Migraine overview
A migraine is a headache that can purpose intense throbbing suffering or a pulsing sensation, typically on one facet of the head. It's often accompanied with the aid of nausea, vomiting, and excessive sensitivity to mild and sound. Migraine assaults can closing for hours to days, and the discomfort can be so excessive that it interferes with your each day activities. For some people, a warning symptom viewed as an air of secrecy takes location until now than or with the headache. An air of secrecy can consist of visible disturbances, such as flashes of mild or blind spots, or different disturbances, such as tingling on one thing of the face or in an arm or leg and concern speaking.
My experience-Medical Mystery
Hi all! I'm posting this post out of desperation for my sister, hoping that some of your experiences can help us fill in the gaps on what are some very weird "migraine" symptoms for her-- I'm not even sure if it's migraines at this point.. I'm going to write a very detailed history and post, and I appreciate any feedback or contributions you can provide! Sorry in advance for length, we are pretty desperate!
My sister is 30 years old. My first memory of her having a migraine was age 20. She suddenly got aphasiac, said her limbs felt heavy, her eyes went heavy and she starting speaking really slowly, confused, etc. Off to ER since so stroke-y and first time. MRI normal, she improved organically. Neurology referral, diagnosed with sporadic hemipelagic migraines. When prompted, she kind of felt like she had a flash of light earlier in the day (aura?). Numbness and heaviness in limbs was on both sides, arms and legs. They gave her Maxalt, she would take one or two doses when she had an episode and then would slowly improve, saying she felt kind of "stupid" for a few days after. I don't remember how often they would happen, but it was liveable. She rarely had actual headache pain, but had regular fairly severe headaches at other times. This continued for several years, very similar patterns. Then one day she decided to try botox.
Not to scare anyone that tried/wants to try botox for migraines (I know it can be life changing positive for many) but she had an intense adverse reaction. Within about an hour or two of getting the injections she starting having really intense, like cyclical panic attacks. (She had no previous history of anxiety or panic).It would come up in waves and she would peak at this horrific, suicidal point that was awful. She was dismissed in ER and by docs as unrelated to botox and just had a mental break. Another MRI and and EEG were normal. Needed xanax to survive. My parents and I took care of her while this lasted and she was not able to work and couldn't be left alone. It started to improve around the 3 month mark (as the botox started to leave her system I imagine) and was much improved by the 4th month. Very grueling time for us as a family! By 6 months she was free of these episodes.
However she continued to have her SHMs occasionally. Her doctor tried topomax as maxalt wasn't fully alleviating and frequency was getting challenging. She basically reacting just like the botox to the topomax. "Felt crazy" Panic attacks, suicidal ideation. Went away when topomax was out of her system.
Sometime later, she got off hormonal birth control as she was lightly considering trying to get pregnant in the next few years. No one had ever mentioned hormonal birth control and migraine connections. After about 3 months of being off BC she didn't get another migraine episode again. She was great for about 18 months, at which point, feeling good, she got pregnant.
She did not have any episodes the entire pregnancy, or for 3 years after giving birth. 18 months of post partum she breastfed. Basically thought she was cured.
About 4 months ago (3+ years post partum) she had an episode. (At this point it had been about 7 years). The episode came on after doing a house painting project in evenings in addition to her day job (doing hair)... we thought maybe after 12 hour days with florescent light, hair dye, and then into an old house with paint fumes for 4-6 more hours and low sleep, that really that could do it for anyone!
It was a Friday and symptoms were tolerable (heaviness, aphasia, tingling in the mouth and other strange sensations.. no aura, no headache). She didn't get a new script of Maxalt til Monday. Didn't help. Took a second maxalt. Didn't help. Went to Urgent Care. Urgent Care suggested a new drug, Ubrelvy. Took Ubrelvy. Helped. But then about 8-12 hours after the Ubrevely she basically turned into a mess, similar to previous botox. Crazy emotional symptoms, angry outbursts, crying, hysteria, panic, suicidal ideation. Took a second Ubrelvy thinking it was a migraine manifestation and it got better because surely the previous Ubrelvey was mostly 1/2 lifed out of her system? . But about 8 hours again, same cycle. Took xanax. Felt a little better. She did this cycle for a week then started to feel better eventually.
Unfortunately she hasn't gone 10 days of normal without having another "episode" in the last 4 months. 2 months ago she had to take FMLA from her job. She's been trying hard to get better, but we're all starting to wonder about this original Sporadic Hemiplegic Migraine Diagnosis. Sooooo here are some additional potentially relevant bits of information, and some questions for you all: (thanks for staying with me so far!)
1) She has seen both her Primary Care and Neurology since this started again. They basically said post partum hormonal changes might have just restarted the pattern. The offered a daily beta blocker to try and prophylactic. She tried that, but once doses increased she got sooo sleepy and dizzy she couldn't tolerate it.
Neurology did a cognitive exam and noted "mild cognitive impairment " and referred her to neuropsych but they're 6 mo out booking. Otherwise just said its likely just the manifestations of the SHM and "sorry here's more Ubrelvy."
She is not on birth control.
Additional medical issues that have come up the last 2 years-- I think shes also on her way to a PCOS diagnosis.. shes got insulin resistance developed post partum, ovarian cysts.. so something has clearly gone out of whack. This is being handled separately from endocrinology, no real concrete answers yet.
She's also starting having lots of kidney stones so she's on a diuretic and drinks shit tons of water. Low chemical exposure on this FMLA break, and eating really healthy, natural food, reducing stress. Wearing "pink light" glasses under florescent lights.
Question time!
I've become suspicious of the SHM diagnosis. It doesn't present on one side (it's heaviness on all limbs), 100% of the time since the new episodes there has been no aura, and very rarely headache. Basically it's heaviness, aphasia, an "out of body sensation," and she says she just can't connect words and meaning. Like she is in her house but doesn't feel like she's there. Doesn't remember afternoons. Mood swings. Doesn't know where she is. I feel like she's describing like a TBI tbh, but she has no history of TBI.
The Ubrevely DOES help for an hour or two, but I wonder if these panic/suicidal ideation "crazy" feelings she has later are connected to the original " migraine episode" or if they are some kind of comedown or rebound from the Ubrelvy, considering her weird reactions to topomax and botox. She describes herself as having "windows" of normal when on Ubrelevy, but then descends again or has this almost manic episode following. Sometimes she's stuck in this cycle for a week.
We're just not sure what to do. SHM is already so rare, to have such a rare presentation of (without aura, or headache, or 1/2 side symptoms...) it just .. I don't know.
I know its unlikely anyone solves this mystery on this thread, but I'd love to hear ANY thoughts you have (specialists to see, therapeutics to research, or simply things that sound similar/dissimilar to your experiences for us to sift through. Thank you so much in advance for staying with me through this novel!
EDIT: Also Neurology most recently told us Maxalt is not longer recommended in the treatment of SHM due to fear of stroke, so she has not taken another maxalt since that first episode 4 mo ago, where she took 2 but didn't improve.
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