Paolo’s symptoms and coping strategies

I believe the majority of these symptoms were caused by multiple sports injuries and old school weight cutting techniques.  I suffered concussions starting as early as the age of nine playing peewee football.  During high school, I played football at 175 lbs.  I started my wrestling season at 155 lbs. and dropped 3 weight classes to be at 126 lbs. for my senior year.  I had a life-changing traumatic event that has affected me mentally and emotionally since 30.  Over the years I have gone cold turkey from pain medications multiple times traumatizing my nervous system and body.
I also believe some of the medications that I was put on (the mood stabilizers) between 2015 and 2019 had a negative effect on me in weight gain.  One particular that was prescribed to help me sleep was Seroquel. I believe that medicine really messed me up. After taking that and other antidepressants, I’ve had severe weight gain, up to 110 pounds and also fluctuating. Honestly, I was not eating clean at that time which also contributed majorly to the weakening.  I would eat comfort foods (sugars, carbohydrates, and salts).

I was also on sleep medication, pain medication, benzodiazepines, and I was dependent on Afrin Nasal for 10 years to relieve sinus pressure as my nose has been broken seven times.  I have minor allergies and occasional colds.  I occasionally have a combination of all three symptoms that causes unbelievable head and sinus pressure.

Our goal is that by being completely transparent, we hope that one day this information could be used as a case study and help scientists and the medical community find the answer and correct treatment to help others.

 

My advice from what works for me:  I do not isolate myself. I make sure that I do not complain to friends and family.  I tell myself that what I am feeling is natural. It’s natural for the family to ask how I’m doing.  It’s just polite.  I ask them not to ask me because what happens when they ask that is that I go negative from that question and it reinforces my negative symptoms.  I try to take my mind away and use positive techniques.  To do that, I read something I like that is uplifting, funny, or motivating.  I always do my best to stay away from scary or depressing subjects.

My past coaches and I believe that there’s nothing good that happens after 11 o’clock at night. I try to be home before 11 unless I have a family event, or I am going to see something uplifting like a comedy show.

I think about positive things such as people, places, and things.  I think about those three subjects and only fill my mind with those things that are positive.  I stay away from negative triggers.

The way to express how I feel on a daily basis is that I feel that the pressure and pain inside my head are going to explode. I want to break my skull to let the poison and pain out. I have tried multiple medications and treatments to no avail:  Imitrex in injection form and oral, nerve blockers (injections by the neurologist), Botox injections (treatment by the neurologist), Gabapentin and Cymbalta, a trial drug called Aimovig and multiple other medications.  I have tried too many to list, and nothing has really worked for me to date.

Grief:

Important to stay actively aware that the grief process is highly individual, in length and in expression. Some may still be actively grieving with outward expressions of sadness for many months and others make their way through to the place of having a kind of peace or acceptance with the loss in a very short period of time. No one ever seems to “fully get over it”, but nearly all “get through it”. These points or ideas seem to help most folks who are “lost in the beginning stages” and don’t know how to feel, what is normal, wonder if they will ever be ok again, etc. They also seem to benefit from the reminders that there are still others in their life who love them and who may be depending on them. If their life is “over” because of the loss of a particular loved one, what does that communicate to any others in their life? Will these others feel that their respective lives have no value to the person grieving? That they don’t count or aren’t enough. Tread lightly around these ideas and use sensitive questioning.

Dementia:

Patience, Patience, and more Patience. Remember who the person is and who they were and all that was positive about them. The patient is usually equally frustrated and sad about the condition. Employ empathy in great measures…what must the patient feel to be so incapacitated and/or to be so dependent/helpless and unable to meet personal needs. Remembering how the person was before the disease and all that they loved about them, all they contributed and how they will be missed, may keep the long days of care and hard work in perspective. Acknowledge to the family member that it is a terribly difficult situation, probably unexpected and may even seem unfair. Be/model the empathy that they will need for the patient.

HEAR SEE FEEL

Russell A. Bourne, Jr., Ph.D.

Many people are as calm or relaxed as they are going to be all day when they first awaken in the morning. Throughout the day they seem to become increasingly alert, aroused or even anxious. It as if the daily activities of life were acting similarly to someone gradually turning up the rheostat, or dimmer switch, on a ceiling light. Energy just seems to be increasing as the day goes on and sometimes this is welcomed and other times it can be quite distracting and even counterproductive. When this autonomic response needs to be lessened or calmed, people employ a variety of techniques such taking a casual walk, listening to relaxing music, meditating, etc.

A short and useful mindfulness technique to reboot or recalibrate (return to zero) involves a focused awareness of the 3 “over-used” of our 5 senses.
In general, we use our sense of smell and sense of taste primarily when we are dining. If asked, “what do you smell?” or “what do you taste?” right now, you would, in all likelihood, say “nothing”.
Whereas our other three senses, hearing, seeing and feeling (kinesthetic, not emotions) are used constantly. (Even when we are sleeping, we are aware of kinesthetic and hearing sensations and if dreaming, visual stimulation.)

The following description of a brief refocus/reboot technique is just one iteration of techniques that have been used for thousands of years to calm the autonomic nervous system when needed. It is a technique that can be used frequently during the day, takes just a couple of minutes, and becomes increasingly effective when used often. Personally, I use it between patient appointments and at the end of my work day to help return to zero…to start fresh.

Begin by sitting comfortably with eyes open. Inhale gently and on the exhale silently ask yourself the question, “What am I aware of hearing?” And then just listen while continuing to breath easily. Respond to the question with the awareness of what was most prominent to your hearing. Examples of responses could include the sound of the air conditioning, noises or voices from another room, sound of traffic outside, etc. After you have listened and responded, repeat the question with the following one change. Ask yourself, “What ELSE am I aware of hearing?”, as if you are listening beyond the first sound you heard. Follow a similar method as before: Inhale gently and on the exhale ask the question, pause, continue to breath easily, listen and then respond.

This pattern is then repeated with the visual sense, changing the questions to, “What am I aware of seeing?” and, “What ELSE am I aware of seeing.”

Next, the pattern is repeated for the auditory sense, changing the questions to, “What am I aware of hearing?” and, “What ELSE am I aware of hearing.

This should be a relaxed, casual, slow and easy process. Speak to yourself in a slower pace than usual and let the experience move slowly. All three steps will barely take 60 seconds. After doing the process once, all three steps should then be repeated. A very effective way to calm, refocus and reboot in just a couple of minutes or so.