You may recall from my last visit to the migraine doc (a neurologist who specializes in headaches) that she’s tried just about everything and suggested that I look into studies. Well, she hasn’t given up.
I saw her last week and it was a long visit. I am always impressed when I go there that she never seems to be in a hurry. I never feel like she is rushed to get to the next patient. It’s amazing really, this is a doctor who is backed up over 3 months for an appointment, you know she’s busy. During our visit, I was having slow vertigo, which made it difficult for me to follow everything she was saying. I’m still asking Stuart some things, unfortunately he doesn’t seem to have much of a memory. He must have been worried about me. I did understand most of the visit, there are just little things I remember her saying that I wish I remembered. Like she said that Melatonin was good for something other than sleep, but we can’t remember what…….well I just looked it up and it can help with a bunch of things, including migraines. Who knew? I don’t know if that’s what she said, but I’ll keep taking it. It helps fall asleep anyway.
She is concerned that some of my migraines may be caused because my CSF (Cerebrospinal Fluid) is too high again. I have fluctuating CSF, it tends to run high. The migraine medications that I’m on help keep it lowered. She felt that we need to put me on a drug that will increase this effect. So I was taken off Topamax and put on Diamox. I’ve been on Diamox before, my CSF pressure did not remain stable on it either, we’ll see what happens this time.
She did look in my eyes, it was difficult because I had a bit of nystagmus going on at the time so my eyes were jumping, but she saw that it was bulging a little bit back there, a sure sign that my pressure is up.
The weird things is, if I have high CSF I should have a worse headache when I lie down. Sometimes I have a bad headache when I wake up but often I don’t. When I have a bad headache, it doesn’t get better when I lie down. hmmmm. Makes me wonder. But then there’s the eye thing, she did say it was a slight bulge. Well I’m just not convinced and I don’t want this drug to make my pressure go too low. It’s a very strong diuretic. I’m peeing a lot, but my body will get used to it I’m sure. I’m a little more light headed, but that could just be me, but it could be the drug. I feel very confused, this one has bothered me a lot, but it says it will go away shortly. If it doesn’t I won’t be on this drug long. I do not like being so forgetful. I was angry at Stuart yesterday and couldn’t remember why!! I don’t get angry at him often, you’d think I’d remember why I was mad at him. I think this drug is making me grumpy, or maybe that’s just me. I also think it’s reducing my appetite, as least that would be a good thing.
To sum up, I’m on a new drug (or back on an old drug). I’m not sure about it. I’m keeping an open mind though. I’m keeping a journal of my headaches as always, I’m adding in other side effects I’m feeling and paying close attention to all. I go back to the migraine doc in 2 months.
I can only say: Chronic migraines and New Daily Persistent Headaches suck.
Picnic with Ants 
A friend of mine used to drink coke soda to help with her migraines, I wonder? I am happy to hear the DR is trying to help.
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Hi Patricia. Sometimes if you rarely have caffeine then having some when a migraine starts will help. Sometimes it will help me, usually not. I’m not drinking sodas any more, but I will drink tea. However, for the most part I avoid caffeine.
I’m happy she’s trying too. I’m just not happy about the drug of choice. Open mind….yes, I’m keeping an open mind. And a detailed journal. 😊
I hope you are doing well. 💛
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HI, I too do not drink soda, very rarely. Yes I avoid the caggine as well. Have you tried Lemon Balm for a tea? I really liked it. Yes I would prefer no Drugs if possible. I am thanks. I am thankful my vertigo is better, the vision migraines are tough sometimes. I have friend who just was diagnosed with vertigo. Waiting to hear how she is doing. Have a great day.
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I hate headaches – and I hate it worse it when I can’t remember the details of an office visit!
I usually try to take another person when I’m expecting potentially upsetting info that might turn my brain into a stress-based test pattern (like with my appts. re: surgery for what turned out to be fibroids). But you really need the info from EVERY appt. – so I imagine it is much more frustrating for you.
You’ve probably already thought of all of the suggestions below – just bringing them to consciousness for your next visit(s) because I love you. (i.e., no aha!s below)
Is Stuart wiling to take notes?
Will your docs let you record your appts? (Much more reliable than notes – or either of your memories).
Can you call the receptionist and ask her to ask the doc a question or two, then call back for the answers? Or email the office with your follow-up questions?
Can you ask your doc how she wants you to handle follow-up questions? (seeding the assumption that there will be some)
Do you TELL your docs when brain fuzz means you are having trouble following? Hard, I know, but could be helpful to them as they sherlock, as well as encouraging them to highlight important info – or review at the end. I mean, it’s not exactly difficult to imagine how somebody who can’t hear might have trouble following anyway.
In any case, I’m praying that this new (old) medication works for you. You so deserve a BREAK!
xx,
mgh
(Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
– ADD Coach Training Field founder; ADD Coaching co-founder –
“It takes a village to educate a world!”
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Thank you for all your suggestions, it never hurts to be reminded of things I could do. (If all the stars align right, I’ll remember)
So far, I’m having side effects I do not like. They are supposed to get better after I’ve been on the therapeutic dose for a couple of weeks. I still have one week of increasing. I need the luck wish. I swear my headache is worse now.
I don’t deserve more of a break than anyone else. Just trudging along. Life is still good.
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Not more than anyone else who is as helpful to others as you are, anyway.
Some of the self-righteously self-involved seem to get too many breaks already, IMHO. 🙂
xx,
mgh
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Wendy! I couldn’t quit reading, you sound frustrated. I always ask my doctor for her notes after an appointment… she is so used to me not being able to follow she automatically types as we talk. It is rare that I can get someone to go with me so I depend on her notes! Best of luck with the Diamox! -Kim
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Kim, that’s a great idea. She does print out instructions for what I’m supposed to do, which helps, but I’d like more info. Especially from this doctor.
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Absolutely. And my doc does a little summary at the end. It’s just a print out. Should create a ruckus. Let me know how it goes!
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Should NOT create a ruckus!!!!! Whoops
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You are too cute.
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Ugh – Diamox! Never helpful for my CSF. I have been put on it a bunch of times. I wonder who it does help? Maybe you will be The Chosen One? 😉
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Yeah, Diamox! I’m very unsure about this. I’ve been down this road before, it wasn’t fun.
I’m taking notes, and trying to keep an open mind….but it’s hard.
Perhaps I will be the Chosen One!!
Woo Hoo!
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Wendy as I was reading your post this thought popped in – it’s not what your doctor needs you to do so it may be counter-productive . . . but here goes.
I know you already know our thinking (neo-cortex) creatives a feed back loop to other parts of the brain. When the doctors had me log all my symptoms (for years) All I did was focus on what wasn’t working and how miserable I was. I’m wondering what would happen if we kept logs of the times we felt ok, good, great so that our brains were focused differently? Kinda like your mindfulness and gratitude journals.
I’ll let my doctor know that all the in between times I didn’t log I must not have been doing well! Well, all my Pop-Up-Thoughts don’t always pan out but this one I couldn’t get out of my mind.
sending love,
judy
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I understand what you mean. I have a love hate relationship with those journals. My doctor needs it, but I sure don’t need to be reminded of every little thing that is wrong.
In my gratitude journal I’ve started trying to list each day something positive about my body. Something I’m grateful for. as simple as, I’m grateful I have great hair….hahaha Seriously more like, I didn’t have vertigo today. but if it’s been a really bad day I might say I like my eyes.
I think it helps to note good feelings about your body.
Truthfully, I’m really bad about keeping a symptom log. and sometimes I’m really bad about keeping my gratitude journal. But I do note things I’m grateful for every day. and I write them down when I think about it…..or when I’m close to the journal.
Let all your Pop-Up-Thoughts out here. I’m receptive. If I don’t agree, I’ll tell you. LOL
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