This personal story was originally posted to the Quinolone Adverse Reaction Forum. If you are a victim of a quinolone antibiotic and need support or advice then please visit the Quinolone Adverse Reaction Forum (http://groups.yahoo.com/group/quinolones/).
 

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Cipro and Levaquin Posted on 19 January 2004
I was floxed in July 2003. My absolute worst month overall was in August, with the head-pressure, especially, being constant and horrible. The head-pressure comes with a nasty feeling of "fullness" in the ears. For me, the tinnitus did not begin until late September. It has not abated since, but it does seem to go up and down at times. I was tested in November for hearing loss, and they couldn't detect any. Plus they saw nothing abnormal in the physiology of my ears. From the beginning of the floxing (indeed while I was still on the cipro and then levaquin) I have had pain and sensitivity to both light and sound. The sensitivity to light has improved somewhat (I no longer yell out when the TV jumps from a dark to a bright scene, for instance), but the sensitivity to sound has not: I still find it excrutiating when either I or someone else in the household is unloading the dishwasher, for instance, and stacking dishes. The tinnitus hit me after about 6-8 weeks of this pain and sensitivity to sound. But again, neither the pain nor the tinnitus has improved so far (I'm almost six months out at this point). As for my other symptoms, while some have gone away (the head- pressure, the "hot flashes", the extreme bouts of heart palpitation), others have stayed or worsened: the soles of my feet are so hypersensitive that I hobble around kind of like a 19th-century chinese woman with bound feet; both ankles/achilles tendon/bottom of my heels are quite painful (no ruptures yet, though), as are the knees and hips. One of the worst things is how my whole back, not just the lower back but really the whole region from about the kidneys up to the shoulderblades, is almost always really sore as if I have been beaten. The peripheral neuropathies wax and wane in both hands and both feet. When they are at their worst, the neuropathies creep up my arms and legs as well. Thankfully, only sensory neuropathies remain; all the motor neuropathies (spasms) have gone away except for my left eyelid. Beyond that, I wake up every morning with flashing multicolored spots moving so fast it makes me dizzy, but they pass relatively quickly. (The same thing happens if I look at something that is too bright -- esp. the sky.) Since the tests found no evidence of hearing-loss, and since the tinnitus does not appear to be progressive, I am inclined to suspect that the tinnitus, like the spots I see sometimes, like the pain from bright light and sound, are all symptoms of central nervous system hyperstimulation. It is well-known that fluoroquinolones cause CNS stimulation (that is why the bottles come with warnings to avoid NSAIDs at the same time, since they can interact to cause severe hyperstimulation: to the point of seizures). Some have suggested that the quinolones can bind with the brain's GABA receptors for months or years: and apparently GABA is a "calming" substance for the brain. I can only hope that over time the quinolones will leach out of the brain and my brain-chemistry will settle back down and I'll lose the tinnitus and other CNS symptoms. One thing: a person's emotional reaction to tinnitus can be worse than the tinnitus itself. It sucks, but try not to focus on it. For me, I have to sleep now with a fan going to drown it out. The hardest thing for me is that when I move to lie on my side, my ear of course is on the pillow and is therefore not protected by the sound of the fan; this makes it hard to sleep since it sounds like I have my ear to a receiver while a fax machine is going. I pretty much have to go to sleep on my back or I'll keep getting woken up by the tinnitus. But I try not to focus on it or freak out too much. Ativan helps.

Originally posted on the Quinolone Adverse Reaction Forum at http://groups.yahoo.com/group/quinolones/message/17470