Sara's Journal

Ruth Valenzuela  I'm not sure what I'm having but my eyes play havoc with me. I get blurriness and feel like my head is really heavy where I just want to lay down and try to let it pass. It's difficult to drive sometimes because it just comes on without warning. Sometimes I'll get double vision with it and I'm wondering if they are ocular migraines although I don't have pain, just very difficult to deal with. I'm experiencing it on a daily basis now. I'm one year post on the 29th of Sep. I'm very thankful because my heart is doing fine.

Sara Hedberg  Hi Ruth -- Doesn't sound like MAs as I understand them. But I'm no doctor! I would suggest you chat with your primary care provider/eye doctor about this....
Glad your ticker is fine! Isn't OHS miraculous!
Good luck,
Sara

Ruth Valenzuela  Yes OHS is really wonderful. I saw my eye doctor and he says my eyes are healthy and to see my primary care doctor. I'm hoping it just goes away but it looks like I'll be making an appointment soon. Thanks and I hope your migraines go away. I've read where others have experienced migraines after OHS.

Sophia Ridley  Hi Sara, mine start as a glisten where have difficulty reading and then develop into the classic aura of looking through a crystal or a kaleidoscope. They are mostly painless but have an intensity that leaves me feeling drained.
My MRI ruled out anything neural therefore I can only assume mine are due to my medication (bisprolol and Rivaroxaban) which leads to low blood pressure. If I haven't eaten or drunk regularly this affects me, especially drinking which would relate to low BP.
Have you taken your BP and traced your pulse during an attack (I use an app)? When it happened in hospital whilst waiting for an appt they also checked my blood sugar (that was fine, but might be worth checking too). Thyroid function is another thought and checking your electrolytes. I've had a few over the last few days and I am sure it's because of working late and not remaining well hydrated. I wear glasses now for PC but I'm not sure if that's OHS or age!!

Kate Watson  I tried Lyrica for about a month, which is a very similar drug, but it made me very depressed. Fortunately, I figured out that was the cause. I was taking it for migraines, as well as fibromyalgia pain, which often go together, but I wasn't on it long enough to know if it worked. I had daily chronic migraines as well as acute migraines several times monthly for many years, but they started to decrease greatly when I was doing yoga daily (I have issues with muscle tension in my neck which contributes to my headaches so yoga helped) and I also used the Cefaly device. Have you heard of Cefaly? I think it may be contraindicated if you happen to have a pacemaker fyi, but it seemed to make a huge difference for me. It's expensive and needs a prescription but was so worth it. I am about 9 weeks post op, and I haven't had a full blown migraine with aura since before surgery, which is kind of a miracle for me. I can't be sure why because I haven't used the cefaly or been able to do yoga since before surgery. I know some people say their migraines improve post surgery, so I'm hoping I'm one of those lucky ones! Interestingly, I had also OHS 11 years ago where they replaced just my aortic valve (this time both my aortic and mitral were done) and after the first surgery I had awful migraines with aura every single day. It seemed to be the dose of beta blocker I was on because once I cut that back, they came less frequently. Good luck on your research!

ConNie Romo  I have not tried GABA. I've had migraines with aura since I was 8 y/o. when I was younger the headaches, nausea and vomitting were pretty bad. Hangover would last for days and I was miserable. I've used Feverfew tincture and capsules, ginger tea and moringa supplement ( the best one so far for me). When I started taking moringa drink for 2 straight years I didn't have any migraine attack. I let up on drinking it and the headaches and aura came back but we're mild and short lived. Nowadays my migraine attacks are easily manageable. Massage has helped too.

Sara Hedberg  Kate & Connie --
Thank you for your messages.
I am so sorry to hear of your experiences with MAs. They are the worst!
I am still getting them -- averaging 2-3 per month....
I will look in to the strategies you have suggested, with thanks.
Any updates on your MA situation?
Sara

Lilly Black  Sara, my migraines have greatly subsided after my valve replacement. I have done so much research about migraines, but never once have I seen anything exactly pinpointing why people experience migraines. A list as long as my arm as to what potentially could be the cause, but no confirmations. Cortical spreading depression has also been implicated in migraine aura. For me, this is the best explanation. I believe that now since my valve replacement, my blood flow and oxygen to my brain has improved, thus reducing the migraines. I still get them but compared to getting them at least twice a week before OHS, I may have had 2 or 3 migraines in 2015.... a huge improvement for me. Hope this helps!

  I have gotten migraines with aura for 20 years. Normally 4-5 a year usually in the fall. I had my MV repair 12/7/2015 almost 6 months now. Since the OHS I have had them almost every day. From the constant butterflie lights to the bad ones that end in loosing my sight for a bit. It makes driving exciting. Or if I'm at work and up a tall ladder or on a roof. I have just gotten used to them. My father gets them, and I have passed it on to 2 of my 6 kids. I have seen a neurogilst but that just means more meds. I am off all meds except the aspirin a day. I have felt 100% better being med free. In time the migraines frquency should lessen. In the big spectrem of this its not that bad.

Sophia Ridley  Hi Sara, mine worsened after my mitral valve repair. I had probably 5-10 in total pre-surgery and now get clusters of them. It could be my medication as on beta blockers and Rivaroxaban. The brand of my bb altered and they got worse, I switched back. I have found I need reading glasses (which could have been age). I have to drink a lot of water to keep my blood volume up or get low BP which is a trigger. I try and eat a balanced diet and mindful of magnesium and potassium levels, if I'm lax then they are more frequent. If I'm active then less. If in bright light, more frequent. If I'm tired, more frequent and also if I can feel my heartbeat in my ear. I've an MRI shortly when they figure out how to scan me with an atriclip, I'll let you know if I discover more. My rear neck muscles are very tight which I've heard can be a cause, think this was the position on the op table.
I don't want to take more meds so really keen to find a solution.

Wanda Mroz  I have had aura migraines since i was 19. Not often at all and not painful per se... just can't see when I have them. For whatever reason, when I am on narcotic meds, I get a lot of them. So after surgeries of any kind, I get them often. Sometimes 3 in one day. It was that way after OHS too. Now 9.5 months post surgery, they have greatly subsided. So hopefully they can subside for yu as well.

Rita Savelis  Migraines seem to be so personal with each person's migraines stemming from various personal triggers. Hence, the reason it is so difficult for the medical field to find answers. There is something about acceptance of my migraines that helps me get through them. They change, they come and go. They are a part of me. (I do definitely recommend osteopath or physical therapy work on tight neck muscles and the body in general...)

Sara Hedberg  Thank you all for your comments! Much for me to digest and investigate. Also, while I am so sorry to learn each of you knows first hand much of what I am dealing with, it is so comforting to have found others to network with and not face this alone.

Sara Hedberg  What do you do to try to avoid migraines wth auras? Bright lights and electronic devices are a huge trigger so I avoid, wear sunglasses, hats, etc. Also alcohol, so I avoid that. Those seem my main triggers.

Sara Hedberg  And what do you do once you get a migraine? i have to cocoon in a dark quiet place, sleep a lot, I drink extra water. I usually am not too interested in food as I am nauseous (i usually eat very healthy, organic, whole grain, pescetarian diet). I can't take any if the migraine aborting drugs (triptan) due to the heart meds I still take (light doses lisinopril and metoprolol). My neurologist just prescribed a palliative to ease my symptoms during migraine, Fioricet. It worked very well to ease headache and nausea, but didn't seem to shorten the course of migraine(1-3 days).

Sara Hedberg  Neurologist also rcommended acupuncture, which I have just started, and relaxation and meditation. Anyone tried any of these? Any luck?

Sara Hedberg  Lilly -- your story gives me hope! And I want to research cortical spreading depression. Thank you!

Sara Hedberg  Hi Sophia -- You and I seem to share many aspects of this affliction. My neurologist thinks my tight neck/shoulder on right side (pinched nerve in 4th vertebra) might be a contributng factor. My first memory after OHS surgery was excruciating pain in my neck as I think they were transferring me to the ICU. Probably had to do with positioning during surgery and perhaps having to revive me at start of surgery when my heart stopped... I wonder what the heartbeat in your ear is about? You certainly have a good handle on many of your triggers & preventive measures. I hope the MRI sheds some light.

Sara Hedberg  Rita -- I think your recommendation is really good -- body work to release tension.... And acceptance of all this is so healthy (OHS, migraines). Thanks!

Wanda Mroz  Sara about the same so far. What I do to keep from getting a headache is take a painkiller... Tylenol or whatever just OTC, and drink some tea or coffee or something caffeinated. That seems to keep that at bay for me. They just happen. Normally I do not get them often. I love acupuncture although I go for neck issues not headaches.