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Posted 3/31/2009 5:00 PM (GMT 0)
JessAnn - Your story sounds somewhat similar to mine. I also suffer from endometriosis and am not able to be on birth control pills to suppress it because of the hemiplegic migraines. I have had 4 laparoscopies to burn out the endo and am currently on lupron injections as a last effort before a hysterectomy. I am only 32 and my hemiplegic attacks started when I was 29. Two of the laps have been done since I started having the hemiplegic episodes and the other two were a long time ago, before I had kids. I seem to be responding well to the injections - just had my 2nd of 6 monthly injections yesterday- but I was really nervous about the side effects that I've read about. So far so good.

I was originally on topamax plus aspirin but my neurologist took me off the topamax and put me on verapamil - it has literally been a wonder drug for me. I also take magnesium and nortriptyline on top of the verapamil and asiprin; plus calcium and a vitamin supplement. I had to laugh at your comment about being in a 73 year old's body. I say similar things too, especially as I'm chugging down my seven pills each morning! It's a PITA, but it works wonderfully.

Feel free to contact me at [email protected] if you would like to chat or if you have any questions. Good luck!

Cat
Posted 4/4/2009 2:58 AM (GMT 0)
I am 29 years old, suffering from the same symptoms. My difference is that my leg takes a lot longer to work again. My other problem is my doctor. I have asked him for a referral but he has refused. Since September of 2008 i have had four episodes. I really need some help. I am this close to looseing my job let a lone my mind. Dorda
Posted 4/5/2009 3:24 AM (GMT 0)
Its great to find other people suffering from the same condition as I am and feel like they are losing their minds sometimes.  I am 37 and have been suffering from these for 3 year before being diagnoised Sept.2008.  I just saw a neurologist in March 09 and am having a bunch of test ran and an mri.  My episodes happen every two weeks and last 3-4 days of numbess, weakness, confusion, nauseau, fever, and most times i have paralysis on the left side that can last anywhere from 10 minutes to an hour on the left side.  Back in December i had a bad episode and my left leg has not been right since, I can only walk a little bits at a time before my leg is in pain and feeling weak.  My fear is that i might have had a small stroke back in december.  We will find out when I have the mri.  I am on tompamax and asprin and taken of birth control and beta blockers, anything that could increase the risk of a stroke.

I am a single mom with a 4 year old and a 7 year old and get so fustrated when I have these attacks.  And its so hard to make people understand how you are feeling when you have them!

 

Posted 4/5/2009 6:33 AM (GMT 0)
I wanted to share, HM is very scary when you don't know what it is... knowing what it is helps remove some of the mystery and while once you put a name to it you think you have some power over it that quickly subsides as the condition contiunes to go on. I wish I had found this forum when I was still trying to figure out what was going on.. I know they would have been helpful during a very difficult time in my life. I'm posting because maybe my story can help someone else.

I've been a healthy person for as long as I can remember. I am now 31 years old and fall of 2008 was very hard for me, it was when I first started getting Migraines and so far, knock on wood, I only had to endure them for 2 months before we got the medication right, knock on wood. Below is basically the summary of my experience with Hemiplegic Migraines, they are taken from emails I sent to my family keeping them up to date on my condition..... I'm doing well today thanks to Verapamil and the luck that my first Neurologist knew what was going on.

----------------------

In early September 2008 I had an episode where I had numbness in my right leg, it wasn't the
whole leg just a small part like my foot it then traveled up to my knee then to my right arm and
hand. We didn't do much about just ignored it and later that night i got spots in my vision and
was very sluggish is I guess how I would describe it. We went home and I went to bed with a
headache and ended up throwing up. But I woke up in the morning and it had gone away... Then a
week or so later it happened again and after that 2nd instance I made an appointment with a
doctor. He didn't have much to work with because it was a week or so after the episode that I
got to see him. We scheduled follow up appointment or mid/late October.

I didn't have any
episodes between then and the follow up but on October 19th it started to happen again, we went
to the ER so they could see me while it was happening. My blood pressure was really low but it
soon came up to normal levels and the blood test and CT scan I got while I was there didn't show
any problems. They released me and on my way out I threw up in a trash can in the waiting room,
that freaked out a few people waiting. I've always felt better after I throw up kind of like
the worst is over now. The nurse came to talk to me and said I would have to start all over if
I wanted to be readmitted but they didn't have anything to help since everything was "normal" so
I went home. Since then pretty much everyday I have a headache with differing levels of
intensity sometimes i hardly notice it and othertimes I just lay in bed trying to sleep till it
goes away, back at my regular Dr's office they gave me some medicine to help block the pain but
I can't tell if they work as I can't say if the medicine kept the intensity low or if it was
just a low intensity episode. I went back to the ER on Halloween and now I have some new
medicine which should knock me out when the pain is too great which is really all I want to do
when I'm having trouble. The precursors to the pain are spotted vision and numbness in no
particular order.. the numbness is getting worse, my whole arm will go numb or leg.. and lately
my face, one side of my neck, and my left side of my chest and back, It moves around a bit so it
isn't all of those at once and it comes on gradually and gradually goes away. I have a
appointment with a Neurologist to get an MRI on December 9th but I'm on the call list if there
is a cancelation list so hopefully I'll get to see him sooner. Right now my day consists of
trying to avoid moving around or standing for too long because that feels like it will trigger
an episode but I still go to work and such. When the pain is at peak intensity it does feel
like something pushing or pulling on the back of my right eye.

Additionally on 11/7/2008 I was out and about when I started getting real bad numbness, I had
alot of problems with fine motorskills (manipulating car keys, putting on my glasses) so I
deceided to go to the ER. When I got there I tried to fill out the paperwork to sign in but I
was unable to write my name.... I gave up on trying to write and I tried to talk to the
receptionist only to find I couldn't talk just slur something that couldn't be interpreted. I
could manage a bit of communication and I was able to call My wife and tell her to come to the
hospital but it was all one word at a time and repeated alot no sentences or complete
thoughts... although it was all clear in my head it just wouldn't come out right. Anyway they
just did a CT scan and observed me for 6 hours or so... my whole left side was paralyzed and I
couldn't think clearly. None of the tests on any of my ER visits (3 in all) have ever shown
anything serious everything is 'good' except I have a headache.

On Thursday 11/13 I got some numbess during lunch but it seemed to be subsiding so I went back
to work but when I got there I started working with a customer but I couldn't focus or
accomplish anything... basically there was alot of silence while I tried to say something i had
to concentrate pretty hard just to tell the customer I was going to have to drop off the call
but no sluring it was more like I had to focus on the task at hand or it wouldn't happen,
including speaking. I emailed my boss saying I was going home and he came over to my desk
because he said my email wasn't very lucid (he was already aware of my history). so anyway My wife
came and picked me up and I slept the rest of the day.

My wife spoke to the Neurologist's office and explained my 11/7 episode and they fast tracked my
appointment. The Neurologist put me on Verapamil, saying it is the drug with the least side
effects (constipation) and is very safe. If that didn't work he would move to more serious
drugs. It took about a month before the Verapamil was working at 100% effectiveness and we
increased the dose by 50% shortly after that. I had a full MRI spent like 40 minutes in the machine
and everything in head is as it is supposed to be.

My last major episode was early Dec 2008.. since
then I've been symptom free excecpt when I don't get much sleep.. If i go with out quality sleep
for a 2 or more days I will get headaches at night... it takes about as many days of quality
sleep to get back on track. But the spotted vision and numbness has disappeared. I'm hyper
sensitive to any part of my body falling asleep I'm scared the episodes will be back I don't
know how some of the people on here who have suffered for so long deal with it.
Posted 4/6/2009 2:02 PM (GMT 0)
Hi everyone!!! I am glad you found these pages, i was too when i found them. :-)   momonthego it is hard being a single mom

i have been it since my sons was 2 and 4 years old. When they was 10 and 12 i got sick ( nerve damage in my neck )

with a lot of pain every day so....... i understand you compleatly!!!

( My sons are now 20 and 22 so today its easier to be sick, as you can read here above i to got FHM and are struggling with

it too.

 

And YES no one else understand this eccept us who have this disease, when you say hemiplegic migraine they only hear migraine

and always they no many others who suffers from migraine.

 

DM i am glad that the medicines youve got is working for you. And yes it´s easier to deal with this when you no the reason why you

have theese attacks, but it is always with me in back of my head and its scarry, but i think that the stress over to be scared is a

trigger too.......

 

 

Nice to hear from all of you!!!!

Hope you´ll be HM free this week!!!!

 

With LOVE / Sweden

Posted 4/6/2009 2:08 PM (GMT 0)
P.s  Sometimes i wonder why its called Hemiplegic migraine??? Beacuse normal migraine has nothing to do with

calcium channels!!! And this rare form of migraine isn´t anything near ( normal migraine )

 

Love / Sweden smilewinkgrin

Posted 4/6/2009 3:19 PM (GMT 0)
i agree. yesterday at church someone asked "what's wrong with you? why are you limping?" they have known for 2 years that pawpaw is sick. but like you said- all they hear is mograine. they asked how a -headache- can do that to a person. sometimes i fet so mad at people. but they are ignorant. hemiplegic migraine is something i had never heard of untill he was diagnoised with them. he has had 3 attacks in1 1/2 weeks. he's not doing too well. is anyone out there on med for deression? i think it would benefit him. 'cause he does seem to suffer from some depression since last year. he also goes to court in 3 weeks to see if he can get on disibility. we've been working on it for over a year. he hasn't worked in 2 years. wish him luck. love to all, mimi. smurf
Posted 4/9/2009 2:44 AM (GMT 0)
mimi,

I'm so sorry to hear that, I will keep you and your DH in my prayers. Yes that is what it means..... :-) Maybe you should try to find another doctor, that's what we're trying to do.

Since I have been slowly taking my DH off of the "seizure" meds, he's been doing better. But I know that the HM will come back. I do think the "seizure" meds were causing him to have more HM's. So even tho his is doing better right now, I know we've got to figure something else out.

I wish you much luck.......keep us posted.....
Posted 4/11/2009 3:09 PM (GMT 0)
Hi everyone,

I was just wondering if any of you experience what I call painful hemiplegia? The best way I can describe it is by saying it feels like I have a tourniquet tied around the top of my arm and leg. I have weakness but it hurts too. My headache specialist did give it a medical name but I can't remember what he called it.

I have chronic hemiplegic migraine and so was wondering whether what I am experiencing is because I am chronic or whether any of you experience it too.

Kala UK
Posted 4/12/2009 4:56 AM (GMT 0)
Hola everyone:
My 16 year old daughter was recently diagnosed - she had had 2 severe episodes and several "milder" episodes in the last 18 months. She is seeing a neurologist who recommends an MRI every 6-8 weeks. He has also recommended she wear a Medic alert bracelet since she is in high school and may not have a parent nearby during a sudden episode. Question: Any adults wearing Medic alert bracelets? What about repeated MRI's. I really appreciate finding this site.
Gracias for any help.
Boriquamama
Posted 4/12/2009 4:56 AM (GMT 0)
Hola everyone:
My 16 year old daughter was recently diagnosed - she had had 2 severe episodes and several "milder" episodes in the last 18 months. She is seeing a neurologist who recommends an MRI every 6-8 weeks. He has also recommended she wear a Medic alert bracelet since she is in high school and may not have a parent nearby during a sudden episode. Question: Any adults wearing Medic alert bracelets? What about repeated MRI's. I really appreciate finding this site.
Gracias for any help.
Boriquamama
Posted 4/12/2009 8:28 AM (GMT 0)
Hi Boriquamama,

I wear a medi-tag watch just in case I am out and about and experience an attack. With regards to the repeat MRI's I have never heard of this before, because migraine doesn't show up on an MRI they are usually used just to rule out anything more sinister. So unless a previous MRI has shown up anything having continuous MRIs I believe is a waste of time.

I hope this helps.

Take care,

Kala UK
Posted 4/12/2009 8:30 AM (GMT 0)
A week in the hospital and tears in the doctors office for my doctor to realize he was in over his head. I wish in some way I had some one to talk to about about this. I got this new doctor. He is trying me on some new meds. He seems like he may know what he is talking about. One bad thing is that I am still not sleeping.My doctor says Ireally need the rest, but nothing is working. Another thing is is people around me. Trying to explain everything. I kind of feel like a lab rat. Has anybody every gotten on disability? Only asking because my job wont take the time to sit down and talk with me. Even if they did I know I wont have my job much longer. Not because I'm not a good work its because I'm always sick. And when I get sick, I am gone for a while. First and second time happen so close together that I was gone almost four months. The third time , they didnt even know. This last time, well I have been out almost three weeks.  I just wish I new my triggers and my signs. This last time I got a fast pierceing pain shoot up my neck to my head. Then I couldn't move. I was just laying in bed. My aura is always wacked out. I just wont to go back to normal. Play softball. Run with the kids. Live my life. Now all I have is pain. Either in my leg or my head. How much more medicine do I need to take to be normal again?
Posted 4/12/2009 9:59 AM (GMT 0)
Hi everyone!!

Kala i dont have pain when i get the attacks, but  i´ve heard that some can have it, i don´t remember its

name either, its too bad you also have that , it is really enough having headache every day like you have!!!

 

boriquamama i havent either heard about having so many MRI ? Like kala said they doesnt show anything

when you have HM, But theres a bigger risk having a stroke when you have HM so could it be something

related to that ? It is good that your daughter have the alert bracelet, but why should you have one?

If your daughter have one and you are with her when shes having an attack, so of course you can use hers!!!

I have one too and its really good to have one it gives a little comfort to no that help is coming when you need it.

 

Dorda its difficult to no how many medications you need before you can get better!! everyone of us are so

different what works for one person maybe doesn´t works for another, sometimes it takes a lot of time

testing what works and sometimes you can find it the first try!!

 

I really hope you find it soon!!!!

 

Okey hope you all will be HM free this week!!!

 

Hugs / Sweden  yeah

Posted 4/12/2009 5:09 PM (GMT 0)
Hola: Thank you for the quick response.  I am comforted knowing I can reach out.

To SWEDEN:  Clarification - Only my daughter will be getting the bracelet.  RE:  Bracelet - Is your name and medical informatin registered somewhere with the phone number on the bracelet or only HM and medication to administer? 

Thank you again.


boriquamama

Posted 4/12/2009 5:18 PM (GMT 0)
Hi Boriquamama,

On my medi-tag watch I have my name, my medical illnesses (Hemiplegic Migraine and Asthma) and my home phone number and my doctor's phone number on the back of it. However in the UK we do have two options either the one that has the details I have listed or a second option where it states your name and a phone number where your full details are registered in a database.

Kala UK
Posted 4/13/2009 5:57 AM (GMT 0)
Hola Kala UK.
Thank you for the info. Gracias, Merci
Boriquamama
Posted 4/14/2009 8:39 AM (GMT 0)
Hi boriquamama!!  Sorry i misunderstod you, I have a different kind of medical alert bracelet its one there you push a button on it

and my phone calls a certain number where nurses take the signal and home nurses come and help me so.... thats why i was wondering

why you should have one, eccept that when i read your question again i understod that it was a question if some of us who are adults

were one.

Of course my bracelet only works in my home and nearby it, and i think that i soon will have one the same as you have.

But like things are now i really dont often go somwhere without having a friend or relative with me. In Sweden we have one of the best

social network in the world, we dont need any insuarance to get medical help, doctors, hospitals and so on doesnt cost us more than 15 dollars.

And even if you dont have the 15 dollars you can get help free too, so everyone can afford to be sick.

 

So to get this kind of help that i do have, is very cheap. I no that especially in USA  you need the inscuarance to get the best medical help,

and that is really sad  cry   for those who havent got one. I think that everyone should have the right to get medical help even if some are poor!!!

 

Okey enough for now!!  Love / Sweden

Posted 4/25/2009 2:51 PM (GMT 0)
Hello Everyone! how is everyone doing lately? i haven't heard from anyone at all. Is everybody o.k.! Sure hope so. Pawpaw is doing pretty good. No new reason to complain. No one would listen would they? LOL! Just checking in with you guys. Making sure all i  :000202EE:  s well with each of you. Have a Blessed weekend. Love to all. Mimi







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Posted 4/27/2009 6:30 AM (GMT 0)

Hi i have been doing really good, i saw my neuro on thursday and i´m going to get Topimax to ( for the migrain pain ) Beacuse the antiepileptic med almost only helps to prevent the aura, and it have sure helped me.

Kala i was wondering if the ONSI have been tested by a group in England yet or if you are in that group? I saw that they are testing it now in the USA. And what about mimipawpaw have your DH seen a neuro yet and got some new medication?

Sweden

Posted 4/28/2009 12:31 AM (GMT 0)

  Hi everyone, I am new to this site and like many others before me am gratefull to have found it. I am 35 and have had hemiplegic migraines since I was 10.  In 25 years I have only met two other people who also suffer, one being my mother and the other my younger 18 year old  brother who has now had about 4 attacks, so this site is amaizing to me. The first attack I had was massive I thought I was going to die. The aura stage lasted about 12 hours and the headache lasted several days. I continued to have them every two to eight weeks right through my childhood. No medication was efective in reducing the frequency. I became an extremely anxious child. I think I always felt  a sence of underlying panic for fear of having another attack. I feel having this disease has shaped my personality I am not an adventurist type and fear going places alone or to events where I dont know anyone. Although my migraines have decreased in frequency and severity as Ive got older the old anxieties are still there.

My symptoms usually start with my vision going speckly hard to describe but you probably all know, I cant see or read and there are areas where my vision is kind of missing. This happens in both eyes. My speach becomes slured and I become very confused, words come out jumbled and some times the completely wrong word comes out. Then numbnes and tingling usually start in my hand and traveles up my arm neck then face. Even my tounge goes numb and I often panic thinking I cant breath. My foot and leg then follow. I dont have parellesis as such though because I can move my limbs but cant control where I am putting them properly. I cant pick anything up and cant feel an object placed in my hand as the tingling feeling is relentless and such a revolting feeling. I cant handle anyone touching me. There is no way I can walk or help myself in any way. I usually only have a few minutes warning before my vision and speach go haywire so I wear a medic alert.

 For the last five years I have only averaged one a year and they have been milder which is a great relief I have been able to talk and the pins and needles are less intense. I can finally say they no longer rule my life. As a child I used to pray every night that I would never get another attack I found them so terrifying and no one including the doctors in the hospital knew how to treat me. My first hospital trip at age ten they told my mother I had taken drugs at my friends birthday party, the second time they told her I had been poisond. My Mother knew what was wrong with me but her attacks had never been as sevear as mine. I had doctors in the hospital making me attempt to do things I couldnt such as walking reading and writing when I couldnt even see the pencil in my hand let alone feel it properly. They treated me like a lab rat and I would get so stressed I would hyperventilate.

 During my first pregnancy with my son I had no migraines and with my pregnancy with my daughter I had them constantly I spent the last trimester on valium and morphine. I had to move in with my mum as I was bed ridden and having many attacks each day, the anxiety was terrible. I was skin and bones from all the vomiting. Gee I havnt even mentioned the head pain, morphine 3 hourly is the only thing that helps. I must say I feel deeply for all that the other people on this site are going through. I know how much it sucks.

The last attack I had was completely different from any attack I previously had, no aura just intence vertago so that I couldnt stand even lying down I felt I was being tumbled about. Im just hoping its not Menieres disease which also runs in our family and is apparently connected to migraine. Sorry about the long message its been 20 years and its so good to get it out without feeling like a retard. Ill dry my eyes now. Im extremely lucky to have a really suportive family and a wonderful new husband who care for my so tenderly.

Posted 4/28/2009 7:01 AM (GMT 0)
Hi Summer 77!!!!  Nice that you found theese pages, i could feel your pain throw your letter.

I can amaging that´s really hard to get it as young as you was, in theese days doctors properly ( didn´t spell that right lol )

Did no less about this disease then today, but even today most of them does´nt no a thing!!!!

 

I am really glad for you that you are doing so much better now, If your mother and brother has it then you have the FHM type

how has your mothers and brothers life been with theese attacks? Your mother had no diagnos at the time when you went sick?

How old are your children now? There is a risk that they can get it too, but i´m certain you no that already.

What kind of meds have helped you?

 

Keeping my tum up for that little child who prayed that she wouldnt get theese attacks no more, and as a adult is feeling so

much better, hope it will go away compleatly!!!!

 

Hugs / Sweden yeah

Posted 4/30/2009 4:00 AM (GMT 0)
Thanks Sweden for your reply.
My mother has described her migraines and they are very similar to mine. She was diagnosed with migraine but had never heard of hemiplegic untill my diagnosis after CAT scans and EEG. As a child none of the preventers seemed to work. In my early twenties I was given an abortive medication to stop an attack once one had started this was called Imagran. This medication did not work and made things worse by causing the aura stage to occur more than once during the single attack. I have only reciently found out that they should never have given me that drug I am lucky I did not suffer a stroke from it. They still try to give me that drug when I have an attack and they have been giving it to my Brother. I have told him not to ever let them give it to him. I get very frustrated when drs try to give me advice as if I was suffering from your average migraine. I am hoping my daughter has not inheritaded these migraines she is 11 now and so far so good. I worry because she gets occasional vomiting bouts with a headache and these usually last around three days. She often needs an injection to stop her vomiting. During an attack the only thing that helps me is Morphine or pethadine injections for the pain. These increase the vomiting but I dont care about that that is the least of my problemss. They give me an injection for the vomiting although it doesnt seem to help. The pain releaf is also helpfull for the panic I feel during the attack and helps me to calm down and sleep on and off. The day following the attack I am usually still headachy and depressed. I am so lucky to only suffer occasionally now.
Posted 4/30/2009 1:45 PM (GMT 0)
good morning summer77! hope all is well with you. yes this website is just wonderful. there is so many nice people here!. this is mimi. one of the half of mimiandpawpaw. pawpaw is doing really well this week. "knock on wood" ha=-ha. on monday we went to pawpaw's hearing at the sociial security office about his disibability. think thigs went pretty well. of course we won't know anything for at least 4 weeks. so keep your fingers crossed. it was really nerve racking. glad that it is over with. pawpaw does have pain with his 'spells'. sonwtimes it is worse than other times. these migraines are like a box of cholocat. you never know what you are going to get with eace 'spell'. you just ry to deal with it as est as you can. but it is so hard to see hom hurt and can't do a darn thing about it. i sure hope it doesn't fall on our chiildten. they show no symptoms yet, but you never know. sure hope everyone has a GREAT WEEKEND coming up. Much Love to all. mimiandpawpaw.
Posted 4/30/2009 8:34 PM (GMT 0)

Good morning mimi thanks for your reply. I would definately be trying anti depressents I have tried different ones over the years. All have unwanted side effects but compared to suffering migraines its worth it. It has been hard to know in my case wether they worked or not but I think looking back over the years I think I did have less while on them. Amitryptaline made me tired a lot and crave food especially sugar. Floux (prozac) was ok just the typical sexual problems assocated with this one bothered me although no weight gain. At present I am taking Bupropion (wellbutrin, Zyban) for depression not migraines I have been migraine free on this  tho and feel great. I have a very stressful lifestyle at times with seven children two of which have special needs and also working with preschoolers and foster children. Im not sleepy on this one and have no negative side effects. Its not for everyone though. I think antidepressents are a great idea even if they just take the edge of any depression. There seem to be a link between depression and migraine it looks like the two go together and of course migraine will make you depressed pretty quick because it is so hard to live with. I have learnt not to judge one two quicky as the side effects as much more severe in the first two to three weeks and then almost dissapear after this time. Good luck on your outcomes from your disability hearing. You must keep pushing to get all the supports you can.

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