Modsupport Team
1 Like
I am on Lyrica and it is helping with the sharp pains the plate causes across my head. The left side of my face still swells around the temple and the lower eye. Not a big swelling but enough to see it and feel it with my eyeglasses. I rarely use the tramadol unless the headache and pain are unbearable. then I have the tramadol and go to bed and sleep. I try to manage the headaches before they go rampid but sometimes I don’t catch it.
2 Likes