Should I keep this specialist appointment?
December 12, 2019 9:54 AM Subscribe
I had a very rocky few months of health last April-September, culminating in a week-long migraine that sent me to the ER. At that time I made an appointment with a neurologist at the headache clinic... for February, their first available opening for a new patient. Since October I've been doing much better. Do I keep this appointment? Details inside.
Me previously, and less previously.
Brief health history run-down:
(I should note that I am a lady-identified person and going to doctors about vague weird head-based symptoms is fraught. So part of this is me being scared that they're just going to laugh at me, think I'm a wimp, think I'm making it up, blowing it out of proportion, etc...)
Me previously, and less previously.
Brief health history run-down:
- Horrible GI badness lasting on and off for about a month and a half last spring. Maybe unrelated to anything.
- As soon as that cleared up, I got a mild head cold and then started experiencing occasional vertigo, fullness in ears, sound of fluid in ears. This persisted for a few weeks. Went to ENT, he found nothing.
- Then I started to experience middle-of-the-night bouts of panic, vertigo, exploding head syndrome (!!), the feeling of falling backwards when shutting my eyes, falling asleep only to immediately wake up in a panic, lasting between 2 and 6 hours. This would happen to me 1-3 times a week. This lasted for a few months, but was so hard to put a finger on, it took a while for me to see a doctor. I saw my GP who gave me an understanding shrug, prescribed propanalol and a referred me to a sleep specialist. I never saw that sleep specialist because...
- ... immediately after that appointment (like, the next week) I had what I guess must have been a migraine. I have no previous history of migraines so it took docs a while to come around to that hypothesis. It was awful, went on for days, I finally got my doc to prescribe me Imitrex. Even after the headache went away I continued to experience lots of weird sensations in my head region (feelings of pressure, weird sinus goings-on, the sensation that someone is touching my temples) for a couple weeks. Since then I have not had nearly as severe of a headache, but I have had a few, on the order of once or twice a month and the last a few hours rather than days. I track them with an app. I will now take an Imitrex if the Tylenol I take at first is ineffective after an hour. I'm better at managing the symptoms. I still have weird (not painful) sensations in my temple area (I had my dentist do a full jaw x-ray to rule out TMJ). But that is not impacting my quality of life, I'm just used to it.
- I've also had a couple bouts of the weird middle-of-the-night vertigo/panic thing since September. For that I take a propanalol which is maybe effective? Idk it's hard to say with this kind of thing that the drug you took made it go away vs. it would have just gone away on its own. But those episodes have been way way fewer and far between compared to the summer, and milder. Given the headache situation I have wondered whether these were perhaps vestibular migraines
(I should note that I am a lady-identified person and going to doctors about vague weird head-based symptoms is fraught. So part of this is me being scared that they're just going to laugh at me, think I'm a wimp, think I'm making it up, blowing it out of proportion, etc...)
I think you should keep this appointment. It’s great that your symptoms are better controlled now, but as you’ve seen it can take months to get a specialist appointment. The provider ar a migraine clinic has seen a wide spectrum of migraine presentations and can help narrow down a diagnosis and treatment plan for you. It might be that you’ll be told there’s no need to follow up more than annually unless your condition worsens, but WOW is it useful to be an already-established patient at a headache clinic.
I’m also a lady, and a nurse. Neurologists are usually pretty thoughtful and careful in my experience! I bet you’ll have a good, productive visit. Sending best wishes!
posted by little mouth at 10:12 AM on December 12, 2019 [5 favorites]
I’m also a lady, and a nurse. Neurologists are usually pretty thoughtful and careful in my experience! I bet you’ll have a good, productive visit. Sending best wishes!
posted by little mouth at 10:12 AM on December 12, 2019 [5 favorites]
I agree with bilabial. From your description it does sound worth it to me. Copy what you've written here, and any other details that you can remember, and take that with you to your appointment in February. Also, I would call your GP and the ENT and see if you can get your records sent to the neurologist. Usually this is pretty easy to do.
posted by backwards compatible at 10:13 AM on December 12, 2019 [3 favorites]
posted by backwards compatible at 10:13 AM on December 12, 2019 [3 favorites]
February is very far away, I don't see any reason to possibly cancel until it's almost time to go. Your symptoms could possibly get worse over the next 2 months and then it would be 4 more months for an appointment. You would only actually be inconveniencing the doctor if you cancelled the same day or right before, from their side you handing in a new patient form doesn't take them much time at all and you canceling 8 weeks out or 1 week out are exactly the same. So definitely don't cancel now.
If I were you and had the symptoms described, I would definitely go to the appointment. If my symptoms were completely gone a week before I would call their office and ask them if i should cancel, and they would probably tell me to go anyway. I might cancel regardless if money was a concern. Neurology symptoms are very complicated and confusing and doctors are used to patients having symptoms come and go, in my experience they are much less likely to think you are being too needy than a general practitioner or surgeon.
posted by JZig at 11:05 AM on December 12, 2019 [4 favorites]
If I were you and had the symptoms described, I would definitely go to the appointment. If my symptoms were completely gone a week before I would call their office and ask them if i should cancel, and they would probably tell me to go anyway. I might cancel regardless if money was a concern. Neurology symptoms are very complicated and confusing and doctors are used to patients having symptoms come and go, in my experience they are much less likely to think you are being too needy than a general practitioner or surgeon.
posted by JZig at 11:05 AM on December 12, 2019 [4 favorites]
Don't take any chances with your brain meat. If they are dismissive & unhelpful that's them being bad at their jobs, and not a reflection that you did anything wrong for going to see them. They should understand that symptoms can change in the long time it takes to get an appointment. You should still at least be able to rule out anything serious that can be treated at the root.
It might be a good idea to get a notebook and document the history you describe here and then anything else that happens including when you're taking your meds and any other dr appointments. That will set you up to have a productive first visit with them even if nothing has happened in awhile.
posted by bleep at 11:43 AM on December 12, 2019 [2 favorites]
It might be a good idea to get a notebook and document the history you describe here and then anything else that happens including when you're taking your meds and any other dr appointments. That will set you up to have a productive first visit with them even if nothing has happened in awhile.
posted by bleep at 11:43 AM on December 12, 2019 [2 favorites]
I am avoidant to the point of pathology, and I say you should go.
(I also had some terrible bouts of vertigo this past year that has made me a little more...proactive in this regard.)
posted by notsnot at 11:52 AM on December 12, 2019 [1 favorite]
(I also had some terrible bouts of vertigo this past year that has made me a little more...proactive in this regard.)
posted by notsnot at 11:52 AM on December 12, 2019 [1 favorite]
I would not cancel the appointment at this time. I would make the decision a few days before the appointment. Fill out the forms. It does not cost anything until you have the actual appointment.
Even if you feel 100% right before the appointment, I would go unless the cost of going is prohibitive. Why not hear what a so called expert thinks?
posted by AugustWest at 1:26 PM on December 12, 2019 [3 favorites]
Even if you feel 100% right before the appointment, I would go unless the cost of going is prohibitive. Why not hear what a so called expert thinks?
posted by AugustWest at 1:26 PM on December 12, 2019 [3 favorites]
Maybe basalganglia will weigh in? A MeFi neurologist I've found has helpful, practical, and nuanced advice.
FYI if any specialist will listen to you, it's a neurologist. They specialize in vague symptoms and love puzzles. They, along with rheumatologists, are the braniacs of medicine.
posted by citygirl at 3:22 PM on December 12, 2019 [4 favorites]
FYI if any specialist will listen to you, it's a neurologist. They specialize in vague symptoms and love puzzles. They, along with rheumatologists, are the braniacs of medicine.
posted by citygirl at 3:22 PM on December 12, 2019 [4 favorites]
Go and do the thing. MRIs are not awful and it will make you more sure that your brain is okay. (Chronic migraines here.) Sumatriptan during a really bad migraine can be prescribed and provides fast relief. Look after yourself.
Also, if you are over 40, look into symptoms of menopause. My sister had huge panic attacks and heart palpitations at night. I, personally, just expect to have hot flashes till I'm 90, like our mother. Being female is basically going from one crappy thing to another.
posted by Enid Lareg at 4:23 PM on December 12, 2019 [1 favorite]
Also, if you are over 40, look into symptoms of menopause. My sister had huge panic attacks and heart palpitations at night. I, personally, just expect to have hot flashes till I'm 90, like our mother. Being female is basically going from one crappy thing to another.
posted by Enid Lareg at 4:23 PM on December 12, 2019 [1 favorite]
Best answer: D'aww. Thanks citygirl! (I've had a rough day at work, that little bit of kindness means a lot.)
But yes, please keep this appointment! I find that a lot of things get called "migraine" that may or may not actually BE migraine, so it's helpful to have a subspecialist weigh in to (1) make sure this is the right diagnosis and (2) help you come up with a personalized treatment plan. For women, menstrually-related migraines are absolutely a thing, with their own Very Special Diagnostic Criteria, and there are better ways to treat them than sumatriptan. (This is not medical advice! Always speak with your own doctor!) The tracking app you're already doing is awesome, please show it to your neurologist and I can almost guarantee they will do a little happy dance in the clinic -- we beg people to use trackers/logs and am always so pleased when they do because then we have data instead of imperfect recall of what things were like three months ago vs today. If they are an old dude, maybe not a visible happy dance, but I promise they'll be happy-dancing inside.
Heads up (sorry) that if you're over about 30, you may get an MRI. Ask for squishy earplugs during the scan, as the machine is pretty loud. No metal in the scanner room, so make sure you have someone with you who can hold on to your valuables like any jewelry/rings, and wear a wirefree bra.
Hopefully, this'll be a straightforward "Hi Doc, nice to meet you, I'm here to establish care" type visit and you'll continue to do well and either see the neurologist as needed, or once a year for med refills/brief check-ins. Getting an initial visit with a headache specialist takes forever because there are so few of them, but once you're established, follow-ups are a lot easier to arrange. Best of luck!
posted by basalganglia at 5:50 PM on December 12, 2019 [4 favorites]
But yes, please keep this appointment! I find that a lot of things get called "migraine" that may or may not actually BE migraine, so it's helpful to have a subspecialist weigh in to (1) make sure this is the right diagnosis and (2) help you come up with a personalized treatment plan. For women, menstrually-related migraines are absolutely a thing, with their own Very Special Diagnostic Criteria, and there are better ways to treat them than sumatriptan. (This is not medical advice! Always speak with your own doctor!) The tracking app you're already doing is awesome, please show it to your neurologist and I can almost guarantee they will do a little happy dance in the clinic -- we beg people to use trackers/logs and am always so pleased when they do because then we have data instead of imperfect recall of what things were like three months ago vs today. If they are an old dude, maybe not a visible happy dance, but I promise they'll be happy-dancing inside.
Heads up (sorry) that if you're over about 30, you may get an MRI. Ask for squishy earplugs during the scan, as the machine is pretty loud. No metal in the scanner room, so make sure you have someone with you who can hold on to your valuables like any jewelry/rings, and wear a wirefree bra.
Hopefully, this'll be a straightforward "Hi Doc, nice to meet you, I'm here to establish care" type visit and you'll continue to do well and either see the neurologist as needed, or once a year for med refills/brief check-ins. Getting an initial visit with a headache specialist takes forever because there are so few of them, but once you're established, follow-ups are a lot easier to arrange. Best of luck!
posted by basalganglia at 5:50 PM on December 12, 2019 [4 favorites]
The imitrex thing did not work for me and it only works a small percentage of the time for those I know who also take it. The nasal spray version has a higher success rate. I personally would keep the appointment just to rule out any tumors
posted by The_imp_inimpossible at 1:19 PM on December 13, 2019 [1 favorite]
posted by The_imp_inimpossible at 1:19 PM on December 13, 2019 [1 favorite]
This thread is closed to new comments.
My biggest argument for going is that the new patient appointment takes so long to get because they require a longer chunk of time. If/when these symptoms happen to you again, being an established patient makes it much easier to get seen by the specialist to have the issue addressed.
The specialist also probably knows about additional testing or interventions, and may even have insight into prodrome that you may not be recognizing as connected. You will probably get a lot of questions.
My next argument for going to the appointment is that "much better" is not the same as "all better." This sounds like it may still be interfering with your "activities of daily living" (make a list of what these headaches keep you from doing, and how often, because that's a huge indicator for the docs).
I lied. The biggest reason you should go see the big guns specialist is because you are worth it. Your health and comfort are important. If the first doc you see doesn't take you seriously, request a transfer to a different doc or practice. This problem is real and deserves full attention.
Sending you internet hugs. I hope this gets resolved for you.
posted by bilabial at 10:07 AM on December 12, 2019 [25 favorites]