Mark,
I love your user name!
I have PKD and I have migraines. I got PKD from my father. This migraines run on my mom's side of the family. I'm not keen on either, but fortuantely have a marvelous doctor (he's a nephrologist) who has taken on the challenge of being my primary care doctor and also works with a neurologist to ensure my migraines are treated. I have about 35-40% kidney function, so I ensure any and all medications recommended by other doctors gets the approval of my nephrologist before using them.
I wrote a long novel in response to your posting on the general message board about the kidneys, but since you also ask about migraines, here are some suggestions that have worked for me:
First, are they truly migraines or a different type of headache? Migraines are typically one-sided and pretty intense pain and may be accompanied by senstivity to light and sound and nausea. Some people get see an aura (can be flashing lights, sparkles, halos around lights) or prodrome (strange feelings of energy or impending doom) before the migraine hits. The pain can last for hours to day each time.
Daily headaches may well be migraines, but they may be something else. I used to have a daily headache as well as get frequent migraines (my migraines lasted days, which is unusual). Fortunately with treatment my daily headaches are gone and my migraines are also under some semblance of control. No one could figure out what caused the daily headache, but it wasn't a migraine; they pain was different but still very painful and distracting.
I highly recommend your wife keep a headache diary, noting the time and location of the pain, the intensity, the weather, how much she slept that night, what foods she ate (in the full 24 hours before the headache hit) as well as what she took or did to make the headache go away. Bring this with you to the doctor's appointment and it will make a world of difference in enabling the doctor, ideally a neurologist, to work with you and develop an effective treatment nd prevention plan.
Ice generally works well for the migraines, at both the site of the pain and the back of neck. You may be able to find an icepack that will wrap around Julia's head; they're wonderful! I'll find the webiste for the one I bought and post it; hopefully they ship worldwide!
Use only acetominophen based products, no non-steroidal anti-inflammatories such as ibuprofen or naproxen sodium. Starting with basic acetominophen, there are many products that will help the headaches. The challenge is finding the one that works best for the pain.
Rebound headaches may also be the cause of the daily migraines. If you take too much pain medication (e.g., more than 2-3 times per week), the body can become accustomed to that dosing and you may develop headaches when you don't get the medication. It's a viscious cycle and difficult to break.
Prescription medications may be needed for migraines. I've tried a number of them, including the triptans, a class of medication specifically designed to break the migraine if taken immediately upon onset. I know people who swear by them; unfornately they don't work for me. I've found Fioricet, a combination of acetominophen, caffeine and butalbital (a mild barbituate) is the only thing that will keep the pain under some semblance of control when a migraine hits.
Knowing what triggers the migraine is a key factor in treatment and prevention. My primary trigger is changes in weather; my head lets me know when the barometric pressure is dropping. But I'm also affected when the low front passes and the weather clears up again. I'm also senstive to lack of sleep; too little sleep, especially over the course of a few days, will trigger a migraine.
For prevention, there are medications that can be taken continously to help reduce the frequency and intensity of the pain. What works best of me is actually Botox injections (I got them as part of a clinical trial and it's now a standard part of my neurology clinic's treatment for migraine prevention). It works wonders and the pattern they're given in doesn't give you the frozen expression of celebrities you see on the television! These injections, done every 90 days, have dramatically decreased both the frequency and intensity of my migraines as well as made the daily headache go away entirely!
I also have tried a number of preventive medications and the one that seems to work best is pregablin (Lyrica is the US brand name). But there are many others that may also be effective, including some blood pressure medicines. Working with a neurologist and keeping the kidneys in mind when prescribing any medication is key!
On a separate note, I'm glad to hear you and your wife will be seeing a new specialist in a few weeks. It does sound like the one you have now isn't up to speed on PKD and all of the complications and pain that can accompany it.
Where do you live in Austrailia? We have a number of members from down under, so you may well live near one of them! Do let us know!
And best wishes to you and Julia!
Ruth
from just outside Washington DC, USA (northern Virginia, actually)
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