Migraines & Headaches Community

Hello and welcome to our group, 1LRHG,

How awful and scary for you; I am so sorry to hear how much you've suffered (and are still suffering). as if classic, 'run-of-the-mill-migraine' isn't enough!

I don't know a lot about hemiplegic migraine, except that it affects half of the body and it very closely mimics a stroke, you cannot take most triptans as a preventive, although there are many new ones out now, and if migraines run in your family, you are probably more susceptible than most other migraine sufferers to Cortical Spreading Depression (CSD), which is caused by several gene mutations and influences hemiplegic migraine.

There is a book just written by Dr. Carolyn Bernstein, called The Migraine Brain. She is a Professor at Harvard Med and School and runs her own headache clinic for women. It is a new book, you can get it at the library, and it is very helpful and explains so much. Her premise is that everyone with migraines has a unique brain with unique migraines, as yours certainly fall into this category and she tries to help her readers and patients identify their individual triggers, and control their particular "Migraine brain."

I hope you find some of the book useful; she does talk of hemiplegic migraine, quite a bit. I wish you all the best, a speedy recovery, and please post again soon and let us know what your Neuro says when you see him/her this week.

Take care & be well, Sophie

I do understand what you are going through i have been having hemiplegic migraines for about ten years now and I got them from my father's side due to a mutated nineteenth chromosome. they are tough to handle but they are manageable i am a senior in college right now and I do take medications for them it It is most important to watch your diet though absolutely no msg or sodium nitrate! cheddar cheese is a trigger as well. Don't worry though this disorder can be tolerated.

My first time on this blog too. I also have been having hemiplegic migraines for the last 10 years and would've said the same thing that the other person said about not worrying and it's manageable watching diet (absolutely NO caffiene) BUT my son (10 years old) just started having the migraines the day after your first post. He had the whole "stroke work-up" like we all do and came out fine, diagnosis Familial Hemiplegic Migraine (genetic test pending). Ten days later he was back and diagnosed with a stroke from too many or too prolonged hemiplegic migraine. We have since had EVERY test there is to see if he had some add'l clotting factor to cause the stroke. He does not. He stroked 10 days after his very first hemi- migraine. This is NOT something to ignore or play around with. I've had them last for 5 days, too, and never stroked, but obviously this is possible although perhaps rare. He had his first one and then several more and then finally one that wouldn't let go. He was in the Pediatric ICU and ultimately in a day rehab program. He has significant deficits neuromuscularly speaking but seems to be okay cognitively. He is on Verapamil (calcium blocker) and some others to combat the side affects. You have to be your own advocate because this is fairly rare, some neuro's don't even treat it properly---there are CONTRAINDICATIONS for using regular migraine meds for hemiplegic migraines, so be sure you talk to someone who knows what they are doing! Years ago, I had one neuro actually say that this was just psychological! I'd like him to tell my son that...

Hemiplegic migraine is one of the scarier types of migraine because it mimics a stroke. Blood vessel swelling in certain areas of the brain restricts blood flow where it is needed, therefore causing stroke-like symptoms. However, these types of migraines can usually be managed just as others can with diet. Finding your own personal dietary triggers can be tricky because they do not have to cause problems the same day they are eaten. It can take up to two days for triggers to cause havoc in the body. Also, triggers to not have to cause problems every time they are eaten, which can also make them difficult to identify. So, all triggers have to be eliminated from the diet at once, until you feel better, and then added back in one at a time to find your personal culprits. If only one trigger is eliminated at a time, then there are others left in the body to cause havoc. This method for finding triggers was developed by a neurologist at Johns Hopkins. Dr. David Buchholz wrote a book titled "Heal Your Headache: The 1-2-3 Program for Taking Charge of Your Pain." For more information on dietary triggers and allowable foods, please visit my website www.migrainefreecooking.com. Best wishes on your migraine-free journey. I do hope you all feel better soon, especially the poster who mentioned her son.

I am not sure how to post on here but this is a question posted to all who have had Hemiplegic Migraines for more than two years. I was in an auto accident after several severe head traumas through my life, which triggered off a chronic pain disorder. I had never had a headache in my life when all of a sudden I collapsed last Jan. 1998 with what they called at the time "atypical migraines" which would leave me in a "shut down" like state and unable to speak. It was not until this past July that I lost all function/movement to both my lower extremities and complete right side of my body. I have continued having this migraine attacks losing movement to the right side of my body, just both legs, spastic arms, extreme facial droop, loss of movement to my tongue, eyelids and/or slurred speech or no speech at all. The loss of movement is different each time but really affecting my legs now which never happened before. They started me on Verapamil and doubled the dose now but unless I take a narcotic for pain I can not release from the paralytic attack and sometimes it last for hours. Now I have been left with right sided weakness to my entire right side which improves with pain relief but becomes extremely severe with increase pain through my body, not necessarily headache. My doctor is now calling it a stroke from these hemiplegic migraines since after almost seven weeks I have not recovered from my right sided weakness. Does this sound familiar to anyone out there who has Hemiplegic Migraines and if so what has worked best for you??? So scared. I keep getting worse and each time losing more and more movement/strength to my body parts. Does anyone know who the expert is with these type of migrianes near Philadelphia, Pa.???

Hi Momnfear and welcome,

I'm so sorry you're dealing with so much.

I'm worried that your post here, made as a response to an older discussion, may be missed by others who can help. So I encourage you to click on the orange Back to Topics List button on the upper right to get back to our main Migraines board and, once there, click on the orange Start Discussion button to post about your situation again.

Others will then see your post and be able to provide support and information.

FYI, we do not allow specific doctor recommendations on our boards so if you wish to get any here, and if you're comfortable doing so, you may want to post your email address so others can contact you with any suggestions. (My advice to you would be to have an anonymous email address from a free service like gmail or google or yahoo, and use that when posting online.)

Keep pursuing those answers from the members here and from your own doctors.

I have had them since I was 13. They can happen at anytime and are quite scary. My neurologist says that unfortunately, you should not take the medicines like Maxalt when you get them. He has put me in 200 mg of Topamax to prevent them and that seems to work really well. He says that with hemiplegic migraines, prevention is key. He also gave me a medicine called Bupap to take when I get one. It works wonders! Good luck!

Hi 1LRHG- just got a call from my daughter who is training in the airforce. Part of her training required that she attend a flight training seminar,of which included being put in a simulator and taken up to 10 thousand feet and then dropped quickly( this simulates the affect of flying in a fighter jet) The next day she complained of a migraine and when sent to the base hospital she experienced vision issues stating she could not see the person sitting beside her and the vision was blurry straight ahead,she then said she lost all feeling in her left hand. As we speak she is on her way back to the base after being sent to a city hospital for a CT scan. My daughter frequents a chiropractor and has stated she has felt the need to have her neck adjusted. She has been feeling stiffness in her neck for a few weeks now and I think her neck is out of alignment and that and the G's she experienced in the flight training probably triggered the event . Hope you get great results, and all is well

you are not alone. I have had the same problem since 2007. On Sunday 10/5/2009 in the emergency room they with a B/P of 200/100 they gave me the same diagnosis as you. They were beginning to treat me for a stoke. Read this. Trigeminal NeuralgiaIn about 90% of cases of trigeminal neuralgia, the patient has trigger zones, usually in the central part of the face around the nose and lips. Normally nonpainful stimuli in these zones can trigger pain. Stimuli can include talking, chewing, washing the face, brushing the teeth, shaving, facial movement, and cold air. After a paroxysm of pain, there is a refractory period lasting up to several minutes during which stimulation of the trigger zone will not trigger pain. Facial grimacing or spasm may accompany the pain. Between painful paroxysms, the patient is usually pain free, although dull aching may persist for a few minutes after attacks of long duration or multiple clustered attacks. Multiple attacks may occur for weeks or months. About 50% of patients with trigeminal neuralgia will have spontaneous remissions for at least 6 months. Physical examination is usually normal except for trigger zones, although up to 25% of patients will have sensory loss. Patients usually see dentists before seeking medical evaluation as they may think they have a cavity.

I take Verapamil If the episodes are frequent, preventive treatment can be considered with medications such as verapamil, topirimate, divalproex sodium, aspirin, and clopidogrel. For acute treatment, ergotamine, DHE, and triptans should be avoided because of the risk of increasing blood pressure.

hello, all in this thread --

if you have any Qs about trigeminal neuralgia, try posting on the "neurological disorders support group" board as well -- boards.webmd.com/webx/topics/hd/Brain-and-Nervous-System/Neurological-Disorders-Support-Group/. there is a gentleman there who knows everything about trigeminal neuralgia. his name is mr. redbear2005.

-- susie margaret

This happened to me too. I have been getting migraine's since I was about 9 years old. Sometimes I would get one each day for three days. Well in june of 2008 I was hospitalized with the exact symptoms you had. I had slurred speech, incoordination, blurred vision, paralysis on my left side. They thought that I had a stroke. After many tests, they concluded that it was not a stoke but a hemiplegic migraine. However, I had no lasting effects from this headache like continued slurred speech or incoordination. I dont know if this really helped, but when I got to the hospital they gave me plavix which is a blood thinner, since they believed it was a stroke. What I do know about this type of migraine is that it puts you at higher risk for strokes and anyurisims (i didnt spell that right) later on in life. I know what your feeling and how this disorder can be very bothersome. I am 23 now and ever since I was 13, I have been trying to figure out what causes my migraines as you probably already know, there are things that trigger migraines. You should research online or talk with your doctor, if you already havent, about the different triggers of migraines. Remeber one thing, all the different triggers of a migraine does not mean that its what triggers you migraine. For instance, they say chocolate and caffinee, can cause a migraine, but for me they dont. What triggers mine is MSG (monosodium glumate a preservative in many canned foods), cold cuts, red wine, and aged cheeses. You have to find out what causes your migraines and then make those changes accordingly. Also make sure that you read lables espically when looking for which products have MSG. You will be suprised how many products have it. This take a while because it take trial and error. For me it worked out in the long run. I use to have about 5 a month now I have only had 5 in the last year. I hope this helped and I hope that you will be able to get them under control.

I have hemiplegic migraines too (Sporadic, not Familial). I've had one type of migraine symptom or another since I was a child and went from Childhood Abodominal Migraines to Aura without Headache and separately Common Migraines and now to Hemiplegic Migraines and separate Migraine headaches.

I get both the hemiplegia and the headaches almost every day. They are almost totally debilitating. Does anyone know of any dedicated support groups for Hemiplegic Migraines?

Mine are not always one-sided and can involve 1 or both arms, legs, chest muscles, neck and even my tongue. I often lose my speech with them (expressive aphasia). I worry about what other muscles can become weak or paralyzed. I also worry when I go anywhere by myself or when I'm at home by myself. The longest it has lasted is 6 hours, but it generally lasts for about 20 mins but can recur again after a few seconds or minutes.

I also have another rare genetic condition called Ehlers-Danlos Syndrome which also leads to pain and dislocations. Migraines are associated with EDS, although I'm not sure if Hemiplegic Migraines are. Both conditions are 1 in 10,000 people. I'm curious if anyone else has both (loose joints, very flexible, early onset arthritis etc), although it's a 1 in 100,000,000 chance (assuming they're not linked).

I've tried many different drugs for the past 15-20 years and NOTHING has worked. I've tried exclusion diets and again nothing has worked. I do have a tonne of allergies, including food ones. The ONLY thing that seems to cause the hemiplegia is if I move my neck in an odd or sudden way of if I keep it bent in one position. I used to be able to press one vertebra in my neck and trigger them.

Hi. I need help. I believe I am having hemiplegic migraines, but according to webmd you start getting these when you are a kid. I had my first "extremely rare" migraine (according to 2 neurologists in the ER at UCLA) on Monday...it's now Friday and I have had 4 of these paralyzing migraines in 5 days (I got a repreave on Tuesday). I was given a migraine "cocktail" on Monday & a migraine medicine that starts with a "D" (can't remember the name) on Wednesday. Now I am injecting myself with Imitrex at least once a day & taking Norco to handle the ridiculuously bad headaches.

I haven't been diagnosis with the hemiplegic migraines, but unless there's another form that you get in your 30's, I've have every symptom.

Does anyone know how to manage these things to have a "normal" life? I'm about to loose my job, because I end up paralyzed for a couple of hours everyday.

Help!!!!! Please!!!!

Hey there.

I'm in your same boat. The only differences were my first migraine was 4 days ago and didn't have any pain associated with it and I haven't been official diagnosed with a hemiplegic migraine, just a "extremely rare" type of complex migraine.

I have noticed, ironically, that the computer can trigger these lovely things.

Your symptoms sound like my past week & I've been to 3 ER's and my PCPS office this week. If your neurologist is on vacation until the 10th of December I would go to an Urgent Care or Emergency Room.

If you live in southern California in the Southbay area, I would recommend Lakewood Medical Center. The doctors are good and there's not long wait...I was in & mumbling to the doctor in about 10 minutes from arrival (by car).

You NEED to see a Doctor ASAP, you need relief from this.

If you are still having speech issues, I would suggest typing out a basic document that has your diagnosis, regular symptoms, any medications that you are on & medications you have already attempted that have not worked. to give to the doctor (goes quicker that way).

Well, I'm off to take another stupid pain killer, I feel the paralysis starting.

Good Luck & I hope you feel better soon.