hemiplegic migraine

Thanks.

I will talk to my doctor again

I was diagnoised with with a Sproradic HM 2 months ago.  Since the incident, I am still recovering.  I'll make this short with specific things I've learned and am putting into practice.  My situation was brought on by a new bed that was too soft and initially caused neck and shoulder pain/impingement, followed by that day shopping in a very cold A/C store with the start of headache and then stepping outside to the sunny, very warm outdoors. Bam, it happened within an hour of these events coming together.

What I learned; After 5 weeks I was still not right after seeing my new neurologist, so I suggested Physical Therapy.  I am working with a PT who specializes in migraines, vertigo, concussions.  He found my neck, head and eye mechanics were off for two reasons.  1) for the fall that occurred, 2) that my neck muscles were so tight and not functioning as they were protecting my head/injury, and as a result I continued to with regular migraines (from neck tension) for the 5-6 weeks after.  I am in PT for 10 weeks to stretch and strengthen my neck, chest, back and stomach muscles, regain my eye coordination by doing the PT's specific puzzles - like number searches on a checkerboard.  PT IS CRITICAL for the RECOVERY - just like for a stroke patient.  I'm learning how to reduce and override the migraine symptoms through meditation, not going to bed when I get dizzy, but focus on stationary object and 'RETRAIN" the brain and override the symptoms if I can.  I always listen to my body if this is not working, but if I head to bed, I do deep breathing which reduces the tension up the neck and into the head. This is working for me - not the first or second time, but after numerous tries as I am overriding the 'migraine brain'  from taking over.

I'm taking a combination of B2, magnesuim, tumeric with black pepper, Tylenol, ibrophen.

After meeting with an acupuncturist who works for the a leading, last resort migraine centers in the US, he observed my posture, for he said poor neck posture one of the leading causes for SHM.  I am no longer wearing running shoes which propel your posture forward on your balls of the feet, like high heel and am now wearing flat, but supportive with memory foam tennis shoes.  You are suppose to walk on the front heel of your foot, rather than the ball of your feet - which was giving me 'what i'll call chicken head', (what you may hear is called Text Neck) my posture mechanics were all wrong, just like what happened with sleeping on that too soft bed, then using poor posture.

I have an erognomic chair and foot rest.  I have a supportive, level, but comfortable bed.  I had to work into this as my body was so screwed up that I had to make my bed comfortable, then supportive ( I have a Sleep Number bed), but in your case, maybe watch how much memory foam or cushion you have on your bed as that can stress the neck as it sits up on your pillow.

Best wishes and I would need want this for anyone - it's been so challenging.

 

I experience simular situation, but mine is always the right side above my ear. And mine sounds just what your describing. But been to the ER 5X everyone of them has treated me for stroke but when results come back my MRI is clear. Unknown diagnosis.....

Hi you are right a lot of drs including specialists know little due probably only 0.04 of the general population is registered with the condition.  

I experienced what this static means recently.  It appeared I suffered a stroke in July 16.  Rushed by helicopter to a major hospital- 5 days stay only to have the specialist say "migraine". ---- I thought hang on I am still paralysed down 1 side.  Transferred to my local hospital- my go said This is a HP migraine you are the second one I have seen in my 46 years of practice.  He sent me to a specialist he classed as world class.  He sought the images from the hospital as the report from the hospital specialist was missing a numberof points.  After viewing the images he confirmed severe hemiplegic migraine.

My doctors have explained severe hemiplegic migraine attacks can create the same physical symptoms and outcomes as strokes.  The difference is the origin of the attack.  The other misunderstanding which You and others are experiencing is because it is labelled a migraine everyone expects it to END at a point in time.  Wouldn't't that be GREAT!

You might like to consider a change of diet for while.  I have changed to a vegan diet for 6 weeks and I have noticed changes - less severe headaches my asthma reduced,  recent blood test major improvements

bye

 

HI everyone,

I'm so sorry that we are all being challenged medically with Hemiplegic Migraines. I was diagnosed with migraines around the age of 14. I suffered with them pretty frequent, but was never given medication back then, to really help subside them. I'm in my mid 40's now and its gotten much worse.

January 2015, I went into the ER with chest pains, dizziness, lightheaded, pain in my head, sweating and a episode of syncope. They performed a CT scan, but didn't see anything. They even sent in a neurologist that said, (it was all in my head). The doctor's wanted to do a cardiac workup to R/O heart attack and because I had a very reputable cardiologist, I asked them to transfer me to another hospital. At the other hospital I went through a cardiac work up, and was convinced that I needed a cardiac catherization. I was so out of it at the time and on the pain medication they gave me, I agreed. During the cardiac catherization, I explain to the cath-technician that I was having severe pain, and condescendingly he says, yes you have a catheter in your arm, I thought to myself, wow!! no-kidding. I expressed the stabbing pains I felt in my left leg after the cardiac cath was done. My cardiologist suggested I have a neurology consultation. The neurologist requested an MRI/MRA the results showed I had strokes ( and I found out I was extremely closterfobic). Since the strokes and recovery my migraines worsened. I was admitted back and forth in the hospital between 2015 and 2016 so many times I can't remember anymore. Last hospitalization being October 2016, my left or right arm would give out, my speech was slurred, my legs gave out, I had dizziness, blurred vision, severe pain on either side of my head, or the entire head, and the left side of my neck. The left side of my face went completely numb. Finally they said it was called, "complicated migraines", which is now called, "Hemiplegic migraines".

I was put on Topamax and a slew of other medications. I feel debilitated, confused with memory loss, my head is always foggy and I'm always fatigue. I looked online to see if it was a support group for people who had strokes and Hemiplegic migraines. I'm so glad I found this thread. Like someone said, I thought I was alone.

What can we do, to bring HM to awareness? We are being misdiagnosed, treated as if we are crazy, given injections and all kinds of medications, and we don't know the long-term side effects. Some of us are still disabled by this, can't work, drivers license being taken away. Going from doctor to doctor trying to find an answer. Who can and will help us. We must educate ourselves and the doctors.

Hi sanddancer,

I know exactly what you are going through. When I was 3 I attempted a flip I saw on a cartoon and landed on my head. My neck was severely damaged with torn ligaments, and was terribly jammed. It was nearly broke. I was paralyzed for about 2 months and nobody thought I was going to be able to walk or be normal kid ever again. As my neck held so did my strength. The only thing I really delt with was neck pains until the 3rd grade. I started having chronic migraines. The same as yours. It starts out with me seeing white flashing dots and only half a person. Then I start to get dizzy and nauseous. Soon after I get numb on my entire left side slowly (it's very rare for me to get numb on my right side) then I start to slur my words and lose my train of thought. As soon as I knock out my migraine starts and I wake up once and a while to throw up and take more medicine. Considering I am only 13 my it's been really tough for me the past 5 years. I constantly get told by my class mates that I am such an Inspiration considering I never know when my migraines will hit or how often. Everyone thinks it's amazing how I balance my life, grade, and 4 sports I play but it's really hard. As the years go on the migraines get worse but I am powering through it.

I hope your migraines ease as time goes on. Stay strong

I was diagnosed with complex (hemiplegic) migraines about 14 months ago when they became more severe and I temporarily lost the use of the left hand side of my body landing me in the stroke ward. I then ended up in a continuing migraine cycle that lasted for about 4 months and was hell.

After trying numerous drugs I have been managing to control the migraines with imipramine and have got them down to lasting no more than a day about every two months although I am left with numerous residual symptoms (numbness to the face and fingers one he left side of the body, tinnitus and reduced hearing, problems controlling my temperature etc) which although a pain, I can live with.

I have noticed that although the migraines have been more controlled they have come on much quicker and noticed that my tingling had started to move to right hand side of my body (it is usually on the left) which is odd, the tinnitus is aldo much much worse and I can't hear over background noise.

On Monday I had another "migraine" at work which differed in that this time I had some sort of a full body seizure (although I was conscious of sorts throughout). It lasted about 6 minutes or so and then left apart from my left arm which wouldn't stop shaking until the evening. I was rushed to A&E where the diagnosis was "we don't know what's wrong but it's not life threatening so good bye!" The Doctor then rang me in the way home as he had forgot to mention that I could not drive, have a bath on my own or cook unsupervised until I had seen a neurologist. I waiting for an appointment but am a bit lost as to what to do in the meantime. Has anyone else had this symptom and if so how did you deal with it? How soon after did you return to work (I'm a lawyer and really need to get back but don't want it happening again).

Also does anyone wear a medical bracelet (I have been lucky that these attacks have come on either at home or at work but I travel between offices and to courts quite a lot so wondered if it would be a good idea to get one).

Thanks for looking at this.

Hi, I have suffered with this for over 17 years and no one has told me what it is. I only found out through my own research.

My left eye closes and the side of my face droops, it looks like I've had a stroke, my speech is slurred and my words come out wrong , I now know that these are symptoms of my Migraines.

I used to teach IT, now I'm having to rely on predictive text to type this. 

I have been sent to neurosurgeons who say it's only a migraine. However, I have Hemiplegic migraines which is altogether different, I have also never heard of anyone having one last on and off for over 15 days at a time, I sleep 75% of the month, I have no pain to speak of, I feel extremely ill, I  can't speak properly, my words gets jumbled up, they get slurred, I can't remember what to say, if I'm having a conversation I sit there with long blank pauses, I get very confused, I get lost when I'm out, can't be let out on my own any more, I'm even forgetting how to walk. Every day is getting worse. How do I know the difference between this and brain damage? 

I wish someone would help me.

I have not eaten a meal since before Christmas, I'm only awake long enough to eat biscuits. My husband who is 72 with COPD needs me, but has to look after me instead. 

My GP has given me Topiramate but they are not working, 

I have an appointment to see him again on the 9 February hopefully he will come up will some kind of help.

I recently started suffering from hemiplegic migraine's. And from the research I have done any medication in the triptan Family should be avoided at all cost. If anything it's going to make your attacks worse and pick up in frequency. I know Imitrex will do the same thing. Right now I am on propranolol , And I use Excedrin for migraine. They mention Botox but from what I have read online these are not the ideal solution to hemiplegic migraine's. Because it's actually a chemical problem within the brain. But get yourself off of that medication your dr. put you wan. You need to seek out a headache specialist.

I was also recently diagnosed with hemiplegic migraines as well.  Honestly, I believe I was misdiagnosed with "regular" migraines when I was 13.  I only received this diagnosis because I started falled and whacking my head and face and ending up in the ER.  So, they have become progressively worse over about 35 years now.  I know get completely paralyzed on my right side and also my head.  Yeah, nice.  I also have been known to not make a whole lot of sense and become confused.  At first they thought I was having TIA or strokes.  I'm thankful for a good Neuro that really listened to me.  I have just started Topomax.  I had another episode right after starting the Topomax and I haven't yet gotten to a therapeutic dose yet.  I haven't had any of the "bad" side effects that you read about from topomax, but I'm keeping a detailed journal to see.  It was either topomax or depakote and I wanted to try the topomax first.  I'm a single Mom and I'm on medical leave right now to figure this out.  I absolutely have to get back to work, so I have to find something that works, even if the side effects aren't optimal.  I feel for you and even though not much is known about this rare disorder, I'm glad I found this forum and others that are suffering too.  There really is hope in numbers.

I've been diagnosed with HM since last year January and since then been given a lot of medication but nothing seems to work I get paralized one my left side too really need some help I am on nefadapine5mg now but it's not working as having these episodes more frequently now anyone who can give me information about London migrane institute or number that I can ring need a second opinion plz