My disturbing, unexplainable symptoms.
 

I've learned to deal with the symptoms you see in my signature...you know, the classic symptoms of PCS. It's the disturbing, unexplainable symptoms that bother me the most. I think I have more complex symptoms than anyone here on this forum because I've never heard of anyone complain about more than just typical symptoms...I'm going to try and explain.

I have this problem, some days worse than others, where I'll repeat the same same thing over and over in my head. It's like, I'll think of something or say something to someone and then I'll repeat the last thing I said or thought of over and over. Some days I'll have a phrase stuck in my head all day. Sometimes I'll repeat one word over and over to the beat of my heart. Weird? I think so.

Yesterday, started out as a bad day...then I turned it around and I had a few good hours. Then, while playing a simple little game on my smart phone to keep myself busy, I suddenly felt different. I felt very very uncomfortable. My thoughts slowed down, I couldn't think straight...I was just blank. I called the ex-fiance because I needed someone to talk to...but I couldn't talk. I ended the conversation quickly by saying "I'm just gonna go bye goodnight" and hung up the phone. That's all I could get out.

Today...I wake up, eat breakfast and then lay back down. I started having delusional thoughts. For some reason, this thought about putting the waffles in the toaster or I couldn't go to sleep got stuck in my head. Does that even make sense? It doesn't to me lol. Now I just have this uncomfortable feeling, I just don't feel right...it's so hard to explain. I'm just in a completely altered state of mind. Nothing seems right.

I don't think it's anxiety, but it's sure causing it which makes things worse.

I guess some people may go through similar things and just don't post about it because they don't want people to think they are crazy...or they don't know how to explain it? I just wanted to put this out there because these things bother me and maybe someone can put some sense to them.

All sounds a bit OCDish to me. I've certainly noticed I'm more likely to pointlessly check whether I've locked the door or turned the oven off since my injury, though it's not a major problem. I think I've seen a few others (maybe Mark?) with OCD in their list of symptoms, so I guess it's something that happens with PCS.

I think in general you worry way too much about your symptoms being somehow unique and terrifying. The brain is extremely complex and we all have bizarre symptoms, obsessing about each one will do us no good at all.

Best wishes!

In terms of having OCD as a symptom, I was told it compensates for other deficiencies such as memory.

Nick,

This symptoms of repeating things in thought is an anxiety issue. Yes, the term is OCD but not the normal variety of OCD. I call this symptom LOOPING. I can get stuck looping very easily. I need to avoid exposing myself to repetitive auditory stimuli.

I take paroxetine at maximum dose (60 mgs per day) specifically for this symptom. Before the paroxetine, I could get stuck looping for as long as a day or two. Sometimes, I could push the loop aside to do other thought tasks but it would return. I could also "juke box" between different songs to lessen the fatigue of looping the same song.

I would get stuck looping a license plate number, the words to a song, the spelling of a word, etc. I learned to let songs on the radio finish before getting out of the car otherwise, my brain would keep trying to finish the song.

It was exhausting and disabling.

Oddly, I have learned to use music to interrupt the looping. I have a few CDs that I can play that will become background sounds for my brain.

How long and often have you struggled with looping?

sorry that sounded a bit pompous. I mean, in a non-pompous way, try not to worry so much! :D

This started in October, when I moved in to my mom's and had more peace and quiet...I guess my brain started getting bored of me just sitting around doing nothing. I've had this problem since. It was at it's worse I would say in November...once I upped my dosage of Mirtazapine it got better...but definitely still there.

Sometimes I can feel my heart beat in my throat...when this happens I'll start repeating the same word over and over to the beat of my heart. "Yep. Yep. Yep. Yep."....lol. It's annoying. I could get stuck looping for a day or two as well....songs, phrases, words...you name it.

I've used music to deter my looping, but sometimes that backfires and I'll have the chorus or just one part of the song stuck in my head for hours/days.

Do you ever suddenly go from being okay to having a completely altered, uncomfortable state of mind? I wish there was a better way to explain it...I'm pretty sure it isn't anxiety. I've had this weird feeling since breakfast. I've learned not to focus too much attention on my symptoms but it's hard when your entire state of mind has been altered.

How about "delusional thoughts"? I guess that's what they could be called...my thinking gets distorted sometimes and I'll have weird thoughts. I haven't seen such a thing listed as a symptom of PCS. Maybe schizophrenia, psychosis or dementia...but not PCS.

Haha, no offense taken. I've learned to not worry about the regular ol' symptoms, it's just hard to not worry when your having delusional thoughts that don't make sense. Makes me feel like I'm losing it.

Some of the delusional thoughts can be caused by the meds you are taking.

Something you need to seriously consider is fixing a constant of meds and supplements. It is seriously counter productive to be frequently changing your meds (dosage) and supplements.

It is no better that constantly being aware of a new or recurrence of a symptom.

As a TBI friend says, "And then that happened." He uses this term to disregard the ups and downs of symptoms.

You may need to try a different med to help you get out of the looping, especially if you loop about a particular symptom.

My psychiatrist focused on my looping first thing and got me up to 60 mgs of paxil (paroxetine) within 2 or 3 weeks. He had experience with OCD and looping and knew a lesser dose would likely not help. I have tried reducing to 40 mgs but the looping returned with a vengeance.

I just read a research article at NIMH (National Institutes for Mental Health) that showed combining paroxetine with Mirtazapine doubles the effective rare of decrease of anxiety/OCD symptoms. I googled "Mirtazapine OCD paroxetine" The literature seems to suggest the paroxetine or other SSRI's alone are more effective than Mirtazapine alone.

The repetitive word or phrase that gets stuck in your head or you keep saying is also known as Perseveration. Its not as rare as you think. I've had many many patients with this side effect from a brain injury.

From Wikipedia : Perseveration is the repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder.[1] If an issue has been fully explored and discussed to a point of resolution, it is not uncommon for something to trigger the reinvestigation of the matter. This can happen at any time during a conversation. This is particularly true with those who have had traumatic brain injury.

In regards to your brain fog, that most certainly happened to me off and on for 6 months or so....and i noticed it finally ended when i got my anxiety under control and started doing Healing Touch and Acupuncture. It was usually triggered by overstimulation....which for me could have been anything from driving, music being too loud, too many people talking, lights being too bright, playing poker, being out of my normal environment.

I posted about it in the beginning when it was first a major concern of mine....but quickly realized that some symptoms and side effects you just have to accept, acknowledge them for the weird things that they are, and learn to work around them. I stopped doing the activities or actions that caused them to happen and saw a huge decrease in the amount of times that they happened.

Consistency works wonders. Stick with an easy routine day to day that doesnt bring on your symptoms...you will figure out what works. But the anxiety will only make things worse off. When you start ruminating over every little symptom, that in itself will send you into a brain fog. Maybe take a few weeks off from this website too and see if the less you are talking and writing about it, the lesser your symptoms become. I also found this to help with my anxiety....to stop reading about everyone elses anxieties and focus on learning coping mechanisms and ways to handle my stress and anxiety. Sorry buddy.....i know this isnt easy.

Thank you for this information.

I noticed the brain fog has kinda lessened a bit since I upped my dosage of Mirtazapine (anti-depressant)...my anxiety is too severe to deal with without a medication. I tried CBT, but I was overwhelmed after the first question the psychologist asked me. It's there all the time but like you said it gets worse with over-stimulation (everything you listed does it for me).

That healing touch thing sounds pretty promising...problem is, I don't have any physical symptoms or else I'd try it. I'm the rare case that doesn't get dizzy (hardly hardly ever) and no headaches. I'm not sure what it would do for these messed up, scary mind-states I'm put into.

I noticed that as well...picking up other people's anxieties from this forum. I actually started getting intrusive thoughts by reading someone's thread about them. I'm still haunted with them to this day :(...I've got so many problems, I bet if someone read through all my complaints they, too, would pick up a ton of anxiety lol. I'm just saying...and ditto on the consistency thing. I'm trying that now...it's just hard with the living situation I'm in and how sensitive I am to everything.

Thank you so much for your response, suggestions and concern. Your awesome!!

Healing Touch would be great for you! Its not just for someone having pain. Its a relaxation technique. It helps balance your physical body, mind, emotions and spirit. I had severe anxiety and depression. I was even thinking intrusive scary thoughts in the beginning of October. Once i tried healing touch, all that went away at end of October.

When i have a patient that is anxious, cant sleep, depressed, or having pain....i offer it to them. Its good for everyone and helps with every aspect of who you are as a person. When people say how anxiety can make your symptoms worse....well thats an emotion affecting your physical body, right? So the thought is to balance your mental health, your emotional health, and your physical health and symptoms lessen. Think about a highly stressed out person who gets a stomach ulcer....thats an emotion manifesting itself in your physical body. So Healing Touch is an energy therapy done to help with all aspects of who you are.

I've done community health clinics where we did healing touch for the community. Most people didnt know what it was. They were coming in to get their eyes checked, bone density tests, blood pressure, etc. So we had everyone go to blood pressure station first, then come get Healing Touch. After a 20 minute treatment, they went back to get their blood pressure checked. Some people had very drastic changes in their blood pressure. Anywhere from 10-40mmhg lower difference in their systolic blood pressure and a lowering of the heart rate. All signs that they were more "relaxed afterwards" and the positive effects of receiving a treatment.

My neurologist said today to me during my checkup that every patient she has that gets Healing Touch treatments, does so much better than the patients who dont receive it. She now suggests it to her patients because we have had so much success in the hospital with it.

A very important study was just done at Camp Peddleton in california and should be published very soon. They had a large group of military with PTSD and one group got healing touch and therapy and the other group only got therapy. The group that got healing touch all showed significant improvements where they were no longer having anxiety attacks and no longer depressed, nightmares decreased, and they were able to be reintegrated back into their lives and fully functioning. The other group did very poorly. Now that the study is done, they are giving the non-healing touch group Healing Touch so that they will all recover fully as well.

So you see Nick, its not just for pain....its for everything. I barely have anxiety now.....and i have had it my whole life, and awful awful anxiety during my PCS. And its because of these relaxation techniques i learned from healing touch. Im not just speaking as a nurse....im speaking as a patient. im living proof of how well it works. I've met other brain injury survivors who also deal with their PCS with healing touch and are doing just as good.

Dont give up. You have come too far to give up now. Sending you healing thoughts.