Complicated migraines

[Traciedar]

My neuroligist has diagnosed me with complicated migraines and I have been hospitilized several times and had many test.  I take Topomax (topamax) to help prevent them, but it doesn't seem to help.  I don't trust my doctor's,and my attacks are getting worse.  If anyone else know about them, they are hemiplegic migraines, causing one side of your body to go numb, and now, I am having several a day and they are slowing down my breathing and I am unconscious for up to five minutes afterwards.  My neurologist does nothing but increase my Topomax (topamax) after every episode.  Does anyone else have these type of migraines and what does your doctor do for you?

[CCF-Neuro-M.D.-JT]

Not sure if you are using the right terms as hemiplegic means WEAKNESS not numbness on one side of the body. At any rate, your symptoms sound a bit concerning, especially if you are truly losing consciousness and everything is happening more frequently. It would be extremely important to make sure these are not seizures or TIA's with EEG (need to capture one of these episodes) and MRI/MRA. If they are indeed just complicated migraines, then Topomax (topamax) certainly does not sound like it's cutting it for you. You may need to have abortive treatment (again assuming this is truly complicated migraine) with an IV medication such as magnesium, depakote, or steroids.  Prophylactic therapy with calcium channel blockers rather than topomax (topamax) may be more helpful. If you don't trust your doctors, then get a second opinion. If you are becoming unconscious several times a day, then consider going to the ER for a more urgent evaluation. As for now, until this is taken care of, you should not be driving or operating heavy machinery for your own safety and that of others. Good luck.

[Cgalgirl]

I have had only several episodes of the same thing: dizzziness, left side numbness/paralysis, lasting for up to 2 days and got the same dx.  I have had problems breathing too, and strange palpitations, strange squiggles in front of my eyes, but no headaches.  Was very confused especially when no headaches why it was called migraines, but have discovered a new term - Transient Migrainous Accompaniment. Nothing showed on MRI, MRA, CT, blood tests etc).  The episodes went away on their own for me, but were brought on by stress and having 2 babies.  I also have MVP Syndrome, which exacerbates all this (my nervous system is very sensitive to stressors of any kind).  I am sorry that you are having so many attacks - my Dr put me on Inderal (40 mg a day) and baby aspirin, because of strokelike presentation of symptoms.  I couldn't stand the inderal (made me too tired).  Have you tried any of the Beta Blockers they are good for preventing this type of stuff.  You have to stay away from the traditional migraine medics because of the stroke like symptoms - apparently they constrict your blood vessels and that with the complicated migraines could cause a stroke.  Sorry I haven't been much help - consider a second opinion.  I have to say I had a very good workup, but as soon as they realized it wasn't a stroke, the Drs at our center were not very interested in my case.   Good luck and let me know how you get on.

[Tamsha]

I have suffered from migraines since I was 14.  I am now 38 (female) and was diagnosed with complicated migraines last year.  My migraine pattern changed when I was about 34 or so.  I was getting all the symptoms of a migraine (aura, etc.) but no headache.  They gradually became worse where I would go for 2 or 3 days with transient numbness, stroke-like symptoms, feet that felt like cement, couldn't talk properly, etc.  I went to emergency numerous times where they always diagnosed migraine.  I finally saw a neurologist who ran every test under the sun at my insistance because I was scared s--tless.  All came back normal.  I finally then believed the complicated migraine diagnosis.  I am not on any medication ie. Inderol at the moment - if my symptoms returned in an extremen way he then said he would.  He did prescribe high daily doses of magnesium and B6 (riboflaven).  So far it is working well but I still have the occasional odd symptom (nothing unmanagable).  I would ask your doctor about going on these vitamins to see if it works.  Good luck!

[Tamsha]

Sorry, also forgot to mention that as like Ccalgirl, I am also taking a baby aspirin a day.  She is also correct - neuro told me too that if symptoms become worse, he would put me on a beta blocker NOT Inderol or anything similar due to the nature of these attacks. If I was you, I would look for another doctor.

[Cgalgirl]

Thanks for the advice re: Inderal.  I stopped taking it. Do you know why its not good for Complicated Migraine?

[Tamsha]

I'm not really sure.  I didn't ask.  My neuro, who is very good, just said that my best bet would be the magnesium and B6. If that didn't help, he would put me on a beta blocker.  I'm thinking it has something to do with the type of migraine.

[Pat123]

My migraines started at around 12 or 13 years of age (I'm now 48).  I pretty much tried to deal with them on my own even though they kept getting worse, until about 7 years ago when I started having dizzy spells and passing out.  My MRI was slightly abnormal, but the neurologist didn't think that that had anything to do with my problem.  It was my EEG that helped him with designing my treatment more than anything else (my regular EEG was inconclusive--it was the 24-hour EEG that was the most telling).
Talk to your neurologist about changing your preventative medication.  Topomax (topamax) doesn't seem to be doing anything for you.  However, although I've been on Depakote for several years now, it did take a long time adjusting the dosages until we got to an effective level, and even then it took a long time for me to notice that my migraines were less severe.  I stopped passing out reasonably soon after the Depakote dosage got right, and the dizziness disappeared about a year and a half later.  Although milder, my headaches can still last a week or more.  I don't know how conscientious you are about taking your medications on time, but I definitely noticed that I needed to take mine at the same time every day to keep my blood levels even.  Don't miss a dose.
You didn't mention any abortive treatments.  Most of them only worked for a month or two at most.  I went through the gamut and still haven't found anything that works totally and reliably, but Maxalt seems to be the most effective of the triptans for me (not everyone reacts the same to every medication).  
In addition to increasing your magnesium, try adding Vitamins B-2 and B-12.  Strangely enough, I also found that although everyone tells you to get off of caffine (and if you haven't, you should--it does make a difference), I found that one of two things would frequently help: either a large amount (1/2 gal.) of orange juice or a 2-ltr bottle of cola (I always drink diet, I don't know if this makes a difference).  I don't know why, but if one doesn't help the other frequently does.  I usually start with the oj, because it's the healther of the two.  The cola does make sense, though, because caffine somehow speeds up the absorption rate of certain medications (ergo the otc migraine relief medications).  The baby aspirin (or Feverfew if you can't take aspirin) probably isn't a bad idea, but do make sure you avoid ginko.  You might also want to try yoga exercises to get your circulation moving and elongate your spine (don't try to push yourself to do anything that's uncomfortable--and don't do anything that makes the blood rush to your head).  And last, but not least, if you suspect that your headaches might be related to a hormonal imbalance (you didn't mention your age), and if you don't have any family history of breast cancer, you can try supplementing your diet with natural estrogens (like soy).  This might take a while for you to notice any effect).
In any event, you should definitely get a second opinion.  If your unconscious episodes are anything like mine were, they are extremely dangerous (I not only had to stop driving because they would come on with very little notice, but I was afraid to go anywhere by myself--it was terrifying).  Your numbness brings this all much too close to stroke symptoms.

[t_anunson]

Hi everyone. I started having neurological problems and headaches after my daughter was born 6 1/2 mos. ago tingling, numbness, twitching, etc.. I still get it here and there. My neurologist claims he couldn`t find anything, I`m still searching though. My blood pressure also shot up to 154/100 the other night. I`m only 5`4 146pds, 22 yrs old. Could this be complicated migraines. Any other post partum women have these problems?

[drb]

How about: mid-morning @ work: sudden frontal headache (forehead, brows)followed by what seems to be a total histamine swelling of ears, sinuses, eyes, then slowed down breathing, out of breath,  frontal pressure and back of skull, confusion, dizziness only above neck. i take synthroid and minimal wellbutrin daily, but i also use CPAP nightly, had turbinectomy and septoplasty August 2002. i live in allergy heaven (hell) so no telling what it is. If I take Benadryl or ~13 mg Seroquel it all slows down but I get really dizzy then in the PM. Why just this morning thing?
Dr doesn't think any of it is neurological or cardiological. does surgery affect any of this, especially sinus area surgery?

[t_anunson]

Are you having neurological problems as well? If so, what are they like? How long have you felt bad?

[domer]

Hi you have just described the last year of my life.  It all started last Feburary at work.  I had just had a baby and had just returnded to work.  I was at my desk and started to feel dizzy and light headed.  I felt like I was going to get sick so I headed to the bathroom.  Next thing I know, paramedic are over me and I had lost conscienceness and woke up with the worst migraine headache ever (I have had migraines since I was a teen) I am 30 now.  I went to the hospital and they did blood work, ct scan, and all the possible test and everything looked fine.  My family doctor told my it was probably psychological (okay, that made me made and needless to say he is no longer my doctor).  It happened again a week later at work and my co workers called 911 again.  I was so afaid and so was my family.  These episodes then started to happen everyday, several times a day.  I was then referred to a Neurologist in town (who I love and takes me serious).  He has also named my problem complicated Migraines because of the fact that I wake from my loss of conscienceness with a terrible migraine.  I am on 400 mg of Tomamax and 240 mg of Verapamil.  I have been hospitalized a few times (once for a month over the holidays) and have been given IV's of everything that you can think of to try to stop the passing out episodes.  Depikote, benedryl, cortisone etc...  nothing has worked.  Except the topamax has brought my episodes down from 3-4 a day to only 1 a day and some times I skip a day.  I always have a terrible migraine when I wake up.  The only thing that I can do when it gets to bad that I can't stand it is take an Imitrex.  The doctors do not like to to take that very often.  They are afraid that it could bring on a stroke.  Oh yeah and my MRI show a couple of white lesions that they are not sure what they are.  They could be scars from having such bad migraines, scars from tiny strokes, tiny tumors etc.  we are doing MRI's every 6 mos. and they are not changing so far (good news).  I wanted a second opinion so my doctor sent me to a place in Michigan called the Micigan Head Pain and Neurological Institute.  My doctore their thinks that I could have Epilepsy.  She sent my to Indiana University to have an internal EEG done (not fun they stick probe up your nose into your brain to see if they can diagnose epilepsy deep in your brain).  I have had about 30 regular and 2 48 hour EEG's that have all been negative.  Anyway, last week my mom takes my to Indy to have this done, it is supposed to be a 3 day process, and when I get there the doctor does a regular EEG and tells me that my problem is psycological and that I should go off all my meds and start driving again!!!!!!!  Has this man lost his mind.  He did not do the test that my doctor had ordered, nor did he even look at me, he looked at my mom the whole time we were there.  I felt crazy by the time I left.  That is why when I read everyones postings here I feel much better.  I am having the exact same problems as everyone here and luckily my Neurologist believes me.  What the next step is, I don't know.

[CCURN]

Hang in there friend!!  It has been my experience that when the Drs don't know what is wrong, they pull out the psychological card.  I have been having a list of health problems for the past year and a half and have been dealt that card to.  Be persistant.  You know your body better than they do.  You know what is normal and not.  Don't give up looking for answers.  I don't have complicated migraines, but was recently told I have stress migraines.  I was in the hospital with horrible dizziness for 3 weeks in Jan and I am still going to PT learning how to walk again.  Since all my tests are coming back "normal" they think it is stress related and want me to see a psych.  Well I just don't agree.  But that's another story!!  Good luck to your!!

[american_woman]

I was diagnosed with complicated migraines in 95.  Since my first episode I have had continued numbness or a diminished loss of feeling on my entire left side from top of head to toe straight down the middle. At times it isn't as noticeable but with each episode it gets worse.  I also was taken off of all migraine meds due to higher chance of stroke.  I moved to a new area and have a new dr. now.  Topomax (topamax) was terrible for me.  It caused great pain such as pins and needles throughout my body.  I am now on depakote and I am doing better.  As others have mentioned why do Doctors treat us like we are idiots when we advise of our symptoms.  I to get the feeling that they think I'm crazy at times and that don't understand what a disabling problem this is. Not to mention being scarry.  I just turned 40 but feel as if I'm in my 80's.  Does anyone know if there is a cure for when it gets this bad.  Maybe a surgey or something.  I'd pretty much do anything to feel normal again.

[Mousa789]

Hi everyone. Last night my auntie (who is 36) woke up in the middle of the night and her left side was completely paralysed and her breathing was difficult. She has always suffered from migraines, especially after periods of stress. She was taken into A & E (thats the ER) where doctors are convinced that rather than a stroke (as on the surface it appeared to be) it is more likely to be linked with her migraines. As I could do nothing other than wait for news anyway, I decided to research these possiblities and the implications if she was to suffer from more compicated migraines, and I found this site. I know that the original subject on this post is to answer one lady's questions on the medication she is taking, but I wondered if somebody (preferably a sufferer or a someone who knows one) could tell me the details, like how to be sure, what you have to take and what it prevents you doing. The reason I am asking is because my auntie is a bit of worrier and she has two young children... im wondering whether this is going to drastically affect her future.

Any information would be appreciated. Thank u. xxx

[lmad]

I was diagnosed with complicated migraines a few months ago after being sent to a neurologist by my family doc. because I was c/o tingly, weakness, and an odd sensation in my left eye. At that time, all the symptoms were on one side. I was checked for MS, including 2 MRIs, a visual evoke test, blood tests, etc. These symptoms began about 6 months after a very complicated and traumatic pregnancy and birth; my daughter was born 12 weeks early (1 lb., 13 oz.) after I developed pre-eclampsia (I have had high blood pressure for a few years). I had a very bizarre reaction (I thought I was having a stroke) to the epidural. A few days after the baby was born, things seemed to return to normal until a few months later. I have had three episodes, each began after I took antibiotics; but my neurologist says that there is no connection. Each episode has been worse than the last, and about a week ago, it got significantly worse (serious tingling, numbness, weakness in both feet and legs). I went back to the neurologist who increased my beta blocker (Atenelol). Can't tell a difference yet. The worst symtpom is definitely the chronic fatigue because I have a 2-year-old... these symptoms are so draining and frightening.

[t_anunson]

My neurological symptoms began after my baby was born too in Aug. of `02. She was born on August 15, 02. About 2 weeks after having her, I started having tingling and numbness in the extremities. I also had a lot of twitching and vibrations througout my body. I too had a hard birth w/ her. She weighed 9 pds. 7 oz. I had her vaginally w/ an epidural, that had to be placed 3 times! I was also given Group B Strep meds through the I.V. while having her. I also lost a lot of blood after she was born. I seen a couple of neurologists after all of this, and all of my tests for MS have came back normal so far. I am now on a wait and see what happens basis. I really don`t think I have MS. And something strange about this, is that the symptoms are worse during my menstrual cycle. The symptoms have also faded w/ time, thank God. But, I still twich and still have odd sensations here and there, especially during "that time of the month". But I have met a lot of other ladies on here who have taken the epidural and Group B strep meds during delivery, and have had these same reactions as you and I. Did you take the Group B strep meds during delivery? I noticed you mentioned antibiotics.... I really think there is some kind of connection here. I don`t believe that we all have MS after having a baby..... I wonder if we may have gotten a bad batch of medicines?..... Well take care....

[Ennis]

I am a new headache sufferer.  Could any please tell me if these symptoms sound like migrane or could they also be Lupus, MS or demylenating disease?

I was headache free until 3 car accidents (all other drivers were at fault) in a 6 month period. The first accident was 4 years ago.

Since then, headaches have been severe at times. Sharp stabbing through eye and ears to just dull aching in temples and across the forehead. Sometimes my head feels like it wants to explode. Symptoms that come on about 30 minutes before the headache almost always begin with lots of tears coming from eyes, This is followed by cold shivers down one arm and in a thigh and include numb feeling in lips, tightness and tingling, numb feeling in arms and legs, then a loss of energy and fatigue (need to sleep). Headaches are sometimes felt after this process, but at other times none are felt.

A MRI of the brain also revealed small white leisons not typical of MS. MRI of spinal cord showed no signs of MS or demyliation.  I have neurologists suggest MS, Lupus and demylinating disease as possibilities

A neurologist yesterday suggested these were symptoms of a silent migrane. A migrane that with these type of symptoms but  at times, gives very little pain.

Has anyone else had similar symptoms or heard about this kind of migrane?

[lmad]

My neurologist told me that complicated migraines sometimes happen to people after a head injury. Maybe it is related to the car wrecks.
I don't know whether or not I got group B strep meds. in epidural. Hadn't occured to me until I read this. I will have to ask my OB/GYN. I do know that they gave me more than one thing to try to bring my blood pressure down... The c-section I spoke of was awful. They told me that they would inject the meds. into the epidural slowly because of how it might affect my bp. Once this happened, the room began to spin, and I heard a loud roaring like a tornado or an airplane engine. I really thought I was having a stroke. All of this happened before my husband was brought in... I was terrified. I finally went to sleep - don't know if this was intentional or not. The anesthesiologist kept saying that I shouldn't be experiencing any of this, and he made a couple of comments to me later in my room that indicated to me that he thought I was hysterical. As I said, this occured 12 weeks before my due date because my pre-eclampsia was getting worse. I had been in the hospital several days by then.

[lmad]

Can I ask about your delivery? You described it as difficult.

[capergirl]

I have been a migrane suffer since I was 12. I will be 30 in December. I have been suffering with episodes of dizziness, passing out, lasting up to 2 minutes,  and slight memory loss since January of this year. All the test show nothing...... I too have been dealt the psychological card but I am sticking with it. I am taking 200 mg of Topamax and 25 mg of a beta-blocker daily. Thank goodness for health benefits at work or I would be out a job. I do have good doctors though who are not giving up yet. They are right now saying I type of seizure but not sure what kind. But listening to you I would have to say it it related to the migranes.......thanks for listening and don't give up!!!

[sunjanman]

My complicated migraines came on when my daughter was 10 months old.  Have you heard anything regarding migraines and pregnancy?  I'm worried that my headaches will get worse or that I will suffer a stroke if I do get pregnant again.  Any information would be helpful.  Thank you.

[Tanya N.]

Hi all,

Read all your stories and I have been through alot of the same things, so I feel bad for everyone because I know what you've been through. I have been having strokelike attacks for almost 12 years and still undiagnosed.  I've written to the doctors on this site many times, sometimes using different names because I was to embarrassed.

I've been through hell and back with many test, wrong diagnoses, and the panic disorder card!  They had me thinking I was losing my mind so I went for counseling and was on xanax.  I finally went to a cardio who put me on beta blocker and I have not had the strokelike episodes for 6 months, but I'm left with weakness in my arms and leg and still the exstreme fatiague, head fulness,dizzy,etc.  I was DX with hemip migraines, but I know it's not that. I think I have a mitochondia disorder which alot of the adults on a web site I'm on have many of these same symptoms.  It's hard to tell migraines or something else.

[stata]

Hi wow I can relate to all of you I'm 37years old and have been suffering complicated migraines since I was 15years old. Numbness,aura,vomiting then after 30 minutes of the process than I get the migraine. I recently had a baby 3 months ago and I had the baby at 35wks due to a really bad migraine I had 3 episodes in one day so my OB decided that I have the baby C-section (I had my first child C-section). Well I haven't been better since that day. I haven't had a really bad headache,but what is bothering me is that I get thy symtoms and no migraine like blurry vision I can't focus or cloudy I call it. I've been to my neurologist and we did an MRI came back normal and I recently did an EEG I'm waiting for those results. I had a positive ANA test (which is a test for Lupus), but all other labs came back normal so the rheumatologist says to retest on a yearly basis. Alot of help that does I am soo worried. I have burning pain in my legs and chest sometimes. All I want to feel is normal again my neurologist put me on Inderal LA 60 mgs I took it for 2wks and it made me feel worse. I want something that will make me feel NORMAL......

[stata]

Hi wow I can relate to all of you I'm 37years old and have been suffering complicated migraines since I was 15years old. Numbness,aura,vomiting then after 30 minutes of the process than I get the migraine. I recently had a baby 3 months ago and I had the baby at 35wks due to a really bad migraine I had 3 episodes in one day so my OB decided that I have the baby C-section (I had my first child C-section). Well I haven't been better since that day. I haven't had a really bad headache,but what is bothering me is that I get thy symtoms and no migraine like blurry vision I can't focus or cloudy I call it. I've been to my neurologist and we did an MRI came back normal and I recently did an EEG I'm waiting for those results. I had a positive ANA test (which is a test for Lupus), but all other labs came back normal so the rheumatologist says to retest on a yearly basis. Alot of help that does I am soo worried. I have burning pain in my legs and chest sometimes. All I want to feel is normal again my neurologist put me on Inderal LA 60 mgs I took it for 2wks and it made me feel worse. I want something that will make me feel NORMAL......