hemiplegic migraine

Hi All, I had my first hemiplegic migraine 2 weeks ago, I am 41 and this was my first ever migraine and I am not afraid to say it scared me? My symptoms were, bad headache 9/10, nausea, confusion, slurred speech, complete hemipegia of my right leg, numbness in my right arm and side of my face, double vision, photophobia, amplified sound. There is a family history of migraines and my aunt had a Tia at 45 but no family history of HM. The dr has prescribed Tristan's but I am worried as the migraine trust suggests these are contraindicated in this type of migraine. Two weeks on and I still have dizziness, transient blurred vision and a mild headache on and off MRI and CT were clear saw consultant neurologist but no follow up booked , I am a Nurse and in some respects that made the experience more frightening. Can anyone give me any advice? 

 

Thankyou both, went into another one last night the pain is fairly bad but it's the hemiplegia that upsets and frustrates me. The Gp said I shouldn't take triptans so I need to see him next week and in conjunction with the neurologist they will look at treatment. Thanku for advice personal20 on meds. MRI was clear so that's good as my doctor and nurse friends thought I had a AVM! It's nice to talk to people who understand what I am feeling , I have 2 young children so I am finding it a little challenging x

Hi Sanddancer,

I have had migraines since I was a very small child.  My dad tells me when I was 3 he would come in my room light a cigar which would in turn cause me to throw up and I would finally have relief.  My battle with migraines have continued now for 45 years.  Just in the last three years I have started having SHM episodes mostly occuring in the months of May and June.  I am currently receiving Botox injections every three months and my migraines have gone from 25 a month to about 6 per month.  I spoke with my neurologist yesterday about how to prevent the episode of SHM this upcoming spring.  He said it's all about prevention and should I start with symptoms of SHM I should call him immediately.  My last episode I was at work (I do homecare for a local Hospice) the RN thought I was having a stroke in a patients home and had another employee take me to the hospital.  Upon arriving at the local ER they too thought I was having a stroke and sent me to another hospital better equiped to handle the episode on their stroke unit.  As it turned out they said I had a migraine that mimicked a stroke. 

My question for you and anyone else reading this have you had episodes that only occur at certain times of the year?

I am a 36 year old male (Priest if that matters) in the United States. I wanted to say thank you for your post. It really helps me not feel so alone. I am not happy you are going through this but I am glad you shared it. I have been feeling really alone with this, and it feels great to know that I am not the only one who feels the doctors know less about it than I do. I have to tell THEM what it is like.  Here is what happened to me.

I had migraines about once a week as a toddler through age 12, then maybe once every 12wks. but they would cause me to vomit from pain, and then at age 19 I had a brain injury from a car accident and now have problems with times and dates and when things happened etc but recovered most of my memory. Since then though I have been having these "fits" as I call them. I finally decided to seek help when I lost my vision completely, followed by tingles then numbness, and the doctor said it was stress. So I told them about the "fits" where I see spots almost like I have dirty contacts in, I get dizzy, then my dogs flip out and start biting at my hands and nudging me with their noses, and then I feel the limpness coming. Sometimes I make it to bed, sometimes not. I have to lay down regardless because I loose use of my body starting with my left arm or leg (random which one is first), then I feel tired and within a few seconds I am asleep (what I now know is not just sleep) no matter the position or place. The doctor said "It is stress, and vertigo." I didn't tell him anymore of my symptoms because I felt stupid already and didn't want to feel worse. I would list all my symptoms here but there is a lot. Anyways, my mother had several "TIA" or "Mini Strokes". She went to the Cleveland Clinic, and saw a battery of doctors. They called her about a month later and said she has Hemiplegic Migraine, and she shared my symptoms with them, and they said I should be checked. So with genetic testing we now know what is going on with both of us. My point is that you can live with this for years, with wild and odd symptoms, but if you think that you have this or anything else, speak up. Get checked out, and don't let them make you feel bad. Sadly I have read more here than my doctor can tell me about it. My fits don't match the "average time table" that the doctor gave me either. Again thank you for sharing.

-May God Be With You

Hey everyone,

I first want to thank you all for sharing your stories. Like many of you, I have had an extremely difficult time getting a diagnosis for the health struggles that have more or less stolen my life from me, or at least the life I knew before. I am new to the HM realm and do not have a confirmed diagnosis, not yet anyway, so I was hoping to share my story with you to see if it sounds similar to anything you all have been going through.

I am a 26 year old woman living in the US. Other than an extremely ugly bout of mono when I was 18, I have always been more or less healthy. However, about three years ago, I started to experience frequent debilitating fatigue. During that time, I experience my first migraine; it was very classic - I had a visual aura (flashing black/white lines) for about fifteen minutes while teaching a class of fifth graders, followed by a pretty awful headache for the next couple of hours. For many months afterwards, I started seeking physicians' advice to explain my fatigue, but found few answers. In December 2012, while at church, I attempted to write a check for my tithe but found myself unable to grip the pen with my right arm. My arm was numb/tingly/dead and swollen feeling from the elbow down and remained that way for hours. Worried that I was having a stroke, my dad took me to the ER. After a CT scan and an MRI, the ER sent me home with a referral to the neurologist. Two weeks later, the numbness reoccurred in my right arm, along with my right leg, and the right side of my face. The feeling has gone away and reoccured at least once per week ever since.

In May, I finally had to leave my job in education due to excessive fatigue and a battery of other neurological symptoms that I began to term "episodes." In each episode I have, I have a 5-15 minute strange sensory experience usually involving things in the room appearing strangely sized or unfamiliar, or extreme light-headedness to the point of thinking I am going to pass out, extreme vertigo, or a combination of all of the above. One time, I experienced time passing by extremely quickly. After it subsides, my right sided dead/numb/tingly feeling becomes exacerbated and will last for hours. When it subsides a bit, I will be too exhausted to function and fall asleep. I have had one experience of a pain at the back of my neck where it connects to my skull that was so painful it landed me in the ER, and often these episodes include pain in that same area, but sometimes I have no pain at all or just little moments of pain here and there in my head throughout the episode. The lack of pain is what prevented me from ever considering migraines; but after a family friend who is an internist heard of my symptoms, he suggested HM and/or partial seizures. I also suffer from memory challenges, brain fog, confusion, and occassional slurred speech or stuttering between episodes. I know HM often has a familial component, and my dad has shared stories with me of visual disturbances (Alice in Wonderland like) when he was in his teens, but he never had any headaches.

Anyway, I am thinking about making an appointment with a local DO who specializes in migraines, but as I have spent a ridiculous amount of money on healthcare and am quite in debt with medical bills, I don't want to go running off to another doctor if I am ridiculously off track. Just wanted to hear the thoughts of others who struggle with similar issues. Thanks in advance for any words of wisdom!