Does anyone know of a new, effective treatment for "persistent migraine aura without infraction"?

May 5, 2011 9:21 PM

Does anyone know of a new, effective treatment for "persistent migraine aura without infraction"? Please share if you do!!!!!

I have had migraine headaches with and without aura for over 12 years. In early 2009 I had several headaches start w/ aura and the aura has not stopped since. I have seen 5 different neurologists and 1 optoneurologist and they are mostly stumped, or they have only seen this very rarely. (one neurologist who did headaches exclusively in his practice told me that I was the third patient in 18 years with this condition) I had all of the test/runups to weed out anything more serious and they all came up negative (MRI, MRI w/ contrast, FMRI, bunch of eye tests, etc...) I do have two small masses on my brain, but I have had them probably since birth, and have known about them since my first MRI 12 years ago. They have not changed and they were located on the top middle and left middle side of my brain (sorry for my ignorance in the scientific name of those places) Since early 2009 I have tried the following medications at different times with absolutely no success:

1. Inderall (on 120mg ER for over a year)
2. Lamictal (from 100mg to 400mg and back down over 6 months)
3. acetazolamide (I forget the dosage, but took for 3 weeks)
4. Topamax (50mg for a month)
5. Amitriptyline (10mg titrated up to 75mg over 6 months)
6. verapamil (2 weeks)
7. wellbutrin (3 months)
8. Magnesium (6 months)
9. Imitrex (as needed)
10. Treximet (as needed)
11. Valium (twice)
12. oxycodone (I had back surgery, but I carefully paid attention to my visual aura when I took it to see if it made any difference)
13. Hydrocodone (same back surgery, further along in recovery)
14. Amrix (as needed for back)
15. Xanax (as needed)
16. Ativan (as needed)
17. Nefazodone (6 months 150mg to 300mg)
18. Lexapro (10mg 1 month)
19. Adderall (up to 20mg 2x a day)
20. Lyrica ( 1 month)
21. Norvasc (2 weeks)
22. Mobic (for back, about 6 months)

(I know that not all of these have anything to do w/ migraine or aura, but I just wanted to list everything that I have taken for any reason over the time period that I have had this medical condition.)

Long story short, if you know anything new that would knock this out and heal me I would be your total fan forever! I am totally serious, you would be my hero. This has been a very miserable medical issue because it never stops. 24/7 on and on and on. I always hope each morning that it might be gone, but it always greets me with it's stupid snowiness each and every day. I know that this seems like a lot of different medications, but it has been over the course of 2+years and I would really like to get fixed. Some of them I only tried for several weeks. If you have any knowledge of an effective treatment PLEASE SHARE!!! It would be so amazingly awesome to be able to see things solid again without any moving light on it. Thank you for your time/help! Have a great night!

posted by gibbsjd77 to health & fitness (28 answers total)

This may not be helpful, but I have auras with migraine and I also have Alice in Wonderland Syndrome. My neurologist explained that the aura happens when the electrical impulse interrupts the visual sensors. Or something like that. Anyway, I took Topamax for ten years at 200 mg/day and the auras stopped. I think Topamax, while a problematic drug, is useful and is mostly useful over a longer period of time and at higher doses. If you have vertigo with your auras (I do), then the Epley maneuver might help. Man, best of luck. Migraines and auras both are horrible.
posted by mrfuga0 at 9:25 PM on May 5, 2011

Thanks for the advice. I got up to 50mg of topamax, but it made me dumb as a rock and I was in the middle of college work. It might be worth looking into again. How long did you have a continual aura?
posted by gibbsjd77 at 9:29 PM on May 5, 2011

When you say you have no success, do you mean that you are not experiencing *any* relief from the drugs or do you just mean you still have migraines? My doctor has never said anything to me to indicate you could just get rid of migraines. He's happy that I'm down to about 1 a month on amitriptyline (he said "when we treat migraines we want to keep them under 2 a month), helped by a dose of Relpax + Vicodin + Dramamine or Compazine when I get them. The pain is not godawful with these drugs and lasts 2-4 hours if I catch the aura when it starts - if I wake up with the migraine the pain is worse and it takes longer to go away, and sometimes I vomit.
posted by IndigoRain at 9:30 PM on May 5, 2011

I have not had the kind of ongoing aura that you do (and you have my deepest sympathy!), but I do get migraine headaches with aura, and the best results I've had have been with beta blockers. They work really well for me, while triptans didn't help a bit. They're a very affordable and benign class of drugs, so they seem like they might be worth looking into.
posted by redfoxtail at 9:32 PM on May 5, 2011

I still get migraines on occasion, but the visual aura has stayed the exact same for a little over 2 years now. That is my primary concern and is what I'd like to beat more than anything.
posted by gibbsjd77 at 9:35 PM on May 5, 2011

There is research out there regarding the use of treating cluster headaches/migraines with 'shrooms and/or LSD.
Obviously there are legality issues with using these, but I'm just throwing it out there.
There could be a study out there you could join if you were interested in following up on whatever's new in this line of treatment.

*Newsweek article - The Psychedelic Solution: Drug taboos may block a potential treatment for cluster headaches, one of the most painful conditions known
*Erowid survey (with more links to other resources at this link) - Treating Cluster Headaches & Migraines with Psychedelics Survey:
"...The information you complete in this survey will be reviewed by doctors at Harvard Medical School's McLean Hospital as part of their efforts to evaluate the therapeutic potential for these substances as a treatment for cluster headache."

However, Visual Snow seems to think psychedelic use can *cause* this problem. So.
But maybe there's some things/ideas/research worth poking around at in any of these links that you haven't seen before. I hope so!
posted by flex at 9:45 PM on May 5, 2011

Sorry for not understanding - you're saying you have an aura 24/7?
posted by IndigoRain at 10:01 PM on May 5, 2011

Thanks for the advice.
posted by gibbsjd77 at 10:03 PM on May 5, 2011

I do. I had it before 2009, but it would never last more than 30 minutes or so. Then one day it just kept on going non-stop.
posted by gibbsjd77 at 10:04 PM on May 5, 2011

I would retry some of the medications for longer, with higher dosages. For me, verapamil is my wonder drug, but it took a neuro who was willing to go up to a high-ish dosage, and keep me there for a good 6-8 weeks, before giving up. I started at 90mg, but went through 180 and 240 before finally getting relief at 360mg after taking it for a month. I also take beta blockers as well when things get really bad, and they work, but my docs don't like me being on both drugs at the same time, my blood pressure gets too low. I've also tried many other things for my migraines - including topamax; it totally worked but made me dumber than a goldfish, and made my eyes hurt. Glaucoma is a rare side effect as well, so that ended that. I guess I should also mention I don't get auras, but like you I've been through the migraine gauntlet and that list of medications looks awfully familiar. Good luck.
posted by cgg at 10:14 PM on May 5, 2011

Did verapamil help you particularly with persistent aura?
posted by gibbsjd77 at 10:29 PM on May 5, 2011

Have you tried depakote?

Otherwise, Table 3 of this guideline is what you want to read.

If you didn't max out the doses, consider retrying the verapamil and wellbutrin, at higher doses and for longer periods of time.

I'd say try any medication for at least a month before giving up on it. It takes a while for them to kick in.
posted by Meta-4 at 10:31 PM on May 5, 2011

I was on depakote when I first got migraines and I never positively responded to it. They titrated me up to the highest dose for my bodyweight and I still was having migraines regularly. I have not tried it again since my continual aura issues.
posted by gibbsjd77 at 10:36 PM on May 5, 2011

Thanks for the link. I will check that out in further detail tomorrow!
posted by gibbsjd77 at 10:38 PM on May 5, 2011

Because mine are short, I usually just put an ice-pack on my head and lie down and they pass in half an hour or so. I am not really clear whether you are suffering silent migraines, but I think not. Mine are just light shows, no pain, but when I was investigating what might cause my silent migraines, I found that a number of people with heart valve problems experience aura migraines.

I have aortic stenosis, and had my aortic valve replaced seven years ago, and I have found anecdotal evidence of a link.

Good luck, it must be very difficult to live with.
posted by bwonder2 at 10:48 PM on May 5, 2011 [1 favorite]

I have left ventricular hypertrophy. I guess that could have something to do with it, but the doctors never brought it up as a concern.
posted by gibbsjd77 at 10:52 PM on May 5, 2011

Patent foramen ovale has been linked to migraines with auras, but I don't believe left ventricular hypertrophy has.

A PFO can be picked up by echocardiogram or a bubble study.
posted by Meta-4 at 11:08 PM on May 5, 2011

About ten years ago I had a persistant aura that lasted for a couple of months. It went away on its own. When it first started I didn't know it was an aura and went through a lot of MDs - opthamologists, neuropthamologists, neurologists and so on, and a lot of testing - it sucked a lot I don't have any great suggestions on meds or techniques to deal with your migraine, but I just wanted to let you know that there's another person out there who has been there, albeit to a much lesser extent. I hope that you find something that will make your aura stop.
posted by sciencegeek at 4:14 AM on May 6, 2011

The thing that stands out for me is that of the triptan group of drugs, you only appear to have used medications containing sumatriptan (I might be missing something, though, as I'm not familiar with the US brand names and have to look them all up). It might be worth going through multiple triptan drugs and multiple methods of delivery (oral, nasal, intravenous) to see if any of them help. I know that my headaches respond only to 100mg of sumatriptan, but not to the nasal spray (possibly due to nose issues) and not to dissolve-on-the-tongue zolmitriptan; I imagine for others it's the other way around.
posted by Acheman at 4:42 AM on May 6, 2011

When I had migraine with aura (I don't get them anymore), Midrin was the first that I tried, and it worked really well. However, in looking it up to see if it matched one of the drugs you mentioned, I found this. Apparently it is discontinued, but at the bottom it says a few people are still using it. Maybe you could ask your doctor about it, as your problem seems to be a special case. Good luck and I hope you feel better.
posted by Glinn at 5:24 AM on May 6, 2011

This is probably no use whatsoever, but I used to suffer from migraines with aura - not to the same extent as you (would get one once a month and then it started increasing and increasing to a couple of times a week). The doctor prescribed me Propranolol 80mg a day and since then I've had 3 migraines with aura in about 6-7 years. Your situation and medical conditions may be totally different to mine so apologies if this is useless info, but I thought I'd put it out there on the off chance it could help.
posted by Pilly at 5:41 AM on May 6, 2011

It looks as though your list does not include a high-dose NSAID, nor acetaminophen. The mention of Midrin, above, reminds me that it was only after I'd been using Midrin successfully for migraine that I ever tried Tylenol for a migraine. Since Midrin contains acetaminophen, I tried 1000 mg of acetaminophen and found it to sometimes be surprisingly effective, for such an ordinary OTC drug.

More recently, since my migraines were being triggered by another condition involving inflammation, I found high-dose NSAIDs, taken continuously, to prevent most of them. (This is in spite of the fact that frequent use of analgesics is one of the most common causes of headache.) Not all NSAIDs are alike, and which are best depends on the individual; naproxyn is useless for me, Celebrex wonderful, but for some it's the other way around, so it might be worth trying a number of them, at the maximum prescription dose. Only one at a time, of course.

I don't know if this is at all relevant to your trouble with auras, but at least it's a few more drugs to add to your list.
posted by Ery at 5:57 AM on May 6, 2011

I do Midrin, too (I don't get them more than a few times a year these days, so I guess my doc is not worried about the acetaminophen).

It looks like some of the ones you have tried are contraindicated for migraine with aura, too.
posted by Pax at 7:18 AM on May 6, 2011

I'm going to throw something out there that may sound completely nuts, but - get the blood test for aldosterone-renin ratio and catecholamines. These are two inexpensive tests that aren't routinely done, but should be.

I see lot of similarities between your history and mine - I have a lifelong history of migraines, migraines with auras, and auras only, and never responded well to many of the meds you listed. I've also had LVH, although it doesn't always show on EKG.

It took me over 15 years to correctly get diagnosed, but I turned out to have an adrenal tumor. It's causing all sorts of hormonal havoc, mostly only visible on paper but the headaches and LVH are two things that most other adrenal tumor patients I've talked with have had.
posted by chez shoes at 9:05 AM on May 6, 2011

After decades of trying every prescription drug on the market and suffering migraines every 10-14 days, my doc put me on beta blockers. Technically they're for lowering blood pressure (and treating a ton of other things), but they have the most excellent side effect of preventing migraines.

I've posted about this in lots of migraine threads, so won't repeat myself too much here. But the preventive angle is something you might want to look into, rather than trying to find a medication that will zap a migraine once it's already started.

I take two atenolol tablets a day and have seen no noticeable side effects whatsoever -- unless you count lower blood pressure, which might be an issue for you; ask your doctor, because low blood pressure can be dangerous.

I get a handful of migraines a year now. I truly got my life back. And the pills cost me $10 a month, generic -- which is awesome. I'd pay ten times that if I had to.
posted by vickyverky at 11:28 AM on May 6, 2011 [1 favorite]

Both bwonder2's and vickyverky's comments are fascinating to me. I had that bit about the possible psychedelic treatments in my back pocket because my husband gets migraines/visual migraines and it's something we talked about when I read online (I think in The Globe and Mail?) a piece about using psychedelics to treat migraines a year or two ago.

Anyway, my husband had aortic stenosis, and he was on beta-blockers (atenolol) from since about a year before he met me, until he had open-heart surgery to replace the valve three years ago. He said he had (needing-to-go-to-the-hospital painful, but not visual) migraines before he went on the beta-blockers, they stopped a while after he started those and he hardly had them afterwards; and they've started again (prominently, the visual migraines/aura/snow which he gets at least twice a week, usually not painful or not very painful) since he's had the valve replacement and gone off the beta-blockers. We've never thought of or heard these connections before, so I'm intrigued to think this may well be related.

Just another anecdotal point - I know we are going to follow up on those suggestions (that his heart condition may be related; that going back on the beta-blockers might help) - you may want to as well since it sounds like a new idea to you also!
posted by flex at 1:19 PM on May 6, 2011

Thank you for all of the great suggestions! I will look into them. Have a great day.
posted by gibbsjd77 at 4:45 PM on May 6, 2011

I don't have general help for your migraine symptoms, but just a comment on your complaint about the Topamax -- I took it for a few years (at a higher dose) and it definitely made me also 'dumb as a rock'. I had the 'tipof the tongue' syndrome too, where you just can't think of *one* particular word. Anyway, my migraines had been so frequent, I was willing to stick it out for a while, and the stupids did eventually ease up. Also, many of the other weird side effects, like the soda thing and the loss of appetite also got better. This is the general anecdotal stuff I hear from other users too. Just in case you decide to look into that option again. Hope you feel better soon!
posted by Tandem Affinity at 9:25 PM on May 6, 2011