Musician2k's migraines & what?

[musician2k]

I am in need of some support from everyone since we are not getting it from the doctors. My husband Chris musician2k has had many occular migraines. He suffered from these before surgery, and we were hoping that the surgery would actually help. However, they have been extremely worse. In fact, I worry that he won't really recover because he has had nearly two to four migraines in a day. Sometimes even having double vision. And today, he had two episodes that scared me. It's like he had almost a mini-stroke where he forget what day it was and where he was. One episode he was on the phone with my sister, and she later told me and him what happened and he couldn't remember any of it.

Well, we called the cardiologist earlier today, and they acted as if this was not related to the surgery or the coumadin. They suggested that we call his neurologist....and what will he say? He couldn't even treat Chris prior to surgery. He kept trying one thing after another.... Doctors don't seem to care or understand. After the last scary episode, I called the emergency number for his cardiologist....and they never called back!

He's okay now, for the moment. I worry...that life will be like this forever. I get so depressed thinking that. So, does anyone out there have any suggestions? I really am so frazzled about this. I don't know what else to do. If someone wants to call me or let me call them, I might could use someone to talk to...especially someone who understands this particular problem. Email me privately for phone number.

Carla

 

[geebee]

Carla,
Many of us have problems with increased ocular migraines after OHS. For those of us who had them before, they were usually worse after and some folks, who never had migraines before, got their first ones after OHS. Very common.
I was, however, concerned about the epsiode you mentioned about memory loss. It is not impossible that Chris had a TIA. Since your cardio seems to be clueless about this, definitely call his neurologist or surgeon to discuss. Is Chris on a baby aspirin a day? If not, talk to the doctor about that. It helps control my TIAs.
As far as the ocular migraines, they will subside. It is unlikely they will go away totally but this is a temporary time for the increase.

 

[Nancy]

I think you will find that many folks will report the occular migraines post surgery. Joe has never had those, but many others have.

The other problem sounds like a TIA which is a transient ischemic attack. It is a tiny micro embolus or emboli that break off from somewhere, could even be plaque that was disturbed by the surgery. This travels through the blood system and even into the brain where it causes temporary loss of function to whatever part of the brain it has traveled through. They clear up very fast. And in most cases they are gone to never return again.

Joe has had a large number of these about 16 or so. They are scary to watch and scary to have. He had many different symptoms with them.

I always brought him to the ER. The reason being that they can be a predictor of a full blown stroke. So they have to be checked out. The vast majority of them do not precede a stroke, but it can happen. Every time we went to the ER, there was no evidence of the TIA.

He did have a consult with a neurologist, so that would be a good thing for Chris to do.

The TIAs have to be controlled. There is some evidence that they can leave tiny areas of infarct in the brain that can be seen on some sort of brain scan. So trying to minimize them is something that would be good.

If he ever has another, call 911 and get him an abulance. Do NOT under any circumstances allow him to drive himself. The EMTs are prepared to take care of whatever could happen on the way to the hospital.

This is not meant to scare you, but it is prudent to check these things out.

 

[Georgia]

I had ocular migraines often prior to surgery; had a few afterward, and am now down to a couple a year.

Others here have had a lot after surgery. I wouldn't worry about them for a while - let him recover a bit and see what happens.

The TIA is a different story - follow Nancy's advice.

And find out what's going on with your cardio that you didn't get a response to calling his emergency number. That's unacceptable, especially since Chris had post-surgical issues.

 

[marky]

The occular migranes were awful.. I had up to 15 per day for weeks.. at 11 weeks post op I still get at least 1-2 per day. and funny thing was my cardio never heard of them from surgery HUH?

the memory loss that is something different? I had 2 bouts of not remembering things.. but they were very soon after I came home.. I became very confused and panicky not knowing where I was for a moment..or what happened and why i hurt so badly.. but again they were short and within my first week post op. I figured it was pump head moments..
What you described Chris as having sounds much more concering.. Yes I would want to follow that up right away..

don't worry about the occular migranes..they will
improve.

 

[Karlynn]

Did Chris ever eventually remember anthing that occured during his memory loss? I had a few episodes of memory confusion in the first couple months after my OHS. Everything checked out okay, and my Dr. and I attributed it to the shock to the body/anesthesia/new meds etc. It was a scary thing. I woke from a nap one day and couldn't remember our address, the state we lived in. After about 1/2 hour everything was clear again, but is was very scary.

Calling the neurologist is a great next step. The stress from worrying about the unknown, in and of itself, is not a good thing for either of you.

 

[aussigal]

I also had those horrid migraines, even when I was still in hospital and they couldnt give me enough meds to get rid of them... and then afterwards especially in the early weeks at home they would come on all of a sudden...they have become alot less frequent now...
I hope you both get some rest from this worry...

 

[Sherry]

Hi, Carla. I had several episodes of a gray cloud in my field of vision right after my surgery that I had never had before. My docs attributed it to micro-emboli being thrown from the valve, something they hoped would resolve itself after my INR was stable. I still have them occasionally, even had a little one the other day. I had a few episodes of confusion, one last year in my classroom that really stressed me out. My general practitioner (not cardio) immediately put me on Plavix, which I now take every other day. My new cardio suggested that I could probably get the same benefit from taking a baby aspirin daily, which at some point in the next month or so, I'm going to switch over to. I agree with everyone here: don't take no for an answer. If it happens again, you should take him to the ER. For that matter, seek out advice from a neurologist before it happens again. Better to be safe.

 

[Marguerite53]

Carla. I'm really sorry that you 2 are going through so much. Please try to be calm and optimistic and patient. Do consult a neurologist. THey are well trained in these particulars.

I've had occular migraines for over 30 years. I was just buzzing with them after surgery. The one I like the least (as it is scariest) blocks (grays) a chunk of my vision. Same place, same eye. This concerned the surgeon, but since I'd had the exact same ones before surgery (but only several in 20 years as opposed to several a day!) and had NO other symptoms, we just chalked it up to migraine. I got really sick of it, so I tried to figure out what was tirggering it. It seemed to come on me when I wasn't breathing well, or when my blood pressure might be jumping around. Sure enough, I am able to slow breathe them away, now. I can feel them coming and so I'll deep breathe.

I thought I was an amazing picture of straightforward thinking and responding as soon as I got home from the hospital. Several weeks later I actually had my husband and daughter laughing hysterically as I boasted at how well my mind had been working! They said that frankly, I hadn't made any sense for days!!!! I never would have guessed it. They thought I was hilarious!!

I know this is scary. And you may have some true problems surfacing here and I in no way want to belittle your concerns. Continue to advocate loudly for Chris, as others have said. But if you find that you are safe, try to be patient with the whole thing. Try to find some humor and leave the fear behind. It will really help you both. This is gonna take awhile. It's heavy duty. But really....your lives should be so much better for it all.

My best wishes to you both. Sincerely. I'm thinking of you.

Marguerite

 

[JohnnyV_46]

I am of the opinion that Doctors can do 2 things. Cure people and Kill people. Whenever you get the I dunno's early on from a doctor and they don't have any suggestions whatsoever,seek further help from another doctor E-mediately....

 

[BDMc]

Agree with Others

Agree with Others

Carla, I too have the ocular migraines. They were much more frequent right after surgery, but I still get them 21+ years later. My experience with doctors, is that most have very limited focus, and if your symptoms fall outside of that, they are worse than nothing. They are just like mechanics, and frankly I don't think many are very good. It's a lot of work, but I say listen to Johnny, and get new doctors! The possble TIAs is something important to deal with! I am sorry you two have to go through this, and hope for the best. I think you are your husband's best asset, as you can advocate for him, and get him the help you both really need. Brian

 

[musician2k]

Hey everyone - Chris here.

We called the after-hours emergency number last night for my cardio & finally spoke to one of the guys in the group. He suggested I go back on baby aspirin each day (which I did) and follow up with my regular guy today (which I also did.) Had a CT scan of the brain (can't have an MRI, ya know ) and am awaiting results. Truly he doesn't think what occured yesterday (confusion, temporary memory loss, resulting panic) was a TIA but he felt it's best to rule it out. I know enough about migraine to know that it COULD have "just" been a couple of very weird auras. Auras do not HAVE to take a visual form...they can be smells, emotions, even numbness & weakness that mimics a stroke in other ways. Like Margeurite, my BP has been all over the place, mostly low, so my cardio wanted me to DRINK a lot more, try to eat better and get my body's blood/fluid volume back up to par. Thanks for all your responses, as usual you're all a wealth of information. But at least in this case it seemed my cardio did take this seriously.

Chris

 

[Marguerite53]

Oh good! Glad to hear that you were able to take some action and get some "service"! I know you will be back to tell us what the CT scan showed, when you get those results.

Like I said before. This is all scary stuff. It's hard to have faith that your body is healing properly.....really hard!! Just wait til you start having some arythmmias!! Sorry! Those are what scared the bajeebers outta me! You aren't going to have any.....repeat after me......I'm not going to have any.

Rest, rest, rest. Breathe, breathe, breath......walk, walk, walk. Look out the window. Watch the sunset. Get a gentle neck massage. Sigh. Be glad. You're here!!

Hang in there!! We're here 24/7 !!

Marguerite

 

[temp69]

Metaprolol?

Metaprolol?

Weird thing is, side effect is headache, and yet it's sometime prescribed for treatment of migraines.

My wife suffers from migraines, gets botox shots to help. Don't really know if they work, but she seems to think so.

Darkness is good. Ice can help. Rubbing of the feet can be helpful. Any HEALING TOUCH is good.

Sorry to hear about the troubles. I am sending prayers your way and as many good vibes as I can muster. Good luck.

temp69

 

[traumahob]

Please make sure he has been worked up for anti phospholipid syndrome/anti cardiolipin antibody. This is an auto immune disorder that causes a hyper coaguable state. This can result in microclots causing stroke, amaurosis fujax(similar to occular migraines),DVT, valve damage and other cardiac problems. It is diagnosed with a blood test. My husband has this. It was ignored by his first cardiologist until it resulted in catastrophic aortic valve failure and aortic anuerysm. (He blew a hole in one of the leaflets of his aortic valves.)Deb

 

[Bob M.]

It is very interesting reading these posts. I had occular migraines for 30 years up until my heart went into atrial fibrillation in December, 2005. At that time they put me on Coumadin and I haven't had an occular migraine since then. And, by the way, I had AVR on May 8, 2006 and still haven't had any occular migraines. I thought it might be due to the thinning of the blood by the Coumadin.

 

[traumahob]

By the way, John is on a baby aspirin and coumadin. He continued to have TIA symptoms after his valve replacement until the baby aspirin was added even though his INR is kept between 2.5 and 3.5. He does home test. Deb

 

[musician2k]

Bob: Yeah I was hoping for that kind of result after being put on Coumadin (I'm now on 10mg daily) but no such luck. But, after Thursdays' episodes my cardio put me back on 1 baby aspirin daily. Haven't had an occular or TIA-type episode since then.....so let's knock wood.

-m2k

It is very interesting reading these posts. I had occular migraines for 30 years up until my heart went into atrial fibrillation in December, 2005. At that time they put me on Coumadin and I haven't had an occular migraine since then. And, by the way, I had AVR on May 8, 2006 and still haven't had any occular migraines. I thought it might be due to the thinning of the blood by the Coumadin.

 

[geebee]

Bob: Yeah I was hoping for that kind of result after being put on Coumadin (I'm now on 10mg daily) but no such luck. But, after Thursdays' episodes my cardio put me back on 1 baby aspirin daily. Haven't had an occular or TIA-type episode since then.....so let's knock wood.

-m2k

Glad to hear things are settling down and the aspirin seems to be working. Don't be suprised if you still have some but time will help also.

 

[Ozmercy]

great news

great news

That's great news I hope it continues to go well.

Randy