Complicated Migraine at age 33?

[November4]

Good day all.  I went to the ER in November and was diagnosed with having had a TIA.  When I was released I went to see follow up doctors. I saw a Neurologist and she was bewildered. She didn't know what to tell me. In her final notes she diagnosed me with a complicated migraine. During the appointment she said that a complicated migraine is gotten by 15 year olds. She said I'm far from 15. :)  Then she goes to her colleague and they can't decide what's wrong with me.  I was diagnosed by the ER with a TIA and then because they can't decide I feel she just labeled it a complicated migraine. It's ok not to know the answer. At the time of the stroke symptoms I had I was using the birth control patch Ortho Evra. I was told by everyone to stop. I did. I haven't had any other kind of episode. No headaches before or after. I had a dull ache in my head while I lost vision and had numbness in my left side in November when I went to the ER. Is there a way to really tell the difference between a TIA and a Complicated headache?   My question really is, is it common for a 33 year old to have those complicated headaches? Will they happen often? This is the first and only time I have ever had anything like this. Is it common that it happened out of the blue and while I was using the birth control patch? Is it safe for me to go back on the patch if she said it was a complicated headache?

Thank you!

[Bilberry]

I have a 21 yr old daughter who suffers from severe migraines. This started approx 2/3 yrs ago when she collapsed unconscious during a migraine for about 30 minutes and a second collapse later that year where she blacked out for about 15 minutes.On each of those occasions, she had severe migraine and symptoms started before loss of consciousness with tingling in arms and feet, total paralysis of left arm and leg. She was tested with EEG, cat scans etc for seizures and eventually diagnosed with Basilar Migraine by a neurologist. She was put on Topamax for about a year and the migraines did abate but she had side effects of numbness and tompamax was stopped to see how she would do without it.
Her migraines are most definitely directly linked to the time she gets her period and the neurologist said the hormones are directly linked to it. She was advised to get something to stop her periods .The Bar pill was put in her arm but had to be removed because of very bad skin blistering and then she went on Dianette pill. Yesterday she blacked out again for about 10 minutes and the doctor this morning told us she has to stop Dianette and can't go on any pill with oestragen and prostragen so is going to try her with Marina coil. She is treating her migraine with Arcoxia and solpadol. Does anyone out there know of a suitable contraceptive pill that will help regulate her hormones and won't cause stroke as the doctor suggested that was a real possibility on many of the pills out there for severe migraine patients. Can anyone recommend a pain reliever outside of imigrine or zomax type which neurologist says are not suitable for her?

Thanks from a concerned mother Bilberry.

[sara12345]

So sorry to hear about your situation.  Even though they couldn't confirm that it was a stroke, it may well have been one since you were in the stroke ICU and other things that you wrote.  Just for your information, a number of stroke survivers do have bad headaches for weeks, months or even years.  That is not to say that there aren't many treatments for them.  That was the very worst problem I had after a major stroke that was confirmed.  

As to your other problems, if it is a stroke, you will regain more and more with time, especially if can get physical therapy or even speech therapy.  I have also read about such severe symptoms with migraines.  So it could be either a stroke or migraine.

With your migraines, get a neurologist or headache specialist other than the useless ones that you have seen already to get some relief.  

Send a reply to me if you have any questions about what might help.

[MiMiFlo]

To pick up where I ran out of characters on previous post. Too long-winded. lol:

BTW. I have 3 adult daughters--ages 28, 34, 36. ALL THREE OF THEM HAVE NOW BEEN SCREENED AND ALL THREE OF THEM HAVE PFOS.

The 36 y/o PFO is very small and not significant and she doesn't need any treatment. She also doesn't have migraines or weird neurological symptoms.

The 34 y/o was having significant symptoms, migraines with aura, significant shortness of breath with pregnancy and activity that she didn't realize how bad it was at the time. When she was 32 (one year after my PFO closure,) in my presence she had a 2 to 3 minute episode of complete loss of vision. I made an appt for her to see my cardiologist who did a bubble echo and it showed a large hole with constant shunting. She went for closure and it was found that she had an ASD (which is closed the same way). She is still leaking a small amount after closure and they have done further tests that show she has a small PFO that was masked by the ASD but they don't recommend any further procedure except yearly monitoring at this point.  She still has migraines but her other symptoms are dramatically improved.

The 28 y/o has a PFO that is leaking all the time and is worse than mine, but for some strange reasons she isn't having any neurological symptoms. Her migraines are without aura and she gets tired and short of breath easy. BUT the FDA has established criteria you have to meet in order to have closure--which are stroke, TIA'S or warning symptoms of possible stroke--the things all of you are having). So, she cannot get her PFO closed (the device costs about $25,000. So once again the lobbyist strike and the FDA is basing criteria upon cost--my opinion but I'm convinced I'm right!). In other words the FDA is saying, "wait until you have a stroke or a partial stroke and then we'll let you get it closed".

So, I guess my message to you is not to let anyone convince you that you are over-reacting or that "it is no big deal". I would urge you to be aggressive in your search to find a doctor who will take you serious and aggressively pursue finding out what is going on. I don't care how long you've been with a doctor or how nice he/she is or if he/she has been the family doctor since your grandmother on down, if he/she is not pursuing what is going on, then get other opinions and keep getting opinions until you find the right doctor. Don't give up and let them convince you that it is just you and to "just make the best of it"

Good Luck.

[MiMiFlo]

MiMiFlo here.

I'm  sorry I haven't responded to your posts but my husband has been very ill and haven't had time to be on blog.

My first comment is to all of you. It doesn't sound as though you've had a Bubble Echocardiogram done. I urge you to insist that your doctor do one to rule out a PFO or to refer you to someone who can. This is especially important for "psychimom" and "defdiz". Psychimom, ask if they did a bubble echo to rule out a PFO while you were in hospital. Defdiz, I think hormones are certainly related. My episodes were worse with ebb and flow of hormones. With Pregnancy, I'd get what I called an "orgy" of migraines around the 6 weeks point but after that, I didn't get any during  the rest of my pregnancy and they would be better for a while after birth of my children  (well except for that one episode where my words were jumbled and not what I wanted to say).  But, Defdiz, you started when you were only 3 y/o. That is a bit young for hormonal causes. Which is why it really makes me think you should have a PFO or something called an ASD (anterior septum defect) ruled out.

(DISCLAIMER. THIS IS NOT MEANT TO BE MEDICAL ADVICE OR INFORMATION. I AM NOT A DOCTOR AND NOT QUALIFIED TO GIVE MEDICAL ADVICE OR INFORMATION.)

So with above disclaimer in mind, let me tell you what was explained to me and what I understand about  a PFO and ASD and why it is so important.  A PFO is normal for fetuses while in womb but when born, it is a hole that is supposed to close. In some people it does not. ASD is, however, a heart  birth defect but is also a hole in the heart. Both are holes in the wall that separates the left and right side of the heart. Either one can cause major problems. One of the main risks associated with having a significant PFO is stroke. (not all PFOs are big enough to be a risk) and TIAs (ministrokes or the kind of neurological events that many have described that eventually resolve but in the meantime scare you and limits what you can do). The other problem with big PFOs is that if a significant amount of blood is "shunted" (in other words passes through the hole to the other side of the heart without going through the lungs) a significant amount of blood is being pumped back into the body without oxygen--which of course could mean that the body cells are not getting as much oxygen as they need. If the brain doesn't get as much oxygen as it needs, it has the kind of symptoms that all of us have described. If you have a PFO, it can be of varying significance. For example, some people with PFO only shunt blood when they do something that really increases the pressure inside the heart. With other patients (as was my case), the blood shunts with every single heart beat.  

My cardiologist says that the medical community is only now beginning to understand the problems with undiagnosed PFOs and a large number of neurologists and doctors still refuse to admit PFOs are a significant problem. He has found a large number of adults who have been diagnosed as all of their problems being attributed to migraines when in fact a significant part of their problem were PFOs. In fact, once my PFO was diagnosed, my neurologist of many years advised me NOT to get it closed (I made that my last visit to him). Boy was the wrong! So you are likely to get varying degrees of reaction.

Let me tell you how a bubble echo is done and how benign it is (of course you have to be at a facility that is set up for and trained in doing bubble echos. That is very important that they have both knowledge and experience or you may get a false negative or even if positive it may be read wrong).

My procedures have been as follows: The technician does a regular echo and after they complete that, a nurse comes into the echo room and inserts an IV into your arm. She has system in which she draws up normal saline into a syringe and then she shakes it to get what are called "agitation bubbles"--very, very tiny bubbles that are harmless. She pushes the saline solution into the IV while the echo tech does an echo picture of your heart. Then they ask you to do several physical things such as coughing, bearing down, sniffing, etc and the nurse pushes the normal saline with agitation bubbles into the IV each time. The echo machine is so sensitive that it can follow the path of those teeny tiny bubbles.

The normal path should be that the blood and the bubbles go into the right top chamber of the heart, then pass into the right lower chamber. From there the blood (don't know how if you can still see bubbles at this point) should go through the pulmonary blood vessel into the lungs where the lungs takes away the carbon dioxide from the blood and put oxygen back into blood. Then it passes back to the left upper chamber of the heart and then passes into the lower left chamber of the heart. From there the heartbeat pumps the blood back into all parts of the body to give oxygen to all the body cells and the process repeats with each heartbeat.

If you have a hole in the wall that separates the right and left side, when the blood with tiny bubbles enter the right heart, part of the blood and those teeny bubbles (the amount depends upon how big hole is and amount of pressure in your heart) will pass from the right chamber directly to the left chamber without going through the lungs. It will then be pumped straight back out to the body. If you have tiny blood clots or even tissue clots, they can pass directly from the right side of the heart to the left side of the heart without being filtered out by the lungs and be pumped into the small blood vessels in the head, causing a stroke or if not a stroke, a temporary disruption of the blood flow. And I already discussed how not getting enough oxygen to brain causes neurological symptoms.

And for Psychimom, there is a study that involves Migraine suffers and PFOs. The study came about because young people and people with no known risk factors who had strokes and were found to have a PFO as part of their evaluation (that is why I'm wondering if they did a PFO work-up on you--usually they will for cases like yours) would have the holes closed. Then in follow-up visits it was discovered that a large number of them were saying that their migraines were dramatically better. Henceforth the study was proposed and is now in progress in several big medical centers to determine if there is a significant relationship between PFOs and Migraines. I don't know what the result of the studies will be but I can tell you that closure of my PFO dramatically improved my migraines and weird neurological events.

As I mentioned before, however, it did not completely eliminate them because as the "new" neurologist, who diagnosed me with complicated migraines, explained, that although closure of the hole in my heart was  very important and alleviated a significant risk factor, my extra sensitive blood vessel spasms were still a problem. And that is where the "cheap" drug called verapamil has been so effective with me. I do still have an episode here and there. But they are very infrequent and not near as bad as before.

Now, however, my "new" old neurologist has retired and I'm trying to find a new one. So far no luck. I already know that most of the neurologists in my area are the "cookie cutter" ones and we for sure do not need what I call a "cookie cutter" neurologist.

(I'll continue in next post)

[defdiz]

I had my first "seizure," for lack of a better word, at three years old. I saw little diamonds in the air for a bit, then started to get fuzzy in my thinking and communicating. I remember laying on my mom's bed, watching her curl her hair in her bathroom, and trying to tell her I felt "funnnzy." Then, the headache started, (and yes, I really was just three), and my left side of my body went numb. My cheeks, tongue, lips all felt swollen and useless. My left arm and leg had no feeling sensation except heavy. No tingling, no buzzing. I ended up vomiting and feeling like I was caught in a whirlpool.  Only sleep helped.
The next time this happened was my first day of kindergarten at a new school after a move, trying to use an awl to punch a design into a piece of leather for a father's day project. No auras, just instant "I can't keep a grip on this thing," and loss of communication ability. Same sensation of face being swollen on the left, and numbness up and down left side of body. Headache, and vomiting. Mom took me physician, who told her I had "petit mal" epilepsy.
These continued all through growing up, into my 20's. Four episodes in elementary school, spaced out, maybe two in junior high, and the most frequent attacks happening in high school, like two a month. I had many MRIs and CAT scans that revealed nothing, not even the presence of epilepsy. Migraine med's didn't work. Only sleep helped in making the episodes livable. Was found banging my head against the wall in chuck e cheese's one Easter (I worked there), because only the sensation of hitting my head against a hard surface seemed to lessen the pain, til the numbness kicked in and someone had to drive me home.
When I got pregnant with my first child, a girl, the episodes stopped. Cold turkey. For five years. Then I was pregnant with my second child, a boy, I had one "seizure" with diamond auras, very light headache, and left side numbness. No nausea. Got taken straight to ER, where they couldn't find a damn thing wrong with me.
Now at 31, and having three kids, I very rarely get even a bad headache, let alone migraine, and only experience either an aura every once in a while, or the left side numbness that isn't actually a stroke, but very stroke like in mimicry. Maybe the migraines are hormone related?  

[alicenl]

So nice to read that people are having the same symptoms as me.
I am 25 and got married about 5 months ago. On honeymoon I got a Migraine that has not gone. It started with a classic seizure - severe headache, confusion, sensitivity to light etc. Now, for about 4 months, I have had mild pain above my left eye, confusion and weakness in my left side. I too have been to so many doctors, had MRI scans, Blood Tests etc. but to no avail.
I was wondering if anyone has been prescribed any medication that has made a difference to them? Is there anything that one can take to get rid of these symptoms?
I am feeling desperate right now and my poor husband is wanting the girl he proposed to back...
Many Thanks