Help Shaun Live
Donation protected
Brain Tumors found inside the center of Shaun's brain
Shaun lost his ability to live life at just 21 years old. It has been an ongoing struggle ever since. As the years go by he keeps getting worse. Staying strong, positive, and hopeful keeps him resilient.
Dizzy spells, confusion, pressure & pain in his head.
I will keep updating this page as he gets tested and results.
In 2001, He had a major panic attack, it was bewildering and debilitating as he had never had one before. Since this happened, every day has become a struggle.
Convulsions was added to his list of medical problems and the issues continue to grow. Scoliosis and DDD Degenerative Disc Disease created other problems. He was told by healthcare professionals that this was most likely due to decades of chronic panic attacks because he would go into the fetal position when experiencing them. He is extremely distressed in his panic attacks, emotionally and physically. The pain is so extreme that he needs help.
Over the years we have become steadily disappointed. Asking for answers and medical help has given us nothing. He can no longer be left alone at home, he needs someone there with him every hour of every day. On the medical side he has been prescribed over 50 different prescriptions to try and help with the panic disorder, anxiety and the convulsions. Most of the medications are to help ease the negative side effects of the other medications he is on. Furthermore, most of the prescriptions have failed him. There is no consistency with the medication; it is a game of swapping medicines and adjusting dosage amounts. Even after taking a gene test. Completed different types of therapy; including physical therapy, cognitive therapy, exposure therapy.
Through these changes there have still been emergency room visits for the uncontrollable panic attacks, dizziness, pressure in his head. We have searched for our own answers, looking for different solutions in case the doctors missed something or overlooked something. The conclusion that my husband and I have come to is that he is being poorly served by the medical community in our town.
Where are we to go for more of an expert opinion for his disorders? Finding competent care and help from specialists will require resources that we do not have and don’t have much of a chance at getting at this time.
In summary, my goal with this campaign is simplistic:
* Let his story be known. To find help and support groups (Chronic Panic Disorder; Amaxophobia; Agoraphobia).
* Team of doctors and therapist that can try to improve his quality of life
I'm painfully aware that so many have needs just as great--if not more so--than our own. My appeal however is no less valid; no less urgent. I ask that anyone that can be of help, if only in the smallest of ways, kindly do so. This campaign, long term, is much greater than current financial hardship for me. It is truly one of hope...of finally finding dynamic, effective solutions to his medical needs. No one should have to suffer in the extreme manner that I now know and I can't help but think that answers exist. We won't stop fighting for my husband to get his life back, but I do need help. If you can find it within your heart to give (NOT MONEY, just time or resources), won't you do so? Email me: [email redacted]
I thank you personally simply for reading this far.
FINDING HELP: Chronic Panic Disorder; Amaxophobia; Agoraphobia
Unexpected panic attacks have no clear external triggers (abuse, car accidents, trauma, grief)
* Psychiatric Service Dog
* Service Dog
*Therapy cat/dog
Transportation to Amen Clinic (Chicago IL or NYC) medical transportation
SDC Functional Neurology [ Neuro Rehab Center ] San Diego Chiropractic Neurology
American Academy of Neurology
American Academy of Neurology and the American Epilepsy Society
Johns Hopkins Hospital in Baltimore, Maryland, is the best US hospital for neurology and neurosurgery care 2020
National Social Anxiety Center
The Anxiety Treatment Center of Greater Chicago
Help stopping the harassment and bullying; we have moved 3 x to get away from bullies and it still continues --
*UPDATE* we moved January 1, 2020 to a social anxiety nightmare of apartment complex. Have been in ER 24 times upon moving to a "quiet environment".
Trying to rule out: Brain Cancer, Lyme disease , Lupus , Menieres Disease , POTS
-head hurts
-feeling of falling backwards
-starring episodes
+ Pain in the chest when breathing deeply (pleurisy)
(always telling him to take slow deep breaths, IT IS PAINFUL)
+ Achy joints (arthralgia)
+ Night sweats and sleep disturbances [Hypnogogic jerks]
+ Other neurological problems
+ Unexplained pain and other sensations
--- have sharp rib and chest pains that send them to the emergency room, suspecting a heart problem --- strange sensations like skin tingling and numbness
+ Mood changes, Heart problems, Sensitivity to light and vision changes
+ Confusion
+ Seizures
+ Dizziness
+ Headaches
Ear-ringing (tinnitus)
Hearing loss
Jaw pain
Inspired by :
Brain on Fire: My Month of Madness by Susannah Cahalan
Dr. Souhel Najjar, MD
Shaun lost his ability to live life at just 21 years old. It has been an ongoing struggle ever since. As the years go by he keeps getting worse. Staying strong, positive, and hopeful keeps him resilient.
Dizzy spells, confusion, pressure & pain in his head.
I will keep updating this page as he gets tested and results.
In 2001, He had a major panic attack, it was bewildering and debilitating as he had never had one before. Since this happened, every day has become a struggle.
Convulsions was added to his list of medical problems and the issues continue to grow. Scoliosis and DDD Degenerative Disc Disease created other problems. He was told by healthcare professionals that this was most likely due to decades of chronic panic attacks because he would go into the fetal position when experiencing them. He is extremely distressed in his panic attacks, emotionally and physically. The pain is so extreme that he needs help.
Over the years we have become steadily disappointed. Asking for answers and medical help has given us nothing. He can no longer be left alone at home, he needs someone there with him every hour of every day. On the medical side he has been prescribed over 50 different prescriptions to try and help with the panic disorder, anxiety and the convulsions. Most of the medications are to help ease the negative side effects of the other medications he is on. Furthermore, most of the prescriptions have failed him. There is no consistency with the medication; it is a game of swapping medicines and adjusting dosage amounts. Even after taking a gene test. Completed different types of therapy; including physical therapy, cognitive therapy, exposure therapy.
Through these changes there have still been emergency room visits for the uncontrollable panic attacks, dizziness, pressure in his head. We have searched for our own answers, looking for different solutions in case the doctors missed something or overlooked something. The conclusion that my husband and I have come to is that he is being poorly served by the medical community in our town.
Where are we to go for more of an expert opinion for his disorders? Finding competent care and help from specialists will require resources that we do not have and don’t have much of a chance at getting at this time.
In summary, my goal with this campaign is simplistic:
* Let his story be known. To find help and support groups (Chronic Panic Disorder; Amaxophobia; Agoraphobia).
* Team of doctors and therapist that can try to improve his quality of life
I'm painfully aware that so many have needs just as great--if not more so--than our own. My appeal however is no less valid; no less urgent. I ask that anyone that can be of help, if only in the smallest of ways, kindly do so. This campaign, long term, is much greater than current financial hardship for me. It is truly one of hope...of finally finding dynamic, effective solutions to his medical needs. No one should have to suffer in the extreme manner that I now know and I can't help but think that answers exist. We won't stop fighting for my husband to get his life back, but I do need help. If you can find it within your heart to give (NOT MONEY, just time or resources), won't you do so? Email me: [email redacted]
I thank you personally simply for reading this far.
FINDING HELP: Chronic Panic Disorder; Amaxophobia; Agoraphobia
Unexpected panic attacks have no clear external triggers (abuse, car accidents, trauma, grief)
* Psychiatric Service Dog
* Service Dog
*Therapy cat/dog
Transportation to Amen Clinic (Chicago IL or NYC) medical transportation
SDC Functional Neurology [ Neuro Rehab Center ] San Diego Chiropractic Neurology
American Academy of Neurology
American Academy of Neurology and the American Epilepsy Society
Johns Hopkins Hospital in Baltimore, Maryland, is the best US hospital for neurology and neurosurgery care 2020
National Social Anxiety Center
The Anxiety Treatment Center of Greater Chicago
Help stopping the harassment and bullying; we have moved 3 x to get away from bullies and it still continues --
*UPDATE* we moved January 1, 2020 to a social anxiety nightmare of apartment complex. Have been in ER 24 times upon moving to a "quiet environment".
Trying to rule out: Brain Cancer, Lyme disease , Lupus , Menieres Disease , POTS
-head hurts
-feeling of falling backwards
-starring episodes
+ Pain in the chest when breathing deeply (pleurisy)
(always telling him to take slow deep breaths, IT IS PAINFUL)
+ Achy joints (arthralgia)
+ Night sweats and sleep disturbances [Hypnogogic jerks]
+ Other neurological problems
+ Unexplained pain and other sensations
--- have sharp rib and chest pains that send them to the emergency room, suspecting a heart problem --- strange sensations like skin tingling and numbness
+ Mood changes, Heart problems, Sensitivity to light and vision changes
+ Confusion
+ Seizures
+ Dizziness
+ Headaches
Ear-ringing (tinnitus)
Hearing loss
Jaw pain
Inspired by :
Brain on Fire: My Month of Madness by Susannah Cahalan
Dr. Souhel Najjar, MD
Organizer
Alicia Walker
Organizer
Willoughby, OH
