Monday, May 28, 2012
Tuesday, October 14, 2008 AlishaDiane asks

Q: Complex Migraine Syndrome? PLEASE HELP!

(33yr) FrownHello. I hope someone can help shed a little light on my situation. I was just released from the hospital after being diagnosed with complex migraine syndrome. I had never heard of it before now. I have had really bad occular migraines in my right eye for 14 years. Two weeks ago while I was watching a movie I starting feeling weak and short of breath... sort of like my sugar was dropping, (I'm hypoglycemic & Hypothyroid, average shape, walk 3 miles - 6 days a week) I became dizzy, and then my right hand started tingling and became numb, the numb-tingling feeling traveled up my arm and into the right side of my face. I became incoherent and passed out (This lasted ca.10-12 min) When I reached the hospital my right arm was completely numb, and I could only mumble. (After 2 1/2 all feeling was back in the right side of my body) I was given a CAT scan and an EEG, but both came back fine. I don't understand what is wrong with me and I am very scared. Can someone please help. I was prescribed Topamax 25mg twice a day, it seems to make me not be able to think straight or somrthing else is wrong....

Answer This
Answers (10)
Teri Robert, Health Guide
10/14/08 2:10pm

Alisha,

 

The "gold standard" for Migraine and headache diagnoses is the International Headache Society's Internation Classification of Headache Disorders, 2nd Edition (ICHD-II). One of the problms when doctors don't follow that, as yours have not, is that it's difficult to know what kind of Migraine someone is talking about. Under ICHD-II, the diagnoses Complex Migraine Syndrome and ocular Migraine do not exist.

 

Topamax is frequently prescribed for Migraine prevention. According to the prescribing information, the beginning dose is 25 mg once a day. You can read more about Topamax dosing in Dosage and Tapering of Topamax for Migraine Prevention.

 

Migraine is a genetic neurological disease. A Migraine attack can have up to four phases and many differing symptoms. I think you'd find it helpful to read Anatomy of a Migraine. Also, given your previous diagnosis of ocular Migraine, I also suggest taking a look at Ocular, Optical, and Opthalmic Migraine.

 

Given the severity and frightening nature of your symptoms, a Migraine specialist may well be in order. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

 

I know you're going through a rough time. If you'd like some additional support, come join our discussion forum. You'll need to register again once there because it's a separate membership database, but you can use the same member name, email address, and password that you used here. You can find our forum at http://forums.healthcentral.com/discussion/migraine/forums.

 

Good luck,

Teri

Reply
3/30/10 2:55am

Teri,

I have had migrains everyday of my life since I was in middle school and I am now 25.  My doctors said I just needed to find the right meds to fix the migrains so eventually last year I ended up on Topamax.  I have been doing great and I am down to about 4 migrains a week now which is a godsend and that sucks.  Since January this year I started with these same attacks that my doctors are also calling complex migrains.  However that doesn't really mean anything at all.  I have a typical seizures and I have never had them in my life and last Tuesday my 7 year old was home from school sick and saw me have my first grand mal seizure.  My EEG's are showing abnormal brain waves on the left side of the brain, however they are non epileptic and every other test is perfect.  My magnesium is high, but the doctor said that is nothing to worry about.  I don't know what is going on with me.  Everything that Alisha describes sounds like the "mini" strokes I am also having as part of the "complex migrains", but for me, it doesn't make any sense and it's not going away.  I don't know what to do?

Reply
5/ 3/11 9:44am

That sounds more like the Status Migraines I've been having.  They tend to mimic mini-strokes, last for 72 hours or more with only up to a 4 hour break at times. These are serious and may require hospitalization.  When you have these, or basilar migraines, or other unusual migraines you are at a higher risk for a real stroke. Funny, or not so funny, thing about a Status Migraine, is they can be caused by over use of the pain medications most of us use for Complex Migraines and other types.  Right now I'm trying to figure out how I'm supposed to know the difference at on-set so that I don't take too many medications and cause the Status Migraine, when I'm trying to get rid of the Complex one.  More to come on that issue...  Just look up Basilar, Hemiplegic (can mimic strokes too), Complex, and Status Migraines for more info. Unfortunately, I've had all of these.

Reply
12/28/08 12:53am

Hi Alisha

  I got out of the Hosp a couple of weeks ago diagnosed with the same thing.   I live in the Atlanta Area.  I have had migranes since 20yrs old and Im 36yrs now.  I had a really bad headache, not like a regular migrane, my left side got weak, shortness of breath occurred and I had trouble responding to people.  It was like my whole body slowed down and weight was on it.  My left side eventually went numb and my speech became very slow.  I stayed in the Hosp 5 days, I had a ct scan and mri and they found no evidence of a stroke.  The drs came up with complex migrane syndrome.  I think they really dont no what happened, but I decided to do some lifestyle changes.  I watch what I eat, Ive totally eliminated caffine out of my diet.  Ive been finding out what are some triggers for the migraines (for myself).  Ive decided not to get stressed out because for me it does trigger the headache to start.  'The drs released me with napryson and another medication for nausea so that lets me no that they really don't no the cause of this 

Reply
1/24/09 10:26am

I am a 39 yo female experiencing same issues. However, I was also found to have a heart condition, patent foramen ovale (PFO) with TIAs. I had this corrected in surgery with a closure device. Eighteen months later I have been diagnosed with complex migraine syndrome after fainting and remaining unconscious for over 30 minutes. The prescribed treatment for the migraines is Topamax, which aids in prevention, and Midrin (at onset) for the pain. Vicodin was originally prescribed for pain, but tended to exaserbate the symptoms.

 

Perhaps your medication is the same, if not ask your neurologist about this combo.

Reply
4/12/09 9:03pm

I have complex migraines. They are very rare. My migraines started all at once with the occular and then I go into non-verbal communication then I go into paralysis if I do not get help at the hospital.

I just went to John Hopkins in Baltimore, MD for a review.

I take a combination of meds.

I would tell your doctor that the meds don't work and you want to try something else.

I have been changing meds for a year til I got the right mix.

Hope this helpS!Cool

Reply
Teri Robert, Health Guide
4/12/09 11:05pm

Deb,

 

One of the most important things is to get an accurate diagnosis. To simplify matters and make it easier for people to get information and treatment, doctors usually go by the gold standard for diagnosis, the International Headache Society's International Classification of Headache Disorders, 2nd Edition (ICHD-II). Under ICHD-II, there is no diagnosis of "complex Migraine" OR "ocular Migraines." We do see thse terms used, but doctors use them differently, so it really doesn't tell anyone what type of Migraines you actually have. You can read more about this in Ocular, Optical, and Opthalmic Migraines and The Type of Migraine Does Matter.

 

The only type of Migraine that has paralysis as a symptom is hemiplegic Migraine. You can read more about that in Hemiplegic Migraine - The Basics. We can't diagnose, but we can certainly share this information.

 

Teri

 

 

Reply
8/20/09 8:22pm

Many MVs have been defined by the International Classification of Headache Disorders (ICHD-II) 2004 classification. These include hemiplegic migraines, basilar migraine, childhood periodic syndromes, retinal migraine, complicated migraines, and ophthalmoplegic migraine.

 

Found at the following URL:

http://emedicine.medscape.com/article/1142731-overview

 

This article was contradictory to the statement made above as far as the ICHD-II not listing complicated migranes as a diagnosis.

Reply
Teri Robert, Health Guide
8/20/09 11:11pm

Please reread it. It most certainly was not contradictory. It took some of the types of Migraine listed in ICHD-II and called them "Complicated." Descriptive heading, not diagnosis.

 

Here is listing of ALL types of Migraine as set forth in ICHD-II:

 

1.1 Migraine without aura
1.2 Migraine with aura
      1.2.1 Typical aura with migraine headache
      1.2.2 Typical aura with non-migraine headache
      1.2.3 Typical aura without headache
      1.2.4 Familial hemiplegic migraine (FHM)
      1.2.5 Sporadic hemiplegic migraine
      1.2.6 Basilar-type migraine
1.3 Childhood periodic syndromes that are commonly precursors of migraine
      1.3.1 Cyclical vomiting
      1.3.2 Abdominal migraine
1.3.3 Benign paroxysmal vertigo of childhood
1.4 Retinal migraine
1.5 Complications of migraine
1.5.1 Chronic migraine
      1.5.2 Status migrainosus
      1.5.3 Persistent aura without infarction
      1.5.4 Migrainous infarction
      1.5.5 Migraine-triggered seizure
1.6 Probable migraine
      1.6.1 Probable migraine without aura
      1.6.2 Probable migraine with aura
      1.6.5 Probable chronic migraine

 

Teri

Reply
8/25/09 11:27pm

Complex migraines ARE in that book under the listing of COMPLICATED migraines which is how most neuros diagnose it. I have had these since my 21st birthday i am now 26. I woke up and couldn't talk anymore, i couldn't stop throwing up and i went numb in odd areas of my body.. I went through months of testing and hospitalizations only to have them numb the nerves in my skull with local anesthetic.. which worked but it was like botox i had no facial expressions at all. I lost 26 pounds in a little over a week due to the vomiting and i couldn't stand up very much. there WERE no triggers. Nothing matched up any of the times i would go numb.. I had stroke symptoms but no actual stroke, and weird seizures that only affected my mental state. Complex or complicated migraines can cause permanent neurological damage and death if you black out doing something like machinery or driving. I am on steroids and Inderal. i have to say it works to a point but not always i started out on perkocet and weaned myself off these meds.. i will tell you one thing.. most doctors don't know what it is they throw it in the complex migraines catagory. My doctor himself told me they had no idea what was wrong since my numbness was never side specific it was like one toe.. the other leg.. my tongue.. roof of my mouth. ect..

My neurologist just threw it into that catagory because i do have marked speech issues now.. I studder more than i used to and i have trouble finding words sometimes.. and i was left untreated for a few years with this.. Be careful they do cause damage ..

Reply
12/ 3/09 12:48pm

I cannot believe I have found someone else that has some of the same syptoms that I have. I am 59 years young and started with this one year ago. I started with walking off balance which went to numerous other symptoms. I couldn't talk, couldn't walk and felt that i would go into a fog that I could not come out of unless I slept for several hours. They originally diagnosed me with T.I.A.'s but, the episodes continued to happen more frequently up to 2-3 times a week. Now the Neurololgist is saying I think it is complicated migranes and I am taking Plavix and Depakote which has started tremors and I am on medication for Parkinson's. I would like a second opinion but, I don't know where to go!

Reply
6/22/09 2:42pm

Hello Alishia,

     I originally had symptoms similar to yours. I am a registered Professional Nurse. I experienced a visual phenomena that I now know is called scintilla. I then experienced an episode of right sided tingling going from my little finger and progressing through each finger and the thumb and up my arm and then progressing to numbness (Hemiplegia), right sided weakness progressing the same way to paralysis (Hemiparesis), slurred speech progressing to garbled speech (Expressive Aphasia) and loss of consciousness. CT scans showed no loss of cerebral blood flow. I awoke about 1 hour later with the mother of all headaches. I was seen by a Neurological attending at the hospital where I was employed, and he diagnosed this as a Transient Ischemic Attack. I was worked up for carotid vascular disease, cerebral hemorrhage and arterial sclerotic heart disease. These were all negative. The only positive they found was a bi-cuspid Aortic valve, unrelated to the episode. Two weeks later, I experienced another attack and was seen by a resident in Neurology. She diagnosed it as Complex Migraine. I have bee treated for the last 14 years with oral Divalproex  Sodium Tablets with no further attacks. She explained that Complex Migraine is related to Epilepsy. She explained that it is primarily an electrical phenomena in the brain with attendant vasoconstriction. The vasoconstriction with the subsequent cerebral edema is the cause of the headache which follows the attack. She also said that, had I still been a smoker, the hemiplegia, hemiparesis and aphasia would have been permanent. In other words I'd have had all of the symptoms of a stroke. One of the common symptoms is an optical phenomenon called scintilla I had this for at least 20 years, and like all good nurses, never mentioned it to my doctor. My advice is that you continue to see your neurologist regularly, keep  a diary of all related incidents, take all your medications al ordered and, if your physician does not seem to be taking you serioiusly, find another Neurologist, preferably one associated with a teaching hospital or University.

Reply
Teri Robert, Health Guide
6/22/09 3:55pm

Hello and welcome, Nick!

 

Please see my reply right above yours regarding the diagnosis of "complex Migraine." The only form of Migraine that can cause hemiplegia is hemiplegic Migraine.

 

Welcome again,

Teri

Reply
6/22/09 4:27pm

Hello Teri,

     As I said, I'm a Registered Nurse, so the onset of symptoms was especially terrifying. Also-I was home alone when it started. I tried to call my wife, but she was out of the office and had turned off her cell so that no one could bother her. I got trough to her secretary who noted my slurred speech. She told me to open the inner front door, unlock the storm door (This was during the winter) and lie down in the entryway with my wallet (which has my ID and insurance cards in it) on my chest. She called 911 on another line while trying to keep me calm. Oh, by the way, yjis occurred during a major snow storm. They told me later that it took over an hour and a half to get me to the hospital whaere I worked. This is usually a 15 minute drive.

Reply
2/ 6/10 11:05pm

Interesting, my son who is now 19 had a similar attack as you, about a yr or so ago. Watching a movie, aura in right eye, then tingling in right fingers and then up arm and major headache.  I noticed he did not have slurred speech, but could not articulate the words he wanted to say. He also found out about 6 months later that he also had bicuspid aortic value. Makes you wonder if there is any connection????

                                                                

Reply
2/23/11 8:10pm

It is great to FINALLY find information online like this!

As a Registered Nurse, it was mind-boggling that a person could be treated as badly as I was, for so long--or that I put up with that! 

Bad or inappropirate treatment happens all the time, though.  

With worsening economic pictures, it may get worse before it gets better.

We have to be our own best advocates; few have any who will do that for us.

 

Have looked online for description of optical scintilla, but unable to find description. 

What is that?

Is there another name for it?

 

I had a--for want of better words--migraine stroke in 1996.

Blacked out behind the wheel. 

Had nearly unnoticable aura, in fact, thot I was having a better-than-usual-day [context: I was always having some level of migraine, for well over 15 years]. 

I tended to strive to ignore anything less than an episode that put me to bed in a dark room.

That particular episode started as I turned a corner, about 10 miles from home, on a surface street, after the light turned green.  

Vision went to bilateral tunnel vision, then narrowed entirely to black, taking maybe seconds. Lost all senses.

Only traveled a short distance, since foot came off accelerator. 

Vision returned first, with hearing a close second.

Had NO clue what anything was, just could see things like opening eyes in strange room after disorienting sleep.

Then very vague familiarity of what the car and it's parts did, so commenced driving, slowly figured how to get on freeway [still not knowing much of anything, other than a vague familiarity for where I was headed], and somehow, made it to work, another 10 miles farther down the road. 

By that time, had trouble with speech, word retrieval, thought processing, balance, grip strength, coordination, eyes ability to focus, name recollection--everything, but while I recognized far more, things were still disorienting.  

 

And I was afraid that if anyone knew what happened, I would lose everything-- 

afraid to let anyone who knew me become aware of it; so worked very hard to get back strength, coordination, verbal, etc., hiding it the whole time. 

Basics took about a week, then a couple weeks to get enough grip strength to trust holding a glass of water with one hand, be able to do a fair job of brushing teeth, etc.  I suddenly got pretty good at letting others do things I normally did, and delegating others to do things I had previously pointedly taught them to do in other ways.  No one asked any questions: they were all so under their own huge stress loads, they simply didn't notice.

 

I did try calling our provider. 

Kaiser Hosp. in Martinez refused to get me in to a neurologist for well over a month after the event--said they were full up, even though I said I was afraid I had some sort of stroke event, and had a long history of near-constant migraines. 

After 2 calls and 2 refusals, then that very delayed, very cursory neuro exam*, I opted to take care of it myself, hiding it as much as possible. 

*Neuro check = touch nose with finger while eyes are closed, walk on tip toes across room, and few other similar; the neurologist barely spoke english, didn't listen to what I was saying, or coulnd't understand what I told her. 

No other tests done. 

I wobbled on my toes, and missed the nose by a hair, but close enough she thot it was fine. I specifically asked if there should be an MRI, but she said no.

 

Nearly 15 years later now, some symptoms persist that some Docs call "normal limits" but which I feel are great deficits, and, a few things that have really made living tougher, such as s slight difficulty swallowing, and the bit with the eyes not wanting to focus, requiring prisms for reading [it took almost 4 years to find a Doc who figured that out]. 

One eye Doc had waved me off, saying my weird eyesight was because I was "getting old"--when I said "Old does NOT happen in a matter of minutes-what causes that?"He still laughed me off.

Eyes still have a hard time staying focused on anything, and tend to meander off-target when I try to look at things. It took almost 4 years to find eye-doc who figured I needed prisms to read, and needed trifocals.

 

It took over 5 years to find another neurologist who ordered an MRI [way too late!], who GUESSED I probably had something like a complex migraine, but he was not sure, and was not much other help.

 

The more tired I get, the worse the symptoms. 

Still have episodic stuttering/slurring of speech; glitches with swallowing deficit.

Still have some word and memory retrieval issues, occasional balance episodes, and some coordination glitches.  Thought-processing can be troublesome--it takes me a long time to compose anything in writing, but writing is preferered, since trying to verbalize ideas can come out wrong.

Tired and hurting most of the time. 

Never had BP issues until a few years ago, then suddenly have episodic increased BP.  

Old attempts to modify migraines using Inderal or ergot derivatives failed--only got side effects. Unwilling to go through what one sibling has gone through with pills and side effects.

 

NOTE:

Docs talk in terms of "normal limits".

BUT, if your "normal" was far above the average person's usual, you will feel deficits more acutely, as you no longer function like you are used to functioning.

These are losses.

Losses cause grief that needs processing!

 

I have basically given up on Docs, choosing instead for using herbals, nutritional, other alternative approaches. 

Have not done those as well as I should, but do see results.  

An acupuncutrist imght do well treating this, as that had helped in the past with migraine relief. 

 

TAKE-AWAYS? 

1. It is normal instinct for any animal [that's us humans, too!] to try to hide deficits and ills.  STOP hiding, and get help. If the first Docs or systems fail to respond right, keep looking for others who do it right. 

Get documentation for everything. Keep a diary or a calendar with daily comments listing symptoms, experiences--these are documentation!!!

2. There can be long term "leftovers"

of symptoms from Complex Migraine "stroke", because cutting-off nutrients and O2 from the brain, regardless of cause, does damage, no matter what they label it.

3. Keep working hard to rehab.

It can be fiddly, lonely, frustrating work, but much rehab is stuff you can do yourself to regain muscle strength, coordination, verbal and thought-processing, etc.  Even 15 years later, some things can still improve.

4. If you apply for disability,

and get told you lack proper diagnosis for SSDI, keep at them.

Use the phone, write letters, get others to write letters describing your symptoms and behaviors they have witnessed. 

Damage from migraines/complex migraines/migraine strokes, is a BRAIN INJURY.

Make sure that term is used, because that is what it is, and that term is more clearly understood.

Get letters attesting to how you functioned before the damage was done.

You need better, more thorough documentation, and probably a lawyer who can sit there in the court and give answers to the SSA rep who tries to find jobs you can still do. 

Put every symptom and diagnosis on your application that messes with your ability to work. 

Keep at it.

 

I put up with overwhelming migraines almost 24/7, for well over 15 years;

Docs and E.R.'s accused me of drug-seeking, faking it, attention-getting, etc., before I utterly caved under pressures, and figured out that I could put together application to get help.

It didn't get much medical help, but it got me respite from working, by providing a small safety net financially, and access to other services--and helped by removing some of the stresses that were feeding the Migraines. 

 

It took every bit of 2 years for me to go through the SSDI process, mostly on my own, but also with a lawyer who advocated for me when no one else would. 

Even the SSI Judge was nasty and acusatory, but grudgingly awarded the SSDI I should have had many months sooner "cannot give it to you on any single diagnosis, but because there are so many things going on, I award it".

 

SSA still sends letters asking if I have been able to work, or been attending classes, etc., or other enticements to get me to work. 

[Believe me, if I could handle working, I would have done so long ago!] 

That is one problem with SSDI that gets to me, because it comes across as more attempts to discredit what I have been living with for so long--even though I know, logically, that this is simply a poorly designed System operating as it does. 

It still forces me to go beg another Doc to please write a letter of substantiation- --which costs me money I don't have, and takes up the Doc's time for something that should not need to be continually re-answered.

 

EVENTUALLY, maybe the SSDI system will get a clue, that some things simply do not disappear--quadriplegics tend to stay that way, and migraineurs tend to stay that way.  Brain damage is brain damage, and tends to stay that way.

SSA needs to get a clue: save everyone some extraneous paperwork and people-hours!

 

It is a relief that there is so much more information online now. 

Hopefully, this will help prevent other people from going through what I went through.   Best yet, more is being learned in even the last year about migraines of all kinds, than has ever been posted.

 

THANK YOU! 

This can really help those struggling with it.

 

Migraines are ALWAYS caused by multiple things--hormones, heredity, malformations of nerves/blood vessels, mis-firing chemistry, exposures to chemicals, stresses, illnesses, injuries, etc.    All these need sorted out.   People need to be assessed as whole-person-pictures, not just one illness.

 

Chi

 

Moderator's Note: For your security and privacy, please do not post personal informaton such as email addresses and phone numbers.

Reply
8/13/11 10:41am

My 19 yo daughter has suffered from migraines since birth. As a small child she suffered abdominal migraines with cyclic vomiting. Ar 5 the migraines became almost daily . The pain so severe she pulled her hair out. Constant screaming due to pain. Doctors treated her with almost all known migraine rx, even though they were for people over 18. They did surgery, nothing even slowed them down. She caught a break, when they changed to 2 weeks with migraines and 2 without. She finally got alittle peace. That didn't last long when they return to 30 days a month. She was bed ridden, constant pain and the screaming.That continues for years, but she got a day or to where they stopped inbetween. At 9 I didn't think she's make it, weight down to about 38 pounds, the vomiting, pain and screaming. Unfortunately she has not improved much over the years, bedridden, pain and vomiting. Trying for SSA disability and not going well. rX DOESN'T WORK ON HER MIGRAINES. Doctors blow her off. Help

Reply
9/23/09 7:27am

Hello.  Like you I had a very active life prior to getting hemiplegic migraine initially, and then began also suffering from occational basilar artery migraine.  I was an EMT as a profession which I am now on medical leave from totally unable to do my job which is devistating after fourteen years of service.  I am 37 years old.  I had normal migraines growing up, and started getting complicated migraines with numbness in the left arm and face in my second pregnancy.  They ended up taking my baby a month early because they were afraid I was going to have a stroke.  I started having black outs four years ago when my husband came home from work to find me unresponsive on the floor, and they believe I had been that way for approximately 3 hours before anyone found me.  They transported me to a bigger facility and they ran tests, and found that I have a PFO in my heart, which is a congenital defect that is a hole in the heart.  I also like you have hypothyroid.  I recently developed orthostatic hypotention which is very low blood pressure so I have to be very careful about getting up quickly, and I run arrythythmias in my heart which they have me on medications to control.  I take zonigran which is also a seizure med. to try and control my complex migraine syndrome. 

One year ago while at my mom's house I had a bad trauma where I passed out on an open staircase and fell out over them sideways appx. 6-10 feet they had to help me breath and airlifted me from the scene to a level one trauma center.  I now have a neck injury which aggrivates the complex migraine syndrome.  So, I know what you are going through and it's not fun.  It's is a very dibilitating disease.  I tried to keep up my job as long as I could but the field I was in it caught up with me very quickly.  I have been hospitilizied many times.  I have been dealing with this four 13 years and really don't have any answers yet other than find a great neurologist that you like.  Best of luck to you and my prayers are with you I know what you are going through.  The only other thing that my doctors have made my family do as a chronic pain patient is seek counseling.  I haven't gotten any closer to an answer yet, but I'm still praying for one.  You may want to be checked for the PFO, because they say most complex migraine suffers have that condition.  I don't know if that will be any help to you.  My EEG's aren't normal they come back with right side brain slowing.  Good luck to you, and know that you are not alone in this.

 

 

Reply
8/27/10 5:40pm

You'll get used to them. I'm on the down swing... it got worse before it got better. I tried all types of medication but none seemed to help more then the trouble they caused. I'd sleep regular, eat right, avoid more than a little caffine or chocolate. When ever I can I don't let the lack of mobility stop me from doing anything, and that actualy has helped me have less trouble. Yeah sometimes I end up falling on my face in public and have to explain to people that I am not having a stroke ... but I'm not hiding in the dark for half of my life.Have never been able to pin point any other trigers than sunlight and A/C. Once you get over the fear because you can't control your body part... it's morbidly entertaining.

Reply
11/12/10 2:57pm

AlishaDiane,

 

Hello,

I'm a mother of a 16 year old boy.  He is a good student and a incredible athlete.  One year ago he was rushed to the hospital with incredible head pain.  After about 20 minuites the pain was gone,but he had parallyes over his entire body including his speech.  He had all the tests and everything came back normal.  Because there was no family history nothing more was done. 

Six moths later it happened again.  This time he was in CSU for 3 days.  The discharge was to see a neorologist.  There only recommendation was to put him on Topamax.  After going home and reading about topamax my husband and I were scared to try it.  I called a friend who practices homiopathic treatments and asked her to give me a suggestion.  Her family had been going to a Chiropractor for years.  We started taking our son.  He had 3 crainial nerves that were painful to the touch and his neck was not in allignment.  We started going 2 times a week for 2 months.  He is now only going 1 time every 2 weeks. Only 1 nerve is sore and his neck is doing much better.  I don't know if this helps,and I am still nervous, but our son is still participating in sports and continues to be a good student.  If we had put him on Topamax I'm not sure where he would be.  I am open minded and if this happens again i'm not sure that medicine would not be the answer.  I hope you get the answers you need. Take care  

Reply
2/18/11 4:41pm

I also have "complex migraine syndrome."  I was diagnosed with "Migraine Syndrome" when I was 25, although I had been having migraines since I was 5 or 6. I am 56 now and I still have between 5-7 starts a week.  Each one starts with an aura and is right sided occular as well. My arm and leg turn purple-ish and I have numbness and sometimes weakness. I usually have to go to Urgent Care 2-3 times a month. I wish I clould tell you that they will go away, but at this point, with the length of time you've been having them, not so much.Frown

 Where I live I can only have one narcotic shot a month.  When I have to go in it doesn't matter what the shot is, as long as it works and it isn't DHE (very bad reaction.)  Dhe can be very helpful, just not for me.  I usually can stop the full-blown version by taking Maxalt MLT and Norco and laying in a quiet, dark room and listening to classical music on the lowest setting on my iPod.  If not I go in.  I am blessed in that our Urgent Care staff has been around long enough to know that I have exausted all my resources and then come in. The new guys, well, we start from square one and if one of the Dr.s or nurses are there I refer them to them.  I am on Inderal as a preventive and it helps some. 

 My great-grandmother had the syndrome (they were "sick headaches" then), I have it, my oldest daughter and her son also have it.  His started at three.  My youngest daughter has "classic" migraines, so the family history is there.  The bad news is that they may never go away.  The good news is that they can (if you have a good doctor) be managed.  Learn your triggers.  The diary is helpful. This syndrome is also common in tandem with Fibromyalgia, so you might want to check that out as well.  I'll be praying for you, my friend.  These can be a bear to deal with, but you can do it.

 

Reply
Answer This

Important:
We hope you find this general health information helpful. Please note however, that this Q&A is meant to support not replace the professional medical advice you receive from your doctor. No information in the Answers above is intended to diagnose or treat any condition. The views expressed in the Answers above belong to the individuals who posted them and do not necessarily reflect the views of Remedy Health Media. Remedy Health Media does not review or edit content posted by our community members, but reserves the right to remove any material it deems inappropriate.

Ask a Question

Get answers from our experts and community members.

Btn_ask_question_med
View all questions (4351) >
By AlishaDiane— Last Modified: 08/13/11, First Published: 10/14/08