Hemiplegic Migraines

wsbala Community Member October 13, 2007
  • My 16 year old son has been diagnosed with Hemiplegic Migraines; a rare type of migraine that comes with stroke like symptoms - he entire arm or leg go numb and are useless for over an hour.  They are trying different medications to prevent these from occurring but we haven't had alot of success so far.

     

    Is there anyone that deals with these that can advise what medicine has been nest for them - both preventitive medicine and pain control once they hit?

     

    Thanks...

21 Comments
  • Anonymous
    Linda
    Aug. 19, 2011
    I have been bad for 9weeks and lost the right side my mouth drop it is like a stroke I been put on some tablet called pregabalin take 3 a day 75 mg. But still got very bad head ale and right side not bake very week just gon to work but been told my not be able to do my job in hospital Thay don't now a lot about it
  • Anonymous
    Angie
    May. 09, 2009

    I am 33 years old and have had Hemiplegic migraines since I was 10.  I went through severl test and several thousands of dollars.  I was gentically tested for familia Hemiplegic migraines. I too tried topamax.  For me the drug was aweful! My body could not handle this drug.  The side effects were way worse than the migraines, which is hard...

    RHMLucky777

    Read More

    I am 33 years old and have had Hemiplegic migraines since I was 10.  I went through severl test and several thousands of dollars.  I was gentically tested for familia Hemiplegic migraines. I too tried topamax.  For me the drug was aweful! My body could not handle this drug.  The side effects were way worse than the migraines, which is hard to believe. I am currently taking verapamil for preventative medicine and fioricet for the migraine. I hate that your son is going through this and hopefully he will outgrow it depending on the type he has. 

  • Anonymous
    michi
    Apr. 08, 2008

    I was also diagnosed at age 16. I am now 40. Unfortunately, there have been NO drugs that are acceptable for long term use. For emergent care hospitals prefer the drug Toradol. It is normally effective and has no narcotic effect. I am severely allergic to Toradol. This has left me with no help and hospitals accusing me of drug seeking. The medical community...

    RHMLucky777

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    I was also diagnosed at age 16. I am now 40. Unfortunately, there have been NO drugs that are acceptable for long term use. For emergent care hospitals prefer the drug Toradol. It is normally effective and has no narcotic effect. I am severely allergic to Toradol. This has left me with no help and hospitals accusing me of drug seeking. The medical community and insurance companies treat me like a criminal because of the rarity of this disease/disorder. Insurance companies fight with me constantly over payment of the hospital bills, physician visits, and physician ordered tests. The doctors and hospitals act like I am a drug addict. The additional aggravation of using narcotics for treatment is that they tend to cause "bounce back" migraines...The narcotic wears off and a new migraine occurs with worsening symptoms causing new hospitalizations.

    I wish I had more positive feedback to offer, but it is a life long frustration for me. Dark rooms, quiet places, lots off icepacks are very helpful. The pain is unavoidable. Your son should avoid contact sports as any injury to the head can cause severe symptoms of the migraine. Always keep icepacks in the freezer for him. You will need several because as they melt you need a fresh one right away to keep the pain to a minimum. Phenergan is helpful with the nausea and the side effect is drowsiness so he can at least get some sleep.

    I wish you hope, patience, peace and help wherever you can find it.

  • Anonymous
    Heather
    Dec. 19, 2007
    I don't know if you've already found a drug medication or a neurologist you feel comfortable with since you posted your msg.  My son was diagnosed 2 years ago with hemiplegic migraines.  The first neuro. we went to didn't make too big a deal out of it - told me they were very rare and try Advil with coke but never any triptans as these...
    RHMLucky777
    Read More
    I don't know if you've already found a drug medication or a neurologist you feel comfortable with since you posted your msg.  My son was diagnosed 2 years ago with hemiplegic migraines.  The first neuro. we went to didn't make too big a deal out of it - told me they were very rare and try Advil with coke but never any triptans as these could make the paralysis permanent.  We just recently went to a new neuro. who is very knowledgeable about this and is a top pediatric neuro in nyc.  he's doing genetic testing to isolate the gene and put him on norvasc daily to hopefully block the migraines.  if he has a breakthrough migraine, he's on compazine and benadryl (believe it or not this works).  never any triptans (Imitrex). He said these are dangerous migraines and he needs to be on medication the rest of his life and monitored.  he also told me he has another patient (teenage girl) on this regimen and she has only had 1 breakthrough migraine in the last 4 years...not bad.  hope this info helps.  if you're not comfortable with your son's doc - find another one.
    • wsbala
      Dec. 20, 2007
      Thanks Heather...I'm glad you have found a treatment that works!  Very long story short, the Drs. decided my son was not having hemiplegic migraines (although he had all symptoms) but instead has compressed nerves in the back of his head and forehead.  Nerve compression comes from trauma to the head (he had the sinus surgery and then contracted...
      RHMLucky777
      Read More
      Thanks Heather...I'm glad you have found a treatment that works!  Very long story short, the Drs. decided my son was not having hemiplegic migraines (although he had all symptoms) but instead has compressed nerves in the back of his head and forehead.  Nerve compression comes from trauma to the head (he had the sinus surgery and then contracted MRSA from the surgery).  We are going to this fantastic migraine/headache specialist (Pamela Blake) who is giving him steroid shots in the nerves of his head every 2 weeks.  He has gone from a pain level 10 to a 2...still making progress.  Believe it or not, many people with migraines actually have nerve compression and live on meds their whole life.  This explains why none of the meds were helping my son...
  • Anonymous
    cb
    Dec. 17, 2007

    Hello, I am a 36 year old female with hemiplegic migraines that I've had since the age of 9.  I also know that there is now a massive class action suit being brought against the makers of Neurontin.  This is not a few isolated cases. There are hundreds of patients who have taken Neurontin who were never told of the increased risk of...

    RHMLucky777

    Read More

    Hello, I am a 36 year old female with hemiplegic migraines that I've had since the age of 9.  I also know that there is now a massive class action suit being brought against the makers of Neurontin.  This is not a few isolated cases. There are hundreds of patients who have taken Neurontin who were never told of the increased risk of suicide. 

     

    Please be careful with your children and these drugs. They can be wonderful in the long run (I take Nortriptaline and it has changed my life, weekly episodes reduced to 3 or 4 a year) but many doctors don't warn of the mental health affect while the body acclimates to the drug. I have a wonderful life, but when I started on Topomax I had an episode of extreme violent thoughts, and immediately stopped taking them (my doctor had warned me to be mindful and vigilant of any adverse mental feelings).

     

    Remember also to watch your children's diets.  Nitrates (in hot dogs and some processed foods), too many carbs, lack of sleep, all these increase the risk of an episode occuring. 

     

    Your child can learn to live with this illness. I have lived abroad, travelled, worked and acquired master's degrees and started a family.  Please make sure they have their medical ID on them always. The disease can shift in its symptoms, growing milder or more intense.  I wish you luck and I wish your children courage.   

    • wsbala
      Dec. 17, 2007

      Thank you for the information -- the Dr's are now saying he doesn't have hemiplegic migraines.  He has what they call nerve compression in the back and fronnt of the skull and he is now seeing this fantastic Dr. who specializes in headaches and migraines.  She is in Houston, TX - her name is Pamela Blake and she has been on TV.  I swear...

      RHMLucky777

      Read More

      Thank you for the information -- the Dr's are now saying he doesn't have hemiplegic migraines.  He has what they call nerve compression in the back and fronnt of the skull and he is now seeing this fantastic Dr. who specializes in headaches and migraines.  She is in Houston, TX - her name is Pamela Blake and she has been on TV.  I swear she has literally saved my son's life.  I want to scream to the people in the world with chronic headaches and migraines that she has the answers.  She injects steroid shots in the main, irritated nerves in his head about every 2 weeks and he has gone from a pain level 10 to a level 3.  There is an actual procedure where they go in and take out some of the tendons and connective tissues that are putting pressure on the nerves.  It's an outpatient surgery and a little less than a week of recovery...

       

      I'm glad you are coping with your migraines and wish you continued success...

    • babs
      Apr. 01, 2011

      Hello,'Can you tell me what test she did to identify the nerve compression? My son is 17 , and when he was 15 this started===svere pain in one arm or the other, resulting in temporary paralysis for days. He was just diagnosed with hemiplegic migraines, and is now on topomax 50 mg. The doctor gave him sumatropin for pain and it did NOTHING. Now he called in...

      RHMLucky777

      Read More

      Hello,'Can you tell me what test she did to identify the nerve compression? My son is 17 , and when he was 15 this started===svere pain in one arm or the other, resulting in temporary paralysis for days. He was just diagnosed with hemiplegic migraines, and is now on topomax 50 mg. The doctor gave him sumatropin for pain and it did NOTHING. Now he called in fioricin for him. The odd thing is that my son never has any other symptoms, just arm throbbing pain,a nd resulting lack of movement in that arm...we had everything done and have been to more than 20 doctors. This is the first one with a diagnosis. But yet he has missed the last weekof school with almost an episode every day. Has anyone had any luck with the topomax and fioricin??I am desperat eto help him..He is in agony..Thank you, Barbara

  • Yvonne
    Oct. 15, 2007

    Hi,

     

    So sorry to hear about your son. My 10 yr son, Chuckie, also has hemiplegic migraines. They are a terrible thing to witness. You are so scared for your child and just pray for them to hurry up and pass.

     

    Chuckie is seeing a pediatric headache specialist. It took us three years to find her and the correct diagnosis. We are trying him on Verapamil...

    RHMLucky777

    Read More

    Hi,

     

    So sorry to hear about your son. My 10 yr son, Chuckie, also has hemiplegic migraines. They are a terrible thing to witness. You are so scared for your child and just pray for them to hurry up and pass.

     

    Chuckie is seeing a pediatric headache specialist. It took us three years to find her and the correct diagnosis. We are trying him on Verapamil (studies show it to be effective with hemis).

     

    In the past, Neurotin and Lyrica helped to prevent his episodes. We are hopeful that the Verapamil will be an effective preventative.

     

    I'm sure you know to not give your son any type of abortive medication at the onset of an attack due to the increased risk of a stroke.

     

    As far as pain medication, we try an advil, tylenol or motrin at first signs of an attack. If that doesn't help, we give him butalbital with caffeine or tizanidine hcl. We give him promethazine for nausea which helps him sleep it off. We try to be real careful to not overmedicate and cause a medication overuse headache.

     

    If he is still having a bad episode after three days, we are to take him to his new dr (1 1/2 hrs away) for an IV of depakote. Luckily, we have not had to do that yet.

     

    Before, we got the correct diagnosis he had two attacks that lasted 8 and 11 days. The doctor we had been using did not tell us about status migraines after 72 hrs.

     

    Again, I'm so sorry to hear about your son. Please feel free to contact me if you would like to talk some more. 

     

    The best advice I can give you is to educate yourself as much as you can. There is not a lot of info on hemis. But, you can learn as much as you can about migraines in general. Teri's book that is listed on this website is a great start. It gave me great guidance on how to be an advocate for my son when dealing with drs, insurance, family members, friends, the emergency room and his school.

     

    Good luck and I will be thinking and praying for you and your son.

     

    Yvonne-MigraineMom

    • wsbala
      Oct. 15, 2007

      Hi Yvonne,

       

      Thanks for your note and all of the information.  Since my son (Weston) just started having these types of migraines in the last couple of months, we are very new to this.  He's always had typical migraines (since 5 years old) but these are new.

       

      I was not aware about the risks of stroke with abortive medicine - the Dr. gave...

      RHMLucky777

      Read More

      Hi Yvonne,

       

      Thanks for your note and all of the information.  Since my son (Weston) just started having these types of migraines in the last couple of months, we are very new to this.  He's always had typical migraines (since 5 years old) but these are new.

       

      I was not aware about the risks of stroke with abortive medicine - the Dr. gave him "Maxalt" which is a dissolvable pill that he is supposed to take when he starts with the stroke like symptoms.  He had to take one today at school and instead of a full blown migraines and vomiting, he has a lingering headache.

       

      I also didn't know these types of migraines could last so long!  He had 2 of them last week and was in the emergency room for the Depacote IV.

       

      This site is a great site for information and communications - I've had alot of nice notes from people, including yourself.

       

      Thanks again....especially for your prayers....I'll do the same for Chuckie.

       

      Ann

    • Yvonne
      Oct. 15, 2007

      Ann,

       

      I didn't know about not giving an abortive either. I was giving Chuckie the Maxalt-Mlt too. I noticed that it wouldn't stop the migraine but, only make it drag out for days.

       

      When we found our current doctor, she said studies show an increased risk of a stroke with hemiplegics when using an abortive. There is an article on this website...

      RHMLucky777

      Read More

      Ann,

       

      I didn't know about not giving an abortive either. I was giving Chuckie the Maxalt-Mlt too. I noticed that it wouldn't stop the migraine but, only make it drag out for days.

       

      When we found our current doctor, she said studies show an increased risk of a stroke with hemiplegics when using an abortive. There is an article on this website somewhere about hemiplegics. It also states to not give an abortive.

       

      Is your son seeing a migraine specialist? Neurologists have so many areas to cover that they might not be an expert on migraines/headaches. There is a link on this website to look up a migraine specialist in your area.

       

      It took us three years, five neurologists, 1 family doctor, 3 chiropractors, 2 massage therapists, food allergist, eye dr, special diets, exercise, accupressure therapy, biocrannial adjustments (don't recommend for hemis) and tons of questions and aniexty to get where we are today. I'm not saying we have this disease under control but, we are managing it and the overwhelming fear is in check.

       

      A great doctor who listens to your concerns, answers all your questions and doesn't make you feel rushed is a must. If you don't have that now, keep looking. They are out there-they are just so hard to find.

       

      Yvonne

    • wsbala
      Oct. 15, 2007

      Hi Yvonne,

       

      Weston is seeing a Neurologist at Texas Children's Hospital that specializes in Migraines and strokes so I feel pretty comfortable with him (thank God)!

       

      He started Weston on 50mg of Topamax but since he had another episode at school today, they will likely increase it to 100mg.

       

      Lots to learn - my 12 year old son has severe hemophilia...

      RHMLucky777

      Read More

      Hi Yvonne,

       

      Weston is seeing a Neurologist at Texas Children's Hospital that specializes in Migraines and strokes so I feel pretty comfortable with him (thank God)!

       

      He started Weston on 50mg of Topamax but since he had another episode at school today, they will likely increase it to 100mg.

       

      Lots to learn - my 12 year old son has severe hemophilia so I am used to having to research, be an advocate, kick butt and take names!

       

      Thanks again for the information - I look forward to keeping in touch and hope our boys outgrow this!

       

      Ann

    • Nancy Harris Bonk
      Oct. 16, 2007

      Hi Ann,

       

      Please be careful when increasing the dose of topamax. It should be a slow increase and upping it to 100mg from 50 mg may be too much of a jump. Dr. Stephen Silberstein, of the Jeffersonhas Headache Clinic, has some specific guidelines you may find useful. Topamax is to be taken in a split dose. This means the total daily ...

      RHMLucky777

      Read More

      Hi Ann,

       

      Please be careful when increasing the dose of topamax. It should be a slow increase and upping it to 100mg from 50 mg may be too much of a jump. Dr. Stephen Silberstein, of the Jeffersonhas Headache Clinic, has some specific guidelines you may find useful. Topamax is to be taken in a split dose. This means the total daily  dose is to be taken twelve hours apart.

       

      I hope you find this information helpful. Please let me know if I can help you further.

    • wsbala
      Oct. 16, 2007

      Thanks Nancy....we will keep this in mind and will be following up with the Neurologist this week.

       

      I'm not sure if it's coincidental or not but these type of migraines started after my son had sinus surgery this summer and ended up getting staff infection in the sinus cavity and behind the eye.  Strange that it started then....

       

      Ann

    • Teri Robert
      Health Guide
      Oct. 20, 2007

      Ann,

       

      Infections and other illnesses stress our bodies, and that makes us more susceptible to our Migraine triggers. Some people have Migraine disease, but don't experience their first Migraine attacks until after an illness or trauma.

       

      Teri 

    • wsbala
      Oct. 20, 2007

      Thank Teri - this makes sense - my son used to have the standard migraines but I am sure the stress on his body has escalated things...

       

      Ann

  • maurice haren
    Oct. 14, 2007
    iwas on topomax for over ayear,it did stop the frequency of the episodes,but at the time iwas studying karate,and the topamax used to give me panic attacks,when iused to test for my next belts,the result was that my neurologist took me off the topomax and made me quit karate.the only upside was that i did lose weight  on the topamax,so monitor how your...
    RHMLucky777
    Read More
    iwas on topomax for over ayear,it did stop the frequency of the episodes,but at the time iwas studying karate,and the topamax used to give me panic attacks,when iused to test for my next belts,the result was that my neurologist took me off the topomax and made me quit karate.the only upside was that i did lose weight  on the topamax,so monitor how your son reacts to it.
    • wsbala
      Oct. 15, 2007
      Thanks for your comments - interesting how the different drugs affect different people...
  • maurice haren
    Oct. 14, 2007
    i have suffered these attack since iwas 7,thats 41 years,in my case iam alergic to all dairy,milk ,cheese ,ice cream,all citrus,orange ,lemon,grapefruit,and anything with orange  coloring,chocolateahd the wort allergy of all ,an irishman whos allergic to guinness,now thats a crime.if your son only loses one hour with these episodes ,then he is doing rather...
    RHMLucky777
    Read More
    i have suffered these attack since iwas 7,thats 41 years,in my case iam alergic to all dairy,milk ,cheese ,ice cream,all citrus,orange ,lemon,grapefruit,and anything with orange  coloring,chocolateahd the wort allergy of all ,an irishman whos allergic to guinness,now thats a crime.if your son only loses one hour with these episodes ,then he is doing rather well,migraine took the ability  for me to drive away from me and also the abillity to work,i take an awful lot of medication each day yet i still get at least one episode a week,my wife left me after dealing with my episodes for 18 years,also my 18 year old sonand and my 12 year old daughter,have both suffered episodes in their short lives
    • wsbala
      Oct. 14, 2007
      Thank you for your comments - my son has had 3 episodes this week so we are hoping the medication they put him on (Topamax) helps prevent them...
  • Nancy Harris Bonk
    Oct. 14, 2007

    Hello, and welcome to MyMigraineConnection.com!

     

    I'm sorry to hear about your son's diagnosis. Hemiplegic Migraine can be difficult but working with a Migraine Speicalist is imperative with this rare form of Migraine disease. 

     

    In June Teri Robert and I went to the AHS Scientic Conference. We attended a session presented...

    RHMLucky777

    Read More

    Hello, and welcome to MyMigraineConnection.com!

     

    I'm sorry to hear about your son's diagnosis. Hemiplegic Migraine can be difficult but working with a Migraine Speicalist is imperative with this rare form of Migraine disease. 

     

    In June Teri Robert and I went to the AHS Scientic Conference. We attended a session presented by Dr. Ann Ducros from France on Familial Hemiplegic Migraine and Sporadic Hemiplegic Migraine. Verapamil and lamictal are current medications used to treat FHM.

     

    Thank you for creating a SharePost.  SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

    We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. We have a few other teens who have FHM. Their moms come to the forum to get information and lots of support. We hope to see you there. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

    Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information on the main page of our site, http://www.MyMigraineConnection.com.

    If you have any questions, please feel free to post them to the forum or send me a message through my profile.

    Welcome again,

    Nancy Bonk
    MyMigraineConnection.com Expert

    PS: If you receive this message from more than one of us, please excuse the overlap. Thanks!

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