Migraine

I made an appt. to see my family doctor tomorrow.

I have kept a migraine journal from shortly after I was diagnosed with hemiplegic migraine by my doctor and after reviewing it despairingly, have decided to reschedule my appt from August to now.

22 out of 31 days have been migraine symptom days. And at least 6 separate migraine "attacks" lasting more than a day or two and usually involving the hemiplegia, vertigo, confusion, etc, etc, ad nauseum.

Before I started on the Topamax I was having an attack every 4-8 weeks with some mild symptoms interspersed that I was able to work through.

I am so frustrated!

I know that my hormones are playing a major role in all this. I have been having a period basically for two weeks out of every month, and I know at key times these hormone shifts are triggering migraine attacks as well.

The problem is no doctor wants to really do anything about anything. I feel like I have to fix myself. I honestly am to the point where as much as I really do not want to be on the stupid internet making "discoveries" right now, it may just be easier and sounder for me to do it myself and forgo all the doctor visits, having to find babysitters, trying all the drugs, racking up bills we can't pay...

This has become such a strain. On our finances, our marriage, my health, our family. I have a pile of medical bills I have not opened. Probably over $1000 just to find out I didn't have MS. I have a stupid bottle of 3 months worth of Topamax we just paid $75 for now and I probably won't be taking it anymore.

It is so overwhelming.

I know I am whining.

So what should I bring up to the doctor? Are there other therapies we should be discussing? I know absolutely nothing about anything when it comes to conventional medicine. I mean, I will definitely take my journal with me, which I hope does not scare him off. I hate going in with too much reading material. I hate "the look." I hate going to the doctor.

Please pray for me tomorrow guys. I seriously may just pull out and do this on my own. The stress of the medical profession is enough to throw me into lifelong migraine.

Jaimee, honey, the best thing you can do for yourself is ask for a referral to a headache specialist. Not just a general neurologist, a headache specialist. Your type of migraine is rare, so most neurologists - let alone PCPs - won't have enough experience to treat it aggressively enough.

It shouldn't fall completely on the patient to do all the work. A doctor-patient relationship should be one of equality, where both of you are bringing something to the table. I fired my last doc because she wasn't willing to treat me aggressively enough - and I "just" have chronic migraine without aura. But she didn't think my ongoing migraine (from November) required aggressive treatment, so I fired her and found a new specialist. And I can't tell you the difference it has made!!

Please don't give up on the entire medical profession just because there are doctors out there who are turkeys. Don't expect more out of your PCP than he/she can honestly provide you with. Again, most PCPs simply don't have the knowledge to treat regular migraines, let alone hemiplegic.

If you're feeling worse since going on the Topamax, maybe it's time to get off of it. Topamax, while a great success for me in college, is now a miserable failure. My doc yesterday told me it was ok for me to discontinue it. We're going to relook at preventive options in 3 weeks, after we've given the Botox some time to kick in.

Don't let yourself give up, Jaimee. There is a doctor out there who can help you. But you need to stick up for yourself and ask for what you need. And in this case, it's a real headache specialist.

Have you seen our specialist list? Patient Recommended Migraine and Headache Specialists

Hang in there, honey. We all love you and know what you're going through.

Jaimee I'm so sorry things are so hard. It is overwhelming to try to figure all this out. I don't remember if you're seeing a migraine specialist but with hemiplegic migraine I think that's so important - no PCP, good as they may be, can have much experience with that.

I am rather suspicious of doctors too and I understand being overwhelmed about your medical care. But I really think this is too complex and risky for any of us to try to treat ourselves - even an expert seeking treatment would need another expert who has some objectivity!

I think what you shared here is a great starting point for a list to discuss with your dr. Your observations of what the medication has/hasn't done. You might want to make a summary of what you've found in the diary, so he can focus in on the most important parts & not get lost in all the info. And have you looked at the guides Teri has for being prepared to talk to your dr? I think this one might help: Guide to a Successful Doctor's Appointment.

Good luck!
- Megs

Hey, thanks guys.

I checked out the recommended specialists and there are none listed near me.

The closest is in Greensboro NC, which is about 3 hours away. It looks like a great facility. It says on their website they do both conventional and supplemental medicine/herbs/nutrition. But 3 hours with the four kiddos to find childcare and gas prices being what they are, and probably insurance being what it is...


We live in Upstate SC.

Does anyone know of a competent headache specialist near me?


I'm just really exasperated right now. I was hoping for a cure all with the stupid Topamax. I at least thought it would get a little better. It was really a stretch for me to take anything med-wise at all. Normally, I would have gone straight for the herbs/supplements... but I was so excited to get a diagnosis, I figured we'd go ahead and bite this thing in the keister.

It'll get better. I'm just having a crummy... year. Thanks for listening.

With your type of migraine, it might be worth the hassle and expense to see the doctor in North Carolina, at least once. I fly from central Mississippi to Nashville to see my specialist. I've been seeing her for 6 months, and I'm beginning to see improvement. It's worth the money and the time.

I don't have the problems you do with getting out of the house. My DS is away at college. But I saw a specialist in Chicago for several years, and we worked things out so that I could be out of town and he would be cared for. It was worth the hassle.

Topamax isn't for everyone. It's the most heavily marketed right now, but it's by no means the "best" preventive. It made my head worse and gave me a low-grade fever. I had flu-like symptoms for the 6 months I was on it. But I'm seeing improvement with the cocktail of meds I'm taking now.

There are lots of options for you, and a specialist is the way to go. Even for a consult, for him to outline a treatment strategy for your local doctor to follow. I went for a consult at the Mayo Clinic about 17 years ago, when my migraines first got out of control. They outlined a protocol for my internist to follow, and he did that. Your specialist might be willing to do the same thing, with you coming back every 3 or 6 months.

You're worth every penny you'll spend.

Gret

Hi Jamie,

I know how hard it is to get out of the house running errands while raising children. Then try to get to a doctors appointment for yourself can feel like an impossible dream. I understand the stress, strain on marriage, family and money. We've been struggling with this for over 12 years of chronic illness. Other members here have struggled for many more years. This just means we know how it feels to be where you are and know how hard it is. We also know how hard it is to take that first step in getting yourself the help you need.

Yet, here'e the thing. If we don't take care of ourselves, and try to manage our Migraines as best we can, we won't be able to take care of our families. This may include seeing a Migraine/headache specialist, especially when we have a rare form of Migraine disease like Hemiplegic Migraine.

Are you able to bring someone to your doctors appointment tomorrow? Your spouse, a friend, or relative? I hate to say this, but when someone comes office with us, it almost "validates" Migraine disease to the medical professional - "if someone else is with her, then she must be in bad shape". Crappy, but true. Not in all cases of course. Ask for a referral for a Migraine specialist, one from our list, because they are experts in this area, not just neurologists who also treat Migraineurs. There is a difference.

I hope your appointment goes well, we'll be here waiting for an update when you get back. Good luck, ok?