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Today I went to my neurologist. They took me on-time, no wait at all. However, I was in the appointment for over an hour. They tried to get the labs from my endocrinologist. The nurse practitioner was a bit annoying... She insisted I had low cortisol because I had low cortisol from my March 2012 lab. I have high cortisol according to the past couple of months. She said I couldn't have a pituitary tumor because none showed on my summer 2012 MRI. I asked the endocrinologist the same question and she said pituitary gland tumors don't show on those kinds of MRI's -- she has to do a "different, deep pituitary MRI." The nurse practitioner asked if I drove (no), if I worked (no), if I cooked (no), and then she asked "Well, what do you do?" to which I didn't answer. Because I've had 3 seizures (1 tonic-clonic in my sleep, 2 complex-partial) seizures since late November, that means my seizures aren't completely controlled (though it's certainly good enough for me), so the nurse practitioner wanted to add Keppra to my Topamax. At least if they had to add a drug I'm glad it would be that one. I've been on it before for Bipolar and I don't get "Keppra rage." The doctor disagreed, though, and just increased me to the maximum amount of Topamax. He also tested my blood levels of Topamax today (which I did right after the appointment, in the hospital). I guess they were also concerned that I was having more seizures than I was aware of; it is possible, given I had several seizures on my 24 hour eeg and I wasn't aware of any of them.
The nurse practitioner *did* say that if I have a pituitary gland tumor, she can't guarantee that after it's treated my seizures and migraines will go away. That's okay, but the fact that *maybe* they will is encouraging! The fact that once the hypothetical tumor is treated I might be much more emotionally stable is even more encouraging and exciting! And even if they don't find a tumor, I will still be treated to lower my prolactin, which should greatly help me emotionally. As for the cortisol, that's still all up in the air. I still think they are testing me for Cushings and I don't know how long that will go on for or what will happen if I have it. That's scarier territory. If I have it it's in the early stages, whereas my prolactinoma (tumor secreting tons of prolactin) might have been around since puberty, just getting worse and worse, adding more and more symptoms. One of the major symptoms is irregular periods, and my periods have been rare from the start. My bipolar, anxiety, and seizures (not tonic-clonic) began around age 19. My libido and ability to orgasm ended in early 2005. Sex became more painful in late 2008. I gained weight suddenly late 2011 and my depression worsened then. I attempted suicide spring 2012. My daily migraines, fainting, tachycardia, tonic-clonic seizures, and weakness began spring 2012. I gained more weight suddenly in late summer/early fall 2012. Sex became even more painful. My vision sometimes started getting more blurry and I started getting headaches sometimes, though not migraines. I grew more weak in 2013, back like how I was in the summer. Since going off my birth control pills in mid-February to test my hormones I have not gone back on it and have not had my period. That was another dumb question asked in the neuro's office "Why aren't you getting your period?" I'd already told them my prolactin is sky-high. My body thinks it's majorly pregnant and/or nursing!
These are all my problems a prolactinoma might account for:
-Depression
-Anxiety
-Hostility
-Irritability
-Suicidality
-Irregular periods/rare periods/amenorrhea
-Infertility (though I want to keep that! No babies for me, thanks!)
-Anorgasmia
-No libido
-Vaginal dryness
-Painful sex
-Vision problems
-Migraines
-Headaches, in general
-Hot flashes
-Cold sweats
-Seizures
-Memory problems
-Bad decision making
-Over-sensitivity
-Physical weakness
-Needing 12+ hours of sleep a day
-Fatigue
-Fainting
-Collapsing
-Dizziness
-Nausea attacks
-Weight gain
-Loss of body hair
-Joint pain, bone pain, and muscle pain
-Hypothyroidism
The one symptom I *don't* have, that my endocrinologist was shocked at, given my prolactin levels, was lactation. I have never lactated, which is partly why I was so shocked to find out my prolactin was so high and wreaking havoc on my mind and body. I remember getting the test order and seeing prolactin on it and thinking "Prolactin? Why is she testing *that?* This is dumb."
So any or all of these things might get better with my prolactin levels controlled! For all I know, I'm not even bipolar! I was stable as a rock, just very sensitive, until I hit 19 and everything fell to pieces!
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The nurse practitioner *did* say that if I have a pituitary gland tumor, she can't guarantee that after it's treated my seizures and migraines will go away. That's okay, but the fact that *maybe* they will is encouraging! The fact that once the hypothetical tumor is treated I might be much more emotionally stable is even more encouraging and exciting! And even if they don't find a tumor, I will still be treated to lower my prolactin, which should greatly help me emotionally. As for the cortisol, that's still all up in the air. I still think they are testing me for Cushings and I don't know how long that will go on for or what will happen if I have it. That's scarier territory. If I have it it's in the early stages, whereas my prolactinoma (tumor secreting tons of prolactin) might have been around since puberty, just getting worse and worse, adding more and more symptoms. One of the major symptoms is irregular periods, and my periods have been rare from the start. My bipolar, anxiety, and seizures (not tonic-clonic) began around age 19. My libido and ability to orgasm ended in early 2005. Sex became more painful in late 2008. I gained weight suddenly late 2011 and my depression worsened then. I attempted suicide spring 2012. My daily migraines, fainting, tachycardia, tonic-clonic seizures, and weakness began spring 2012. I gained more weight suddenly in late summer/early fall 2012. Sex became even more painful. My vision sometimes started getting more blurry and I started getting headaches sometimes, though not migraines. I grew more weak in 2013, back like how I was in the summer. Since going off my birth control pills in mid-February to test my hormones I have not gone back on it and have not had my period. That was another dumb question asked in the neuro's office "Why aren't you getting your period?" I'd already told them my prolactin is sky-high. My body thinks it's majorly pregnant and/or nursing!
These are all my problems a prolactinoma might account for:
-Depression
-Anxiety
-Hostility
-Irritability
-Suicidality
-Irregular periods/rare periods/amenorrhea
-Infertility (though I want to keep that! No babies for me, thanks!)
-Anorgasmia
-No libido
-Vaginal dryness
-Painful sex
-Vision problems
-Migraines
-Headaches, in general
-Hot flashes
-Cold sweats
-Seizures
-Memory problems
-Bad decision making
-Over-sensitivity
-Physical weakness
-Needing 12+ hours of sleep a day
-Fatigue
-Fainting
-Collapsing
-Dizziness
-Nausea attacks
-Weight gain
-Loss of body hair
-Joint pain, bone pain, and muscle pain
-Hypothyroidism
The one symptom I *don't* have, that my endocrinologist was shocked at, given my prolactin levels, was lactation. I have never lactated, which is partly why I was so shocked to find out my prolactin was so high and wreaking havoc on my mind and body. I remember getting the test order and seeing prolactin on it and thinking "Prolactin? Why is she testing *that?* This is dumb."
So any or all of these things might get better with my prolactin levels controlled! For all I know, I'm not even bipolar! I was stable as a rock, just very sensitive, until I hit 19 and everything fell to pieces!
-
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