Hi, Newbie here, Need help

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needingknowledge
New Member


Date Joined Nov 2007
Total Posts : 15
   Posted 11/3/2007 7:40 PM (GMT -7)   
Hi everyone,
I am new at this and scared and need some help. Last monday night and Tuesday morning I had these episodes (don't know what to call them) like siezures. Basically, I would get this stare(so my hubby says) and a pain behind my eyes and on the top of my head, then my eyes would roll back in my head and I would shake and stutter. I knew the words I wanted to say but could not get them out. Then after 3-5 minutes I would be normal. My hubby ( who's a firefighter) says they were TIA''s, like a stroke, so we went to the emergency room (okay, I made him go to the urgent care first, that doctor agreed with him and said TIA and sent me to the hospital. After a CT scan, MRI, EKG, also anti-siezure meds they said everything was clear and sent me to the neurologist the next morning. He simply said, they are migranes, probably from lack of estrogen take these Topamax and Maxalt and see me in 6 weeks, stay away from onions and a couple other things and don't drive for a week. I asked him if I should maybe get estrogen and he said you don't want that. Not satisfied with his answers after searching the web and finding out more about migranes I made an appointment to see another Neurologist next week. I have had many more since then and have been really sick (throwing up) because of the meds.  I sorry this is long. But here's my questions:
Does this sound like a migrane? If so what kind?
also, What test if any should be done?
What should I ask the new Neuro?
Should I see a migraine specialist?
Thank you so much in advance. I am really scared, because I don't have any information
DAR

~Liz
Regular Member


Date Joined Oct 2007
Total Posts : 120
   Posted 11/3/2007 10:26 PM (GMT -7)   
Hi,
I've been through something similar to your experience.  I've had migraines for about 4 years now, and about 3 years ago, I started having some episodes.  I would get a blank stare, my eyes would roll back and my eyelids would flutter a lot for anywhere from 1 to 5 minutes.  Once in a while I'd stop breathing and someone would have to do a sternum rub to me :( My doctor kept telling me that it was just a part of my migraines, but I wasn't too sure about that.  I saw a neurologist and he admitted me to an epilepsy center because he said it sounded like seizures.  I never got a conclusive answer because we were unable to record on of my episodes.  My doctor did however tell me that migraines and seizures are closely intertwined, migraines can cause seizures and seizures can cause migraines.  He also said that for some people, a symptom of their migraine is seizure-like activity.
Some questions I asked my neurologist were: How would I go about finding out what my episodes are?  What can be used to treat them (if he suggests what you are already on you might ask for something for nausea)?  What are the side effects?  Are there ways to prevent these episodes?  What should I do after I have one?  What should a person who witnesses one of my episodes do?
I hope this helps you a little, I know how scary it can all be at first. *Hugs* I hope everything works out :)

Post Edited (Liz-hopeless) : 11/4/2007 8:39:15 PM (GMT-7)


needingknowledge
New Member


Date Joined Nov 2007
Total Posts : 15
   Posted 11/4/2007 3:44 PM (GMT -7)   

That help ALOT :-)   Just to know someone else had a similiar thing.  You stopped breathing.... NOW THAT'S SCARY  Thank you for the hug.  I seem to be doing better today.  Maybe the medicine is working.  But I did locate a migrane specialist in my area and I am going to call to make an appt. tomorrow.  I think he might be the right doctor to start out with. I do have an appt with another nuerologist on Thursday, but after looking at his credentials he really doesn't practice in migraine and siezures.  I am not sure if I should go or wait and see the specialist.  But  I am going to write down the questions you suggested and anything else I can think of.  Thanks again.  HUGS right back to ya.

DAR


~Liz
Regular Member


Date Joined Oct 2007
Total Posts : 120
   Posted 11/9/2007 10:18 AM (GMT -7)   
Hello again :)
I was just wondering how your appointment with the neurologist went.  I hope you got some useful information.

needingknowledge
New Member


Date Joined Nov 2007
Total Posts : 15
   Posted 11/9/2007 11:20 AM (GMT -7)   
Hello again:)
I ended up canceling the apptiontment with the nuerologist for this week, becuase I found a Migraine Specialist Nuerologist and got an appt. for Dec. 7th. I also research the Nuero I was going to see and he has NO specialty in Migraine. I didn't want to change and then rechange meds so, I thought it might be best to wait. I thought I would be like going to a tennis shoe store when you needed high heels ha ha. So I am still taking topamax and waiting for the appt. I have to thank you and say that becuase of you and your post I did ALOT of research and I am starting to realize that I might have had migraine without headache (only with aura) for 7 years probably tied to estrogen (or flucuation of) and the idiot doctor was probably right, even though he was lacking in the bed-side manner department ha ha. But I do need to see a specialist and ask questions to get this under control. How are you feeling?

kota
Regular Member


Date Joined Oct 2007
Total Posts : 121
   Posted 11/9/2007 3:23 PM (GMT -7)   
Hello Needingknowledge, I have suffered from epilepsy since I was 8 yrs of age. I have petitmal/absent seizures. Recently because of other health reasons I have been having headaches and a few have been migraines. I even get eye pocket pain(my own terminology) and sensitivity to lights/movements. The very first time I had a migraine was two years ago when I had IVIG therapy for my suppressed immune system. The last major time was due to an antibiotic where my doc didn't read my chart very well...not to be given to someone who has seizures...uff'da. None the less I had seizures and migraines...uff'da. All I can say is it stinks getting old and post your findings. Also if you feel like you may have an aura(many ppl w/ epilepsy and ppl who get migraines get them...an awareness)you may be able to get into a safer place or make them not as worse as it could. Take care and Peace. Kota
_____________________________________
DX: Epilepsy
Depression
Anxiety
Fibromyalgia
Chronic Fatigue
Headaches
RLS
Neutropenia
Factor V leiden mutation
Hereditary sherocytosis

needingknowledge
New Member


Date Joined Nov 2007
Total Posts : 15
   Posted 11/11/2007 11:26 AM (GMT -7)   
Hi Kota,
Thanks for the reply,  Don't you just love doc's sometimes ha ha.  I am sorry to here that you have to deal with migraines and epilephsy  at the same time.  And I am finding out I am light sensitive too.  The mall is one of the worst places to go.   course my husband thinks this is a good thing ha ha.  How do you deal with the light sensitivity?  I am learning just to live in the dark until it is over.  Hoping today is a good day for you. :-)   Thanks again for you reply
Dar
 

~Liz
Regular Member


Date Joined Oct 2007
Total Posts : 120
   Posted 11/11/2007 5:20 PM (GMT -7)   
Hello :)
One thing you need to know is that most doctors will change your medications frequently unless you find something that helps you.  Another thing I've noticed is that a lot of neurologists do NOT have a great bedside manner, but they are very smart.  For light sensitivity I wear shaded contacts or sunglasses.  I tend to avoid places that have UV or flourescent lights because of their brightness.  Putting shades over the lights in your house helps too.  I'm glad your research has been helpful, I've done a lot of research over the past 4 years and even though some of it doesn't apply to me, it helps me better understand other people's migraines and their symptoms (which is helpful when your hospitalized in a migraine center lol).  I hope everything is going well for you :) I look forward to your next post.

lightsabr
New Member


Date Joined Nov 2007
Total Posts : 2
   Posted 11/15/2007 2:32 PM (GMT -7)   
Hi read your posts am new to the forum but have suffered migrane for over 16 years yours do sound like migrane. However the symptoms can be many and varied and what goes for one sufferer is not necessarily for another however migranes have a nasty habit of coming at you and biting you when you least expect it. Has any one suggested keeping a diary and noting what you have to find your particular triggers. It can be anything a flicker on the telly weather conditions food etc . I have that kind of thing happen to me sometimes they are frightning but as i say self treatment is best avoid your triggers and take meds only when needsd. Beware some doctors are not very understanding even the specialist migrane docs. Unless they suffer they have no sympathy. keep ya chin up and good luck

needingknowledge
New Member


Date Joined Nov 2007
Total Posts : 15
   Posted 11/19/2007 11:34 AM (GMT -7)   
Hi lightsabr
Thanks for the post.  That is a great idea to keep a log.  I had two migraine episodes this last weekend.  They weren't too bad.  But I hope I can find the triggers.  One happened when I was driven and I got tunnel vision.  Uggg.  I ended up pulling over and sitting on the side of the rode until the maxalt started to work.  It was pretty scary, but I am learning slowly when they are going to happen.  I know that they are tied to my estrogen somehow, because I only get them two to four days before menstration.  So, for now, I have made arrangement not to drive during that time.  I think that is safer for everyone.  Thanks again.
Dar

~Liz
Regular Member


Date Joined Oct 2007
Total Posts : 120
   Posted 11/20/2007 10:10 AM (GMT -7)   
Dar,
It's smart that you've made arrangements for you to not have to drive during the times you are likely to have an episode.  Mine are all year round and they aren't very predictable, so I haven't even got my license yet.  I'm supposed to wait until I've gone 6 months without passing out...that hasn't happened in 3 years.  *Hugs*  I'm glad that you have a little bit more of a hold on what's been happening with you.  Good luck!
~Liz

needingknowledge
New Member


Date Joined Nov 2007
Total Posts : 15
   Posted 11/20/2007 11:44 AM (GMT -7)   
Hi Liz,
How have you been doing? It must stink not to be able to drive, but believe me I understand. Hugs right back to ya!!! I do feel like I am getting a hold of what happening (even if I don't like it much ha ha). But thanks to you and others it's sure makes it easier to cope and find better ways of dealing with things. Hope all is going good for you. Take care
Dar

~Liz
Regular Member


Date Joined Oct 2007
Total Posts : 120
   Posted 11/21/2007 8:19 PM (GMT -7)   
Dar,
It does stink not being able to drive, but now that it's winter I can drive myself around on my snowmobile! lol I've always really enjoyed being able to talk to people going through similar things like migraines, even if you don't learn any new information it's always nice knowing that you're not the only one going through it. Place like this really help me deal with some of the issues I face involving my migraines. I've been doing alright lately, thank you for asking :) I'm really glad you know the cause of your episodes, I've always felt that even if I found out that I had an incurable disease that was causing my migraines I would be happy just because I would finally know the problem. I hope you're doing well, stay strong!
Liz
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