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wwise
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/4/2009 1:33 AM (GMT -6)   
Hello, I am 23 years old and i have sufferd from FHM(familial hemiplegic Migraines)  since i was 14 years old. I was finally diagnosed about 2 years ago. Im still in the learning process of this disease. I need all the input i can get. I want to try herbal remidies, because im just scared of off the medications they have out there. if anyone has anything they would like to share that would be amazing.

Sweden
Regular Member


Date Joined Jan 2009
Total Posts : 55
   Posted 3/4/2009 3:25 AM (GMT -6)   

Hi wwise!! It not easy to have this disease, but there is help to get! First i have to say that i havent heard of anyone who have had some help from some herbal remidies, and the medications that are availebal for us is well tested, so you shouldn´t be afraid of them.What kind of symptoms do you have?

Mine was and still is ( not so often like before thou ) Very hard, and for me it woulnt be possible to do anything if i didn´t have had the medication that i have. ( Lamictal = Epilepsy medication ) Many here uses other medicines and have had help from them. You can in this forum read about many who suffer from this disease and what have helped them, under Hemiplegic migraine.

I think you should talk to yor neuro about this!

And i really hope that you soon will get some relife and help!!

Sweden


wwise
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/4/2009 10:53 PM (GMT -6)   
Thank you for the reply, I really appriciate it. Its so nice to talk to someone who actually understands. And i think thats why i get so frustrated because no one does understand. The medication Lamical, is that because you have epilepsy, or did they just prescribe that to people who have FHM?
 
Whitney

alucas
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 3/4/2009 11:08 PM (GMT -6)   
what are your symptoms? I am wondering if it's the same thing i am dealing with. No one seems to relate with me.

wwise
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/4/2009 11:17 PM (GMT -6)   
It begins with the aura, thats how i know im getting one. Then i will start getting the numbness typically down the right side of my body, black spots in my vision, and then when i try and talk, i sound like a 2 year old. I mean i can think of the words i am trying to say,  i just cant get them out. and then its followed by a massive headache. I wouldnt wish the pain on my worse enemy! It takes atleast 3 days to get back to normal. Like my brain is trying to recharge. its insane. I have had to go to the ER almost everytime.

Sweden
Regular Member


Date Joined Jan 2009
Total Posts : 55
   Posted 3/5/2009 4:09 AM (GMT -6)   

Hi wwise!! Yes Lamictal is one of many medications that people use for FHM or Hemiplegic migraine= Sporadic migraine all these are the same disease the different between them are that if you have FHM it runs in the family, and you have family members or relatives with the same disease, if you dont have it then its called Hemiplegic migraine.

I dont have epilepsy, i have FHM and Lamictal helps with the aura for me, for the headache i use Zomig and painrelife with codein. Have you taken the gene test? and have some one in your family the same disease? Yes its nice to talk to people who suffers from this, i was so happy when i found this forum.

I come from Sweden and havent found anyone on the Swedish migraine pages who have this diagnosis, so its a really rare disease all over the world. For most of us it have taken many years to get this diagnos as for you too. From what country do you come from?

Bye / Sweden


wwise
New Member


Date Joined Mar 2009
Total Posts : 8
   Posted 3/5/2009 12:25 PM (GMT -6)   
I am from America. I havent really done any testing, all i know is i have this disease. My grandmothers sister, and her daughter had them as well as my mom. But they deffinatly didnt have them as bad as i do. But im getting the ball rolling so i can get this thing figured out!!! HAve you found that anything else works, besides the medications?

Sweden
Regular Member


Date Joined Jan 2009
Total Posts : 55
   Posted 3/6/2009 8:09 AM (GMT -6)   

Hi wwise!! Okey good that you have put the ball rolling ( probably doesnt spell that right lol ) Its´god that you are going to have a ct scan, everyone of us have had one. There are many other diseases that have the same symptoms as FHM, for example there is a kind of epilepsy yhat has it and so on........ So before you have had all test you ca´nt be sure its FHM, or have your mother got this diagnosis? Dont be afraid it is very good that the doctor take you seriosly and are trying to find out whats the problem!!!

Everyone who has migraine have different triggers ( things that we can have a attack for ) It can be something we eat, smells and so on. It takes time to figurit out for each and everyone of us. For me one of the triggers is stress and another is hard work like if i´m cleaning the whole house för several hours, then i no i,m going to start a attack. So i try to take it easy and not do all that i need at the same day so......... i´m sure you have some triggers too ( if it is FHM that you have of course ) so in time i am certain that your going to find your triggers.

Good luck whit the ct i am sure it´s going to go well and take it easy!!!

 

Bye / Sweden

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