- CASE FILE
Head pressure that causes intractable pain, starting at the age of 15. Symptoms usually get worse as the day goes on; due to weather changes
ABOUT THIS CASE FILE
At the start of my issues, I started with a few symptoms but developed more symptoms. All my symptoms started around April 6, 2016 while I was 15 years old. I have had over 5 MRI's/MRV's/MRA's of my head, cervical, thoracic, and lumbar spine, with and without dye. My neurologist diagnosed me with chronic intractable daily headaches with auras. "Auras" I experience are tunnel vision, occasional vision loss, flashing lights, and numbness and tingling in my hands, arms, and face. The pain began on the very top of my head; as time went of the pain started to move and change the type of pain I experience.
I have had every blood test done and repeated. Normal or Negative: CBC, ammonia levels, AST, ALT, Lyme's disease, myasthenia gravis, and etc.
The treatments I have tried include: amitriptyline (100 mg) [* and **], nortriptyline [*], topiramate [**], gabapentin (900 mg) [*], depakote (1,000) [* and **], propranolol [***], duloxetine [* and **], verapamil (80 mg) [* and **], several Medrol Dosepak [* and **], Toradol [*], tramadol [* and **], maxalt [*], Tylenol #3 [*], Tylenol #2 [*], over-the-counter painkiller [*], and have had 2 migraine cocktails [*]. I have also had medical marijuana to help the pain. However, the marijuana did help on the daily pain, when it came to the extreme pain that was caused by the weather, it did nothing. What is weird, is that no matter how much I had taken of marijuana, I didn't feel anything or felt very little until the next day or after the storm passes.
*Drugs that didn't work or stopped working
**Drugs that had exessive side effects
I have also had Botox done twice, tried the Cefaly [*], physical therapy twice, chiropractic often, pain therapy [**], alternative (intagrated) medicine, acupuncture at 2 different places (with different qualifications), wear blue-blockers, been to the Mayo Clinic in Rochester, Minnesota, a sleep study [****, and had done exercise programs.
*So painful couldn't stand the treatment
**Involved therapy, avoiding painkillers or medications, physical therapy, and pain management
***Involved Genova testing, taking specific vitamins/minerals/amino acids/etc, going off of Depo Provara for progestrone (went on it for heavy periods after everything developed), and Traditional Chinese Medicine (acupuncture); the acupuncturist I met with would look at my tongue and discussed how I was feeling (he was curious about my tongue, which was white coated often but didn't have much of an answer)
****Wasn't helpful, but my sleep was fine, just mild sleep apnea while sleeping on my back
The Mayo Clinic wasn't helpful in anyway. The doctor I saw came in the room and my grandma was messing with my hair because it helped me calm and she likes twirling hair. Within 2 minutes of being in the room, he asked why she was playing with my hair. After we told him that it helps calm me, and explained he thinks my grandma is coddling me. My grandma has been the only person in my family who understands what I am going through since she had similar issues (everyday pain and sickness) however, she developed it hers just before I was born, and she had these pains just over a year and had gotten better after 6 months on topamax. My other family members don't understand how it feels. The doctor gave me little to no information of what and/or how to treat what is wrong with me. Without saying it, the doctor thought my grandma was coddling me too much, feeding my pain and causing psychological pain. This doctor wasn't the only doctor to question if my pain and symptoms were real. I eventually had therapy (EMDR) done to prove that my pain was NOT psychological. After a good 6 or 7 months of EMDR, my therapist confirmed my pain wasn't caused by emotional (distress) or underlying emotional trauma from my childhood.
Every-so-often, I would develop what I could only decribe as episodes of increased pain and symptoms. This would include extreme 'bouts of extreme fatigue (making it difficult to stand and do much of anything other than sleep), my appetite was pretty much absent (lost weight), my back (particularly on the sides of my spine) became extremely painful, and my depression increased dramatically. The pain in the lower part of my back would be in the shape of a triangle, point up. It was unbarable in that triangle. These episodes would last a week to 3 months.
Different specific pain areas and symptoms:
When the pain is on the back of my neck, I would develop extreme nausea and throw up an exessive amount. At this location, I cannot sleep, medications (sleep aids, pain killers, and prescription sleep aids) don't work [even I don't feel the side effects of the medications], and sensitivity of light and noise. This usually happens when the weather fluctuate (storms and with a long duration of dry or wet days).
When the pain is on my face, it feels worse than any other locations of my head. It doesn't make me sick as the pain would if it were on my neck; but the pain feel like my eyes are going to explode and becomes sensitive to light and noise. This pain can happen at any second and hits like a brick wall.
*The pain can have any combination and will change at any moment; making it hard to understand patterns.
In Janurary of 2019, I tried to explain symptoms I had been developing since the last time I saw him (over a year). These symptoms included the barametric pressure headaches [*], what I would describe as hallucinations (seeing shadows frequently), forgetfullness, spasms and jerks, and drooping of my right eyelid. After this meeting, he decided to put me on Diamox as an idea he explain would be a long shot. The first day of taking the Diamox, the pain disappeared until the afternoon. I felt amazing the first week, then, I began to feel the effects of the Diamox: heat/humidity sensitivity, dizziness, lightheadedness, dehydration, fatigue, and other side effects. It would take over 6 weeks before I would be at the full dose. After 6 months of seeing if the Diamox would reset my brain, I was tired of the side effects; the pain improved, but we didn't think the medication would help much more. The dehydration and heat intolerance was becoming problemsome since I will be going to college in the Fall of 2019. My neurologist decided that I could have idiopathic intracranial hypertension (IIH), so he gave me several options based on the idea if we could confirm the diagnosis I could have surgery. The options included: being evaluated by an ophthalmologist for papilledema, or go off the Diamox for 6 weeks and have a spinal tap; if these were to show increased cranial pressure, then I would be sent to a surgeon. I went with the first option, and I didn't have any evidence of papilledema, due to this, he doesn't think I have IIH. I am pretty much back to square one: no diagnosis and possible treatments that cause extreme side effects. While at the ophthamologists, I asked about my drooping eyelid. He couldn't saw for sure but the eyelid wasn't really drooping as my eyebrow to lower than my left side of my face. (Note: the drooping becomes more apparent to my drooping of the right side of my face. The muscles don't really work or feel the same as the left side. My neurologist ruled out myasthenia gravis with a blood test.)
*My neurologist had dismissed it before but listened this time because we pretty much ran out of options and we became desprate
Note: after feeling how I felt with/without the pain, I have 2 completely different personalities. The one with pain (mainly the pain that is above 3 out of 10 on the pain scale) is extreme moodswings and negative thinking/pestamistic. While having the lesser degree of pain and painless, I am the opposite of my pain alterego. It feels like whatever is causing my pain, it is causing a physical/chemical change that is literally changing my personality.
Since these symptoms got worse, my appetite is poor to non-existint. This may be inheirated by my father, as my brother and sister have the same issue of poor appetite. However, I am the only one on an appetite stimulant, and I am at a weight of 135 (I do not feel healthy and strong at this weight)[*]. I am very suseptable to medications with side effects of weight loss and loss of appetite.
*Original weight was 155 pounds
[Heights: Dad - 6'5" Brother - 6'3" Sister - 6'1/2" Me - 6'0"]
My grandma and I do NOT believe my pain is involved with migraines because it doesn't feel like the migraines I would get before this had happened. It feels like pressure, like sinus pain, however, in isn't allergies causing this. I do have a history of migraines that started at the age of 12; my father, grandma, brother, and mother have history of migraines and headaches as well. My mothers' mother had MS, but I was checked for MS at the beginning of this whole ordeal. History of tumors and cancers on my fathers' side and grandfathers side as well.
I want to be a scientist and not knowing what I have is killing me. I almost always need an answer to things: specific information (what is going on my body; is this all connected; why the pain ever go away; will I be able to live my life?). I feel as if I am the one, out of my neurologist and I, doing the most work. This work includes possible tests to be done to see about determining if it is possible to be cause of my issues; narrowing my possible disease/disorder/syndrome could be.