Those of us that know Tamara well, are familiar with her spiritual gift of hospitality. But quickly over this past year, Tamara’s health has declined to the point where she is struggling to take care of herself. It has now recently become impossible for her to work at the job she loves, and she was the primary financial support to her family. Tamara has spent eight years working at and developing her incredible skills as an horologist, but is forced to take a hiatus for an unknown amount of time while she waits on specialists and tests, hoping for answers. This has left her and her wife, Dasha, temporarily in a financially uncertain place. They also have new medical and travel expenses to plan for as they seek the help of specialists.
Tamara’s medical history is described below. If you can, please take a moment to read it, and share this with anyone who can help.
******************************************
In September of 2021, Tamara collapsed at work with major abdominal pain, landing her in the ER. This began her confusing and frustrating medical journey of the past several years. After nearly a year and numerous ER visits, doctors, specialists, and lots of tears, they finally landed on her first diagnosis, Ehlers-Danlos Syndrome, or EDS. EDS is a painful condition that affects connective tissue, causing joints and muscles to fall out of place. This was followed by the discovery of other conditions. They found out that she has Postural Orthostatic Tachycardia Syndrome (POTS) which makes her more prone to dehydration, dizziness, and fainting. In addition to that, she has Mast Cell Activation Syndrome (MCAS) which makes her body have allergic reactions to many different common foods.
In 2023, Tamara started having daily migraines. Pryor to this, headaches weren't common for her. Over the counter medication did nothing to alleviate the constant migraine, and prescription medicines worked only short term. The migraines and aura became so bad that she would often see double or become for a short time completely blind.
Not long after the migraines started, Tamara started to have drop episodes, and then she started having seizures.
On her birthday 2024, Tamara had a seizure so bad and so long Dasha had to call an ambulance. They searched for answers for about a year until they finally got in with a neurologist in Oklahoma City who finally diagnosed Tamara with Functional Neurological Disorder, or FND. FND causes the seizures, which we now know are non-epileptic. They can be triggered by light, sound, movement, strong emotions, or fatigue. The neurologist prescribed CBT, which is the most common treatment for FND. Tamara has been on this treatment for about a year.
Starting in January of this year, Tamara started experiencing severe fatigue, which caffeine or medication have not been able to touch. This fatigue is so severe that she has fallen asleep during conversations, short car rides, while trying to work, cook, eat, watch TV etc. Tamara had to take a minimum of two one-hour naps a day just to keep from falling asleep at inappropriate times. Once this new symptom began, it became impossible for Tamara to do anything beyond resting after work or even after shorter events or activities. Dasha has taken over all household tasks for Tamara since that time, while continuing to be Tamara’s caregiver during the hours when she is able to be home from work.
Tamara did a sleep study in April of this year which yielded negative results for sleep apnea. She continues to struggle with fatigue on a daily basis. Added to this, her FND has been getting worse, and it has become a struggle getting the seizures under control. She has also been having nightmares every night, which have at times triggered the seizures. This is such a severe problem that her doctors have prescribed her several different nightmare medications, but none have caused them to stop.
Her neurologist prescribed a monthly medical injection to help with the migraines which, along with two other medications, have had some success. While this has helped significantly with the migraines, the FND symptoms and seizures have not changed for the better. Her Primary Care Physician has tried quite a few different medications to treat Tamara’s FND, with no success.
Her FND is to the point where it is impossible to work. Her doctor now recommends they find a FND specialist to work with. As a result, Tamara and her medical team are searching locally but also out of state for specialists versed in her various issues.
