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Monday, November, 23, 2009
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Winter Holiday GuideEnjoying the Holidays Despite Migraines and Headaches --> Info for you...

Is there an average age when hemiplegic migraines stop?

speckrig
01/01/09

My headaches started at 12 years of age. I can remember it to this day.I thought I was dying. My left hand pinky finger began to tingle, and the tingle began to travel from the bottom of my finger to the tip and then progressed through my other fingers to my thumb,slowly traveling around my wrist and then up the bottom of my arm to my shoulder, leaving a dense numbness behind in every area that had tingled. This sensation traveled up my neck into my face, becoming most prominent in my left cheek as it slowly crawled into my lips. The sensation went into the interior of my mouth on the insides of my cheeks, including my tongue! Uncontollable salivation quickly became drooling as my face numbed and I would drool down my face without realizing it because my face had become numb. The tingle wound around my head through my temples into my scalp and then down the right side of my face, basically duplicating the sensations on the left side of my face and head. The tingle seemed to spin and twirl in my right cheek before quickly moving down into my neck and then past my right shoulder into my right arm. As it began to wind around my right arm to my hand, the muscles in my right arm began to pulse and twist visably, almost as if I were repeatedly using a grip strengthener over and over again at lightning speed until my arm muscles began to cramp and burn and then bind to the point of being as hard as a rock. My fingers would begin to bend and contort, resembling the digits of someone suffering from severe arthritis. At this point my peripheral vision began to go haywire as a spiraling,shimmering,spinning dead spot began to develop in both of my eyes. This visual phenomena caused dead spots in my vision from the center of my line of sight to the outer edges of my normal eyesight. I could hold either of my hands up and while looking straight ahead was unable to see them until they were directly in front of my nose! Then suddenly, the right side of my body from head to toe went numb. The right side of my face began to sag and the right side of my body began to feel as if enclosed in concrete. A slow steady pounding began in my right temple. I started sweating profusely and shaking uncontollably on the left side of my body. The tingling in my right arm quickly climbed into the right side of my face and seemed to lodge in the right side of my head where the pounding was beginning to turn into a sharp,intense overwhelmimg pain the likes of which I had never experienced before, but would come to know very well in the following years. Sudden violent contractions in my stomach began causing projectile vomiting of Olympic shot-put distances, causing the pain in my head to explode,bring me to my knees. My vision slowly collapsed to where only two small pin-sized holes directly in the center of my vision wre the only clear things I couls see, the surrounding areas of my normal eyesight having become swirling seas of nothing,dead spots being the only way I can describe them. My nose started running,the drooling became foaming at the mouth,my ears began ringing and the pain became unbearable. I felt parched and dehydrated. In a desperate attempt to assuage the gnawing thirst I drank a glass of cold water only to have it fly from my stomach almost immediately and the pain would burst in the side of my head. I had grabbed the index and middle finger of my right hand with my left hand and positioned them on my templar artery and then using every ounce of strength I posessed pushed on them as hard as I could with my left hand, desperately trying to stem the pulsing,agonizing torturous pain in my head. Having curled up into a fetal position ball on the ground the people and family around me did not know what to do. They carried me inside and left me lying on the sofa with a damp washcloth for my forehead and a large bowl for me to vomit in. My thirst became uncontrollable, and the more I drank water the more I vomitted and the more my head exploded. I was crying ,sometimes whimpering,sometimes screaming, sometimes writhing so violently that they would lay on top of me in a vain attempt to calm me. This went on for hours until at some point I became completely incoherrent. At one point I remember coming to and someone gave me a pill of some sort and a short time later I passed out. This was the first episode.

 

This was the beginning of the dark times. The headaches quickly progressed in frequency of occurences and severity of pain. The warning signs of an impending attack became gradually more well defined. The variety of symptoms I would experience, both mentally and physically, became a sort of sick recipe from the cook book of my migraine headaches.

 

If the first sign I had was a severe numbness in my right arm, the headache would come on with lightning speed and intensity, usually within minutes of the initial onslaught, but would last only a four of five hours.

 

If the warning signs started as I have stated with first headache, then I had twelve to fifteen hours of sheer bliss to look forward to. Crawling into a dark closet became my refuge of choice, with frequent visits to the bathroom to chug water and vomit. Not being able to hold anything down, taking medication was useless until after hours of vomiting my body had no strength left to throw up what I took or swallowed. Even so, nothing worked unless it was extremely powerful and knocked me out soon after taking. Liquid codeine being one of the few that I was able to keep down.

 

Repeated emergency room visits always had the same results. X-rays,cat scans,spinal taps were the normal routine. I remember one E.R. doctor giving me Heperin(sp?) in a vain attempt to quell the pain. I think it was to thin my blood. He was spellbound(the nurse told me about this later) as he watched the vein in my right temple visibly expand and contract seemingly in time with my heartbeat. This is the sensation that using my fingers to push into my head attempted to stop or at least lessen, as every beat of my heart sent an agonizing,overwhelming throbbing pain to my head.

 

Finally, after ruling out meningitis and clots and strokes and allergic reactions, an i.v. would be administered(following repeated almost vain attempts to find a vein) to combat the dehydration resulting from the sweating and the inability to retain anything in my stomach. Finally someone would bring in a shot of Demerol or whatever, place it in the i.v. and as the burn from said medication would start in my arm, I would mercifully pass into oblivion. Frequently I would wake a few hours later, usually as a nurse or doctor would be taking my vitals and scare the living crap out of them as they would tell me that I should be knocked out for hours from whatever it was they had admnistered to me. That said, the pain never went away. My body simply collapsed, exhausted from everything I had been experiencing. The pain became somewhat easier to deal without the rest of my body freaking out. Sometimes the headaches would come on rather oddly, with a hodge-podge of the onset symptoms, none of them being severe, and the sensations jumping all over my body. The pain would then start in my left temple, becoming sharp and acute but nowhere near the intensity of a right side occurence. My vision would become erratic, but would never progress t the tunnel vision I usually experienced.

 

Here is the odd part. As I would try to talk, the words coming out of my mouth would be almost gibberish. Every word would be in English, but words would be missing or completely out of place in the sentences I would attempt to utter, completely scaring the hell out of the people to whom I would be attempting to convey a message to. These headaches would not last long, but the speech side affects would take a while to lessen. I would then in a few days, or at the most a week, experience a full blown migraine of epic proportions.

 

Thus, these left side headaches became precursors for severely debilitating episodes. As the time between occurences gardually became shorter and infinitely more severe in intensity I began to try to keep a constant vigil on what I could be doing that might be causing them. I read that aged cheeses, chocolate and even red wine might be triggers for migraines, so I completely removed these from my diet, to no avail. There seemed to be no rhyme or reason, and after repeated visits to numerous physicians, ranging from neurologists/neurosurgeons to orthopedes.

 

I finally found help, not a cure, in chiropractic adjustments. This came from a recommendation from a neurologist whose wife suffered from what he called cluster migraines. She went to a chiropractor and had her neck adjusted and experienced instant albeit very diminished relief. I found that if I was able to quickly visit my chiropractor for a neck adjustment at the first sign of symptoms, I would get a lesser headache but by no means no headache at all. Luckily for me my chiro suffered from migraines and could relate, quickly placing me in a dark room and carefully adjusting me.

 

After years of suffering, I have learned to keep liquid ibuprofen caplets at hand at all times as these seem to work best when taken within minutes of feeling an onset. I fear that I have done irrepairable damage to my heart from the constant projectile vommiting but there is nothing I can do. Immotrex doesn't work and I think that I may even be somewhat allergic to this drug as severe skin rashes and heat flashes occur when I am given this medication.

 

As such, even if I die from heart failure from the damage vommiting has done, I will finally be at peace. I can only imagine how many unexplained and sudden suicides have been the result of migraine sufferers. If anyone can help, I would greatly appreciate it.    Thanks.   Chuck

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Answers (5)
boomy1949
Thursday, January 01, 2009

Well speckrig, I can't tell you how horrible I feel for you right now. I thought I had suffered over the years but you really have had it rough. You don't say how old you are now but I am 59 as of this past week and I do not get the demiplegic headaches that bad anymore. My migraines started in college. The only things I think that have helped me is quiting work and getting out from under the tremendous stress I was always going through. I worked for 29 yrs. The last 10 owning my own businesss. I suffered dibilitating migraines about 2 times a week or more. I also know what foods or additives to stay away from. Most of the ones you named. But one thing you didn't mention was MSG. If I eat anything with MSG I get sick within 30 minutes with aura, nausea and severe migraine. Diet drinks also cause migraines. I don't know if you get depression with the headache but I always have. Years ago when I worked and had the frequent migraines I would get so depressed and anxious I really wanted a way out. I take antidepressant meds, anti-anxiety and something to help me sleep. A lot of people totally disagree with this but I don't care. It has helped a lot. I also take something for high blood pressure. But, the one migraine med I finally found that has been a life saver is Maxalt. I have to have Maxalt. Either the one that melts on your tongue or the pill. If I take that as soon as I feel anything it almost always stops it. I'm not saying it will work for you but please ask about it. Hormones have always played a big part too. I think as I get older that has not been a big issue. It seems to be stress, bright light and food or food additives I have to watch. Also smells such as chlorox, strong candles or perfumes. YUK!  When you talked about pressing on your temple it just made me sick. I used to tie a long sock around my head as tight as possible because my arms would be too weak to press on my head. I had one bad spell of slurring my speech and feeling like I was in another world and couldn't communicate. That was about 5 yrs. ago. I was so scared. Like I said I don't know how old you are but I do think your hemiplegic migraines will slow way down. Imitrex used to make my heart pound and felt irregular. Forget that. You should go to a heart doctor just to make sure your heart is ok. That may make you feel better mentally. Try staying away from all the things I've mentioned and if you can get away from anything that is causing you stress please do. Besides chiropractor try getting massages. I pray you get better soon and the headaches stop. It can happen. Please write again with an update. Blessings and good health for you in 2009:)

l have the same symptoms as you.
Antonina
Wednesday, September 16, 2009 at 01:27 PM

Dear Chuck ,l can,t believe we have the same migraine,l've suffered since l was 11,most people when they talk about migraines,mean bad headaches,but the numbness that starts in the hand,twisting your fingers then moving to your mouth,even your legs and feet,unable to move them ,not be able to see,and speak properly,then nausea and the vomiting starts,too sick to go to the toilet,plastic basin ,who,s husband cleans out,must keep drinking (my husband makes me drink after l vomit)also my bowel starts so l need help to go to the toilet,often l feel to faint.Then your not sure lf your sleeping or awake,you fell as if your going to die and the extreme pain in your head.

On Sunday l suffered another attack,but unlike the other times (FIRST TIME MY HUSBAND INJECTED ME WITH A COCKTAIL-on advice from the Doc-3 different things)It helped my vomiting,the pain was still severe,but l only had numbness on my head,cheek ,chin,and it now wed and l still have a numb head and cheek.After this migraine l wasn,t the ususal extremely tired ,l was still very sore ,but l had energy, today l,m feeling unwell,and strange .l also have an intolerance to medicine so maybe it the cocktail.For all the years l,ve had migraines(THE CURSE)its interfered with my life.l also have 3 children and with everyone l had 17-18 migraines with each .just wish they would get milder and once a yr,l'm having an attack every mth.Antonina.

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l have the same symptoms as you.
Antonina
Wednesday, September 16, 2009 at 01:28 PM

Dear Chuck ,l can,t believe we have the same migraine,l've suffered since l was 11,most people when they talk about migraines,mean bad headaches,but the numbness that starts in the hand,twisting your fingers then moving to your mouth,even your legs and feet,unable to move them ,not be able to see,and speak properly,then nausea and the vomiting starts,too sick to go to the toilet,plastic basin ,who,s husband cleans out,must keep drinking (my husband makes me drink after l vomit)also my bowel starts so l need help to go to the toilet,often l feel to faint.Then your not sure lf your sleeping or awake,you fell as if your going to die and the extreme pain in your head.

On Sunday l suffered another attack,but unlike the other times (FIRST TIME MY HUSBAND INJECTED ME WITH A COCKTAIL-on advice from the Doc-3 different things)It helped my vomiting,the pain was still severe,but l only had numbness on my head,cheek ,chin,and it now wed and l still have a numb head and cheek.After this migraine l wasn,t the ususal extremely tired ,l was still very sore ,but l had energy, today l,m feeling unwell,and strange .l also have an intolerance to medicine so maybe it the cocktail.For all the years l,ve had migraines(THE CURSE)its interfered with my life.l also have 3 children and with everyone l had 17-18 migraines with each .just wish they would get milder and once a yr,l'm having an attack every mth.Antonina.

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Nancy Harris Bonk
Nancy Harris Bonk
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Community Manager


My first real experience with chronic head pain...

Saturday, January 03, 2009

Hi Chuck,

 

I'm sorry you are having such a rough time. A Migraine attack itself can be scary, add those symptoms, and that brings it to a whole new level.

 

Hemiplegic Migraine (HM) is a rare form of Migraine disease made a bit more complicated because there are two variations: Familial Hemiplegic Migraine(FHM) and Sporadic Hemiplegic Migraine(SHM.) HM is difficult to diagnose its symtpoms are similar to various vascular conditions and often thought to be stroke or epilepsy. It typically begins in childhood and may end with adulthood. But no, there is no average age when HM stop, I'm sorry to say. For more information on HM read this article: Hemiplegic Migraine - The Basics

 

What is really important is that people who have HM be treated by an expert, a Migraine specialist. Since it is a rare condition, a Migraine specialist who devotes his entire practice treating people with Migraines and headaches, this expert would know best how to treat, diagnose and manage someone with HM. Current treatment options some doctors use for HM include calcium channel blockers and antiseizure medications. We have a list of patient recommended Migraine specialists you can see by clicking HERE.

 

Good luck

Nancy

Antonina
Antonina
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Antonina is Wondering why the numbness in my head and face hasn,t gone away since my last migraine 5dys ago
Scottish born ,living with my husband and 3 children in Greece.

l love life but unfortunately ,sometimes l,m just a mess and get down...

Wednesday, September 16, 2009

lts Antonina again l thought l,d tell you the cocktail the Doctor gave me,and l wasn,t sick at all for once,Voltaren 75mg,Primperan 10mg,dexamethasone-G.a.p 8mg,although the pain and numbness on my head and face,were extreme.l also put a really hot water bottle on the back of my head,always do,l think it makes me feel better (THINK)l,m going to go to the chiro,l went 8 years ago when l was pregnant with my 2nd child,when l was unable to lift up my arms for 2 mths after a bad,bad migraine,so l,m going to give it another try,good luck with the cocktail after you ask your Doc,and keep trying to get over this awlful curse,don,t give up,l get like you lots of times but l have to stay strong for my kids.Do you feel dreamy some days even though you don,t have a migraine?please tell me any thing else if you fell unwell at times,and if the light bothers you?Thankyou Antonina-to Chuck

Erin
Wednesday, September 30, 2009

Yes! Cluster Migraines! I cannot believe it, I had the same experience about 4 years ago that lasted for about 6 months, 2 months were non-stop migraines, unable to eat, probably about 6-7 ER visits for whatever shot they gave me that made me sleep for 2 days. MRIs, CATscans, more tests, more drugs... the whole bit...

 

None of that was working for me and nobody had answers.. so I finally went to my chiro for adjustments (neck, back, and hips). I went a couple times a week at first then about once every other week .. about 3 months later.. no more migraines.

 

I never got an answer from the medical doctors, My chiro said that I was just REALLY out of wack. I still go to the chiro for regular visits and have not had a migraine like that since.

 

That was the worst experience I've ever had in my life, I cannot believe it has been years of yours! Keep going to the chiro but go regularly rather than just before you start feeling crappy. Also, the drug Axert worked for me. Good Luck!

Gabby
Gabby
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Gabby is In pain...can't sleep.

Sunday, November 01, 2009

Hey Chuck...I cried when I read this. I have horrific migraines also. But your symptoms sounds just like mine. I was diagnoised with migraines, seizures and it's been crazy. I'm disabled, have already suffered a heart attack from the all this and I'm lost. My family threw me away and want nothing to do with me. They think it's all in my head or i'm taking too much meds. Well, blame it on the docs. I have glaucoma, hypertension, avascular necrosis (can barely walk),  I'm totally gone thanks to the migraines. I take 1500 mg of depakote a day along with 1400 mg of neurotin, along with other meds. Demerol is the best thing that helps!  I have fibromyalgia and cramping...sounds the same what you had the droops, drools, nausea, vomiting, thirst, everything. I'm glad you're better, really. You found the cure somewhat. I can't go to a chiro, my necrosis and/or bones are fragile. I can easily fracture.


Take care and God bless.

Gabby

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This animation shows one of the key causes of pain during a migraine--changes to the blood flow within the brain.

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