Struggling to get Proper Treatment
I have had a persistent migraine aura for nine months. My vision is constantly flickering, I get flashes and sparks of light, shadows in my vision, after images, and visual snow. Bright light, sun light, computer screens, and fluorescent lights make it worse, as does stress and tiredness. Not only that but I'm barely managing to cope psychologically with my symptoms, and I'm only getting by now because I happen to be given Nortriptyline for migraine prevention, though it hasn't actually done anything for my symptoms. At this point I feel like medications are just making me worse.
My issue is my neurologist. I go as far as I can to communicate my concerns and priorities for treatment. Every time though I am ignored by my doctor. All she cares about is if the medication works, and if it doesn't, then here is the next one to try with no input from me.
One example: I was given Topiramate by my referring doctor which worked initially, but as I increased the dosage it made me to exhausted and drowsy to function. After my second medication didn't work (propranolol which gave me headaches and made things worse), I asked about trying a time release version of Topiramate that supposedly has less side effects, so that I could try increasing the dosage of the medication that I know does work partially. I had also asked about getting assessed for a sleep study. I have had a history of chronic dark circles under my eyes, fatigue in the mornings after plenty of sleep, and insomnia in the past, as well as new episode of sleep paralyses recently. I was told the time release of Topiramate wasn't worth it because it cost too much, and wasn't as effective so she wasn't going to consider it, and completely ignored my request to look into a sleep study.
This is just one example of my struggle to communicate with my neurologist. Now I know that there are medications that have been proven to be helpful for persistent auras. I have had only two moderate to severe headaches in the last year. Pain is not my issue. I need something that will address the aura. At this point I am fed up with my neurologist. I called my primary doctor's office and asked for a referral to a neurology department in a different hospital network, one that has a headache specialist I am interested in seeing. Instead they called me and told me to go see my neurologist in network, and refused to give me a referral.
Is there a way to see a specialist without a referral from a primary care doctor? Or a way to make my neurologist follow the treatments that are recommended for persistent migraine auras?
Not sure what country you're in or what your insurance allows (which is probably the kicker if you're in the US.) In the US, you can probably see whomever you want, but if your insurance is such that it requires your primary doctor to be the gatekeeper for everything and refer you around, you would have to pay out of pocket. Is there a different neurologist you could see in-network?
A few suggestions...
-If Topomax makes you super-drowsy, are you taking it at night where it could help you sleep, especially if you double it up with nortriptyline, which also helps sleep? Topomax makes me super-hyper, so I take it in the AM, but sometimes time of day matters.
-They have a generic version of the time-released Topomax. Maybe your neuro isn't aware of that? Mine wasn't when they first prescibed brand name QudexyXR. I take it. On my box, it says TopimirateXR. So, not brand name or anything.
-Is the drowsiness when you took Topomax worse than the persistent aura? Sometimes we have to choose whether we want to deal with side effects or deal with the illness. Also, some side effects diminish after you are on the drug for awhile and your body adjusts to the dosage. Did you give the Topomax a full 2-3 months at the full dosage to see if the drowsiness would subside or pull out when they were still titrating you up?
Also, as a super-light sensitive person, if you are experiencing an increase in aura every time you are around computer screens, TV, fluorescnet lights, bright sun, glare, etc, that is your migraine disease body/brain (which you will have for the rest of your life, even when symptoms are dormant) telling you, "This is a trigger for me." If I were you, I would minimize my exposure to ALL of those things because every time you come into contact with one of them it sounds like from what you're saying it's making your aura problem worse. Change the lightbulbs in your house to incandescents, which flicker the least and are the least irritating for light sensitive people. Wear a hat if you need to go into a fluorescent-lighted store. Wear polarized glasses in the sun, which will cut glare. There's lots of places to order special FL-41 filtered migraine glasses, which work for some people with light sensitivity, although not for all. Theraspecs, Axon Optics, Moran Eye Center, and I'm sure I'm forgetting some. They make all sorts of computer screens for light sensitive people, from filters you attach over your screen to the most extreme one by Dasung called Paperlike which emits no light or flicker at all.
That's probably more info than you wanted, but I hope it helps!
Hi ACDC21,
Thank you for sharing your story with us. I'm sorry things are so difficult right now, GardensatNight gave you good information. I'll add a few things here.
As frustrating as it is, it can take up to 90 days before we see a reduction in our migraine frequency and severity when we start new medications. During this time potential side effects may lessen as our body adjusts to it, and if we don't give each medication a fair trial, we'll never know which one would have been the one to work!!
It definitely sounds like its time to see a doctor who will listen to your concerns and work with you. Our medical team needs to work as a partner in our health care, not a dictator! Depending on what kind of insurance you have will determine what doctors you can see. Some insurance plans only allow "in-network" doctors, while others are less restrictive. If you look on the back of your insurance card, there should be a number to call and find out. This information may be helpful; https://migraine.com/migraine-health-insurance/.
If you're able to see a true migraine expert, I would encourage you to do so.These doctors are board certified in headache medicine which is different than being certified in neurology. We have information on how these doctors are different and how to find one in these articles; http://migraine.com/blog/how-are-migraine-specialists-different/
and https://migraine.com/blog/really-find-headache-specialist/.Please let me know how you are doing,
NancyHello it would be really good to hear some advice and talk to people who understand how it feels. I had recently been diagnosed with RA. I was on hydroxychlorquine but been recommended to be on Methotrexate. I had pain in my feet everyday with the mornings being the worse. but when I am wearing orthofeet's shoes, at that time I dont have pain in my feet
Hi akshayv,
Thank you for sharing your story with us. I wonder if our RA site would be beneficial for you. You can find it here; https://rheumatoidarthritis.net/.
If you have migraine disease questions, please let me know!
Nancy
