I see a lot of people wanting to try out Minocycline, and of course, your dermatologist will tell you the typical side-effects - dizziness, sensitive to sunlight, etc.
But what really is unfortunate is that they don't typically warn you about the serious side effects, which, unfortunately for myself, I am currently experiencing.
In case you're wondering, I have moderate acne and have been on Minocycline in combination with Spironolactone for about a year. I also had some creams, but I only used them for spots and they're not important to my overall story anyway.
Symptoms and Time FrameAbout 2 months ago, maybe a little more, I began to experience severe headaches. They weren't constant, but it felt like I was getting them every day - right before I went to bed and right when I woke up. I thought maybe it was stress with it being finals week and I was just grinding my teeth at night. I shrugged it off for the time being. They went away, but started coming back a few weeks later. My mom thought it had to do with my teeth as well, so she bought me a mouth guard to wear at night. Unfortunately, it didn't help. The headaches eventually became constant.
About a month ago now, I started getting back pain. I thought maybe it was because I was sleeping over at a bunch of different houses so I was just uncomfortable with the bed situation, so again I ignored it. When I slept at my house, I still had the back pain and I was confused as to why it was still happening. My mom and I went out and bought a new pillow and mattress pad (my bed was hard as a rock anyhow), but as you can guess, the pain was still there.
At the same time, I had this weird ringing noise in my right ear. Not exactly ringing, I suppose, but I could definitely hear my heartbeat constantly in my ear. It made sleeping very difficult because all I could hear was this noise. It was awful.
I hadn't visited the doctor by this point in time. I thought all the symptoms were separate and didn't think much of anything.
Finally, I began to have vision problems not 3 weeks ago. I kept blacking out for anywhere from 1 to 10 seconds at a time whenever I stood up. Sometimes it would cover my entire vision to the point of not being able to see to just the outer edges. It was kind of like when you stand up too fast and you get that light-headed feeling, sometimes coupled with vision impairment? Yeah, like that.
I also felt disoriented at times and was having trouble thinking and spelling. I couldn't even spell "writing" and I'm 19 years old.
Doctors' Appointments & DiagnosisThe vision problems were the last straw, so I called up my family doctor. He saw me right away on Wednesday two weeks ago, although he couldn't conclude much. The only thing he noted along with my symptoms above was that my optic nerves were swollen. He recommended me to an ophthalmologist (eye doctor).
Nothing much different to say at the ophthalmologist I saw on Friday two weeks ago. He dilated my pupils and also recognized the optic nerve swelling. He told me to make a follow-up appointment in the coming weeks and I went home.
I got a call from my family doctor that night at home. He had been speaking with a neurologist about my symptoms and medications (obviously Minocycline was included in that list), and although it's hard to diagnose, they both decided that I had the following:
Idiomatic Intracranial Hypertension (IIH)/Pseudo Tumor Cerebri (PTC)http://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertensionWhat this is in a nutshell is a neurological disorder in which a patient experiences similar symptoms a person with a brain tumor would feel (hence "pseudo tumor"). All of my symptoms from above are what characterizes this disorder, along with nausea (although I never experienced this). It basically involves increased pressure in the brain from an increased produced of spinal fluids.
Papilledemahttp://en.wikipedia.org/wiki/PapilledemaThis is one of the most obvious physical symptoms of IIH/PTC. It entails swelling of the optic disc caused by increased brain pressure. So they go hand in hand.
Mind you, these are both very rare, which is why the doctors had a hard time deciding if I should be diagnosed or not. But all signs pointed directly to this. I took it upon myself earlier that week to research my symptoms and a lot of the articles I read pointed to IIH. It typically occurs in obese people (which I am not), but the articles all said that studies have found a link between
Minocycline and IIH. It's very rare that this happens, but it does all the same, which is why I wanted you guys to know about this. It's frightening knowing that a simple pill used to treat acne could lead to this. I'm not doing this to gain sympathy or anything. I thought I would go blind. I was truly scared for my life and I don't want anyone else to feel so lost or confused as I was.
If you want to know the personal hell I experienced because of this drug, please read on.
TreatmentsMRIAfter this phone call, I had an emergency MRI scheduled that Saturday night. This obviously involves no pain and I just had to sit in a small, enclosed space for an hour listening to sounds similar to a school fire alarm. Exciting, I know. But this was to confirm that I did not have a brain tumor and would be safe for me to have the next leg of my treatment...
Lumbar Puncture/Spinal Taphttp://en.wikipedia.org/wiki/Lumbar_punctureI had this last Monday and it is something I NEVER wish to experience in my life.
I won't go into details in case some people are squeamish/afraid of needles. Let's just say I was crying my eyes out during the entire procedure because I was frightened and the initial pain was terrible.
This was suppose to take out excess spinal fluid in my spine. This, in combination with another medication I was taking - Diamox - I should have begun to feel better in a few days time.
Blood PatchYou can look this up on google for the same reason as the spinal tap.
But I guess the spinal tap didn't heal properly and I had a CSI (spinal fluid) leak internally causing the same severe headaches I had prior, as well as nausea.
I had this this morning and like the spinal tap, I never want this again either. Maybe I'm just a wuss. But I feel loads better aside from a little back pain.
...
All in all, was all this worth nice skin? NO WAY. I'm sorry for the terribly long post, but there was a lot to say. I've been stuck in my house for 3 weeks trying to recoup all because of Minocycline's side effects and I still cannot believe all this was caused by that little pill. I want everyone to know that there are always risks in taking these sort of medications and you need to look out for yourselves and be careful.
Feel free to ask questions if you have any, by the way.
Not as rare as you may think! Please read momonamission blog and post.
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but at least ringing ears is the only symptom I'm having and not lots of headaches or dizziness.
