My problems started a little over two years ago when I suffered from temporary hearing loss in my left ear. I'm 53 years old and I already had noticed a slight hearing problem and planned to have my hearing tested. I went to an ENT who found I have hearing loss in both ears about the same, especially in the range of human speech. Hearing aids were recommended and I subsequently obtained a pair and use them on occasion to improve me ability to hear people. However, the temporary hearing loss situation remained unexplained. This loss was almost complete loss in my left ear that would be there when I woke up and last the rest of the day. My ENT suggested an MRI and that showed a fairly large arachnoid cyst (about 4 X 5 cm) in my left temporal lobe. My ENT suggested seeing a neurologist about the cyst, which I did, and which began my first real experience with the medical system.
That first neurologist was cautious about the possibility the cyst was causing problems and, even if it was, whether anything could be done about it. I had a few more episodes of hearing loss in that ear over the next month or so but I also began experiencing a variety of other symptoms. The hearing loss turned into a very bad case of tinnitus mainly in my left ear. (The person who mentioned standing in front of a DC10 comes to mind.) After two years, I'm still very frustrated with the noise. I listen to music all day long to keep from going nuts. I've always listened to music a lot so this is not a big change; however, I now have speakers in my pillow to help me to go to sleep at night (and back to sleep after waking up in the middle of the night). When this problem started and I looked into the topic online, I was not surprised to see that the suicide rate for people with tinnitus is much higher than the general population. Unfortunately, I've not found that any of the medical people I've seen think the noise is connected to the cyst. They just say it's a result of my hearing loss, even though that was diagnosed as a chronic condition that has gradually worsened over the years for both ears. I don't agree with that diagnosis.
Also, at the time of the temporary hearing loss/tinnitus, I started having severe headaches unlike any I had experienced in the past. I've always had fairly strong headaches but I've never considered them to be classified as migraines. Over the years, I found that Excedrin worked well to relieve the pain (neither aspirin or acetaminophen alone worked; neither did ibuprofen). These "new" headaches did not respond to Excedrin but did respond to ibuprofen--usually after an hour or so. I would be in excruciating pain at times and, during one episode, I realized for the first time why some people would rather not continue living rather than remain any longer in such pain.
Also, at the same time, I was experiencing some sensory disturbances. About eight years ago, I started experiencing some sensory changes in my right foot. It was never very severe, just a bit "fuzzy" or "tingly." I was concerned but it didn't progress and didn't seem to be connected to any other problems. I used to jog regularly and someone suggested it could be a carpal tunnel problem from too much impact. When all of this started a couple of years ago, the sensations in my right foot, and now in my right hand and lower arm, became more pronounced. I also started getting some pain spikes in those areas. I also had a few episodes of smelling things that weren't there. I'd never had that happen before even though I've always had a very sensitive sense of smell. I can't handle certain strong odors. They trigger sort of an allergic reaction in my respiratory system. Almost any of the synthetic odors in colognes will do it. My wife knows not to use anything around me. Even some of the hand lotions she has gotten have made me sick. Microwave popcorn and hot oil will have me wheezing and sneezing. This sensitivity to smells in general has worsened somewhat but I'm no longer having a problem smelling things that aren't there.
My first neurologist had me see another neurologist who had me go through some tests. I had an EEG that did not show anything. It was just the quick test, not the one done over a period of time. I also had conductivity tests done on my right leg that showed no problems. I've not had any problems walking and no loss of coordination through all this, fortunately. The reason I say "fortunately" is because I had rheumatic fever when I was four years old. At least that's what they called it at the time. I was put on penicillin for two years. I can't recall how long it lasted but I could not stand up because one leg would just collapse. That went on for maybe a few weeks or so. After all of this other stuff began happening, I looked up the symptoms for rheumatic fever, only to discover that I don't recall having any of them. I don't remember any joint pain or any pain at all and I'm sure at that age I'd remember having any pain. I've asked my mother but she can't recall which leg it was. I'll lay odds it was this right leg and was some early manifestation of the cyst.
I guess I've been lucky because I never had any other problems that I could attribute to this condition over the years. I've mentioned headaches but they were not clearly localized. Now, my head pain is clearly in the area of the cyst and is of a different nature. I've had a minor problem with opthalmic migraine since my mid 20s. That's when you get the scotoma (flashing, expanding lights effect) but without getting a migraine headache with it. These events would just leave me a bit disoriented and irritated because it interferes with my vision for about 20 minutes. I have it irregularly a few times a year at most, often associated with stressful times, but it does not occur during all times of stress. I've had it occur only a couple of times since these more recent problems started, once when my head was pretty bad and I was in a stressful situation.
I was not prescribed any specific pain medication during the initial stages, except my dentist who gave me a prescription for Ultram for pain from a root canal. It seemed to help the head problems a little, mostly the mood part, not the strong pain. I asked about getting a pain killer but was told there would be problems with rebound headaches. I began experiencing rather severe mood swings that continue to this day. I have days when I'm not in much pain but feel like my head is rotten. I don't know a better way of putting it. I wake up in the morning feeling very bad, like I'm physically/mentally sick. I really hate waking up with this mood deficit that ruins the rest of my day.
That second neurologist thought I might be having partial complex seizures. Even though the tests didn't seem to back this up, he put me on Keppra which, fortunately, has very few side effects compared to other anticonvulsants. I don't know if that medication ever did anything and, after moving months later, I just stopped using it with no discernible change. Back then, I was pressured by family members to get a second opinion and went to a well-recognized clinic in Birmingham (Kirklin) where I saw another neurosurgeon who looked at my films but suggested taking a wait-and-see approach. He had me see another ENT there, as well as get a battery of neuropsych tests done. The tests showed I was fine, despite the mood swings I was experiencing. The ENT suggested I might have cochlear hydrops, which is a form of Meniere's disease but without the dizziness. Fortunately, I've not had problems with dizziness. This ENT also gave me a prescription for Xanax to help me sleep with the tinnitus. I took it infrequently but never liked the way it knocked me out and made me feel woozy the next day, even with have a dose.
My first ENT had me tested for cochlear hydrops (another conductivity test) and determined I had an inner ear problem. That diagnosis would explain the fluctuating hearing loss and tinnitus I had been having. Since I already had a fairly low-salt diet, I was put on a diuretic. That was the worst stuff I've ever taken. You're constantly dried out, out of breath, and tired because it lowers blood pressure (it was the same one used in lower dosage for women on birth control pills, which raise blood pressure). I was on that for over a month and never noticed any change. My temporary hearing loss episodes had given way to the tinnitus and the tinnitus remained as bad as ever.
After moving, I began seeing another neurologist who had another MRI done (my third). There was no apparent change in the cyst and no indication of inflammation. I pretty much received the same message: the cyst has probably always been there, there's no strong indication it is the cause of the symptoms being experienced, and, even though surgery (drain and shunt) were an option, it might not alleviate the problems--and could make matters even worse. Other than the rotten head days and mood swings with some head pain, I was able to maintain pretty normal daily activity, working a busy, somewhat stressful job. Then a little over a year ago, I started having much more head pain. I was put on a tricyclic antidepressant, Nortriptyline, at that time. The drug relieved the pain but I had to deal with these new side effects: almost no stamina, low energy, and constant dry mouth. After about three months, the pain was back on a daily basis. Daily head pain with sharp shooting pains at times through the left side is a new feature.
My neurologist wanted to increase the dosage but I complained that the side effects were already too much and my health was suffering from lack of exercise. That stuff also totally eliminates appetite. I would eat only because I knew I had to. Food tastes normal but you're just not interested in it. Great for dieters, I suppose. It also eliminated any enjoyment I had in drinking (beer and wine). I like a glass of wine or beer with my evening meals. No more on this stuff. Great for alcoholics, too, I suppose. My neurologist then switched me to Desipramine, another tricyclic antidepressant that had been found to work for headaches. He said the side effects were not as bad, and they weren't. My stamina was back and I could exercise. The dry mouth was still there but that's mostly an annoyance. Pretty good. For about six more months, then the pain, rotten head, and worse, bad sleep ruined my days. The sleep disorder was very upsetting, waking up after only a couple hours completing distraught over some nightmarish situation that would not go away unti the early hours of the morning. So my neurologist took me off the Desipramine. That was late summer and I went through withdrawal for the next month or so (the tricyclic antidepressants change your brain chemistry so, even though they are not addicting, your brain has to readjust). So I had the pain along with the withdrawal (head allergy or cold-like symptoms and a motion disorder). The motion disorder was a jerkiness with the slightest head movement. The best I can compare it to is the jerkiness effect I remember as a child when I would have very high fevers. I still have a slight jerkiness to my awareness. It's like my consciousness sort of cuts out a bit for small fractions of a second, with my hearing (noticeable because of the noisy tinnitus).
My neurologist next suggested Botox for the head pain. It took a while for the insurance to agree to pay for it, and then he administered it. That was about three months ago. I had a nice smooth forehead for a while but no noticeable change in the pain and bad days. So, at this point, he suggested I see another neurologist, one on the team at the Loma Linda Medical Center here. Again, a very well recognized place and team of neurologist. My neurologist had worked with them for a while. We had discussed possibilities at different times, such as surgery. He said that, even if they suggested such an option, I still ultimately would have to decide. He is concerned because the cyst is close to my speech center and I could end up not being able to talk. I've just recently seen that neurologist--my 5th neurologist/neurosurgeon--and she is having me go through more tests this month. Another EEG with sleep deprivation so I'll be tested over an hour or so this time. A visit the their neurosurgeon group who will look at my MRI films--and another bank of neuropsych testing. I meet with her at the end of the month to find out what treatment she recommends at this time.
I've been off meds for more than four months so I have a pretty good idea now what my real symptoms are. I've got almost daily head pain which, at its worst, feels like my brain on the left front is exposed to cold air--sort of like when the dentist shoots air on a drilled tooth! Not fun. Plus I get shooting pains at times through the left side. I've got the constant tinnitus that seems to worsen at times. I failed to mention earlier that I have had facial tics since this all began. Well, they come and go and most of the time are on my left side. They last for months sometimes. Currently, it's my left eyelid. Sort of a subdued twitching that's there first thing when I wake up in the morning and, of course, is more noticeable with stress and concentration.
I can usually feel pain when I put pressure on my left eye and that eye gets tired and scratchy early in the day. I've been using lubricating eyedrops but it doesn't help much. I also forgot to mention my sensitivity to light in general that has been a problem from the very beginning. I've always been somewhat sensitive to light and have to wear sunglasses even on cloudy days outside. Inside, I abhor fluorescent lighting. It makes me sick and has caused headaches for many years with too much exposure. I seem to be sensitive to both the brightness and the color. I also am sensitive to the flickering from the 60 Hz frequency that most people don't notice. I have the same problem with CRT computer screens and have used LCDs for many years. When all of this started a couple of years ago, my light sensitivity worsened. I almost passed out once when I entered a large store and looked up the banks of fluorescents across the ceiling. At work, when there are meetings in rooms with fluorescents, I have to shield my eyes. I have an appointment next month to try to get filtered or tinted glasses for indoor use.
My eyesight, like my hearing, has deteriorated with age and I wear reading glasses and have prescription glasses for distance that seems to have gotten much worse lately. Many days my vision just feels very blurry and I've had problems in stores for some reason where the rows and rows of products make me very queasy after a few minutes of looking. I just have to sit a close my eyes for a while. I also haven't mentioned that, as the pain has pretty much "stabilized" on the left front of my head where the cyst is located, my upper left molars hurt much of the time. When I had a root canal (only one) more than a year and a half ago, I the pain lasted a long time but now I know it's not the root canal that is the problem. The problem on this side also affects my sinuses a bit. About a year ago, more hearing tests and getting my hearing aids, I had a third ENT check things over. I had x-rays of my sinuses showing there was no problem with them. I also had my nerve pathways checked (vision and I forget what all). Still no problems--proving what? That this is all in my head! I have this constant mental battle going on where I try to convince myself that it's just that--all in my head, in other words, psychosomatic. But then when the pain and other problems really hit, I know better. Still, it's an endless mental loop. Finding this list and hearing more people with similar issues helps me realize it ain't just all in my head!
I have recently applied for disability and am working with my employer on going on disability leave. I haven't taught a class (university) since early November and in the past few weeks have not even been going in to my office that much. I've gotten so far behind in my work I could never catch up with the problems I'm experiencing each day. I can't face teaching again. Classes are in the evenings with adult students and my problems usually worsen as the day goes on. Because of that, I'm sleeping up to nine hours a night to keep reduce the severity while awake. Even taking days off, sitting at home and not trying to focus too much on work, I'm still having lots of pain and problems.
I used to enjoy riding my motorcycle and could ride only intermittently during this period. I stopped riding completely several months ago. My bike is just collecting dust and I should sell it since I'm not riding but doing that would be like giving up! Even though I'm pretty much resolved to working around this problem now, I won't give up on the idea that I can get better. I'm looking at alternative work situations and hope not to be in this disability situation for long. I have a wonderful wife who works very hard because she is putting two boys (previous marriage) through college by herself. I get very irritable and testy and hurt her too many times. It's not enough to apologize and try to explain what I'm going through. She has pain, too, with a pinched nerve in her back, yet she is constantly working and maintaining a very positive outlook on life. I am very fortunate in that respect but, sometimes, I just want to crawl into a hole and not have to be a burden for anyone.