Does anyone have experience with atypical migraines?

[kmarla]

Also called acephalgic migraine or migraine with aura without headache.
I've had two frightening episodes in the last month and the neurologist is feeling pretty confident that this is what's happening, but I'm still awaiting some tests before a final diagnosis.
First episode I was driving (stopped at red light thankfully) and suddenly lost consciousness briefly. I don't think I was out for long because no one was honking or out of their cars checking me. I don't remember any warning beforehand. Coming too, I had double vision and trouble getting my eyes to open and arms to work properly. I felt very disoriented but recovered fairly quickly and made it home. I went to my family GP (husband drove) and he noticed my heart was skipping some beats but otherwise seemed okay. I felt fuzzy brained for a few days and had a mild headache. I thought I'd had another TIA. Four days later I was walking the dog around our block and everything was fine. Suddenly I felt very anxious because I didn't know where I was. I could tell things should be familiar and I could read the street signs, but I couldn't seem to process the information. It was like being in the twilight zone. I think this lasted a couple of minutes and then it cleared up and I was okay and figured out how to get home. I had the fuzzy brain floating feeling again for a few days with a very mild headache.
I had two strokes five years ago and several suspected TIA's before the strokes. I used to have classic migraines typically with visual auras, but haven't had one in years.
CT is clear as well as Echocardiogram. Had EEG today and looked normal. I'm still waiting for MRI and Holter Monitor tests to be done. The neurologist has ruled out strokes/TIA's which is a big relief. I am restricted from driving until we have all the results.
I had never heard of these atypical migraines but after reading up on them I can see how they make sense.
Anyways, if any of you have experience with them, can share what types of auras you have, how you manage or prevent them etc I would love to hear.

 

[momhappy]

How very scary!
I don't have any experience with what you've described, but I have a friend who has been experiencing some unexplained loss of consciousness. It has happened to him 3 or 4 times and the doctors have found nothing (on the MRI, EEG, etc.). They've got him on Xanax right now in an effort to determine if it's somehow stress-related.
I hope that you get some answers soon and I wish you the best!!!!

 

[kmarla]

Thank you mom happy. It is scary and stressful when these things happen especially since they're unpredictable. The neurologist mentioned that migraines tend to change in their presentation after age 45 or so, and these atypical types become more common. I'm in the right age zone. I've been trying to read up online because I don't know anyone who's ever experienced this. I hope your friend gets some answers soon. One thing that also was mentioned to me is heart arrhythmia which can cause the sudden loss of consciousness. Has that been looked into with your friend? Fingers crossed I'll have some answers soon.

 

[AprilBaby]

Scarey! I only get the regular ones and what a pain! Hope they can do something for you!

 

[GliderPoss]

I get regular ones which is bad enough but yours sound completely terrifying! I hope you get some answers soon.

 

[kmarla]

Thank you Aprilbaby and Hotpozzum. I had classic migraines for years and know how horrible they are. They started when I was around 14 and seemed to end in my late 30's. I always knew when one was coming because I'd have predictable warning signs ahead. I'm hoping this is figured out soon so I can get back to normal life. One little bonus is that I have more time to browse on PS

 

[soocool]

No migraines here, but I do have 3rd degree heart block. It came on suddenly one day when I felt a little short of breath and thought I might pass out. Cleared up and then a week or 2 later it happened again briefly. Went to my doctor and my EKG was fine. Ordered a holter monitor but I never got to use it. Landed in the ER with a heart rate in the low 30s. In the hospital for a week, all tests were fine: echocardiogram, blood work for Lyme Disease, CTscan, etc. Then while in the hospital my heart stopped for 10 seconds. That same day I was implanted with a pacemaker and have felt great ever since.

While you are waiting for your Holter monitor may I recommend you get an Oximeter (you can get this any drugstore) in which you place your finger inside the chamber and it will tell you your heart rate and oxygen levels. This was if something funky is going on while you are experiencing one of these migraines you can quickly check your heart rate and oxygen levels.

Doctors have no idea why this happened to me, but think that a virus may have attacked my heart's electrical system. I was 53 when this happened.

 

[kmarla]

Soo cool that sounds very frightening and I'm so glad to hear that you're doing better now. I had a heart procedure to close a hole in my heart that was diagnosed after the stroke 5 years ago. It's so amazing what they can do now. I was in and out of the hospital the same day. I will definitely go to the drugstore and pick up an Oximeter to have handy while I'm waiting. I get the Holter monitor middle of March.

 

[azstonie]

I have acephalgic migraine with aura (visual disturbance). Onset was late 30s. Serious stress can bring it on. It's been years since I've had one. I take one-half of an uncoated 325-mg aspirin every other day. Magnesium, Doctor's Best brand (this is important). Never let sleep go bad.

Since you've had two strokes, are you presently on anticoagulation?

Edit: just saw your post that you had a patent foramen ovale closed, good work.

From what I read of your post, you may also have a panic component happening coincident to the acephalgic migraine or separately.

 

[kmarla]

Azstonie, yes I'm on blood thinners and low dose aspirin since the strokes. I was on low dose aspirin for the TIA's but it didn't seem to help prevent them. Of course I'm now wondering in hindsight if the suspected TIA's were actually acephalgic migraines. If that's the case then I've actually been having them since my early 40's. I had many tests but didn't see a neurologist until the strokes. I do have a stressful life although lately it's been fairly calm. Sleep is a struggle. I don't think there's a panic component, but would more describe the anxious feeling as reaction to the sudden disorientation and confusion. I'm looking forward to having the tests completed and seeing the neurologist again so that I can have more questions answered. He hasn't recommended any other meds in the meantime. I've been reading online about magnesium.

 

[azstonie]

Hi kmarla:

TIAs, the neurological community is presently divided on those. The true TIA can only be named as such if it predates an actual stroke by 2 years or less. So those "TIAs" you had, they were probably acephalgic migraine just as you suspect.

Patent foramen ovale and stroke are well documented; since you fixed the PFO surgically you are in good shape there.

I've had great success with Atarax for sleep onset and maintenance. its an antihistamine, an 'old' one so a lot is known about it (I'm not a fan of new drugs, too many unknowns). Atarax also helps some people with panic/anxiety. Its great for itch (I am an itchy sort!) 10-mg Atarax is a pediatric dose, you can go btw 25 mg to 50 mg and even 100 mg.

Atarax is preferable to benzodiazepines or other tranquilizing drugs.

 

[kmarla]

Azstonie thanks for sharing the information about TIA's. I hadn't heard that criteria. I'll ask about medications with my doctor. I checked up Atarax and it looks like it may be contraindicated for me, but there might be a different option.

 

[azstonie]

Sure thing.

Neurologists tend to not use TIA to describe neurological events any more, its not a helpful/useful term really, it gets people all upset needlessly. Same thing for "mini stroke."

 

[Sky56]

Yes! Migraine with no headache. Sometimes several times a year, sometimes once every 5 years. The first time it happened was in 1985 and I was frightened and saw a doctor. I was walking down the street and all of a sudden saw dancing zig-zag patterns and could barely see. He said it was migraine and that someday I might get headaches, also I could time my watch from beginning to end - 20 minutes. He was right, but I never got a headache. Through the years, I figured out most of my triggers. The episode starts with small clear white dancing sparks, they grow to large black and white dancing zig-zags with a feeling of slight light-headedness, sometimes with partial blindness (difficulty seeing through the dancing zig-zags). Then it is gone after exactly 20 minutes, no headache. One time, half my face felt mildly numb.

My triggers:

1. New cars. So much so, I'm fearful of new car smell. We buy a new car, and it must sit in the garage with windows wide open to air it out and I won't drive it until over a month has passed.

2. Before lunch, feeling a little hungry, I shop in a large store such as K-Mart or Target. But it doesn't happen every time. The dancing sparks start, then all the rest. I think it's the fluourescent lighting and outgassing from plastic and cleaning products coupled with my body chemistry playing along.

3. Bananas on an empty stomach on a hot day after exercising! So much so, that I never eat bananas alone as a snack. Combined with other foods, it's OK

4. It happened one time sitting next to a gas fireplace that was not running. My guess is that gas molecules were affecting me.
I'm chemically sensitive but not extremely so. I feel very lucky that I never had a migraine headache.

 

[kmarla]

Sky56, thanks for sharing your experiences. They're not a lot of fun, are they! I haven't had any more episodes since January, knock on wood. I'm not sure what the triggers are yet for these suspected migraine episodes. I wish I knew! I can't remember being exposed to anything unusual or different at the time they happened. When I had classic migraines my allergies would usually trigger them. I would get visual auras like you're describing and extreme nausea and then the killer headache. Not any fun! I'm still waiting for an MRI but I think the other tests must be fine since I haven't heard back from the neurologist.

 

[stracci2000]

"Yes! Migraine with no headache. Sometimes several times a year, sometimes once every 5 years. The first time it happened was in 1985 and I was frightened and saw a doctor. I was walking down the street and all of a sudden saw dancing zig-zag patterns and could barely see. He said it was migraine and that someday I might get headaches, also I could time my watch from beginning to end - 20 minutes. He was right, but I never got a headache. Through the years, I figured out most of my triggers. The episode starts with small clear white dancing sparks, they grow to large black and white dancing zig-zags with a feeling of slight light-headedness, sometimes with partial blindness (difficulty seeing through the dancing zig-zags). Then it is gone after exactly 20 minutes, no headache. One time, half my face felt mildly numb."

Yes, Sky, I could have written this! These are exactly my symptoms as well.
The first time, I was 18 yrs old(1982), and I thought I had a brain aneurysm. I was really scared. A doc said they were classic migraines.
I got them quite often for many years.
Now, 30-some years later, I get the aura without the headache. And it happens maybe once every 3 months or so. I have had the numbness in my face, as well, or a sensation of water dripping down my face. So weird!!

 

[DNB]

My sister has had migraines most of her life. One time, she experienced numbness on one side of her face and after they ruled out a stroke (she was about 25) it was determined it was a type of migraine and put her on medication. I think it was blood pressure meds and then they weaned her off. She still gets regular migraines occasionally, but never had the numbness again. I've had one occular migraine event a few years ago (about the time menopause was peaking) and saw a spiral of lights that slowly spiraled out of my field of vision after about 20-25 minutes, then I had a very small/slight headache. It's never happened again, but I researched it and I had the exact symptoms and it hasn't happened again. Migraines can present in many ways.

 

[Arcadian]

I never just have a regular migraine, they always start out atypical. Most of the time they're stress related but sometimes bought on because of my allergies. I started having them when I was about 14. My poor mother But she got good and knowing what was going on before I did. Atypical is hard to catch because they don't all start the same way.

Most of my symptoms were zig zag light around peripheral vision, black spots that get bigger to the point of blinding me (its happened while I was driving, which scares the sh*t out of me), extreme light sensitivity and hearing sensitivity..everything is way brighter and louder. Numbness on my face (usually left side), Tingling going down the left side of my body. Sometimes they affect my speech and balance. Sometimes I can't even talk. And the nausea and smells... I've been tested for stroke, BP problems, and heart issues, and they found absolutely nothing. I'm very healthy in that way, though I do have other health issues but they don't tend to be related to migraine, the one exception is allergies. Its hard to stay calm during that even if you've been through it before. But I have to find my happy spot and try like hell to hold on to it.

Drug wise, sumatriptan in the nasal spray usually works if I catch it quick enough, like say, within 1-2 hours before the pain hits. If I missed the window and they get straight nutty, meaning, the nasal spray isn't working even after 2 shots per nostril, I resort to the injection. They knock me on my butt so they're a last resort. I a stick in the house and one in my purse as a just in case. The pills don't do anything for me unless I take a very high dose.

I can't take aspirin because I have a sensitivity to it, I can't take NSAIDS because they make me throw up. I used to take topamax, but I could never get the dose correct, and you had to be on it for a decent amount of time to even stop a migraine.

I'm thankful that now I'm older, I average about 1 a month, though its higher during the spring because of all the pollen. When I was younger it was 2-3 times a month and it was so rough around the time of my menses.

 

[Sky56]

Thanks for sharing your experiences. One thing I've noticed is that the occurrences don't seem related to stress at all in my case. All of them occurred at times when I felt ok, relaxed and happy. They seemed to be purely biochemical events. I also do not get headaches in general.

 

[kmarla]

I wasn't feeling stressed when my episodes happened either to the best of my knowledge. Afterwards yes, but who wouldn't. I still haven't figured out how losing consciousness fits with migraines, but apparently it does happen rarely. I'm still not allowed to drive until this is all figured out. The symptoms experienced depend on which part of the brain is being effected, so they can often change from episode to episode, or even within episodes. It's really helpful to me to hear from others about their experiences. Thank you all for sharing

 

[kmarla]

I thought I would post a quick update since I saw the neurologist yesterday. All the neurological tests, MRI, ECG etc were completely normal . He's not prepared to say that I'm having acephalgic migraines now, but calls what happened an unexplained neurologic event. Those skipped heart beats my family doctor noticed were very evident on the Holter monitor test (2:1 AV block). So now I am waiting to see a cardiologist. The neurologist told me that if I skipped enough beats in a row it could cause loss of consciousness, so that may well be what happened. Wish me luck!

 

[Arcadian]

@kmarla, I'm glad your scans came out good but the skipped heartbeats is scary. Thank you for updating!

 

[ame]

Wow! I hope the cardiologist can find the reason for all of this.

 

[iLander]

I'm not sure this will help, but my dog has a heart murmur and if she is active or excited, her heart will go into overdrive and she will faint. She acts a little dizzy afterward. We have to sneak into the house, so as not to excite her. Just throwing that out there, since I have no human experience that I can point to.

I hope your scans indicate that you are okay. It may be a simple thing, and easily fixed. Dust to you!

 

[PintoBean]

Just a shot in the doc - are you due to see an ophthalmologist soon? I am wondering if this could be an acute glaucoma attack....

My mom had been doing some marathon late night Olympics tv watching a few years ago. All of a sudden she got this massive headache. Stubborn mom suffered three days before contacting the GP. Since the pain was around the eyes as well, the GP office's nurse said, go see the eye doctor, stat. It turned out to be an acute glaucoma attack. It can happen in dark places where you are straining your eyes, like in a movie theater. All of a sudden the pressure in the eyeballs surges up, and you will see a halo. When you mentioned "aura", it made me think of my mom's experience. Because my mom waited three days, she has some "damage". What happened at the eye doctor was this - the eye doctor is also an eye surgeon. First they tried drops to lower her eye pressure. Nope. Then laser, nope. Then they went with what she described was a needle. Pressure relieved, and she finally had relief. So since she had three days of what's the equivalent of an overexpanded balloon - once it deflates, it will be stretched out. She does not have vision loss, but now she is always on all sorts of drops for regulating pressure of the eyes and what not. and has some side effects to the experience.

I had coworker who's wife also had an acute glaucoma attack, but she went to see someone ASAP as soon as it hit her, and she recovered fine.

 

[kmarla]

Thank you Arcadian, ame, ilander and Pintobean. Pintobean I feel terrible for your poor Mom. My eyes seem fine thank goodness. I'm seeing the cardiologist in three weeks and should have more information then. I've been diagnosed with 2nd degree heart block (2:1 AV block) which I understand is a problem with the electrical conduction of the heart and which causes beats to be missed. I googled a bit which is really not a good idea, so I need to be patient a bit longer and see what the cardiologist says. It could explain my losing consciousness, mental confusion etc. We have an amazing Heart Institute here so I feel lucky!

 

[soocool]

Glad you have a diagnosis. I have 3rd degree heartblock and have had a pacemaker for the past 5 years. If you have any questions that I can answer based on my experience I would be more than happy to fill you in.

 

[kmarla]

Soocool thanks so much for being willing to answer some questions and share your experience. I'm still trying to absorb this new information and have a lot to learn. Did you have any symptoms before being diagnosed? Was the installation of the pacemaker fairly straightforward? How about pain/recovery afterwards? And finally did you notice a significant improvement in energy level and overall well being afterwards? I get tired so easily. I don't know yet what the cardiologist will recommend, but given my medical history and the loss of consciousness I experienced, I appreciate that a pacemaker may be recommended.

 

[distracts]

kmaria - I hope the cardiologist will be able to sort this out for you! It must be very frustrating. Wishing you the best!

 

[soocool]

I remember being tired more than usual and then one day after walking the dog I felt as if I might pass out, plus I felt very warm even though it was in the 20s outside. I called a neighbor who used to be a nurse to come check me out and bp and pulse were fine. I told my DH that if it happened again that I would call the doctor. Well less than 2 weeks later (it was Feb 2010) I felt the same way again so my DH took me to my GP and they took an EKG and it was normal. My doctor is very cautious so he sent me to the electrophysiologist two doors down to get a holter monitor. It arrived on a Friday, but I never got a chance to use it. That Saturday morning I was extremely tired and very short of breath. DH took mevto the ER and my pulse was in the 30s. Ended up in Cardiac ICU where they ran all sorts of tests that came out normal. They moved me after 3 days to the cardiac floor since I improved a bit and my heart rate was in the 70s, but the next day apparently my heart stopped several times (luckily did not have be defibbed), so the decision was made then and there to get a pacemaker.

When I had the pacemaker I was in 3rd degree heartblock, but after several months reverted to first and second degree heartblock so they programmed my pacemaker to on demand. Last checkup in January I am in third degree heartblocck, fully pacemaker dependent. The doctor diagnosed my problem as idiopathic. No known reason as why this has happened.

I am sure that they will run additional tests on you to determine exactly where the heart signals are being blocked. My atrium works fine, but the signals do not get through to the ventricles. Once they determine your exact problem, they will determine the right treatment for you. I know you are seeing a cardiologist, but I would recommend you find an electrophysiologist since heart rhythmns are their specialty. I was seeing a cardiologist as well, but she released me over 3 years ago since she does not have to treat me for any other heart problems. My resting heart rate is in the high 60s and my bp is 110/70 and I am on no medications.

As to the pacemaker, mine was implanted under the muscle on the left side of my upper chest. You cannot seeit except for a scar. The surgery was easy. I was awake for the procedure and did not feel anything. Arm was in a sling for a coupke of days. You are not allowed to lift the arm on the side the pm is implanted above your head for 6 weeks until the pacemaker leads are in place. In the hospital the next morning a technician from the pm manufacturer (in my case Medtronic) came in to program my pacemaker and to check that everything is working properly.

The one thing I was not prepared for is how this affected me mentally and emotionally since there was no one around me who could empathize with me. Everyone thought "you have a pacemaker so you should be fine.". I did not think I was fine anymore. I have heart disease and no one understands. Luckily I found a support group online and it helped tremendously. I got back into exercising and doing everything I did beforehand. I sometimes don't even realize I have a pacemaker. Life is normal and even though I have a pacemaker I am happy and healthy. Healthier than most people my age believe or not. My doctor is impressed and said he wished all his patients were like me.