Constant Migraines, Neurologist appointment coming up soon

[rareed]

Hey Everyone,

I'm new here to the site. Two years ago in the summer of 2008 when I was 19 years old I found out that I had BAV and a thoracic aortic aneurysm. Later that summer I underwent open heart surgery and had my aneurysm removed and replaced with a Gortex graft. They said my valve looked fine but later on in life would have to eventually be replaced, most likely when I'm 50 or 60 years old.

About a year to a year and a half after my surgery I started experiencing migraine headaches. I had a bunch before my surgery, and that is actually what prompted my doctor to take a closer look at my heart (they heard a slight murmur when I was 13, and I didn't have my heart checked for 6 years). I've had check up's with my cardiologist every year since my surgery, and this past March my cardiologist said everything looked good.

At the beginning of October this year, I decided to visit my regular doctor and tell her about my headaches, and I began to keep track of them. She prescribed Diclofenac, a strong anti-inflammatory drug, which did not help my headaches at all and then prescribed me Sumatriptan succinate, which helped my headaches most of the time. In the month of September I got 13 migraines, October I got 14, and I've already had 6 in the month of November. She referred me to neurologist and I have an appointment December 6th to get checked out.

With these migraines I don't normally experience any visual auras, but sometimes I will have a visual aura with no headache. These migraines are always unilateral and occur on the top right side of my head, usually above the eye. The pain is usually a constant pain, and can sometimes be throbbing. Additionally, with these migraines I commonly experience nausea, pain in the back right side of my neck, and sharp stabbing pains in the location of the headache. The past three days my head has just felt "weird" in a sense, like a constant pressure throughout but mostly concentrated where I get my migraines. Fatigue is also a problem for me the past two months or so. I get 8 to 9 hours of sleep a night, yet take a nap almost every day after my college courses and work. I was just wondering if anyone else has experienced these same symptoms? Maybe this has something to do with my BAV?

Thanks for listening!

 

[jake]

Constent Migraines I feel your pain!

Constent Migraines I feel your pain!

Howdy and thanks for posting your comments/concerns. I had my pre-surgery visit with my surgeon and I asked pointed and specific questions regarding migraine headaches and ocular migraines after surgery.

He specified that people who currently get migraines may experience increased incidents of migraine headaches. There is not a specific reason for this, but it is not uncommon to have this occur. He also indicated that after valve replacement/aortic repair, or both, many people who did experience migraine headaches indicate a reduction and/or elimination of migraine headaches.

He indicated that often times it’s less about the surgery and more about the anesthetic that used to be used when it comes to the increase in the frequency of migraine headaches. The standard anesthetics that were used for many years used to cause a lot of lingering problems for people who had to be under as long as a heart repair patient would usually be under. There are now far better anesthetics available that not only reduce the incidents of migraines but also the problems many people complain of like changes in taste, smell and other sensory changes many people have after surgery and linger sometimes for months and years.

Regarding ocular migraines, I have read a lot here on the site about people who experience this. I asked my surgeon about these and he indicated that this occurs with about 5% of his patients after surgery. Now I will do the best to explain what he told me, but I do not have the nomenclature that he has to bring to bear so I will try to explain it as I understood it.

When an artificial graft is placed on the Aorta, sometimes the sutures or the pieces of grafting material that is placed inside the existing aortic wall to sandwich the aortic wall between it and the graft material can cause issues with damaging blood cells rushing past it. In other words, it’s kind of like mini-clots that can affect the neurological functionality of the brain. Although they are, for the most part, non-life threatening, he indicated that when this occurs, he places his patents on plavix to stop these abnormalities.

I really apologize for the total lack of proper nomenclature and the very “lay-person” method in which I am describing what I heard, but I am hoping my very basic and crude information may give you a few more questions you can ask your cardiologist or surgeon. I am just shy of two weeks away from my surgery and all of these things are weighing heavily on my mind. I too am a migraine sufferer and let me tell you, sometimes they are simply horrible!

 

[rareed]

Thank you Jake for your input! And I understood your explanation of the mini-clots that occur, and it makes sense and so does the anesthetic explanation. I'll have to mention that to my cardiologist next time I see him and see what he says.

Good luck on your surgery! I'm sure all will go fine :]

 

[Davidr]

Hi there,

I have a familyhistory of migraines, and had many, many migraines when I was younger...not the amount that you have, but I had the severe ones that started with the visual aura, and progressed to a full-blown ocular migraine with zero tolerance for sound or light...and of course the constant nausea that accompanied it.

Since my surgery (Aortic Valve Replacement, ex bicuspid aortic valve), i have had less migraines, and they frequently do not progress into headaches. I do, of course, still get the visual aura, and that weird sensation you mentioned at feels like you have a clamp on your brain. But thankfully most of the time it is tolerable, and i can continue to work. I have probably only cancelled work due to migraines 10-15 times in the past 10 years as a result of migraine (average 1.5 day/ year), perhaps less...

One of the factors my GP mentioned was the fact that my cardio had placed me on aspirin as a part of my ACT, and he mentioned that this would have a slight antiinflamitory effect, and would probably hijack the migraine in it's progress to a full-blown migraine. The explanation of micro-clots makes sense too, since aspirin inhibits platelet formation (function?), and thus this would also have an effect of reducing micro-clots.

Are you on any form of ACT? My warfarin taking becomes a problem with Migraines as anti inflammatory drugs have horrid interactions with warfarin, and cause a yoyo cascade on warfarin dosage and INR levels.

I hope your neuro appointment goes well, let us know what the neuro says.

David

 

[normofthenorth]

Interesting stuff to me. Frequent classic migraines when I was in school, faded into rare auras as I aged. Over the past 5-ish years I've had a handful of miserable brief episodes that have been diagnosed as "icepick headaches" -- though they are basically painless, presumably quite unlike a real icepick. The IHs are said to be a rare later-life complication of migraine. My OHS is Dec. 1. Pre-surgical workup is Tuesday, and I think I'll be meeting my anesthesiologist then. Now I'll know to mention migraines to him/her and ask about them, and the choice of anesthetics.

I'm surprised that baby aspirin can help ward off any kind of migraine. Two full-size ones always bounced right off my migraines, like bullets off Superman's chest. . .

I also thought it was relatively common for the zipper crowd to take ACT like Warfarin and aspirin or another NSAID at the same time -- either for a few months after surgery or for life with a mechanical valve. Are the "horrid interactions" and "yoyo cascade" common, Davidr, or something that you're especially prone to?

 

[rareed]

Hey Davidr,

I'm actually not on any form of ACT, the only daily medication I take daily is birth control. Thanks for your input! I will update in a couple of weeks with what the neurologist says.

 

[Marguerite53]

Hello. I have written on visual migraines many times here on the forum. I have had them since high school and am now in my 50's. They are rarely followed by the headache. i am lucky!! However, sometimes the visual disturbance is fantastic enough to cause me to have to stop driving or cooking. They always last about 20 minutes as they travel across my visual field. Usually it is just the left eye. On other occasions I get a complete black-out of the upper right quadrant of my left eye's visual field. My surgeon didn't like the sounds of that (stroke, detached retina) but I have had other physicians remark that it sounded like part of the migraine sequence to them and that is how I am accepting of them.

I noticed that just after my surgery, they seemed to be gone. Then they came few and far between. Now, almost 5 years post surgery, they are occurring with about the same frequency as ever before; several a week, I guess. I really just let them blow through like a heavy rainstorm these days..... whatever.

I have learned, to a large degree, what triggers them. Many, many foodstuffs will set them off for me. Caffeine usage will play with them (and your being a college student -- are you a heavy coffee or tea drinker?). As a woman in my 50's I know that my hormonal changes are definitely contributing to their frequency. Bright lights or sunshine (like those bouncing off a windshield, or off a body of water -- even a large rain puddle) are instant triggers. Scented things are to be avoided -- bath soaps, laundry soaps, laundry softeners, perfumes.

I am sorry for the pain you are experiencing. I would look at your diet, perhaps consult a naturopath or accupuncturist and get some advice and quite possibly some relief. If you could do that before you see the neurologist then you would be going in armed with that much more information. It might be as simple as taking most of the wheat out of your diet! Who knows! But I am glad you are seeing and asking doctors. It is wise to rule out things that they know to look for. Peace of mind for you, too!

Good luck and keep us posted.

Marguerite

 

[rareed]

Hey Everyone, Just thought I'd post an update

I had my appointment with the neurologist the other day. She said it could be a number of reasons causing my migraines. She put me on a medication I will be taking everyday, Nortriptyline HCL, and it is an antidepressant that is supposed to help with migraines. I started taking it on Tuesday December 7th, and have had two really bad migraines thus far. I'm hoping with the longer I'm on it the more infrequent my headaches will occur. She also prescribed me Maxalt for when I do get a migraine, and something for the nausea that comes along with the migraines. She wants to see me back in March to see how the medicine is helping, and if it's not helping by that point she will most likely do an imagining study of my brain.

Thanks again for your replies!

 

[buncle]

Hopefully this will do the trick for you.Wishing you the best.

 

[jake]

Migraine Meds

Migraine Meds

Hey all:

Seeing as we are on Migraine issues, for those fellow migraine sufferers, both my wife and I have found great success in beating those bad migraines that get away from you with a drug called RELPAX.

Typically, if I take a Relpax when I feel a migraine coming on, I can minimize to only one tablet, but if I’m too late to snuff it out in the preventative mode, a second tablet has eradicated even the most ominous grand migraines for me.

I know every migraine has its own fingerprint (different from all the others) but Relpax has not let me down. Perhaps you could ask your neurologist about it. The Cardio and Thoracic surgery folks at U of M were not familiar with the drug, but said I could take it if I had to while in the hospital after surgery. Fortunately, no migraines during the 5 days in the hospital.

Incidentally, today (post aortic repair day 8) I had my first "ocular disturbance." It was most strange but only lasted about 15/20 minutes and than just went away. It was in the right eye only and didn’t follow or bring on any migraine headache. I just have to "keep my eye" on that so to speak.

Have a great one and keep the info coming!

 

[JeffM]

This migraine discussion is very interesting to me as I hope to someday have enough information to be able to take steps to prevent them. I've been a sufferer of migraines since age 18 (now 55). AVR and Maze 2 years ago. I rarely get any severe pain, but I do get that sensation of something "clamping down" on one side or the other, always the opposite side from where the aura occurs. I'll avaerage one of these a day, sometimes skipping a couple days and sometimes getting 3 within a 12 hour period. Auras typically last 20 - 30 min and make driving dangerous and reading very challenging. They are disruptive to say the least; however, I'm thankful that I RARELY get severe pain like I did in my younger years. Another rare symptom I have associated with migraines, although they have not been diagnosed as such, is a brief (2 - 3 min) wave of dizziness. I don't know what my specific triggers are, but it does seem like the frequency increases when I'm feeling stressed out and if I'm clamping my teeth together (the two often go hand-in-hand). I'll be staying tuned to others' experiences and progress. Thanks for the thread.

 

[Maryka]

I get visual migraines whenever I get stressed. (That is, little prizms wandering through my visual field preventing me from seeing.) My close Marfan Syndrome friend, Patricia, had terrible painful migraines--once even overdosing (accidetally?) because her regular dose of pain meds did not help the intense pain. Stress (test time at college, for instance), makes me stress out and get visual migraines. I am looking forward to what you learn about this problem.

 

[jake]

Migraines and TMJ

Migraines and TMJ

As I read some of the new responses, particularly the one by JeffM I am reminded of how much relief my wife and I received from treatment of TMJ.

I discovered a doctor who specializes in TMJ and jaw related disorders and he made the clear link between jaw tension, alignment and migraine onset. As we all know, once a migraine is given birth to, it takes on a life and personality of its own many times depending on how we respond to it.

With me, my manifestation of TMJ was primarily the pain in my face and jaw not to mention the damage to the teeth on the right side of my face due to clinching and grinding. Many of us clinch and grind when we are in pain and simply do not realize we are doing it. Not only does this change the alignment of our jaw, it causes incredible stress to the TM joint(s) on the affected sides. Add to this the fact that blood and nerve roots to the brain traverse the TM joint, and it’s not a far reach to consider that TMJ can play heavily into migraines and even these visual ora's.

I have not worn my bite splint in a few months. My bite had been changed to the better based on how my teeth have been wearing. I got an adjustment, and got a toot canal adjusted just before heart surgery, all was well.

Went into the hospital, got a massive invasive surgery, and entered a world of pain and pain control. Within 3 days, my jaw was throbbing, my teeth were hurting, within 5 days, the pre-migraine headaches started and within 7 days I had my first visual ora (ocular migraine). Now I am no doctor, but the connection between pain from surgery, lack of sleep, stress and unconscious clinching and grinding and guess what.......I think my TMJ has started to flair up again!

It was not until jeffM mentioned the clamping and grinding that I really did not put 2+2 together. Sure, pain pills can control my waking pain, but now that I am sleeping well past my medication cycle, I wake with incredible pain and not just in the incision and back buy my jaw.

TMJ is like a runaway locomotive and it can cause increases in jaw, migraine and facial pain as well as a host of other issues that can get worse and increase in intensity and frequency.

The bite splint goes back in tonight and Jeff I thank you for the mind check brother! For all involved in this Migraine discussion, I would advise you to check out some TMJ related websites. It may not necessarily be our cardio issue causing the headache and ocular anomalies; it could be manifestation of TMJ that set the ball rolling or may be contributing.

I have been seeing Dr. John Halmaji here in the Detroit area. His website is a wealth of information:

http://www.michigan-headache-tmj-doctor.com/index.html

I hope some of you may find this helpful. It truly saved both my wife and I hundreds of hours of pain and loss of productivity. Im not saying it’s the answer for all, but it sure did work for my wife and I.

 

[ALCapshaw2]

Hi there,

SNIP

Are you on any form of ACT? My warfarin taking becomes a problem with Migraines as anti inflammatory drugs have horrid interactions with warfarin, and cause a yoyo cascade on warfarin dosage and INR levels.

David

HUH? I know that anti-inflammatory drugs can increase the risk of Bleeding when taken in conjunction with anti-coagulants but I have NEVER heard of them actually affecting INR. FYI, many anticoagulated patients take a Low Dose Aspirin Daily with NO problem.

Is this something that you heard or have you actually experienced a change in INR due to taking an anti-inflamatory drug?

Have you ever had a "Horrid Interaction" with anti-inflammatory drugs and anti-coagulant drugs?
Or are you just spreading another Horror Story without evidence?

'AL Capshaw'

 

[Protimenow]

From what I understand regarding the anti-inflammatories, they make the platelets more 'slippery' - which can cause increased bleeding. However, the effect of aspirin (and other NSAIDS) is not supposed to be one relected in INR.

As far as migraines are concerned - I get a few different kinds. Ocular migraines are the most frequent - and they usually resolve within 20-30 minutes (as others have reported). I'm not sure - but sometimes having something with caffeine - a coke or a chocolate bar - can shorten these ocular symptoms.

I also get a different strange migraine symptom (at least, I think it's migraine-like) -- a numbness - sometimes on one side of my tongue - sometimes tongue and lips, and sometimes radiating down. Sometimes, it's tingling in my fingertips - it makes the fingertip feel as if it wouldn't feel a lancet or anything else. A somewhat scarier version effects my speech centers - sometimes I have to be very careful and very slow if I want to get words out of my mouth that make any sense. I can think the words - but just can't vocalize them. Like the ocular migraine, these may be annoying and troublesome (and sometimes rather scary), but they resolve fairly quickly and physicians I've mentioned it to didn't seem particularly concerned. (Plus, with the ability to test my INR when I want to, I can confirm that my INRs were within desired range and relieve my fears about possibly throwing a clot).

I don't think TMJ is involved in my case.

I'm interested to see if anyone else on this forum has dealt with similar 'migraine' symptoms.

 

[Davidr]

Hi al,

Actually, every anti inflammatory I have seen includes a contra-indication warning for warfarin

And yes, a few years back, i was prescribed an anti inflammatory...when I questioned the doctor, he said it would be fine...it took me about 6 months to re-stabilize my INR.

I obviously have no hard proof that this was due to the anti inflammatory drugs, but since my history includes very stable INR on my warfarin dosage (once it gets stable) fit the past 10 years, i am inclined to suspect that cause-effect.

My cardio agreed with me

And I am also on low-dose aspirin, which has no effect on my INR.

David

 

[Davidr]

Hi protimenow,

All the symptoms you have mentioned, with the exception (Thankfully) of the Speach impediment are common with me.

I was always told that caffeine is more likely to exacerbate the migraine, but if you say that in your experience, it shortens it, then I will definitely try that...although the last thing I feel like doing then is eatin, as I usually feel slightly nauseous too!

David