Our Stories

I'm 31-year-old female and have been recently diagnosed with an AC in my brain stem. (Located in the Pontine-Cerebellar Angle) I have encountered uncaring, unprofessional, uneducated or just ignorant medical professionals that collectively agree that AC cannot produce any problematic symptoms.

I did not think my problems/symptoms began until I was around 28 years old. However, after reading the patterns of those with AC I can now take comfort in understanding the turbulence that was associated with growing up.

I had a great childhood, but was often plagued with fears and nightmares. I remained a positive, over achieving, and hyperactive child until around the age of 15 when my life altered completely.

Shortly after my 16th birthday I became increasingly exhausted. I was a competitive and successful figure skater and I was accustomed to waking at 4 a.m.. and skating before and after school. I devoted approximately 40 hours a week to the sport; however, the constant physical requirement seemed to take its toll along with the development and hormonal changes that occur in adolescents. Despite my desire to move forward with my life I was finding that sleeping, crying, screaming and depression were winning the race. My parents felt they were living with a stranger and took me to every doctor on the planet. Each study, exam, and blood draw reported that nothing was wrong. I was stamped with the "Chronic Fatigue Syndrome" mark and told that my old ways were of the past and to rest.

As a teenager I felt increasing unable to relate to my friends. I had never had a problem as a child making and maintaining friendships, but my new personality was not overly friendly in situations where I did not maintain complete control. I went from class president to an isolate. Skating had been taken away, my friends in my opinion had become intolerable and my parents were foreigners that I was forced to live with. Of course, this was not the case at all. I firmly believe that my patterns were associated to the AC. I understand that adolescents is a challenge for all, but let me assure anyone with aeenager with an AC not all of the craziness can be written off as just teenage antics.

I went on with my life. I graduated from high school early and went off to college. Through the years of 17-26, I battled depression, exhaustion, fears, muscle twitches, hyper-flex-reactions, intermittent stabbing but fleeting pain in my legs and abdomen.

I was fortunate that I was able to keep a job and graduate college throughout the turbulence. I believe my ability to achieve these goals was due to the support of my family, husband, and psychologist. I battled with anger, rage, hostility and a constant need to make everything perfect despite the OCD behaviors and my exhaustion. I became increasingly overemotional and reactive.. I would become enraged and within moments I would cry and feel alone and strange.

I felt as if I were fighting with my mind and personality. I understood myself to be a certain way and then at times I would react in an unfamiliar manner. It was like being two people. Some days and months were better than others and then the old rage-filled, hyperemotional and "crazy" personality would appear to make trouble.

Around 28 years old I began getting horrible headaches in the lower back part of my scull. I was also feeling faint when I changed positions or stood for long periods of time. I had always been athletic and was in good shape; however, my heart began to speed up. I became tachycardic with my heart rate nearing 160 beats-per-minute and resting I am still around 90+ bpm. I began to have increasing muscle twitching, forgetfulness, confusion, and tremors. My husband dragged me to the doctors who ran every test on my heart, including having a femoral-arterial-pressure catheter placed in order to study my reaction to position. The doctors formally agreed that they did not know why I was so tachycardic and responsive, but that nothing was wrong with my heart and recommended that I increase the salt in my diet regardless of the fact that my fluid levels were fine. I was told that I could possibly have something called POTS (something orthostatic syndrome). No one ever thought to check my head, despite my husbands many questions and request to just look.

At 30 years old while on vacation I collapsed in our hotel room. I had an episode of extreme vertigo and visual disturbances, electrical surges that went from my head to my abdomen and a feeling of "bugs" dancing under my hair. I was hospitalized and the ER doctor felt my symptoms warranted an MRI to check for MS. Well, after a very long wait 29 hours or so a very rude, uncaring, egotistical neurologist entered my room and said that my symptoms were nothing. That all I had was an arachnoid cyst and that they are symptom less. He assured me that people are born with these and live normal lives. He also said most don't even know they have them. He did not offer any further information.

When I returned home I made an appointment with a neurosurgeon who basically said the same thing. He noticed and commented on my obvious symptoms, mainly the tremors and said there is nothing that can be done. That my AC was small and that I should not have even been told I had this thing in my head. He placed me on Beta-blockers to lower my heart rate, which turned out to exacerbate my Asthma.

Now I was scared. I knew that my symptoms were something. They had now affected my life. Prior, I could work, or go to school, stay home alone, and be as normal as I could fight to be. Now, I felt scared and I was afraid of the symptom events that felt as if shock waves were moving into my heart and upper abdomen. The headaches were horrible and those dancing little things under my hair made me fearful. I did not want to be left alone and my husband was taking off work to stay home with me. I ended up having to move back in with my parents who cared for me because everyone was afraid the shock-type symptoms were mini-seizures and the doctors were not doing anything. My husband spent his time between work and my parents home. My parents spent their time making sure I ate a healthy consistent diet and trying to ease my nerves.

I was at the bottom. In the past I felt hopeless and alone, overemotional and angry; however, this was nothing in comparison to having symptoms that no one could explain and a diagnosis of this thing in my head (the AC) that from what the doctors said could not be causing any of the symptoms and problems.

Was I possessed? Was I crazy? Had I had a psychotic break? Was I just suffering from anxiety? All the questions I had and the doubts were making me anxious, but I did not feel I had a problem with generalized anxiety. Each day one of the symptom events would hit me like a train. My body would tremble (most likely due to the fear) my pupils would dilate, the surges from my head to my abdomen would flare, my head felt alive, sounds and lights were painful.

I felt abandoned by the medical community. Why, was this happening and why could they not help me?

I resorted to my family practitioner. He did not initially say it, but felt that my problems and symptoms were all related to anxiety and depression, even though my psychologist who was seeing me for the past two years did not agree with his assessment.

Let me explain. Having doctors dismiss you causes depression, but only situational depression. My genius of a doctor put me on Ativan first. Did it work? NO! It did not relieve the symptoms I was experiencing. So, he decided to place me on Effexor XR. Did this work? NO! Did this drug contribute to my symptoms; YES! Did the drug alleviate my symptoms, No. Not in the slightest. Has my doctor helped me? No! I am fighting my symptoms with faith. Yes, faith.. In all of this madness, I had the support of my family, friends (yes I have made some again), husband, therapist and God.

I commend everyone who is living with an AC and who struggles forward despite the various symptoms. It is hard. This site has validated that the AC is RESPONSIBLE for my symptoms and it has given me the courage to question and disagree with my treatments or lack thereof. I'm a healthy person other than this thing in my head. I will watch my diet and try and learn as much as I can about how to keep the cysts as small as possible and remind myself when I have a moment of "crazy" or forgetfulness, or the seizure like feelings that it is the AC trying to play with my brain.

Something does need to be done to educate these doctors. They must stop impeding our rights to live feeling healthy, rested, and ready to go out and live in the world. They must work toward understanding and helping to treat the symptoms while they look for a solution that will solve the problem: THE AC..

Best Wishes: Adrianne
I live outside Minneapolis, MN
Phone: 651-653-1075

My experiences against the list of symptoms.

Inability to sleep at night: Began around 8 years old
Pain caused by inflammation: About 8-years-old
Memory/Thinking Problems: Very noticeable around 28 years-old
Headaches: Intermittent around 23 years-old and then started a lot at 28 years-old
IH: ?
Easy to Bruise: Childhood through now. Lots of unknown bruising. I think I heal normally.
Visual Disturbances: First time was at 23 when I got my first bad headache. At 28 I had a lot of visual disturbances and now I am plagued with them. From visual plane shifts, electrical bolts, hard to look out a window and focus on what outside, hard to fix on distance.
Sensitivity to Light and Smells: All my life I was overly sensitive to smell.. The lights became a problem around 28 years old.
Emotional problems: Began as a teenager and carried through.
Social Situation: Began around 16 years old. I now work hard to overcome the confusion.
Irritability: Began with force around 16 years old. Constantly working on controlling.
Sexual: Mostly hypo-sexual. I have had two periods of hypersexual behaviors that lasted about 9 months each. First hyper at 19 years old, then again at 28 years old.
Whooshing sounds: Intermittently throughout life.
Vomiting/Nausea: Only began around 28 years old.
Dizziness: Hate this one! Began around 28 and has not left.
Balance Problems: Began around 28¦hate this one as well. I am former skater that has no balance.
Seizures: Feeling of something like a seizure around 28 years old to present..
Numbness and Tingling: For a long time. Probably began in my 20s. Now it is very distinct in the morning. I thought I was getting arthritis.
Memory Problems: Began noticeably around 28 years old. I wish I could forget this thing in my head and be healed.
Tremors: 28 they began. Still occur.
Fatigue: Terrible around 16 years of age. Continued to through now.
Neck/Back Pain: Mainly neck pain. Again predominately around 28 years old.
Thinking/Concentrating: YES. Disturbingly so. I feel like I'm in a bubble and cant get my mind to engage.
Paralysis: NO
Weakness of Limbs: Yes. Around 28 it began. It is not afflicting me as much right now.
Memory Loss: I don't know.
Short Term Mem/Problems: Yes. Began again around 28 years old. I will ask questions a zillion time and have no clue I had asked them already. I now have to look at a recipe a zillion times while I'm trying to cook. I cannot remember the directions at all.
ADHD: As a child.
Sensitivity to Light and Noise: Very bad all the time around 28. Now I still have problems with both.
Puffy Face: I have inflammation constantly in my face. Around 28 I would wake up with swollen eyes and swollen nose. I thought I had Lupus. Nope.
Hot Flashes: This one began around 30 years old. It happens anywhere. I just get really hot for no reason. It is very uncomfortable

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