Frustrated - Anyone Else Have This? Aura/seizure/silent Migraine/other?

[Zap]

I've been in a rut lately as this happens to be one of the hardest things to pin down as well as one of the hardest to deal with. I get what some might refer to as persistent migraine aura. I don't get the visual symptoms, per se, that many others seem to get as part of aura, but I do get disorientation, a bit mentally spaced out, some pain, fatigue, etc. Sometimes it will bloom into full migraine, and others it subsides eventually. It also tends to drag on for somewhat lengthy periods of time, rendering me quite useless and interfering with what I'm trying to do.

I've recently been switched to Propranolol XR 60 mg to see if it helps with the insomnia that I was getting from taking my evening dose of Propranolol. Otherwise, I have been on Propranolol 20mg (AM/PM) and it has helped with actual migraine prevention to some degree, but not with the aura symptoms.

I haven't tried a massive number of drugs yet (and I'm really not eager to with how many drugs I get side effects from or that just generally don't work) but I have had one other drug that was like a miracle for the migraines, and that was Pamelor/Nortriptyline. Unfortunately, though, it gave me raised blood pressure, heart rate, anxiety, palpitations, and OI. But during the time I was taking it, I had almost NO migraines and the aura was little to non-existent.

So, at this point I'm a bit curious to know - is this aura something that anyone else has? I'm curious if it might be possibly classified as a form of mild seizures. From my reading, I REALLY don't want to try Topamax, as it causes mental problems quite often.

The migraine "drug flowchart" goes:

Antidepressant (Tricyclic / SNRI) >

Anti-hypertensive (Beta blocker / Calcium Channel Blocker) >

Anti-convulsant >

Botox >

Combination >

Re-evaluate Diagnosis

I'm curious if anyone here that also has migraine has had any success in treating it, and what they've used. My theory is that since the Pamelor worked so well, there must be one of its key actions that was balancing the migraine reactions (as I was having daily chronic migraine without any preventatives).

The biggest stress so far is that nobody wants to treat me as a WHOLE. I've got a migraine neuro that won't treat the dysautonomia, and can't really say even I have an autonomic neuro anymore. The simple fact is the two are intertwined and meds for each affect the other in various ways. The Propranolol has been a HUGE help in lowering the racing heart problems and the anxiety that follows the adrenal rushes. I don't want to give it up, but I need something to handle the migraines AND aura both, or there is no way I can ever think about going back to work, as they were a major part of why I had to leave.

So, I eagerly await input from anyone else that has a convoluted situation of this nature. Amidst this I've had an abnormal EKG, which I'd like to investigate further, too. I know there has to be some type of better answer than what I've got so far.

[Zap]

And it progressed into worse and worse, yet the pain was still quite mild compared to my normal migraines. Lots of vertigo and spatial perception issues though, which isn't all that common for me.

Maybe the Propranolol is interfering with at least part of the cycle of the migraine phenomenon.

At least the Imitrex still worked to abort things, though about an hour later I'm just starting to feel slightly better.

[Christy_D]

My son used to have severe migraines that always ended in the ER with a cocktail of IV meds. He used Topomax for 5 months and the entire time he didn't have a migraine, but the side effects were horrible. Sometimes he couldn't speak a coherent sentence, trouble thinking of the smallest words, major cognitive impairment all this while in the 7th grade and trying to go to school.

The long lasting painful migraines never returned, but he was then diagnosed with silent migraines, possibly the cause of his nausea. I would never put him back on the topomax, too many bad side effects.

[anna]

I have a good idea how you feel as I get constant aura type symptoms but with the visual stuff as well, the only thing that has ever helped reduce it is:-

"Amlodipine is a calcium channel blocker. It relaxes the arterial wall and makes it easier for blood to pass through blood vessels. The drug can be used to treat hypertension, coronary artery disease, angina pectoris (Prinzmetal’s angina and chronic stable angina pectoris), heart failure (including decompensated heart failure). It can be used as a monotherapy or in combination with other medicines."

It has also reduced my Raynaud’s and Angina type symptoms, but I do have high BP ANS dysfunction with big swings to low BP when sitting, with and without BP meds.

[Katybug]

I have the symptoms you describe prior to my migraines for hours and sometimes even days before a headache. It is actually sometimes hard to distinguish between POTS and an oncoming migraine because of the weird disorientation, fatigue, and pain. My neuro who (luckily) specializes in both migraines and dysautonomia, does not consider these symptoms "aura" but does feel they are part of my migraine. I also have issues with light and noise sensitivity, flickering lights (like when you drive through the woods on a sunny day), and severe GI symtpoms (which has led to a dx of abdominal migraine w/headache).

I was on Verapimil (a calcium channel blocker) about 5 years ago for the headaches (prescribed by a different neuro) and had really good success with it. This was given to me prior to my POTS dx. I tried Topomax last year and while I had no headaches after the first 5 days of use, it left me bedridden by the end of the second week of use as it made my POTS symptoms, espcially shortness of breathe, chest compression and pain, and dizziness, go completely out of control. I have been on Depakote (anti-convulsant) since Oct. of last year. It has worked really well most of the time. The hot weather of the summer has required us to increase my dosage because the hot temps and summer storms are a major trigger for me. I have no side effects from the Depakote and it is also how we realized that all of my GI issues were a result of my migraines (reflux, nausea, projectile vomiting, severe abdominal pain, diarrhea). They went away completely when I went on the med, and have only flared (and not to their original severity) when my migraines flared with the weather. My current neuro wouldn't try the Verapimil again because it is known to drop BP and increase HR which he felt would be dangerous for me at this point in my POTS. He was also very specific that I has to tell him if I ever plan to get pregnant as we have to get me off the drug first as it causes serious birth defects (not really an issue for me but could be a serious consideration for someone else.)

If you have questions about anything, let me know.

[Zap]

Wow, quite interesting! It sounds like the Ca+ channel blockers appear to be effective in those with dysautonomia... and it isn't something that has been tried yet.

I've also heard decent things about other anti-convulsants (e.g. Depakote) aside from Topamax. I too, used to have all sorts of GI symptoms but I'm not sure to what extent my specialist is on board with a diagnosis of "abdominal migraine". It seems that only some doctors support it as a unique diagnosis, even though my experience has definitely shown it to be very real.

[diamondcut]

I can smypathise with many of your problems too, my nuero is not a cross over for POTs, he does see EDS patients but treating migraine when you have POTs is proving to be an absolute nightmare for me. I have tried a lot of drugs recently for Migraine, unfortunately for me Verapmil was one of those "put you in bed" drugs for me, but i am so sensitive to meds at the moment. Its very easy when you have POTs and Migraine to bounce from consultant to consulatan because no body really wants to commit. So you are very lucky to have the 2-1 dr!!!

I too have major GI issues that are largely down to migraine. I know this becuase when the migraines are not there the nausea is around 60% less which is massive on a daily basis. I am so frustrated because i have daily chronic migraine, even when the pain has been blocked by the Botox or Nerve block injections, my head is still in a state of migraine, so the nausea and vertigo is still there! If only i could find the drug to calm my head down lol!

If you want a treatment that is "side effect free" although i know this does not exist, Botox has been a life saver. Its given me some relief. The Nerve block wasnt so good, the steroid took me 3 weeks so get over, but again this isnt a normal reaction to have, a lot of people it cures them (all be it only a week or so)

Another excellent drug is Sebelium. Its a CCB. The few people in the UK that are on it have had a big success with.

Hope this helps.

Does anyone take B2 and C0q10 for migraine prevention?

[Katybug]

I'm on a B-complex supplement but it doesn't have any effect on my migraines. I have taken CoQ10 in the past and that also did not have any effect on my migraines but I will say that I did feel like I had more pep on it. But, I am taking a handful of pills morning and night these days, so I am trying not to take anything I don't have to as it is so easy to loose track of what is effecting what.

[flyingsquirrel]

I have acephalgic migraines (basically everything but the actual headache). I was already taking monster doses of verapamil for my IST, which happens to be the drug of choice for acephaligic/aura only migraines when I got diagnosed, but I was having significant symptoms anyway. According to my migraine neuro, acephalgic migraines have a different pathophysiology than "regular" migraines and therefor a different treatment. (and since migraine and autonomics are two uncommon subspecialties, it's hard to find someone who does both.) So...since the verapamil clearly wasn't helping me, they started me on topamax. I did have the "dopamax" side effects during the initial taper, but once I was on a stable dose for a week or two (it's a very slow taper up to the target dose) the cognitive side effects completely went away for me. I recently had to increase the dosage and I did have some cognitive side effects for 3-4 days while I was adjusting to the new dose, but now I'm back to normal. (I'm a grad student by the way, I use my brain a lot.)

Zap, I understand your hesitation to try something that interferes with any sort of mental activities, but topamax isn't as scary a drug as some people make it out to be. I would encourage you to talk to a good migraine neuro and, if topamax sounds like it will help you, give it a try for a couple months (enough time to get up to a theraputic does and get past the side effects). Worst case scenario, you stop taking it and try something else.

[Zap]

Well, whatever was in the XR Propranolol (an excipient, one of the coatings or something else?), or the change in med dosage/frequency sent me into a migraine storm. I've been taking Imitrex WAY more often than I had in the past.

I couldn't take it anymore, as I was feeling horrid almost all the time and couldn't get anything done. So I switched back to the SR version, and I'm doing a lot better. However, I seem to still be getting the migraines. Looks like I'll be calling the migraine neuro's office about this. This is exactly why I'm so frustrated at times, as I'm so hypersensitive to drugs and the least little change can set things off big-time. I honestly think that there has to be SOME way to find a diagnostic rationale to choosing migraine treatments. Russian roulette doesn't work for me and I'm sure others must deal with this, too.

[diamondcut]

My God how i wish there was! I am so with you on that score on diagnostic rationale for migraine, sadly i think its more a pin in a book and thats your drug to take home and try, never mind if its dangerous for you and ends up making migraines worse!!!

[humbled_pie]

I had a similar symptom set and was having what was diagnosed as debilitating migraines (most often "silent"), probably basilar artery type, as often as 3-4 times weekly. The prolonged aura and recovery/postdrome period would bleed into one another such that for months on end I was basically housebound. Beta blockers made my Dysautonomia and POTS so much worse. Adding amitriptyline (sp?!) at bedtime helped only mildly.

To be honest, we accidentally stumbled across what has finally mostly cured the silent migraine/aura symptoms. A year and a half ago our family tried an experiment of going gluten free for 2 weeks. We've never had gluten (on purpose) since. When we do, accidentally, each of us immediately has one of our own personal characteristic responses, as we each react to it differently. For me, going gluten free suddenly meant being almost entirely migraine free.

Just sharing my personal experience - not suggesting it would necessarily work for anyone else!

[Zap]

Well, I'm currently on a mixture of Toradol / Zofran to attempt to break the vicious cycle I'm stuck in (just 5 doses). I don't know WHY, but before getting these meds I decided to try an experiment. I hadn't had much luck with salt loading lately, but I decided to try it again. I was popping ThermoTabs like crazy, and it would hold off most of my symptoms until it "ran out" at which point if I took another, it would again alleviate symptoms. I have NO clue why this was working, but I suspect it could suggest hypovolemia?

I'm also wondering if the Propranolol is making things worse migraine-wise more recently, as I believe it can lower renin/aldosterone. If I'm already having volume (or vascular tone?) problems, maybe something else would work better...

[issie]

I just had someone write me and say that they are thinking that miagraines might be connected to mast cell issues. They didn't give me any studies but, it might be worth looking into.

Also, here are a few articles I thought was interesting in regards to salt and vasodilation. Don't know if this might be playing a part in the headaches or not . . . .also there is a connection to salt and NO (nitric oxide) which we know is an issue in POTS and also a connection with dopamine.

Those articles didn't go to the sites ----will try again.

http://hyper.ahajour...ntents/26/2/256 this one isn't coming up ---title is "Renal Vasodilation w/-Arginine Effects of Dietry Salt"

http://www.nature.co...jh2000303a.html

http://web.squ.edu.o...2/02591r00.html this one isn't coming up ---title is "systems promoting vasodilation and salt excretin"

Maybe you can find the two by typing in the title. Don't have time to try it again.

Issie