Coping with TMS and Tinnitus (long story)

Hello everyone, it's truly a pleasure to get to meet everyone here and lately I've been struggling so much with all the pain and symptoms being thrown at me. I'm a 26 year old guy who is in pharmacy school, and also engaged to a very supportive and wonderful fiance. But ever since the days I was an undergraduate, I have dealt with a multitude of symptoms that have tested me day in and day out since their onset. It first started about 7 years ago during the middle of my undergrad. The initial onset was when I was simply going shopping, and then all of a sudden it felt like somebody shoved a knife into my knee. I went to several doctors, and they couldn't find anything wrong. So to be on the safe side, I just put a brace on it, and over time the pain subsided. During this same time, I was constantly getting sick with colds every couple of weeks, and I couldn't understand why as I was a healthy guy and always eating right. But I just dismissed it as stress and the fact that I was in huge auditoriums with several hundred people. But then in my 3rd year of undergrad is when my symptoms really took off, which was most likely due to the intensity of the classes picking up, as well as having to do research and work on top of that. In the fall of 2009 I started breaking out in these persistent rashes that just would not go away. They were incredibly itchy and occupied every crevice in my body it seemed like. Eventually they just went away, but it was horrible having to take Hydroxyzine every day to keep down the itching as its a very sedating antihistamine. So after this, I thought I was in the clear as I had nothing go wrong for a few months. However, that took a quick turn. I started developing all these welts on my fingers. But it started on one finger, and then it just keep spreading to the rest of my hand. All the doctors thought they were warts, but they had no idea why they were spreading so fast. So you can imagine how paranoid and anxious I was during this time. But I eventually found that it was the onset of psoriasis, which perplexed me as I've never had a history of any autoimmune conditions, nor any of my family members. So once I accepted that, I developed a cough that persisted for about a month, and this was during fall of 2010. Then once that subsided, I started waking up with these massive headaches in the middle of the night, went from doctor to doctor (as usual), and I couldn't get a clear diagnosis. They kept saying it was infectiona, sinuses, etc... just throwing out random diagnosis because they honestly had no idea. My vision eventually blurred and I was throwing up quite often because the nausea became so intense. But then I was fortunate to have a doctor listen to me about all my problems with anxiety, and she immediately knew that I was clenching my teeth during my sleep and that I just need to relax and get a mouth guard to prevent further damage to my teeth. So a couple days after that resolved, I developed a really bad dry cough that lasted for 3 months. It initially started as bronchitis, but the cough just persisted and would not let up. In the spring of 2010, I developed horrible pelvic pain all of a sudden. I just remember sitting there one night doing some studying, and then WHAM. I had no idea what just happened. My bladder became so painful and all of a sudden I had the worst urinary frequency, just within a couple of minutes. So I saw about 5 different urologists, and of course, nothing showed to give any clear indication of what was going on. I was told it was either interstitial cystitis or chronic prostatitis, and that most likely that they would not resolve any time soon. So this dragged on for a few months, but I noticed that I came closer to graduation, that my pain was subsiding, and then by graduation, my pain was nearly gone. So I decided to take a year off from school, hopefully getting my anxiety and stress under control as the last few years had really taken a lot out of me. I was doing well over that first summer, but then as I inched closer towards the time for pharmacy school interviews, I developed the worst GI pain and nausea. For about two months, I was dry heaving everyday and my intestines just felt like they were on fire. So my fiance one day forced me to go to Disneyland with her because she thought I needed to get out and try and just shake this off, especially as she thought it was anxiety induced. Well, the first few hours I was miserable, but then something odd happened. We were walking down Main Street, and I just said to myself that I will not let this ruin our day. Then as soon as I thought that, the nausea vanished immediately. But then a split second later, all the muscles in my neck just tensed up. So realizing that there was some psychological aspect to this, I did the same thing with that neck and jaw pain, and it subsided. So during the rest of my year off, I had a couple instances of pelvic pain that would last for a few days, but nothing too drastic. However, a few weeks before I started pharmacy school, I noticed that I started getting more tension in my neck. I blew it off, realizing it was just anxiety. But I woke up on July 4, 2012, and noticed my jaw just completely shifted. I couldn't even close my mouth and my ears were just clogged with so much pressure and just constantly popping. Then when pharmacy school started, it just went downhill even further. I developed my pelvic pain again, my mouth went completely dry for about 6 months, and I had this taste of vomit in my mouth that would not leave. So once again, I went back to the doctors, they had no idea what was going on, so they just left me with the diagnosis of having oral thrush. So that definitely added much more anxiety into my life, up to the point where I developed gastritis and lost about 40 pounds as I couldn't eat anything for about a month with having the urge to throw up immediately afterwards. Not being able to handle school and this at the same time, I had to take a leave of absence. But after several months of therapy and injections, all the pain subsided. Although the ear pressure took quite a bit longer to heal and my stomach issues eventually healed. I was doing great during my leave from school up until April of 2013. I was doing some push ups and all of sudden I felt a little pop in my back and my ulnar nerve went immediately numb. It took a couple of months, but eventually I just accepted it, and the numbness subsided and I was back to normal. So here I go back into school thinking I was completely cured of everything. How naive i was Within a week of starting school, my neck and jaw muscles started to completely spasm out and then I developed a fluttering noise in my ear, which I later found out from Dr. Graff Radford at Cedars Sinai was simply a muscle spasm of my inner ear muscles. But this doctor was the first one to introduce me to the idea that physical pain can be psychosomatic. So once I got that answer, I calmed down and let it subside. But within a couple days of having that pain subside, my pelvic pain took hold... and this time it took hold for almost a year. It was simply pure agony having this. My whole pelvis was on fire 24/7, and I still had no idea what was going on until I came across this one urologist who said it is simply muscle tension. Even though I was in pain, that diagnosis made me so elated, knowing that this condition was anxiety related, and it eventually subsided by summer time. So in fall of my second year of pharmacy school, the classes really intensified and my whole body just tensed up again. I had pelvic pain, jaw pain, blurred vision, and nausea all at once. Then one day, my brother with paranoid schizophrenia came in my room when I was back home for the weekend and was trying to get in a physical fight with me. I kept telling him to stop as I was trying to study and still in a ton of pain from all my other symptoms, in addition to me hating any kind of altercation to begin with. Anyways, he kept screaming at me, and eventually I just slammed my hand against the desk so hard out of frustration. I thought for sure that my hand was permanently injured after that. So I saw 5 orthopedic surgeons and several physical therapists, adamant that something was wrong. MRI showed nothing, Xrays showed no breaks, and doctors were dumbfounded about the pain. And at this time was when I really started to delve into TMS. I was aware of it before, but never really looked too much into it. This was because after a couple of months of not even being to make a fist of my hand, I knew something was up. Even if there was something physical, I would have shown some type of healing by then. I even started getting carpal tunnel pain as well as ulnar sided pain all of a sudden. But all the nerve conductance tests came back normal, so the neurologist said that it was psychosomatic. So being fortunate to live near Los Angeles, I have access to several TMS therapists and doctors. After seeing Dr. Schechter in LA and talking with Arnold Bloch in Westlake, my hand pain started to get better. Within a matter of a few weeks, my hand is at about 90%, and still currently getting better. AND NOW FINALLY....to the tinnitus. For the last 5 weeks or so, I started to develop tinnitus. But unfortunately, I can't tell if the origin of the tinnitus is TMS or if it was something physically induced. The only reason I'm doubtful about TMS in this regards is because we were watching a movie in class, and as soon as it came on, I had an anxiety attack all of a sudden, mainly because the audio in the movie started irritating my ears. I had just finished up with a big midterm and my autonomic nervous system was simply on edge, and has been for several months. I can't even relax or sleep either, as I have developed insomnia on top of everything else. But I just cant figure out if the movie itself caused the tinnitus due to the horrendous audio, or if it was TMS kicking in. Also, I should add that in the week prior to the onset of this non stop tinnitus, I started getting the ear fluttering again as well as intermittent ear ringing (which I knew was anxiety induced). So is it possible that this tinnitus is from TMS or can bad audio cause this? Both Dr. Schechter and Arnold are convinced it is TMS, but once again, the audio was somewhat loud but made me strain really hard to understand what was being said in the movie. So right now I'm just really mad at myself for not saying anything to begin with in regards to the movie or just simply walking out of the classroom. So any help would be appreciated, and I'm so sorry about the length of this story.

 

Hi Samwise and welcome to the forum!

I'm new here too and have found this to be an excellent place to share your story and get support.

What a journey you've been on! I can relate to much of what you've experienced and I know how horrible it can be. I think you are well on your way to healing because you've been able to make some of the symptoms go away, so you know that this is possible. It's common that you get new symptoms or that your pain shifts, the latter has happened to me and I knew for sure then what my mind was up to. Managing to get rid of a symptom feels very hopeful but it's being able to get rid of them all that I'm working on... for that to happen you have to fully know on all levels that what you have is tms and that isn't easy, especially when you're dealing with so many things all at once.

I used to have tinnitus and it's a classic tms symptom. I went through a tms program recently and was able to make it go away, so it's certainly possible.

At the moment I'm focusing on my anxiety issues, that's where it all started for me and I've found Self Help For Your Nerves, by Claire Weekes to be extremely helpful, as have a lot of people on this forum.

You've come to the right place.


Kindly
Simplicity

 

Thank you so much Simplicity and congratulations on the progress you have made thus far! I just want to fully believe that this all TMS, but for some reason, I can't shake off that doubt that there is something physical going on. This has pretty much been my greatest struggle, and it unfortunately just keeps me focused on whatever is going on with my body. I just keep analyzing every little detail as to what is going on, just trying to make sense of the pain, tinnitus, etc. I'm constantly testing to see if loud sounds exacerbate the tinnitus or if stress does, but the only conclusion I have reached is that both intensify the tinnitus, and as a result, I will never know the origin of what caused it. This frustrates me to no end, and I just want to simply stop all of this, and just fully accept it. But I made the biggest mistake and went online and read all the horror stories out there regarding tinnitus, throwing me into an all out panic attack. But I just don't see how a simple movie in a classroom could have caused it, granted it was a little loud. If I reflect on that moment, I was under a great amount of stress and trying to hold back that anxiety attack so the whole class wouldn't see. So it's this thought that I'm trying to hold onto, just trying to convince myself that it was the anxiety of the moment exposing my vulnerability of my ears and consequently causing this tinnitus. Thank you for that recommendation of the book, I will definitely read it as I obviously need some help in calming down my nerves. I have pretty much been on edge non stop for several months, and I just haven't been able to sit calmly and relax one time. My mind just wanders, going through all these different scenarios, always ending in something catastrophic. But it just seems like it's the anxiety of school and everything else weighing down on me, not allowing me to get the mental clarity that I'm constantly pursuing. I honestly try to meditate everyday, but I just can't get my mind to stop, it's always looking for those worst case scenarios.

 

Thank you. I think we need to see each little step as a small victory.

That is the key to the whole thing I think. That Fear has taken over our lives; it will keep you guessing and questioning every little thing. I've had pretty severe vertigo throughout the years and the fear that it could hit at any moment was horrible to live with. I had to constantly be on guard, scared to be alone. I'm so tired of living in constant fear all the time. I've come to the realization that my biggest problem is that I can't let go - I'm constantly in battle mode when I need to simply (as Claire Weekes puts it) just float and know that I have the control and that I am safe. (I managed to do that with my vertigo and it doesn't trouble me any longer.)

The tms program (Unlearn your Pain) helped me learn things about myself and my past, it was very useful to me. It's crucial to find tools to help you be in the moment and release that fear. I can so relate to having insomnia and not being able to relax the mind, no matter how many guided meditations I listen to. Some days it works, some days it doesn't. It takes time to teach the mind these things and we should all be a little kinder to ourselves in this process. One thing I find helpful when I'm in that state of tension is to try to look at myself from a different perspective, almost like from above and tell myself to just let go and let it be. We can retrain our minds and heal our bodies, I'm sure of it.

I think it's important to simplify as well, make sure not to read too much about your conditions (goodness knows I've made that mistake), your mind will only use that information to keep you fearful. Find information about tms, useful books and read them thoroughly and make sure to take the information to heart. Don't rush anything. I know that we are in a hurry to get better because living like this is so hard, but that added stress will not help. That book is a good start, for sure.

The solution to our health issues can sound so simple - you have to truly know that you have tms - but to get to that point of knowing and believing isn't always easy.

You should be proud that you have come this far and that you have taken this step.

Oh, and by the way... Samwise is my favorite Lord of the Rings character.

 

Hi, Samwise, welcome to the forum. You have really been through the wringer, clearly TMS, and I echo Simplicity in saying that you should give yourself a ton of credit for realizing the psychological basis for all of these symptoms. Hope and Help For Your Nerves is an excellent resource for anxiety, it really helped me.

What I don't see is what you are doing to address the deeply repressed emotions that must be at the heart of your issues. The fact that you have a brother with schizophrenia barely gets a mention! Sam, this is HUGE.

My recommendations for you are:
1. Now that you've told your story and got all the details recorded, try to avoid any more detailed descriptions of your symptoms. Be very general when you refer to them. If you can limit yourself to the words "my symptoms" that's ideal. The point from now on is to focus on the psychological, not the physical.

2. Start examining your childhood and family dynamics involved with having a mentally ill sibling. How did that affect you? And where the heck are your parents in all this?

3. Normally I'd recommend doing the Structured Education Program but I'm wondering whether one-on-one psychotherapy isn't more appropriate. The number and intensity of your symptoms is quite alarming, I am concerned about the possibility of severe trauma that is not being addressed.

Wishing you the same courage and resolve of your namesake as you face this most important next part of your journey.

~Jan

 

Excellent advice as always, Jan!

 

Jan, this is so true of us TMSers, we become so preoccupied in labelling the dis-ease rather than overcoming it. if we label it in a generic fashion, i.e as a "symptom", it allows one to take the edge of an ailment and not make it feel chronic or permanent.

 

Hi, Samwise. Welcome to the TMS community and this web site.

I echo Jan's advice, but would like to add that you should not think that because your brother has schizophrenia, that you have it. A very good friend's father had it but she didn't. From what you shared about your life, it sounds like TMS, repressed emotions. Journaling will help you to discover what they are.

Simplicity's advice also is excellent.

 

Hi again, Samwise. I am 85 and began having Tinnitus about 40 years ago. An ear doctor said most people get a ringing in their ears.
I only hear it when I think of it.

 

Thank you everyone for your replies. I really have been trying to analyze what is causing me so much tension in my life, and it appears that its just outlook on life. I absolutely can not accept failure and I need things to be done a certain way. If anything deviates from what my expected, then I get incredibly stressed out. I've actually been discussing this at length with a TMS therapist, Arnold Bloch, and he says my main issues are that I try to control my future and maintain perfection through out my life, which we all know is impossible. So with this mindset, I'm setting myself up for constant disappointment, never giving myself a chance to see the good in life. On top of that, I have developed a horrible catastrophic mindset, always looking at the worst possible outcomes. Every time some new pain comes along, I just feel I will have it the rest of my life, further adding to my downward spiral. In regards to my brother, he has definitely added a severe amount of stress in my life. Growing up, he was such a smart individual and still is, but in his mid 20's, everything just changed. He starts screaming out of nowhere and gets in these violent episodes, and over the years, it has simply now allowed my fight or flight response to settle down. I'm constantly in "battle mode," as Simplicity referred to earlier. But in regards to myself, ever since the 3rd grade, I have always had issues with anxiety. I just felt pressure to constantly please my parents, so I would stress out about getting good grades. I didn't even miss a day of school in grade school because I was so afraid of falling behind in class. Even the day I dislocated my jaw, I still showed up to work because I didn't want to disappoint my boss. I just feel like I live my life trying to please others, depriving myself of any pleasure. And it kills me. I really want to change, but I just don't know how. Then, the further I dig into these emotions and why I am the way I am today, I just feel like my brain is throwing new pains at me....constantly looking for my vulnerabilities and fears. And I do realize that I should stop thinking in a physical sense, but that analytical nature that is so embedded in me constantly pursues that mindset. I just feel trapped in this vicious cycle.

 

I think perfectionism comes from a deep rooted feeling of not being good enough. By constantly pressuring ourselves to be perfect we try to make up for the perceived notion of lacking. It's something we all know; no one is perfect and life isn't perfect. When we're having these impossible standards for ourselves, that no human can live up to, we create a sort of self punishment.

I also think that along our life journey, people have told us who we are by the way they have treated us and by the things they have told us. What we have to realize is that those things doesn't have to be true. We also have a tendency to mostly hear the negative things people tell us and somehow make those our truths. Somewhere along the way you were told you aren't good enough and I can tell you right now that it is a lie. You have worth just by being here, by being human and struggling along side the rest of us. Your worth is not in your good grades or what kind of work you have; you have value without those things. We should always strive to improve ourselves and do good, but you need to be kind to yourself and cut yourself some slack.

When pain enters our lives it can be a great lesson for us, to reevaluate and to refocus; to truly learn what matters in life and what doesn't matter at all. It sucks that we have to go through this, to suffer like this, but we have to have hope that by doing the work and by being brave enough to face our problems we can get better. It think introspection is necessary in this case to figure out why you've developed this mindset; it's a very complex issue. I'm sorry to hear about your brother, I can only imagine what it is like for both him and you. That must have affected you deeply.

 

You are so right about all of that Simplicity. We have these impossible standards that we have set for ourselves, and it really is a self punishment. Even with all the hard work I have done so far in my life, I just always feel like that it is never enough. I can always remember growing up, and just never being content with anything that I achieved. But I'm just so afraid to commit to TMS, as I feel like I'm letting my guard down. I'm always expecting something to happen, and I feel that I need to be constantly braced for whatever comes my way. However, I realize that the more I struggle with these symptoms, the worse everything gets. I've always viewed myself being stuck in quicksand...I just need to stop fighting everything before I sink deeper. Right before this tinnitus kicked in, I really thought I was going to have this beat, and I was so excited about that. So I'm trying to live my life as if I didn't have any type of pain, so hopefully the mentality that I'm perfectly fine will override any negative emotion trying to hold me back. But in regards to your tinnitus Simplicity, did the ringing intensify around loud sounds? Because I'm trying to listen to music or watch movies as I normally would, but it seems to worsen the ringing and hissing going on in my ear. One of the ENT's that I saw told me to stay away from loud sounds, so when I heard that, it instilled this fear in me that I would damage my ears. So now I'm just afraid to go out there and even watch a movie, which has always been one of my favorite things to do.

 

My tinnitus was very much connected to my stress levels, never to loud sounds. I will say though, that I'm very sensitive to sounds and noise, but I think that's because of my migraines and anxiety issues. When we have anxiety it's easy to make connections between events and tms symptoms; for example - you got a panic attack at a certain event and whenever you encounter the same thing again, you feel faint and anxious although there's no real threat present. Of course you should always be careful when it comes to extreme noise just like the rest of us... but I think the only thing to do is to expose yourself to what you are afraid of; go enjoy a movie and have fun... eventually you will teach your mind that there's no danger in that. I should add, again, that Self Help For Your Nerves will give you guidance how to deal with stressful situations, I would do the same with the fear of the tinnitus getting worse; treat it as anxiety.

 

some constructive criticism....could you add some spaces to the writing so it makes it easier to read? I have the attention span of a goldfish!!
well done btw

 

Great advice

 

I recommend Steve O's book The Great Pain Deception as well. He had a long history of tons of symptoms just like you do and completely recovered. You may be able to identify with his symptom story which should help a lot and its a great TMS book. I love the thought of just generalizing and not labeling our symptoms as a way to step back from them and diffuse their power. Like that a lot. As for tinnitus an easy question to ask is if the movie caused tinnitus how come everyone else didn't get it. Suspicious sign that it is TMS. Good luck. All sounds like TMS plain and simple.

 

I made this very point a day or two ago and would like to expand... We can have the same experience as someone else, but it all boils down to our individual perception. What one person sees as a threat, another may not. That said, it's very important to be mindful and quieten our inner critic or any any obsessive thinking that may influence ones symptoms.

 

Thanks for the advice IrishSceptic. I was looking at the story when it was posted, and I realized I should have spaced it out.

Simplicity, you're right. I just can't live in fear of loud sounds, like what the doctor told me to do. Doing that would just reinforce that fearful mindset, never allowing me to break that cycle. I need to go out and experience life, look at everything that is great in my life, and reflect on that. Yesterday, I had a session with my TMS therapist who is close by, and we had a great discussion. He was talking about how most TMS symptoms have an initial trigger to try and confuse into thinking whatever you have is physical. So that seems to be what that loud movie is doing for me. Then the hardest part of the day is when I wake up, and with the insomnia, it unfortunately gives me more time to reflect on everything negative in my life. When I told him that, he told me to stop. He told me to analyze my senses and view everything as a miracle and that you have an opportunity to have a new day. It will take time, but I feel that I'm on the right path to healing. Even this morning, when I woke up at 2:30, I had something great happen. I noticed I didn't have the sound of tinnitus blaring in my ears like it has been doing for the last month non stop, but if it was there, I really couldn't hear it. It was like that for an hour or so, but unfortunately, my old habit of anticipating the negative was too strong and that hissing and ringing came right back. So right now, I'm trying to shake off any doubt...specifically right now, my mind is just saying that it was merely a coincidence that the tinnitus died down.

Hello Beachgirl! I actually just finished that book last week! It was truly an experience to read that book, seeing what he had gone through and how he lead himself to recovery. I actually just recommended that book to a friend of mine who is going through a hard time with pain as well. She has all characteristics of a TMS personality and her pains were constantly shifting around, so it was just screaming TMS. With that thought regarding why didn't anyone else get tinnitus, I had been thinking about that too. I had asked people if they thought the movie was loud right after the movie, and they did say it was a little loud. But it was nothing like a rock concert, or even a movie theater. But what freaked me out after the movie was that I heard a high frequency sound come from the microphone, which I honestly couldn't tell if it was just coincidence or something actually going on with my ears. And I still have sensitivity to certain sounds, which I had never had before. So I even went to an audiologist to get my hearing checked, and she said hearing is fine and that I have no hyperacusis. Even she was adamant that it was my anxiety getting the best of me.

 

@IrishSceptic

I'll have to make sure I don't leave any spaces between words on any posts to you. lol joking

 

I feel we all try to find out if somebody as the same issues as we do and to see what they are doing and if its getting better and so on.....People pain is pain no matter where it is. The tms concept and modalities work for all.

I have been the victim of searching for someone with the identical problems and all these did was keep me focused on my body and pain.

I might be off topic her and apologize i just been reading a few post and it took me to this rant.

Also i believe that talking about our issues on this forum or others also causes a delay in healing. I feel we continue to focus and complain rather than to stop be with your feeling/pain and learn from them. Please dont get me wrong this site is filled with beautiful looking for help. Use this site as a tool not a crutch

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