Share Your Personal Experience with Hemiplegic Migraine Here
That would take too long.. 42 years dealing with it. In this days I was a kid and there was no medicine.
Thank goodness for the triptans and before that Indocid. At least the pain has become mostly manageable. With once in a while the help of extra injections or an iv in the Er room.
I don’t know. It’s a life battle. I’m fortunate to be able to organise my life around it. There is no fighting it. It just makes things worse. I accept the ride and I tell people I’ll see them on the other side when it starts. It can take from 2 to 7 days.
Then it takes a week to recover from all the medicine and the exhaustion of pain. I’m still grateful it’s not a lethal disease as long as I stay away from the window.. could be worse in that sense. I may try Aimovig in a couple of years when there’s enough feedback.
I’ve been having migraines since I was 3-4 years old, I’m 28 now. I’m on prescribed medication but sometimes more often than not, they don’t work. My family has them too, my grandma has chronic migraines, my mom had hormonal triggered migraines, mine are a bit of both. My grandma says that hers start as flashes of lights, or colored dots in space. My moms says that she gets blurred peripheral or tunneled vision before hers start. Mine change. I can see flashes and then full blown migraines, or I can start with pressure behind my eyes, usually the left eye. I can feel a poker jabbing in through my skull and the the fully blown migraine, sometimes the pain just wakes me up from sleep. Basically anything and everything can cause me a migraine, from loud sounds, to bright colors or lights, if it’s too hot, if I don’t eat.
I get extremely sensitive to lights, colors, sounds and temperature; I sometimes can tell when I’m going to start one, but for the most part they just happen out of nowhere. I usually have to stay in my room, which has been modified to a sensory deprivation chamber. I have extra insulation, and padding on more surfaces just to keep things from echoing or allowing sound in, I have 2 layers of blackout curtains in my room just to keep light from coming in. Usually with the migraines, I can’t keep medication, food or water down, it all comes back up. I have to get shots in order to keep them away or for making them go away.
I’ve had migraines that have blinded me for 2 days, I’ve had people tell me that I look like I’m having a stroke because half of my face has gone numb. They leave me weak, to the point that when it’s finally gone, my body is exhausted, and I’m left barely able to move and my brain stays in a fog.
Good morning I need some advise and not to sure but has anyone successfully claimed p.i.p due to HM as I have been advise to cut my hours due to my HM and stress of young children but can’t afford to!! I get these HM around four times per week
Many thanks xxx
My first hemiplegic migraine was about 8 years ago. I was at work making the rounds of the registers collecting the days’ money, and had 1 person with me to deter folks from stopping us. Thank God for her too! I started to feel a sensation of looking through a tunnel, and she said “you don’t look good..are you alright?” I tried to answer, but what came out was garbled nonsense, that to me sounded perfectly normal. The left side of my face droopped, and I felt very weak. An ambulance ride & a million tests later the med team diagnosed hemiplegic complex migraine. Turns out gram had them, 2 aunts, 2 cousins, and 6 children of cousins too.
I’ve had migraine for as long as I can remember (age 3) and was first diagnosed at age 5. When I was 9, a doctor realized that I was having seizures during migraine attacks. Virtually all the women in my family have migraine, including both maternal great-grandparents, maternal great-aunts and aunts, and my siblings.
I have migraine without aura, migraine with aura, and hemiplegic migraine. I wasn’t diagnosed with hemiplegic migraine till in my late 30s when my GP, who had migraine and who was current on all the research, diagnosed it.
Of all the migraine attacks I have, hemiplegic migraine is the most painful. In fact, now that pain medicines are so restricted, I only use opioids for the HMs, not for any of the others. The HM also have the most neurological symptoms, including smelling, tasting, and hearing things that aren’t there; numbness in my L face, hand, and foot; dysphasia and aphasia, which makes it challenging for me to speak and be understood, if I am able to speak at all; and a complete inability to understand spoken language, which makes people think I’m not paying attention or that I can’t hear them.
Several years ago, my doctor recommended that I begin wearing a medical ID for HM with the “seizures and aphasia” listed since, during the visit, I was experiencing an aura and the Dr said my speech was slurred: I can’t hear that, nor can I hear when my words come out all jumbled (it all sounds normal to me, but sometimes my guy says, “What did you just say? Did you mean…”).
When I was younger and didn’t realize that all my strangest symptoms were related to the HM, I thought I was going crazy when I smelled things burning or heard radio talk shows when no radio was around. This was long before the Internet, and so this information about aura symptoms was not available. Getting diagnosed with HM in my 30s was a great relief.
I’ve had migraines for all my life, as far as I can determine, and was diagnosed with migraine almost 60 years ago.
Hello, not officially diagnosed with HM, my daughter was. Doctor actually asked her which one of her parents had them. Have had chronic migraines for over 26 years. When mine started there were Classic or Common. Depression was really big at the time.
I had a stroke in 2009. Felt like a migraine, rolled over went back to sleep. No feeling in my left hand when I woke up. Wedge shaped section of dead brain tissue. I qualify as a Zombie! We use humour to cope.
Fun fun, I react horribly to the triptans, ergotamine and DHE 45. My go to pain relief is my room, nick named The Crypt, cold pack and Advil Liquid Gels. My doctor stopped giving me Oxycocet when I asked for a dosage increase. The 5mgs weren’t enough.
I take 1200mgs of Gabapentin with 60mgs Paxil. Lil bit of PTSD & Anxiety in there too.
Mine start with a crescent moon shaped aura in my vision, sometimes double vision. I start to feel very confused and just “out of it”. Then it seems like I get tunnel vision and can only see straight in front of me. Then the numbness starts in my left hand and spreads up to the left side of my face, lips, and throat. Once the numbness subsides, I get a severe headache around my left eye and temple with complete light and noise sensitivity. Only thing that has helped so far is the use of CBD, doesn’t stop the symptoms but definitely helps them not last all day! I’ve tried triptans with no success. Sleeping also will ease the symptoms if I’m able to fall asleep with the severe pain in my head! No reason for the onset of the migraines that I can tell. It’s just random about 4-6 times per year.
My first attack was last year shortly after my 50th birthday. I had been working outside in the hot desert sun and started getting tunnel vision, numbness in my left fingers that started going up my arm, then tightness in my shoulder, neck, and face. By the time I sat down my whole left side was paralyzed and I couldn’t speak. It lasted about 30 minutes and I told myself “maybe it was heat exhaustion” so I went to bed for the rest of the day.
I remained in a haze until the next attack 2 days later and my son called an ambulance. The good news was that I received a pretty quick diagnosis of Hemiplegic Migraine based on these 2 episodes which present as “classic” symptoms.
Since then my world has come to a screeching halt because of all the sensory symptoms that I can’t get a handle on and here is why…
Weeks after the first attacks I started suffering from CONSTANT debilitating vertigo. I couldn’t get out of bed for weeks. My Dr. thought it might be BPPV so he sent me for physical therapy but it did nothing. On top of that, it was the holidays, lots of family visiting and I was still having paralyzing Hemiplegic attacks.
By the time 2019 I had received my first round of Botox and was already taking 100 mg of Topamax for regular migraines. I also went to an ENT Dr. who did caloric testing and found a deficit in my inner ear related to the central nervous system.
At this point, I’m hanging in there……better than I was but a new me. I now know that when I wake up and have that “ill” seasick feeling like I just smoked a pack of cigarettes in 15 minutes, it’s going to be a bad day and it may be 2 days of feeling like that before the Hemiplegic paralysis hits, then the painful headache which has been lessened with Botox followed by 2-3 days of brain fog.
Sorry this is so long, it’s my first post, I still can’t read and use the computer very often without it making me sick (vertigo) today was a good day so and we need to take advantage of those when we can.
Has anyone who’s been diagnosed with Hemiplegic migraines had issues with breastfeeding? More specifically, the side that their headaches are on, any issues with that breast? I am long removed from nursing, but I am trying to piece things together and I had to stop nursing both my daughters because whenever they nursed on the left side (my bad side) I felt like I was going to die, if I tried to continue my children would have starved to death because I would have only been able to nurse on the right. The pain in my nipple was so intense and it ran all the way up and down the left side of my body. I had a reduction several years ago and have no sensation in my nipples now, so I couldn’t replicate it even for medical purposes. I still constantly have an anxious, uneasy, heavy feeling in the left side of my body at all times. One of my doctors thinks there may be a relation, so I’m hoping there is someone out there who can relate. Thanks