The verdict is in …

No, this is not a blog about work so not that kind of verdict – although we DID have a verdict and not exactly in our favor, but not my point.

So since my last blog, I did hear from my ENT’s nurse. Your MRI is normal and there is minimal fluid so keep using he Nasacort and if you need us please call. Um….what? Minimal fluid? MY copy of the MRI report said “moderate” not “minimal”. That HAS TO be it. I start to choke up, I say to the nurse “so that’s it, I have to learn to live with the screeching in my head. I can’t live with it.” TINNITUS IS DIFFERENT FOR EVERYONE. Oh, I’m sorry, what was I thinking.

I called Johns Hopkins. They arrange to get me in Thursday (i.e., day before yesterday). I call my ENT and ask for copies of my audiology report and the MRI report (because hers must have said “minimal”). In the most immature fashion possible I play a YouTube video of a balloon squeal on repeat, because, after all, if I have to hear that high pitched squealing nonstop I should share the love.

I’ll save you all the boring details of what transpired between Monday and Thursday but say I have absolute saints for family members, friends and coworkers. I cannot even imagine how irritating it must be for them listening to me whine, cry and all but throw myself down on the ground in a full-on temper tantrum. I assured my husband that if the doctor at Johns Hopkins agreed with my ENT or in any way felt this is not curable, I would be done. No more seeking answers. No more whining.

Well, my husband is in luck. It is NOT my ears. It is my brain. That amazing gray mass in my head. So much potential and it has to spend all of its energy destroying what little sanity I have left. The doctors at Johns Hopkins are truly spectacular in that that they looked you in the eye and explained the situation. I understand what but not why but then I’ve given up being untitled to the why.

The main doctor I spoke to made some suggestions including seeing someone about migraines (which I’ve had all my life) but more importantly he insisted I get back on my antidepressants immediately. This part worries me the most. I’m not suicidal. Not in the slightest. But I’m starting to wonder what is wrong with me that I’m not. He wants me to get under the care of a psychiatrist to work on CBT – sooner rather than later – so like a good patient, I called my primary for a referral (which I already had, but they are scheduling 10 weeks out). As per usual, three days have passed and no call back from my dr. I’ll call the doc at Johns Hopkins for a referral Monday afternoon.

Finally, I get to bombard my brain with similar white noise in an effort to stop hearing the noise that is constant and will never end. I’m still wrapping my head around that one. I’m generally just numb and quite gun-shy (rather terrified) of what my brain is going to do next.

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Still waiting…

I’m feeling mean. It’s uncharacteristic of me but I’m really irritated/frustrated/overwhelmed.

Over six months ago I complained of tinnitus to my doctor. She cleaned my left ear. That should fix it. It didn’t.

As the tinnitus became a NONSTOP SCREECHING, I go to an ENT. You are congested. Here’s some nasal spray. You are stressed and anxious. Bye.

Three weeks later, I go to the ER begging them to stop the noise. Full on mental breakdown. I’m no longer sleeping, I can’t get away from it, I can’t focus at work. So sorry, nothing we can do except have you follow up with the ENT but until then…even though you have no symptoms of neuropathy take gabapentin and prednisone. (Prednisone, but the way, is Satan’s medication. I don’t even know who I am anymore.)

Apparently the ER visit got me a little bit of attention – I received an email from my primary, a phone call from my insurance company and a follow up from my ENT. All within the next three days. I begin to feel optimistic that things are moving. Maybe now someone will believe me. Uh….Primary wanted to know if I needed them to schedule to follow up. I responded I don’t know … maybe … is someone going to do something about actually making this stop? Thank you for reaching out to us, please let us know if we can help. Oh oops my bad, i thought they were reacting to my visit to the ER, not covering their ass by no seeing if I needed an appointment. I don’t think they even knew WHY I went, just that I went.

The insurance company has an RN call me….repeatedly…starting off with the “can we help” speech but not really wanting answers, just letting me know there are less expensive resources than the ER…like reading material on depression and anxiety and going to Urgent Care not the ER. Strike two – my mistake again. I thought the call was to see how I was, not lecture me on their suggested proper procedure. (In retrospect, I suppose they are in a full on panic because we met our deductible and they are having to cover these expenses. How dare I?!)

Finally, the ENT. I did get a follow up. First to arrange a hearing test…until I reminded them I just had a hearing test when I saw her three weeks ago. Oh…ok, just an appointment then. I cried through the entire appointment. I refused to let her say “ringing”. I corrected her every effing time “screeching” “SCREECHING” “SCREECHING“. Ok, she gets it. She backed me off the gabapentin, made me finish satan’s steroids, and ordered an MRI. I suggested ruling out Lyme Disease. Oh..yeah sure, good idea. And, hmm, there is this clinic that we can refer you to that will help you learn to live with it. I sobbed harder. I will not, cannot “live” with this. This..is..not…RINGING…in…my…ears. (Why is no one listening to me?).

Lyme test negative.

MRI was Thursday morning. The report was in my chart Thursday afternoon. It was “unremarkable” for acoustic neuromas or other masses. <– this is a good thing. However the MRI DID find “moderate amount of fluid in the right and left mastoid air cells”. The radiologist commented “clinical correlation suggested”. I waited until 3:30 on Friday to call the ENT to ask if anything in the MRI report was useful in stopping the screeching. (Side note…I had a sinus migraine Wednesday into Thursday and typical of migraines, sights, sounds and smells were intensified. I had not been to sleep as of the MRI Thursday morning and the screeching was overwhelming. The headache has minimized to only being there when I move my head, but the screeching is still louder.). As of 9:30 a.m., Sunday, I have not heard from the ENT. Oh I know, I am being unreasonable to expect I am her only patient with SCREECHING in their head for over six months. I’m surely able to tolerate it for at least another 6 months while they hem-and-haw over how this anxious and depressed person is making up these things and wasting the doctors’ time for an intermittent, irritating background humming in my head.

Having to resort multiple times to Dr. Google and, of course, finding no immediate solution since tinnitus is not itself a symptom or anything but rather a secondary symptom to a lot of things, the only time fluid in the mastoid air cells appears is in conjunction with an ear infection. Or a stroke. A or Z. (MRI did not show any indication of a clot or stoke)

So as I try to function with a stress level now exceeding 1000%, exacerbated by no meaningful sleep in over a week, and pain in my head when I move, I patiently wait for someone…anyone to tell me what my next step is? Ice pick through the head or, I don’t know, antibiotics maybe?

Finally I will close this blog with a disclaimer. This is not me. I am not normally like this. I am friendly-to-a-fault, trusting and patient, but despite whining nonstop to whomever will listen, I am also 100% convinced that no one is listening and no one gives a shit. My family and my friends are sympathetic, but they don’t…can’t…know the intrusive, nonstop, high pitched, alarm screeching that is over EVERYTHING else and never ending. N E V E R E N D I N G. Not even for 10 minutes. I have to not mope around for fear of upsetting people. I have to function at work like there is nothing wrong. I have a husband to care for, a household to mange, chores to do. I can’t lay in bed wishing for….well wish for this to stop. But good news…this should all distract me from the screeching. Um..ok. How about do all this ON TOP of the screeching, no sleep and throbbing. Fighting back tears 24/7. Oh and don’t forget to smile. I’m soooooo “dramatic”.

If this is merely an ear infection or if there is any sort of solution whatsoever I hope that my suffering will be helpful to someone so they never have to do this. I WOULD NOT WISH THIS ON MY EX-HUSBAND, seriously. And believe me there is not much pain and misery I don’t wish on him.

Vent or Rampage…neurosis unleashed

I need to get this off my chest. What I hope to gain from the whine/vent/hysterical rampage that is someone…anyone…who can suffer through this blog can tell me what the hell is going on and please give me some hope.

Brief history…I diagnosed sometime ago with major depressive disorder. Started meds (Celexa first, then Lexapro). Went to counseling. Personal diagnosis, I am not depressed. I have General Anxiety Disorder. I have never known depression. At least not until this happened. Now I know depression. I have had tried and true anxiety attacks since I can remember. The first I remember was at age 5 or 6 when my mom took me to the public library. She gave me the “talk” about proper behavior in a library. We went with our neighbors. Neighbor mom apparently did not have the “talk” with her daughter and she ran screaming up and down the aisles, climbing on shelves and generally being a 5 year old in a new playground. I became hysterical. I had to be removed from the library. (Apparently the library staff anticipated her behavior… mine not so much.). In second grade, I was called out in the hall for being disruptive. I was asked to admit what I did (I was being a clown and liked it when classmates laughed at me), but I would not speak. They got the principal. I became hysterical and was sent home on the bus with the morning kindergarten class.

So flash forward to modern times…brain never stops. I wake up with my brain attempting to solve problems that don’t exist. When hiccups in life happen, I get sick. I get physical pain. The physical pain lasts until I go to the doctor and get the “you are having an anxiety reaction” speech followed by the medical bill. The pain subsides. It’s never the same pain so it’s never something I coherently or logically say “oh hmm, I must be having a reaction to a stressor”. I have found through therapy and reaching out to the bloggers, that I am not alone.

What I cannot accept is that as a middle aged, educated woman with an amazing family, a decent job and relatively good health, cannot find a way to “deal” with this. When the new pain happens, I cannot tell you what the stressor was that triggered it. I don’t “feel” stress. I function like every other normal person. If a stressor…a true stressor…like an auto accident…I react with normal stress. Like any other adult would. If finances run tight, I logically work through it like an adult. I don’t curl into a fetal position unable to function. When my daughter returned from vacation and has been robbed, I respond as any mother would and prepare a list of what she needs to do, stopping short of jumping on a plane to Seattle to track down and beat the shit out of any possible suspect hoodlum.

This year…starting in about March I began having tinnitus. I also started having pressure in my right eye. The eye issue I assumed was the need to get new contacts. I saw the doctor at the local get-new-glasses store and he couldn’t see anything wrong. (My brain translates that to “you are making it up”.) He gave me some antibiotics and no contacts for a few weeks. For the tinnitus I saw my doctor in April. She said my ears were impacted and cleaned them. That should help. It didn’t, but it wasn’t that bad at that time so I waited for it to just go away. Since I figured it is yet another anxiety reaction, I acknowledged it. Accepted it and waited for it to go away. It didn’t. It got worse. It is all day/every day. A screeching. Never stops. Never.

End of July, I went to an ENT. I am “congested”. Told to use nasal spray. Oh and take lipoflavanoid. It could take 60 days at least to begin working. I did argue with the ENT about allergies and congestion. But after starting nasal spray, I started feeling congested. (Oh and my hearing is perfect.). I stopped the certrizine which I had been taking for allergy itching for nearly two years. (I read long term antihistamine use can cause tinnitus.). She also said in her report that it was anxiety.

At the same time, I went to an eye doctor/surgeon. I have dry eye. And cataracts forming. I have eye drops. Eye doctor said he sees dry eye incidences like this with people who had parotidectomy. I had the parotid tumor removed in 2005 or 2006 so he said it was odd for that to be the reason so many years later. But short of that, there isn’t a reason he can see for the pressure in my eye.

I told my family doctor I wanted off the lexapro since a side effect could be tinnitus (although I’ve been on it for nearly 2 years and the tinnitus just started this year). She agreed but wants me to see a psychiatrist for behavioral therapy. Ok whatever they want. Oh and take zinc and B12. That could take 4 months to be effective.

I know tinnitus can be made worse by anxiety and nonstop tinnitus definitely creates anxiety.

The breakdown

Friday. After a very busy week at work struggling to concentrate through the screeching in my head, and admittedly dealing with a very stressful event (daughter returned from vacation and had been robbed), I took the opportunity of early dismissal to go to the ER. I was beyond able to cope. The nasal spray was not helping the tinnitus and if anything it was getting worse. I sat in triage and cried. I was hysterical and made stupid dramatic statements that people with a depression diagnosis are not allowed to say. I begged them to do something, anything to make it stop. The ER nurse literally sat there mouth hanging open as I blubbered uncontrollably. The doctor was sympathetic but there isn’t anything they can do for tinnitus.

She was the second person to ask if diagnostic tests had been done. No I tell them, only a hearing test. I am again asked if the tinnitus is in my right ear. Through my hysterical hiccups I tell them AGAIN it is in my WHOLE HEAD, but yes, ok, it never subsides on the right. Sometimes the left seems less intense but 99% of the time it is in my whole head. I rambled on that the eye pressure is only my right eye and the doctor said that might be from my parotidectomy but it’s been so long that he wasn’t sure. Wait…your right eye? Parotidectomy? Well, she can’t order an MRI, but she’d call my ENT. She returns with prescriptions to immediately start treatment for neuropathy. A small dose of gabapentin and prednisone, but I’m to get back in to the ENT and see if I need to get a referral to a neurologist.

She tried to prescribe xanax too but I declined. And after seeing I was calm and not a threat to myself despite my wildly hysterical comments, she discharged me.

The bottom line vent

Why the f&$k does the diagnostic testing have to be the last thing they think of? Am I prejudiced against because of the depression diagnosis? Does no one believe me that the pain is real? Do the doctors listen? My breakdown was largely caused by NO ONE BELIEVING ME. Tinnitus is subjective. No one hears it but me. You just need background noise to distract you. Like a fan. Really? And never know silence again? Never enjoy hiking in nature again? Silence is my recharge. Does anyone understand the anxiety that is caused by being told that I’m making these things up in my own head and they don’t really exist? Do they translate “nonstop screeching in my head” to “a mild humming that occurs off and on”? It does exist. It is all I hear. As I sit here now, with the tv on, the landscaper out back and the dog running back and forth because the landscaper is here, cat meowing because the landscaper is here, my head is filled with screeching. Loud unbearable screeching. If this is caused by something, I’m going to be pissed beyond belief that I’ve had to want to stick an icepick through my head for 6 months now because no one took me seriously. And if this IS yet another reaction to anxiety, I’m done. The mental institute can have me. Because if my brain is capable of doing this to me, and my only recourse is living with it, well I suspect my remaining years will be lived so doped up on every effing anti-anxiety medication, my “life” isn’t going to be very productive. ⬅️ oops super drama self slipped in. Seriously though, as I sit here today, with the screeching I cannot escape, “living with it” seems unbearable.

Ok whew, off my chest.

Post-Anxiety Musings

So I had an anxiety attack on Monday.  Such is the case with me, there was really no trigger that I am aware of.  Sure a few things could have aided in pushing me to the ledge, but no ONE thing I can put my finger on.  

I spent the morning struggling to keep myself from falling off the ledge and in retrospect I seriously wonder if the struggle was worth it.   I reached out to one of my pillars (my eldest daughter who has the unfortunate inherited gene of anxiety disorder but the wherewithal to understand the disorder far better than I do). By midday, I felt I was under control again, although I was exhausted.  I finished my day at work, and went home.

The next morning I continued listening to my lectures on mindfulness and understanding how to have compassion for one’s self and the egocentric effects of perfectionism.   (Both hitting home as I am overflowing with compassion for others and next to none for myself while all the time beating myself up for never being good enough).  I turned it off as I began to feel weepy.  It was shortly after that that I first heard of the senseless terrorist attack at the Ariana Grande concert in the U.K.  That was it…  I was overwhelmed with sadness and darkness.  How can anyone want to live in his hate-filled world.   This was not an anxiety attack anymore, it was the deep dark pit of depression hell.  The post-anxiety reality.

For days, I couldn’t muster enthusiasm.  I wanted to sleep all the time and as a matter of fact, I would become so overwhelmed with exhaustion, my eyes would not stay open.   My brain felt like it was scrambled.  The sensation was something like I have never experienced.  It was like my head was a watermelon and the pulp, my brain, had been scooped out, puréed and poured back in.  If I sneezed or coughed, it literally felt sloshy.  Oh and the inability to form sentences.  Well I could form them in my head, but the words got caught in my teeth.  Simple everyday functions like remembering to turn off the water or how to use my computer mouse were difficult.  Colors were dulled.  Tastes were bland.  I had tightness in my chest and arm.

Why do I feel the need to blog about this…well, now that I know what I have I am forever on a quest to understand it.  I took “mindful” notice of the after-effects of the anxiety.   To quote the lecturer, I allowed the feelings to “arise and fall away” – although that didn’t happen in a matter of seconds, minutes or even hours.  This feelings hung around until Friday.   First my power to speak returned, then my focus and concentration (I regained the power to move my mouse), and then finally the exhaustion faded.  

Recognizing these post-anxiety musings does not make the fear of future anxiety attacks any less, nor does it make me feel like the next one will be any easier.  I still find it hard to find brightness or goodness in this world.  I know it is there and I know I will find it again.
 

Seeing the other side…

of depression – and it sucks.

My husband, one of my biggest supporters with my own depression/anxiety issues, hurt his back.  He is in excruciating pain.  He is unable to work and he has no disability or leave.  He was started on a relative joke of medication for pain (after being treated like a drug seeker by the ER doc), some muscle relaxers and lidocaine patches to slap on his back (more useless than the pain med).  After 3 days of increasingly worse pain, he went for a follow up to his family doctor who gave him an Rx for a slightly stronger pain pill, more muscle relaxers and steroid treatment.  He is still not released to work.   With still no relief, he went back and was put on super-pain meds, no muscle relaxers and an order to go to physical therapy.  It was after this diagnosis that I saw it…he gave up.  He is on the couch, sleeping, expressionless.  He has no enthusiasm, no smile, no light in those beautiful eyes.  And my heart is broken.

This isn’t about me…and that it hard for my crazy mind to acknowledge.   He’s not mad/sad/upset with me.  Ok, I can accept that.  What I can’t accept is that there is nothing I can do.   My jokes don’t make him smile, my coconut banana nut cake didn’t put a sparkle in his eye, and my fancy Greek strudel chicken made with phyllo dough didn’t get a reaction (I used phyllo dough.  P h y l l o dough.  I despise that tearing, sticking frustrating-but-oh-so-delicious baking ingredient.) 

I know he’s depressed.  He is a hard working, active man and he is now acting his physical age.  He can’t stand, walk, bend or lie down without pain.  He needs help getting his shoes on and off.  I am afraid he has given up.  He won’t fight for his health.   Oh I’m sure I’m being dramatic, but I don’t know what to do for him.

Isn’t someone with “chronic” depression and anxiety supposed to know how to be supportive of someone that has slipped into that deep dark hole, albeit temporarily.  I’m completely at a loss.  I think I’ve lived with it for so long and dealt with it on my own for so long that I don’t know what to do.   Add that to my compulsive need to fix those I love and I feel helpless.   Completely incompetent.

Seeking understanding

I’m struggling.

Before therapy, when they “tested” antidepressants on me because I cried a lot and had no friends, I didn’t fully appreciate this “disease”.  It was another one of those labels you slap on a condition you can’t identify and send them away with happy pills. Needless to say, with that attitude and lack of moral support, the pills were useless.  Doses were increased at record speed and their effect was minimal at best.

Then, I sought counseling. All I really gained in therapy was (a) reassurance that I was not the only one who deals with the anxiety/depression; (b) I’m never good enough for myself; (c) the counselor was never going to tell me what to do but rather make me figure it out; and (d) I probably really need meds.  These are not necessarily negative.   Especially the “I’m not alone” reassurance because I am really out there sometimes.

Anyway, I’ve previously blogged that blah, blah, I didn’t want meds, I could handle it, blah, blah, overwhelmed, doctor insisted and BAM!! I’m “human” again.

Here is my struggle:  pre-med and therapy, I would feel the apple cart starting to go and I would fight it something fierce. The bouts seemed so very long…months even.  The fall into that pit of hell was so long.  And yes, I was there longer with no visual on the light at the other end.

But now that I have acknowledged the issue, accepted I need help and support, there really isn’t any time to fight it.  I have maybe one day of “uh oh there goes the apple cart” and the next day I’m in the closet under my dresses trying to quiet the world.  The air still hurts my skin, the noises are still overwhelming.  There really isn’t any time, I feel, to right my apple cart, so to speak – not that I have EVER been able to right it before falling.  I hate it here (who doesn’t) and I know it will pass, but I thought these episode were supposed to stop.  Was that wrong?

And I do know the triggers now.  Only they seem to be simultaneous with the overturned apple cart.  

To be honest, I seem to handle being down here better and that’s a super improvement, but I guess I wanted to reach out to the blogisphere so that I don’t have to ask my doctor.  While I have accepted the need for help, I’m still not fond of pills and I’d like to avoid the “increase the dose” conversation.

How can I get a grip on the slip into this dark place?  How do I get out?  Do I just need to accept that even with meds and support, I’m going to constantly go through these cycles of ups and downs?   Ugh.  I feel stupid…being here…I’m bigger than this “disease”.

Ramadan Mubarak

Here we are nearly a week into Ramadan already.  It is the most anticipated time for me.  Part of what I deal with mentally is the need for scheduled restarts.  I’m not a “diet starts today” kind of person.  So Ramadan is the perfect time to “fix” those despised qualities and center myself.  I am always disappointed I don’t do more, but I am trying to focus on the changes I am making.  I want to finish memorizing Surah at-Takwir, inshaAllah, and I want to be the kind person I was before work beat me down.
I love Ramadan.  I love the calmness fasting brings down upon me.  My soul is quieted.  

May our prayers, deeds and fasting be accepted.  Ameen.
*for those that may read my blog and not know about Ramadan, it is a month of fasting, charitable acts, reflection and worship.  Fasting is from sunrise to sundown.  If anyone has questions I am more than happy to respond.