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Complicated Migraine at age 33?
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!
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by Kat

I went through the whole TMJ disorder treatment for migraines and it didn't work.  I have arthriits and bone spurs in both TMJ joints and was referred for pain management.  You can expect trigger point injections in your neck of Depo Medrol and Botox injections in your head if you choose.  They help some people.  I still have breakthrough migraines even with 10,000 cc's of botox injected into my scalp so  I saw a neurologist last week, also because I was having falling spells without dizziness and  He said "they we're pre-fainting spells".  He did a carotid doppler and heart workup but not an MRI.  I had a heart workup in 2007, perfect.  He put me on blood pressure medicine, which I couldn't breathe on and had to discontinue and Maxalt.  What kind of neurologist doesn't do an MRI, particularly when my father died of brain cancer?  He said my left thyroid was enlarged on the carotid doppler, which gave me a scare.  Thankfully, it turned out it wasn't but the endocrinologist performed some thyroid tests anyway since I have autoimmune disorders (seronegative Rheumatoid, Sjogren's).    Anyway, if you get a good pain management guy, it will make the difference of feeling like living or dying.  They will give you sleep meds, anxiety meds, pain meds and you can start functioning more like a human being and feeling better.
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I am a 35 year old woman who has never had any kind of migraine ever. My mother had them years ago and my sister while she was a teenager. My mother also had a stroke caused by a anuerism in her brain when she was 27. That was later found to be caused by a hole in her heart. About a week ago, I developed a lingering headache that seemed to get sharper in the evenings and my right eye developed a tic about the same time. I thought nothing of either. The headache seemed to get stronger and was not responding to the Tylenol I was taking. I could not take anything stronger, as I have had a gastric bypass about 18 months ago and cannot take any Motrin based drugs. Then last Friday, my headache worsened and my face was out of control. Twitching and going completely numb. The only feeling to liken it to would be after you go to the dentist and are shot with novicane. The twitching of the nerves and muscles made my face look as if parasites were crawling under my skin. I called my doctor and reccomended I come in. While there I desrcibed my symptoms and he stated that I had described a Migraine and gave me a shot and sent me on my way stating it should kill the headache. He could not explain the twitching but made a joke that it looked like there was a chipmunk playing under the skin of my face. Ha Ha. I went home still with a headache and went to bed. When I woke up the next day the headache was still there and so was the twitching and numbness, but I went to work anyway. About noon, I starting feeling really strange. I could not put a thought together and was having trouble typing and focusing. My vision blurred and I got scared. I looked at my co-worker and she knew immediately something was not right. After rushing to the hospital and her praying over me the whole way there and not even being able to tell the nurses or doctors what my name was, I was scared and confused. Why did the words not come out right when  I tried to talk. I was stuttering  and mumbling and shaking so bad, she was holding me as they checked my vitals. After a CAT, MRI, EEG,EKG, and blood work. They decided to keep me over night as my speech was so slow returning to normal. The next morning, my meeting with the resident Nuerologist yeilded nothing new other than him calling it a "complicated migraine" and it may or may not come back. It might go away eventually or it may not. The twitching might go away or it might not. I work in the hotel business and after spending an unfruitful night in the most expensive 5-star hotel there is, I was no closer to an actual answer than the one I got in the ER. The shots they gave me knocked me out but did nothing to get the headache to go away. They gave me Midrin to go home with and it has done nothing. I still even now have a headache and my face is twitching like crazy as I sit here and type this. I went to work today, and started doing research like crazy to find that I am not crazy and I am not alone. I would not wish this kind of pain on anyone, but glad I do not suffer alone. It is so crazy and surreal to me. I have not had any health concerns since my gastric bypass and think this is so strange that a headache could bring me to this. I have to follow up with my doctor and am wondering if it is even worth the co-pay. They obviously have been going to web-md and looking up my symptoms themselves in order to diagnose me it seems. Later today I learned another woman in our departments 12 year old daughter suffers from the same thing. If this is happening, why cannot they not diagnose this and prevent it better. I'm so scared it gonna happen again. I'm scared for my family who looked on in horror as they tried to make sense of my mumbling and incoherent speech.
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I too am a 30 something woman who recently had a 'complicated migraine'.  I too have been put on asprin.  I have also been taken off birth control because of a DVT in 2002.  I have had a constant regular headache since May of 2007.  No test has found a problem- I've had a lot of blood work, MRI and CT.  I've seen an eye doctor, a dentist, had pt and a sleep study...  My doctors all say that I am a healthy woman!  I had several migraines on top of the dull headache.  Then came the complications...  my lips went numb and my legs collapsed from under me.  I had slurred speech and a foggy brain.  This went on for over 5 minutes and I wasn't back to normal for several hours.  I'm scared that this might happen while I'm driving or while I'm teaching.  I cannot continue like this... I can't focus, I can't think, I'm loosing my mind.  Has anyone either found something has helped or a symptom that appears early so I can get somewhere safe before I collapse?

Thanks,
Melissa
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I am a 32 year old female who was daignosed with cm by a Dr. at the Cleveland Clinic when I was 12. At one point he told my family and myself that he would like to write about me in a book he was planning on writing.

I have read others comments on here and basically I have the same thing, hands & legs go weak, can't speak, can't understand people I don't know, blurred speach, blurred vision, BUT and I was wondering if this is the case with anyone else, mine last a WEEK. I am basically bedridden for a week.

Basicaly it goes like this

First day - 3rd day
  cant walk , talk , see , use hands (allthough and this is weird to me)
after I sleep for a while I wake up and there is like a 3-5 min window where I AM able to walk but after that I go back to Not being able to walk again. Not able to chew or swallow

4th day - 5th day
  walking is better am able to get around but, not exactly like normal, now able to eat, blurred speach, but like the walking - there are short periods  3-5 min where I wake up and  my speech is normal but then i go back to not being able to speak.

6th day
Walking like normal , speech is still slightly off, vision is still blurred

7th day

everything is pretty much normal but have slight dizzyness.


I just had one last week and It started out I fell down in the bathroom and was unable to move at all for 2 hours , was then able to scoot on my butt not walk, into the bedroom.

I have these about 2-4 times a year and I am just so frustrated and TIRED of having them. Everytime I have one I am off work for a week.

thanks for taking the time to read this

   Lisa
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I am searching this board to find information for my boyfriend. He had been told he had optical migraines, but he has started to get the paralysis on the left side of his face and his eye cross and he cant see. The paralysis and blurred speech lasted about 5 minutes. The cross eyed thing has happened twice in the last year and that may last maybe an hour. He is 51 by the way. He was afraid it was a stroke but I found info while researching the optical migraine that points to what some of you have said. He just went to the doctor and again was told it was probably an optical migraine, but he is also going to the neurologist for tests. thank you all for posting your experiences.
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OMG!  Thank goodness there are others out there like me! I am a 32 year old mother of two and I have suffered with migraines since jr high.  I started experiencing so many of these wierd symptoms since after the birth of my first daughter 6 years ago.  Loss of feeling would start in my hands and work its way up to my elbows.  Then it would start in my lips and work around one half of my face.  After a trip to the ER because I thought I was having stroke, my family physician told me they were a type of migraine and prescribed Maxalt.  That worked and the numbness and tingling  would stop, but I would always feel "hungover" afterwards.  I had two attacks this past year that scared me so bad bc I couldn't control my speach or thoughts.  One happened while driving home and I had to pull over and wait for my husband to get a ride and drive 30 miles to pick me up.  The other one happened when I was at home by myself with my two girl's and one of their little friends.  I had to call my husband to come home which he did imeddiately bc I wasn't making any sense.  I happened to mention this to my ENT doc who was removing my tonsils and he scared me into going to a nuerologist bc he thought my symptoms sounded like MS!  Yikes!  So after my initial nuerolgist appt and an mri, they have diagnosed me as having hemoplegic complicated migraines.  She put me on the siezure medicine Keppra which is used as a preventative migraine med as well and I haven't had a "Wierd" migraine since I began taking Keppra over 6 months ago.  Huge milestone bc I was having 2-6 a month and taking Maxalt, a tryptan to stop them.  If you have been diagnosed with this kind of migraine, DO NOT take any kind of Tryptan.  My doc told me today that if I am ever given a tryptan it could cause me to have a stroke.  If you have this type of migraine ask your doctor about Keppra bc it truly has been a lifesaver.
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It is refreshing to know there are others out there with similar symptoms as me.  I am a 28 yo female.  Relatively healthy with high cholesterol...which runs in my family.  However, I am still hoping to find some definitive answers...if my neurologist's answers don't give me a sense of ease...who should I go to next?  I saw some posts talking about a headache specialist, is that a possibility for me?  

First episode occurred in Oct 2007, starting with extreme blurred vision, confusion, then tingling and numbness in my right arm.  Was on birth control and smoking at that time, stopped both immediately.  Results from CT, MRI, and MRA were inconclusive.  All came back normal.  Neurologist did put me on a daily aspirin regimen, with a new prescription for migraines.  (Previously treated for migraines since high school as well).  

Second episode occurred this past Thursday.  Started with blurred vision for 20 minutes, and numbness, tingling in my left arm, followed by tingling in my mouth?  (no one mentioned that before).  My bp was elevated to 160/90.  Slight confusion occurred...couldn't remember my boyfriend's phone number...also said that I was having a hard time finding info in my cell phone.  Of course the headache came after all that.  Went to ER...they did a CT and blood work, which came back normal.  I did notice a slight elevation in the amount of oxygen in my blood...don't know if that is related, dr. said nothing about it.  (Also note that 3 weeks ago I started birth control again)

My gp said I need to be seen by a cardiologist to rule out PFO.  Which was the wrong thing to tell me because all weekend I have been worried about it...imagining things with my heart that probably aren't really there.  Why do drs do that?  

Also just recalled an instance prob 5 years ago that I originally didn't relate to these current instances.  Was diagnosed with an optical migraine.  Seeing wavy lines (blurred vision)...and then a headache.  


Were these instances a TIA, complex migraine, or related to PFO?  

Thanks for listening,
Michelle
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1217680 tn?1266558131
I am a pretty healthy 27 year old that just experienced my first complicated migraine. I suffer from endometriosis and completed a three months series of the Lupron shot back in December 2009. What taking the Lupron, I went on Pristiq due to the severity of the hot flashes and a feel of being down due to the Lupron suppressing hormone production. After stoping the Lupron 10 weeks ago, I have been carefully weaning off Prisitq for the past three weeks. A few days ago,I notice while trimming hedges in my yard that I had severe weakness and loss of grip strength in my left hand. I had been exhausted all day and thought that I had just over done it. My left hand shook with a noticeable tremor for about two hours. After going to bed that night I woke up at 1am with severe sweating, nausea, and confusion. I drank a glass of cold water are went back to bed. I had a similar episode around 6am getting ready for work. It started with sweating that drenched my shirt, confusion, and a severe headache. I suffer from migraines that seem to correspond with my periods but this headache felt different. I had a stabbing pain behind my eyes with pressure. I felt like I was faint and going to pass out. I decided to check my blood pressure on a whim and it was 160/100-extremely high for me. I went ahead and went to work even though my vision started getting somewhat blurry. I felt sure I was having a migraine so I took a Relpax and tried to tough it out. By the afternoon, I was so hot and flush with sweating I started getting concerned and went to the doctor. My bloodpressure was now 171/131 and I normally run 120/72 or so. My doctor thought it may be due to weaning off the Pristiq to he prescribed Prozac instead and told me to quit the Pristiq all together. On my way home from the doctor, I started having severe weakness in my left hand with numbness and loss of muscle use in the left side of my face. My husband rushed me to the ER and they diagnosed me with TIA. After the MRI, CAT scan, EEG, and blood work there was no evidence of stoke or damage. Even in the ER, it felt like I was trying to function after taking two tylenol PM. I was confused and had trouble speaking. My speech was slurred and I kept repeating myself. After two days in the hospital, the neurologist diagnosed it as a complicated migraine. She said that if the migraine could be stopped then the weakness in my hand and face should go away as well.
I've been a migraine sufferer since I was 13 and I am now 27. I had one confusional migraine at 17  and 19 and regressed mentally to about the age of 8 and had complete amnesia from the entire event. I am new to the complicated migraine that mimicked the same symptoms of a stroke. I had unusually high blood pressure with a heart rate in the 120's. I am pretty healthy overall with no abnormal blood work-normal cholesterol etc. My white blood cells were slightly elevated but nothing else out of the ordinary. I had severe headaches a week before this event but just took Advil/Motrin and thought it was related to my TMJ. While in the hospital I was given an anti-inflammatory in my IV as well as Benadryl. They have me Lortab 10 for the headache which seemed to help. My strength is now returning in my left hand and my face is back to feeling normal. I was a strange and scary incident which I hope does not repeat itself. Does anyone have any suggestions on the best way to follow up and what questions to ask my doctor? I am going to see a neurologist in addition to my primary doctor. I would like to know what type of migraine she thinks it is and what is the best way to prevent this. How do you tell the difference between TIA/stroke/and the complicated migraine? Many blessings to all who have posted on this site. We are not in this alone!
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I'm a 34 year old mother of 2 who has been suffering from complicated migraines all of my adult life.  I got my first headache migraine at age 8 and have dealing with it ever since.  
Mine mimic MS and Stroke - I will have slurred speech, confusion, dizziness, ringing in the ears, right eye spasm (usually in the upper eyelid but sometimes in the actual eyeball), left eye phantom lights (they go up and down out of the corner of the eye), loss of balance - this is my aura.  This aura may last for 1-72 hours leading up to the end result, a headache migraine.  During the headache attack my eyes are sensitive to light and can't stand noise of any kind.  The pain of the headache fills the back of my head and wraps around my forehead and sometimes moves into my shoulders and mid-back, and always settles behind my right eye.  
I'm told now these are most likely Basilar Type Migraines - as close as we can diagnose my type anyway.  I have never met anyone who has migraines like mine.  
I appear drunk early in my attacks and don't even realize myself it's happening until I see the lights.

In the past I only experienced these once every 3 months or so and did not take any medication to prevent them - I would watch my diet and other habits as to not irritate the condition.  Two years ago I had a little accident in which I hurt my back just a little.  The back pain was enough of a nuisance to start taking Ibuprofen daily.  I didn't know it at the time but I was setting myself up for the worst year of my life.  I know now that Ibuprofen taken more than 3 times a week is a no no for a migraine sufferer.  I sent myself into a migraine spiral...  The aura came daily followed by headache every other day and other symptoms developed along with it like phantom pain and weakness in my arms and legs.  I thought there was no way this was just migraines, it had to be something more serious.  My team of doctors have tested me for everything under the sun and ruled it all out.  I have been poked, squeezed, and scanned - we did find back injuries but nothing major and I do therapy for that instead of drugs or surgery.  The daily dose of Ibuprofen had over sensitized nerve receptors and my brain was misfiring signals all over the place.  
All of my doctors have been wonderful through the past year.  Having a doctor who listens to you fully and is willing to work with you is extremely important.  

I am now on a seizure medication that's also used for treating migraines daily.  It helps with all of my symptoms and I am only having migraines 2-3 times a month now, versus the 18-20 I was experiencing.  The meds make me a little dopey so we're working with my levels now to find the proper balance.  

I wish all of you who are just now being diagnosed with this condition the best of luck finding the best doctors in your area who will listen to you and set up the proper treatment for you.  
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I have had 2 attacks so far. I am 38 years old, female. The first one was happened on 24th of February. I was at work, had my lunch. Everything was ok till 1 pm. Very severe headache started and in 1-2 minutes I was collapsed in my cubicle. I had not known what was stroke, TIA till that time. I thought my blood pressure was dropped. My friends called the ambulance. Paramedics came in and started asking questions. Right side of my face, right arm, and right leg completely had been gone. It seemed to me that the right side of my body belonged to a death body, not to me. I could not walk, squeeze paramedic’s finger and smile. They took me to the Hospital. They did MRI, CT scan, Chest X-Ray, blood, urine test. They could not find anything. I have epilepsy but I am seizure free, using medications. The doctor said that it was not a seizure, probably complicated migraine. I did not have migraine history at all. My face and leg came back after 10 hours. But it took almost 4-5 days to get my right arm back. I made an appointment with my neurologist, he was on vacation. Last Friday, this was happened again. But this time only my face and right arm have been affected not my right leg. My husband took me to the hospital, they run the same tests. They couldn’t find any reason at all. It might be a complicated migraine or seizure, but nobody is sure as usual. Today is Wednesday; 6 days passed still my right arm is so weak. I feel terrible, so scared, don’t know what to do. I am totally hopeless. How can I live like this without knowing whether I will have a stroke, TIA in next minute? I have 3 years old daughter; what happens if I got attack while I drive my car when my daughter in it. I have been feeling so guilty, depressed. Just thinking of not being able to take care of my daughter myself makes me so upset. I am tired of pretending that I am good, positive, strong, which I am not… I want to cry non-stop that’s all I want to do. How did you get over this down side? How can I start thinking positive? I have been trying to accept it as it is. However I could not stop asking WHY.
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I have been dealing with this for nearly 9 months. I am a 36 year old female.  My right eyebrow droops most of the time, but I have episodes 12-15 times each day where the actual eyebrow nearly covers my whole eye.  I have tingling and numbness in my face, lips, and at times feel like half of my esophagus or throat are paralyzed. My tongue feels thick and my speech is slurred at times.  What has become particularly troublesome for me is that at times my breathing is affected.  I feel heaviness in my chest and it feels like I am breathing in cold air. I have had 4-6 epsiodes in the last 6 weeks where I feel like my head is pulling toward my shoulder and like my neck isn't strong enough to support my head.  During these episodes my eyes just want to close and I feel detached, as if I am watching what is going on around me.  These episodes last about 5 minutes and when they are over with I just want to sleep.

The thing that sets me aside from the others in this thread is that I don't have a headache with this.  I have a history of moderate migraines however they are better in the last few months.  I used Topamax for the first few months and the migraines were much better but the brow drooping never went away.  I kept uping the Topamax but the foggy brain got too bad so I told my Neurologist to try something else.  We backed down to 100mg of Topamax and added Atenolol.  This didn;t help at all.  My symptoms worsened so quickly over a 5 day period that despite my stand previously against the Topamax, I went straight up to 200mg.  I thought this was helping but I realized that it was more coincidence.  My truly bad times are usually followed by several days of felling better.  So I stayed off the Topamax, couldn't tell any difference.  No better but no worse and I didn't have the constant foggy brain feeling.  

I had a single fiber EMG to rule out Myasthenia Gravis because I previously had a thymoma which was removed 2 years ago by cracking my chest.  That was normal.  Today I had an EEG to check given the seizure like episodes I described above.  I am fatigued, at times to the point where I will sleep for 3-4 hours.  I have some weakness in my arms and legs but it is not related to a headache.

FYI- I have a history of thyroid cancer which has recurred twice and restless leg symdrome.

I am concerned about the CM diagnosis missing something else.  Any thoughts would be appraciated.
      

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I was just wondering if those of you who experienced symptoms and also those of you symptomatic while on birth control  have ever  had an INR   to check your blood clotting factor.  I was diagnosed with antiphospholipid disorder and put on coumadin when my blood clotting factor tested off the charts high with a pro tine test.  I had most of the symptoms you've described for years before a doctor also found a PFO (hole in the heart) and a fib.   I was put on a beta blocker for the a fib which completely resolved the problem.  I still wanted to mention the antiphospholipid disorder here because it usually isn't something doctors think to test for and can cause  dangerous strokes especially while on birth control.  This may be something else to look into.
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That is interesting because iI have had elevagted CRP levels which is also an indicator for stroke, heart attack risk.  My mother has been seen a lot in the laswt 2 mths because she had stroke -like symptoms and it turned out she has a sever B-12 and Vit D Definiciency which is known to mimick MS! We are thankful it was something so treatable but she has felt terrible.  
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I meant to say antiphospholipid "syndrome" so if you google it you might find more information that way.  MGC413 have you been seen by a cardiologist?   It may be something worth looking into considering all of your symptoms.  I'm glad to hear your mother found an answer I hope things get better for you soon.   Fayg I was where you are now about 8 years ago, I know how scary it is.  I was diagnosed as having a hole in my heart, atrial fibrillation,and antiphospholipid syndrome  any one of those could cause these symptoms so it took a little time before finding the right medication.  In my case I was put on coumadin for the AS but still continued having the tias.  It wasn't until my cardiologist put me on a simple beta blocker that the symptoms completely resolved.   This might not be what your experiencing but it may give you another direction to go in.  I wish you all the best.
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So glad to find this forum and other folks kind enough to share their experiences.

I just got home from a 3-day stay at the local hospital.

female, 42, 5'2'', 146#, neversmoked, never drank, never took recreational drugs, no kids, no pregnancies, severe ulcers & over sensitive tummy since 1989, taking BCPs for past 4-5 years for a chocolate ovary (endometriomas), borderline diabetic (115-116 in hosp), so tired ALL the time for several years, increasing all the time, high stress life (stressed, not depressed),

NEVER get headaches (unless I am hungry, when I eat, they go away) ... thought this was normal as my mother was the same way back in the 70's & 80's, my limbs, partial limbs, digits are constanly going partially numb when I sleep at night and it wakes me up, sitting cross legged makes my toes or feet "go to sleep" ~ doc just dis-smisses me on this. I tell hime I'm tired and he say keep up the good work (I soley take care of my elderly & both diabled parents). I am sure I have arthritis of some sort, but I have not been tested (what's the point, all meds are nsaids and my tummy won't tolerate it).

===

I am always over sensitive to light and loud sound; persistant loud sound changed my sweet demeanor to psycho girl (luckily that's only happened once, so I went to a gun store and bought ear gear / ear muffs as a preventative. Comes in handy when you have obnoxious neighbors.

So, Sunday, late morning, my heel gets a numb spot (never happened before), especially since I was up moving around. I just could not shake this off. It lasted all day. I made a nice Sunday dinner for the folks and decided to take a shower afterwards.

Got in the shower and the water made my entire self hot and tingly (in a bad way), got out asap, put the jammies on and went to find a cool spot in the house (thermo set at 73 cool), still hot, like I'm boiling from the inside out. Sat in front of a gigantic powerful fan, not helping.

I went to tell my folks I didn't feel right and that they need not worry if I have to call 911. I then started to feel a sensation like a low dose of novacane coming from my heel up my leg, into my arm, and then my face. I thougt for sure this was not right, so I sat down and I was nausiated and dizzy and trying very hard to stay coherient. as it got worse for me (certainly not as bad as the other experiences I have read here). As it got a little more uncomfortable, I called 911 and went to the porch to wait for them, taking deep breaths and exhaling slowly to try to calm myself down.

Because I did not have the facial droop, they suggested I drive myself. I insisted not. Then the one ambulance guys said it's probably an anxiety attack. Never had one of those.

10 hours on a hard guerney(sp?) in a loud ER, with lousy & loud music; that gave me a headache. The boiling was gone by the time I got to the hospital. The half body numbness took several hours to go away. In the meantime, head CT, heart x-ray (when still), bloodwork. Got admitted, got an MRI w/ contrast, more bloodwork and an ultrsound of the neck arteries (they look like brand new by the way). While I was getting the neck test done, my arm ket going partially numb (more so than usual when in a relaxed state); he suggessted accupuncture.

The entire time I was in the hospital I'd just get random spots of slight numbness, mostly on one particular side. At one point, both my legs from the knees down were annoying me so badly, I kept moving them for about 45 minutes constantly, it was just driving me crazy. Of course, I was in a restful state the entire time.

I saw the hospitallist and right about checkout, I saw the in-house neuologist. He asked me what brought me here, but really didn't want to know about my previous issues w/ numbness or what has been happening since I got there. Did a few quick tests and passed w/ flying colors. No stroke, no TIA. Wooo-Hooo! I've had a complicated migraine. I told him I don't even get headaches unless I'm hungry, when I eat they go away ... he said that's part of the migraine family.

After thought ... are all headaches migraines????????

He said I have nothing to worry about - go home.

Came home and googled it because I felt like I really had not been informed. Lots of good info out there and here as well! This could lead to more serious issues like experiences most others have had, this could also lead to a real stroke or TIA.

So this morning, after my first night back in my own bed, I get up and 5 minutes later, the goes numb again. My entire one side became slightly numb again and I was so "run-down" feeling all day, even after the 4 hour numbess passed. So, I made an appointmeat to see a non affiliated neurologist ~ we'll see how it goes.
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btw, never had a headache during the episodes. Sorry I forgot to mention that earlier.
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I will be 70 9/10.  I was just diagnosed with CM.  I have had visual "distubances" for several years but never told anyone because I was afraid of what they may be.  Well I was at work and couldn't see the computer screen, then an awful headache which by the way I still have 2 weeks later.  Then I tried to explain to my boss what was happening and I couldn't make the words come out right.  I was almost in tears with frustration.  My son came and got me and took me to the ER where they admitted me overnight.  My blood pressure was 267/206.  By the time I reached the hospital the vision had cleared but still had somewhat of a headache.  Got all the tests.  Saw a neuroligist and he told me he was pretty sure it was CM.  Saw him at an appt later and he confirmed it and said if I ever went to the ER again to tell them I belonged to him.  He put me on low dose of Zoloft because I am axienty-ridden most of my life.  I have a stiffen left side of my heart from years of high blood pressure.  I too also have GERD, gastritis, Barretts esophogus and hiatal hernia.  I am pretty frightened by all the things I have read that you have posted.  I wonder if I will get continually worse.  My 4 adult children are scared too.  Is it true that this can lead to stroke?  I was told that although CM is painful it is not harmful.  How can that be?  God bless all of you.  There'll be a special place in heaven for you for what you have to endure here.  Love ya.
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I'm so sorry to hear everything you're been through.  I just wanted to say high blood pressure in itself  leaves you at a high risk for stroke not to mention the problem with your heart.  These both can be controlled with medication is there a chance something affected your meds or the conditions to make them worse?  I hope your cardiologist is in on this discussion with you and your neurologist. (your nero sounds like a sweetheart) I hope your feeling better soon.
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I was recently diagnosed withed chronic daily headaches and complicted migraines after having a headache for over 2 months.  This started with a severe headache and droopiness in the face, the original diagnosis was Bells Palsey.  The next day ,,April of 2010,I ended up in the ER, had an MRI  and a bookful of blood work done.  By this time I had a headache , dizziness, numbness, tingling, nausea,and slurred speech.Everything came back normal.  I missed a month of work, had 4 weeks of physical therapy and 2 1/2 weeks of occupational therapy to gain strength back as the migraine effected me as if I had had a stroke.  It took me 2 months to get into a nuerologist that specializes in headaches, but my family doctor has put me on propranolol and topamax, which the nuero says is the right combination. It takes 4-6 weeks to strart to take take affect.  I just need a higher dose. Just as with any drug there are possible side effects.  I was beginning to think I was going crazy. I hope everyone out there has a more understanding employer than I do.
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1491945 tn?1289624482
Boy, do I understand the employer thing.  My 15 year old daughter was just diagnosed with complex migraine, which I am told is the same as complicated, this past Thursday.  She has not had her period yet, she is not on any medication normally and has always been healthy.  CT, MRI and bloodwork were normal.  We were in the ER this past Sunday and Wednesday for her...stroke-like symptoms, left side.  Also, she has started repeating herself, even when not in horrible pain.  They put her on Reglan and gave us a referral to a neurologist.  The side effects of the meds can be bad enough, I've been warned.  Tomorrow will be two weeks since she started having problems and she has been headache-free for just yesterday and today.  I was sick with bronchial problems for a month before she got ill and I'm being written up at work on Monday.  Any advice would be appreciated, she is only 15.  Are we going to have to deal with this for the rest of her life??
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Hi, I'm 32, and was just diagnosed with Complicated Migraines, as well as partial complex seizures, and traumatic brain injury.  I was just going to say that auras and other seizure symptoms surface in the definition of complicated migraine, so maybe it could be epilepsy?  Grand mals aren't the only kind of seizure.  Anyway, just thought I'd put that out there for you.  I actually most probably have epilepsy, with associated complicated migraines...blurred boundaries between.  :)
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Well, it is nice to know that the dr did not just invent a name for my symptoms, but from reading all of the posts I don't feel encouraged.  I am 43, and I have always had problems with headaches.  For the past month I have had 3 episodes at work where my head hurts so bad they send me home, but I don't even remember driving home or why I am here (it's 16 miles to my house).  I am losing minutes and sometimes hours of my day.  Last Tuesday I was getting ready for work and the next thing I knew I was laying in my living room floor, completely dressed.  I went to the er and after waiting 8 hours to be seen they admitted me with a nonhemoragic stroke.  After 2 MRI's, 2 CT scans, and abdominal ultrasound, a carotid doppler, and a cardiac ultrasound, the only thing which was found was a "focal point" on my liver which needs to be checked every 3 months.  The right side of my head towards the back and top feel like my scalp is having muscle spasms and water is running down my scalp, the left side of my face is numb, my left arm, hand, and leg are numb, and I can feel the blood rushing in my left ear.
I was discharged from the hospital 6 days later with an added request to take 81mg of aspirin every day and see a neurologist on June 30th.  I still have weakness in my left arm, the outside half of my left foot is almost completely numb, and if I sit up for more than 2 or 3 hours my headache gets so bad I can't stand it and have to get back in bed.  When this happens the numbness comes back.  When I woke up this morning my face was numb again and my vision was blurry in the left eye.
I don't know how I am supossed to work like this, but what will the disability people have to say if I say I can't work because of a "headache"?  This is becoming very frustrating and depressing, and I'm already on antidepressants, so what am I to do?????
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Hello All,

I am a 39 year old female and on Sunday I began to get light headed almost as if I were a little drunk without actually having had anything to drink. My right side became numb and was getting progressively worse. By the time I got to the ER my whole right side went off into the twighlight zone, it felt as if the flesh on my face was heavy and sliding off and when I tried to smile only the right side of my face would move.

Catscan, MRI ect.. were all fine there was no evidence of a stroke. There was mention of TIA but there was no evidence of that either. I am still having trouble with my right side and with my speech when I get upset. It's not nearly as bad as it was before but I KNOW there is something wrong.

I've been told I have complicated migraines. (HA! Complicated doesn't even begin to describe this). My treatment in the ER was deplorable, I was pretty much treated like a lunatic when they saw the catscan was fine and it wasn't until I was transferred to the stroke center did people take me seriously.

The neurologist who saw me today said she didn't know why I would still be having trouble. But I swear to god I am not insane and that these things are happening.

It is worse if I am active. The world gets fuzzy and I kind of feel like I am outside myself looking in and I get a pronounced limp in my right leg. The longer I walk it seems as if I have to actually concentrate on what to do "Right, left, right, left" and as I mentioned when I get upset or frustrated my words go to hell. I am thinking clearly but no matter how hard I try, what I am thinking doesn't seem to want to go from my brain to my mouth and then I get mad and it gets worse.

I am just home from the hospital this evening and trying to figure out what this is, how to treat it and I just want to thank all of you so very much for sharing your stories. I will have to be honest when I say I was starting to actually doubt my sanity tonight.

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I tried to add comment but computer kicked me out while signing up. Don't know if it went through so will try again.
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Just discovered this blog and read several posts. I'll share my experience and what has helped me. Hopefully, it may help someone else.

It is long but bottom line is I’m 61, have complicated migraines, had a hole in my heart that I had closed which dramatically improved things and found a neurologist who ordered a medication that is usually for high blood pressure that has been a “life-saver” for me. The drug is an old one, probably not in favor in most doctor circles because it is inexpensive and not one of the pharmaceuticals current “hot drugs”. It is called Verapamil and it relaxes blood vessels that helps prevent blood vessel spasms. The following is my story.

I may have had migraines in my teens but I didn't realize I was having them until I was in Nursing School in my early 20s. I had auras--usually an awareness of a missing part of my field of vision, then dancing zigzags that start out as a pinpoint and gradually spread out until after about 45 minutes they go out of my vision. Then I get a headache. But, I don't get really bad headaches--instead I feel dull, my scalp is sore and I feel hung over. I've had all kinds of weird neurological symptoms. At age of 24--6 wks after birth of first child--I had a pupil dilate and fix (which means it would not react to light and that usually means something very bad is happening). I did this while at work as a nurse in a medical center and the neurologist examined me at length and found all neurological signs normal except for dilated pupil (I didn't have a headache). They decided it was migraine related that paralyzed my optic nerve. Lasted 24hrs and went away. With my second pregnancy, I had episode where I knew what I wanted to say but the words that came out were jumbled and made no sense. In my mid 40s I developed what is called Amarus (may be spelled wrong) fugaz which is a TIA symptom. What happens is without warning a "curtain" would come over one eye which resulted in loss of vision of about 3/4 of eye. This usually only lasted about 1 minute. Again--no headache. Those were the biggies. In addition, I had numerous episodes of not feeling right, of tingling, feeling of dread, feeling "dull" from early 20s on. But the temporary blindness thing sent me to a neurologist for the first time (nurses make bad pts. I knew I was having migraines so I had never been to a neurologist). He did complete work-up--CAT scan, MRI, echocardiogram, carotid Doppler’s (looking for blockage in neck circulation to brain.). All were normal. His diagnosis was migraines. My 40s were the worse--I was pre-menopausal and my hormones see-sawed. By then I developed migraines without auras as well as the ones with auras. The ones without auras were the most painful (still are). At 45, I developed panic attacks. The psychiatrist I saw was convinced that I had a physical, medical undiagnosed condition that had triggered my panic attacks because they were not "typical"--always started with some sort of neurological symptom. He said that my body had learned the "fight and flight" reaction that shoots the adrenaline into your body, so I was truly having panic attacks but he felt that it was a body learned panic attack disorder in reaction to a physical condition. As I turned 50, my body really fell apart--developed irritable bowel, Gastric Reflux, Fibromyalgia, and the weird migraine neurological symptoms became more pronounced. My energy level was terrible and by 11am every day, I had a terrible headache. I had always pushed through all of the migraine and even the panic disorder symptoms. I worked in a very busy ICU for years then was a manager in nursing positions for years. But by early 50s, my concentration ability and memory was getting really bad, Yet I was working as much as 10 to 12 hrs a day--sometimes 7 days a week (I was on salary so I wasn't working for extra money. I was in the middle of developing a new complex program in my department). Finally my primary care doctor and rheumatologist told me that I had to quit work or my body would collapse. Finally at age 52, I took a disability retirement. Was very devastating to me. I loved being a nurse and was a workaholic. Throughout all this time, I saw the same neurologist who had me come every 6 months for follow-up but basically just said, "Oh, well. You have migraines". But at age 53, he decided to put me on Imitrex and ordered a cardiac work-up as a matter of routine before he started the medication.  That turned out to be the beginning of what would dramatically improve my life. The echo showed a dilated aortic root and I was referred to a cardiologist. I had some aortic regurg (leakage) but not enough to be problematic so they saw me once a year to do echo to monitor for change. When I was 57, the cardiologist ordered a Bubble Echo (special kind of echo that is used to diagnose PFOs (hole in heart--located between the 2 upper heart chambers. It is normal before baby is born but should close after birth. In some people it does not). If you have a large PFO, part of the blood returning from the body without oxygen goes through the hole into the left upper chamber where it is pumped back into the body without any oxygen because it bypassed the lungs. Therefore, part of the blood that is supposed to be taking oxygen to the body doesn't have any oxygen in it. The other big risk is stroke. If a tiny "clot" of some sort that the lungs would filter without causing any problems, bypasses the lung and goes through the hole into the left side of the heart, it is pumped into the body where if it goes into the small blood vessels in the head, it could cause TIAs or in some case, strokes. My bubble echo was positive for a large PFO. Luckily I was a medical center that was participating in a national trial that was investigating the connection of PFOs and Migraines. The cardiologist doing the study had become a leading expert of PFOs because he'd discovered PFOs in so many older adults like me who'd had problems all their lives that were blamed on "just migraines" and harmless. He told me that I'd been having TIAs since my early 20s. There is a fairly simple cardiac catherization procedure where a device is inserted into the heart that closes the hole. I had the hole closed and my energy level, color, all my symptoms improved dramatically. My headaches improved by about 80% but did not go away. (Please understand that not everyone who has all of these symptoms have PFOs--but if you do have these kind of symptoms and have not been screened for a PFO (through a bubble echo or a TEE--a regular echo will not show it) then I urge you to ask your doctor to order a bubble echo. Very short and benign procedure.

    My quality of life improved dramatically after the PFO closure--it seemed that the psychiatrist was more right about medical condition than the medical doctors were. BUT, one year after the PFO closure, out of the blue, I had the worst TIA I'd ever had. Couldn't remember my children's phone #s, numbness on lt side of face, felt weird and hard time thinking. Went to ER of hospital that my neurologist did not go to. So got a different neurologist and HE WAS HEAVEN SENT!. For the first time, at age of 58, I was diagnosed with complicated migraines.

I’ve reached the end of my character limit so will put rest of my post on another post after this one.
MiMiFlo
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Continuation of above post from MiMiFlo

This neurologist explained that with complicated migraines, I would always have migraines so treatment goal was to control them. He explained that with migraines, the vascular system goes into spasm which sets the whole process into action. But that with complicated migraines, the patient's vascular system is even more sensitive and very prone to spasm to a variety of seeming harmless things that ended up being triggers and that sometimes for no reason at all. BTW in addition to all the other things I've mentioned, I have severe Raynaulds syndrome (poor circulation in feet, hands, distal parts of body in reaction to minor cold exposure--that is also a vascular spasm problem). And I also have a diagnosis of neurocardiogenic syncope syndrome which means that my sympathetic and parasympathic nervous system do not function properly and triggers such as heat and cold, GI symptoms--even BMs--dehydration, standing on my feet too long, etc. etc. causes my BP to drop and for me to feel like I'm going to faint. This too is related to extra
sensitive blood vessel spasms. Anyway, this neurologist told me he had the most success with an old not often used drug. It is really a high blood pressure drug but that it relaxes the blood vessels and thus helps keep blood vessel spasms under control. But, since I had low BP, they were worried that it would drop my BP too much. But, they decided to keep me in the hospital, give me the drug and monitor my BP for a couple of days. The drug is Verapamil and I take 120mg which is the lowest dose usually given. Not only did I tolerate it, my BP actually stabilized around 115 to 120/70--80. AND it has DRAMATICALLY improved my migraines and weird neurological symptoms. The drug is inexpensive. This neurologist told me that other doctors would try to take me off of it, but not to let them because he'd discovered that if the patient's could tolerate verapamil (and it has very few side effects--primary one is ankle swelling and constipation--which was a plus for me since I had diarrhea from irritable bowel) that it was by far the most effective drug for complicated migraines. Did I mention this neurologist is "an old time doctor" who is very, very brilliant but believes that the newest drug is not necessarily the best thing in many cases. Verapamil has not only helped my migraines but it has helped many of the other disorders that I have (that were evidently related to my blood vessel spasms). I am now 61 and for the first time (well since I was 57 and 58), I feel as though I'm finally properly diagnosed and treated.

It is very frustrating to know that not only your doctors but even friends and family think that "you are just over-reacting" or somehow bringing it upon yourself. But the moral of my story is keep persisting and keep on until you find a doctor that will properly diagnose you and treat you.

Good luck to all of you.

Flo
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I'm 16 and started having "complicated migraines" almost three years ago. I was at school and I began getting auras, not like tunnel vision.. Just blurry and spotted. I thought I was tired and went on with my day, hovere, it all got worse from there. I couldn't write, I couldn't talk and I couldn't move my right side; it was numb. My face and tongue were numb. I was also slurring my speech and I was awfully confused. I couldn't say ANYTHING I wanted to. I recall trying to tell me teacher I needed to go to the office, I think he let me go because I freaked him out by my lack of enunciation... and lack of any kind of audible word. I began crying when I got to the office, because I couldn't explain just how I was feeling and what was going on. I remember it being very frustrating.

They called 911 and had me taken to the ER straight fomr school because they thought that I was having a stroke. By the time I got to the ER, everything had calmed down; the only noticeable effect I still had was that I was getting words mixed up even though I knew what I wanted to say.

When they told my I had complicated migraines, I was even more frustrating. My head DIDN'T hurt. I was mad I spent a whole day in the ER getting tested and prodded and all they could tell me was I had a complicated migraine -____- I haven't had any other "attacks" since then... and hard;y any other headaches and definitely NO migraines. However, I STILL confuse my words and I often find myself confused or distracted in mid-sentence. It's very frustrating and I wish I knew what could help that.

If you have any suggestions or possible answers, please let me know. Thanks :)
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This is MiMiFlo and my long comments are just above. I'm assuming you read them. If you are still confusing words and having symptoms then you need a complete work-up. Did they do a MRI of your head and did they check you for a PFO? I'm not a doctor but based upon my personal experience you need a complete neurological and cardiac workup. If you are going to doctors who tell you that they can't find anything, then keep getting opinons until someone finds out what is going on. I don't know where you live or what kind of medical specialists are close to where you live or what kind of insurance you have. But, you may have to go to a big medical center if no one is giving you answers. But I do know that it is not normal for a 16 year to continue to have the kind of problems you are describing. Good luck. Keep us updated. If you have a specific question, ask and I'll check back in on a regular basis to see if you have posted a comment. I'll try to help in the limited way I can.

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1708490 tn?1307975720
Okay, I am actually relieved to read all these posts. I am 42 years old, healthy, have no history of high BP, everything is almost textbook perfects in regards to my health. Dont smoke, drink or take drugs. I had an episode in late February that the left side of my body was numb, my heartbeat was irregular, speech slurred, couldn;t stand up or walk, or even pick up a pen to write my name. I had a headache a few days before, but not then. My husband made me go to the doctor, who immediately called an ambulance. BP was 220/130. They thought I was having a heart attack. The ER at the local hospital, ruled out a heart attack. That doctor sent me home with a prescription of pain meds. In the following week, my symptoms got worse, especially my speech and thought process. Exactly one week from the ER visit, my husband took me to a larger hospital, where I was admitted for a stroke. I spent 5 days in the Stroke ICU unit. While there, I had multiple MRI's, CT scans and who knows how many tests. The neurologist said that because of the time frame (Being there a week after symptom onset), the MRI and CT scan may not show anything if it was a small stroke. Two doctors told my husband and I that they believed it to be a stroke. One doctor said he could not determine if it was a stroke or a complicated migrane. All the other specialists (occupational therapist, speech therapist, physical therapist) said that all symptoms were indicitive of a stroke.  What the doctor who discharged me from the hospital wrote on my discharge papers was complicanted migrane. However, the medicines they sent me home with, are stroke medicines, (Plavix and a few others). I have spent 4 months and am still recuperating. My speech is still off, my balance is off and sometimes, I have to walk with a cane. The left side of my body has diminished feeling and numbness (also confirmed at the hospital), And my head hurts constantly now. (Also indicative of a stroke patient) How can this be classified as a complicated migrane, with symptoms as severe as what some have posted here? Or is complicated migrane the new *Mini Stoke* diagnosis to avoid panic in patients?
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I got all the usual tests when all of that happened, however, I haven't had any tests since then. I also went to a neurologist who said that there wasn't anything wrong with my brain. As a preventative I take topamax; I still have the speech problems though. My primary care doctor doesn't seem to think anything is wrong with me though and doesn't want me to take any unecessary tests. If I find out anything else, I will let you guys know :)  
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On Thursday I was arriving to work and my right side of my neck down through my arm started hurting really bad, I looked in the mirror and the right side of my mouth was drooping.  I could still communicate so I called my cardiologist.  They sent me to the E.R..  Within 30 minutes I could not move my right side, speak, move my head to the right, or my eyes to the right.  I was 30 minutes from getting the blood thinner Stroke patients get and then my head started throbbing.  My arm started moving.  Over the next few hours I could slowly move my arm, and leg.  My face slowly came back to normal.  I am in day 2 and I have not regained my speech.  I have been diagnosed with a complicated Migraine.  I have also had a suspected TIA previously.  I some tests on Friday and during recovery  I could speak briefly after being sedated, but I don't remember anything.  Can anyone help me understand what is going on with my body. Why I can speak when I am sedated?  I am really frightened.  I am only 39 and feel like my body is giving out.  My mind knows what I want to say but my mouth won't form the words.  
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1748351 tn?1311691426
I too am an RN, this has been going on for me for 4-5 yrs now. At first they thought it was a seirzure. That was ruled out with 2 eeg's and many other lab work. I was put on topamax for migraines. Told that this would help, it did take the edge off, by decreasing the frequency of the episodes. However the intensity of the episodes are much worse when they happen. I do have an aura of dizziness, sleepiness, and confusion. My right side becomes numb, I can not move it, and it is spasdic. I also become aphasic ( can not speak), I now the words I want to say, but can not get them out. Eventually I will be able to start to speak, usually 30min. At that time, everything that comes out is backwards and very slow. It takes 3-4 hours to get normal speach back, but still is slow. Still my right side is numb, but I can move it, it is still extremely weak. Like everyone, I feel hungover for days. This last episode I was treated as having a stroke, blood clot in my head, and was in the ICU. They tell me that this is going to happen again and a bigger stroke could happen!! Guys, this is real!And its SCARY!!! I am now increasing my Topamax and on Aspirin daily, waiting...... I have a 6yr old that I need to see grow up. I have zero rislk factors. I am healthy and active, do not smoke, no BC, and cholesterol is normal. Dont do drugs, drink socially.  I am only 40.
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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
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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?  
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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)
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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.

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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.
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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.
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Last year I suffered from Dengue fever, my first sign was waking up numbness and tingling on the entire left side of my body, which did not go away. A rush to the ER didn't do much, since they said it wasn't a stroke and I'd have to wait. When I finally was seen by the doctor, he dismissed the possibility of a TIA or stroke. I had a clear CT and all other tests were clear. Finally another doctor suggested dengue after worsening symptoms appeared. Within a month, I recovered on paracetamol, but the pain was still there on the left side. Four months later, the pain lessed and I was able to work for 4-6 hours before I felt extreme fatigue and pain setting in. Feb. of this year, I had a stressed 2 week course I was pursuing (graduate student), the next thing I know, I had numb patches on my left leg and arm, the left side of my throat was completely numb as well as my tongue and I was blurring in my right eye, accompanied with a dull headache. I later found out I had a UTI, apparently on the left side due to the left-sided spasms I was having. I was placed on cipro, adverse side effects, back to the ER, severe side effects still persists. The issue now, is that I was going completely numb on the left side of my body while on the cipro and after using it. Now I deal with a constant pain on the left half of my body, including my head. The neuro diagnosed me with complicated migraines. I was intially on topamax, which worked for several months, but moving back to the caribbean, the heat was unbearable with the meds. I was then placed on sibelium, which I'm currently on, but while it helped initially, the side effects were unbearable, I was then told to use half the dose, which helped somewhat, but now I have the persistent left-sided pain. I don't know what to do anymore. I wish my neuro was more understanding, that I was sensitive to fluoride.

Anne.
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I want to thank you for taking the time to write what you have. I am going to be short and to the point. All the same things happening to me 44 years of age started at 34. Think I had a TMI this past week. Went and they are doing all of the things your wonderful Neurologist has done for your family.

I now understand why these tests were ordered. What they may find.. and I am guessing they will... and I wont be as shocked.

I have also been placed on Verapimil and aspirin. I feel  better about this now.

Thank you for what you have written here.
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I also have experience many symptoms like all of yours. I am 18 and first started having migraines two years ago. The first time I was at school and had been having a head ache for a day or two on the right side of my head, it progressively got worse and at its peak my left finger tips started going numb. The numbness got worse and traveled up my hand to through my left arm and my mouth and tongue became numb. I also suffered loss of vision and comprehension. My mother came and picked me up from school and I laid down flat not moving and slept for many hours and that seemed to help it go away. At first we thought it was just dehydration because it was the heat of the summer and I was playing tennis everyday but it occurred again a few months later, and again, so we went to the doctor. They at first believed I had MS and gave me multiple MRI's and CT scans. My GP noticed a small spot on my right frontal lobe and I got an appointment at UCLA medical center and the neurologist diagnosed it as complex migraines saying the spot was too some to be a tumor. I later found out he was a migraine specialist and I dont fully believe his diagnoses. Since then I have still had many episodes mirroring stroke systems, also with the numbness travelling up and loss of vision, once I was trying to read and couldnt understand the simplest word and began panicing because I know that I should have been able, the same also occurred with speech. With family drama and going to college distracting me I havent sought out more info, but they seem to get worse and worse and the last few days I have been experience horrible headaches on my right side again prompting me to come and read all of your posts.

In particular MiMiflos have interested me the most. I never considered the fact that it could be caused by my heart and had never heard of a PFO. I remember my mom telling me that I had a heart murmur when I was born, and I am not sure if that could tie into this, but I also experience light headedness, weakness, and a tremor in my hands quite frequently (mostly in my left hand) I thought it was maybe due to low blood pressure or that I had bad circulation but maybe it all is together.. I appreciate everything you guys have written, and if anyone else has input or similar weakness id like to hear from you...
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I am 21 years old please Froglaz... let me help you before you have what happen to you what happened to me. Not to scare you or anything. That is exactly how it started with me!! It is going to start going up the arm gradually.   this is what happened to me after what happened to you.  Not saying this will happen to you but its worth checking !! I have some advice!!!!
i have basilar migraines... i go blind cant see then i have this 10 mins later...  My left thumb went completely numb along my with my entire arm. Then the next time my left face. Then my left arm thumb face tongue then my left tumb arm face tongue and I couldnt speak and I lost my balance and I was completely confused.
Then the headache awful of course throwing up all that... the next day i was fine other then freaking out of course. so i went the hospital found out ..i had a stroke but it was not from that specific time. it was a silent stroke. i must have been sleeping. but i have no risk factor other then i have migraines!! so i had the tee ekg all those tests. had a large pfo.. had that closed.  get that closed if you have one!  people have different opinions on that... but mine is to close it.
i have tried over 150 medications nothing has worked for me so far. i have tried nerve blockers they don't work. does any one have any other suggestion? i know about the pace maker with the electrodes but they are not allowed in my state yet and i do not want to be on the trial and maybe get on the "real" side. migraines are serious as everyone here knows :(
love to hear back on here or ***@****
mary

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sorry it blurred out my e m a  i  l  add at the end but  just i guess just reply here and let me know what you think. please.
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How big was your PFO? was the procedure and recovery of closing PFO difficult? i have a PFO (4.4cm) and experienced 2 TIA or complicated migraines. I would like to have more children but I am being told I need to have PFO closed first. I am scarred that I may have stroke during pregnancy.  
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I too suffer from complicated migraines.....I'm on a preventive and all the drs. do is to give me meds.  I've had mri's ct scans to no avail.  I lose my speech, balance, coordination and now my eyesight on some occasions.  I also answer people back in Spanish..They seemed to have increased since my kids were born and after a head injury 5 years ago.  I'm just tired of the pain meds and botox....any suggestions
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How often do you suffer the migraines?  Have the meds and Botox helped you at all?  Have you tried anything else?  Then I can fill with some possible answers.
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is it possible or likely for migraines to begin in adulthood?
I went to the ER a few days ago because I got a terrible headache, then got dizzy and tunnel vision, then my left side went numb, including my face.
I was told i was too young to have a TIA of stroke, and that it was a complicated migraine. I'm just confused, cause I've never had any history of migraines. The only headaches I've ever had is the occasional one if I get dehydrated. And since that episode, I've had lingering numbness/tingling and a constant "walking around buzzed" feeling...but no headaches to accompany these lingering symptoms. ????
I'm a 26 year old female. No significant medical history. very limited alcohol consumption (only on holidays/special occasions). don't smoke. don't take birth control. low blood pressure. eat healthy (organic, all-natural, mostly vegetarian and vegan meals). rarely ever even take so much as a tylenol.
What in the world is going on?
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Hope you saw my other answer to you that you are definately not too young to have a stroke at your age as you were told with my recommendations.

But yes, you can begin to have migraines at any age.

But I would definately get it checked out by a scan.

Sara
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Having just read all the posts, even those dating back to 2008, it is incredibly sad and yet somehow reassuring, to find so many people afflicted with Migraines. I have suffered with migraines since the age of 9 following a terrible cycle accident, and I am now almost 35. I have never had a scan, though I am hopeful that my referral to another neurologist will lead to such an investigation.  
I have actually just this moment experienced an episode, where I lost all feeling in my left hand, as well as experiencing the gradual worsening level of confusion.Usually all my migraines are preceeded by an aura attack, which acts as a warning to signal the onslaught of accompanying symptoms (such as numbness to one side, loss of speech and being able to form 'coherent' thought processes and loss of memory) before then moving on to the terrible headache, usually located to one side.
I would like it to be noted here that since discovering the over-the-counter medication Migraleve, my migraines are easily controlled.As soon as the aura/numbness/loss of speech symptoms etc hit, I take two pink Migraleve. Within 30 mins all symptoms have gone and I never have the follow-up headache. Only on rare occasions do I experience the full symptoms and headache.
Despite this, recently my attacks have been happening much more frequently, including one episode where I was rendered completely blind in my right eye! This was scary, for with no accompanying symptoms, I was recommended to go to the eye hospital to rule out a detached retina. Having no problems with my eyes I am now due to see a neurologist in October, and it may mean that my migraines have become two types: Migraines with aura and Occular/Optical Migraines. This is becoming increasingly scary, for when you go online, there are so many reasons that could be the cause, you simply cannot know where to start, and obviously most specialists hide underneath the huge umbrella that is 'Complicated Migraines'. In other words, migraines can be so sporadic and varied in nature, there can never be one definitive answer to their puzzle. The best we can all hope for is the continued feedback on forums such as this, advising of new medications tried and tested by those experiencing these debilitating symptoms....Us. I therefore thank you all for your posts.
If you are able to try Migraleve (unsure how worldwide this is) I would definitely recommend giving it a go, for I have tried all meds (preventatives included) and nothing has worked so well. Let it be noted that they are designed for those suffering from the symptoms experienced before the headache.
Please take care everyone and may you all find an effective solution to at least make your lives more manageable and less controlled by migraine.

Clara  


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Hi everyone.  I was diagnosed with complicated migraines in 09 while suffering what I thought was a heart attack at the age of 44. I have been a migraine sufferer since I was 14 and in 89 suffered an anurysm that started with a migraine and ended with blindness.  Was able to get all but 1/3 vision back in right eye and was told I had thrown an embolism and there was no cure.  MRIs every six months showed no change until MRI in 94 showed it was gone. Since then I have had all the symptoms listed above, starting with numbness and tingling in hands and feet after birth of third child in 04 to disconnected feeling, forgettfulness, weakness, headaches, vertigo, passing out, running into walls and not being able to piece together sentences.  In 09, when the chest pains started, was rushed to hospital, CATs, MRIs and numerous other test showed heart of 12 yr old, but complicated migraines with possible stroke.  Was told to take excedrin for migraine and find a neurologist if it got worse.  Over past two years I have had seizures, vision changes, migraines almost daily and constant pain in hands and feet.  Migraine specialist wants to rule out epilepsy so went to epileptic neurologist yesterday and will undergo sleep deprived test at end of month and then 2-4 day testing next month.  Was told it is to rule out epilepsy but will be given topamax regardless.  Had asked about the anurysm but did not get an answer and was blown away to see that others here have had that too and found PFO.  Will ask about testing for that as I feel certain there has got to be a connection.  Thanks for all info and it is good to find a supportive community although I hate that it's because we all have and are suffering.  My prayers are with each and every one.
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