Letting It Out

This may not make any sense to anyone out there but just need to put these thoughts down on "paper".................I have had these migraines for 30 years and they have been daily for almost the last 3 years. One of my symptoms is a slow fading out to unconsciousness - I know in my head this happens because my husband or whoever is with me when this happens tells me that I am unresponsive and I know that I have lost time but it is still hard for me to wrap my head around the fact that I am not "there" for 5 minutes, or 30 minutes or however long my brain shuts itself down for.

Tonight when the migraine symptoms started I was alone and laid down on the couch and closed my eyes and focused on the sound of the television............I opened my eyes about 30 or 40 minutes later thinking that I had just been listening to the TV.......but a little while ago I noticed that I had missed a text from a friend. The realization that I had not heard the text has sent me in a panic. I know this sounds odd but, for me, tonight, this is undeniable proof that what I have been told all along is so very true - that every day I lose unconsciousness - that I am not here..........that I have no control..................

In my head I have known for a long time that I fade completely out.........but tonight.......not hearing that text is freaking me out and I am scared that I am losing my ability to cope with this disease and my ability to get up every morning and try to have a normal life. L

Oh, J-M, please don't be upset, please, and please take a step back, take a long hard look at it all and think calmly.

If everybody was telling you that this is happening long time ago, then that must mean what you have experienced today is NOT
something new, right? it was happening long time ago, all along, only you, for some reason, wasn't as affected by it indirectly
as you were today. But, again, it is not a new thing that has happened.

What is new, is you experiencing it for the first time so 'up close'. What does that change?

Nothing really when it comes to M itself, because the migraines you have are the very same you had all those years
while you were told all along you are drifting out of consciousness during the episodes.
So, the migraines itself are the very same in character as they were.

I suppose it was probably the presence of your family that made a huge difference for you
as I am sure you felt safe having these "drift-outs" knowing they are there, able to take care of things should anything happen.

So, naturally, I would suppose what rattles you most in this whole thing, is probably the inability to act immediately during
the moments of unconsciousness.
Let's analyze it- what happened today honey, you merely wasn't able to respond to your friend texting right away.
Most likely, nothing terrible has happened, I hope, because of your being sick at the moment.

Suppose that this happens again - you will drift out of consciousness and you will be alone again. What are the chances that this will happen - you being alone? Also, I suppose the text is very low sound comparing to say, an alarm clock - being a deaf person,
I always have to find ways to increase volume on everything - would that work with you? is there a way to increase the volume on your cell? make it vibrate somehow sufficiently, like a space rocket maybe?

That's just right off my head sweetie, trying to help you deal with it.
Other than these practical musings. I was wondering what is your doctor saying about this loss of consciousness? is there any remedy for this affliction? if not, let's just concentrate on finding something practical that would work, from finding the loudest alarm clock that will wake you up for work infallibly to the trained medi-dog that will lick you up to open wide eyed ?

with hugs

Risa

JM,

i know this is tough, but you gotta bring this up to the neuro. easier said than done, but.....it's gotta be done.

I appreciate your responses and support.............my docs know about the loss of consciousness and it is just part of my migraine experience. I am just having trouble with my reality slapping me in the face this week and I am grateful for the opportunity to vent.

You are right - this symptom is not something new and it is scary to have my migraines when I am home alone.............I probably should have called someone to let them know but there is also that part of me that thinks I should be more stoic and should be able to go it alone!

I have a pretty loud tone for my text but the fading out is not like sleeping.............no matter how loud it was I would not hear it when my brain shuts down. I have always had stroke-like symptoms with my migraines but for some reason this week they are getting to me.

Porsche Fan - What should I bring up to my neuro? My frustration? I haven't found many docs too sympathetic to the emotional fall-out of my migraines!

jm,

very tough question to answer. of course, alert the neuro if this is new stuff in case it's a sign of new problems. outside of that, neuros are not very supportive with long term pain and disease--well, some are but i haven't found a migraine neuro that really gives 2 shakes.

all i can say is from my experience, with my sum of problems, is try and find the best way for yourself to deal and keep going forward. yes you are going to have bad days, and you are going to have horrible days. but some may be better than others--so take them as you can.

i try to find things that hold my interest and try new things here and there. i'm finding exercise, despite causing discomfort, is a necessity. the worst thing that a person can do is just go into bunker mentalilty, IMO.

i have my bad days, and i do go into the bunker mode--but i get out of it too.

everyone has their own battles and i know its tough, but...........

best wishes,
pf

((JM)) Understanding how difficult these things are.
Cindy

Smiled when I read about the bunker mentality.............hid out yesterday and going to do the same tomorrow. Talked to my family doc today and he thinks some of the problems I have been having the last few days (including the hyper-anxiety reaction to not hearing the text message) has been due to the beta blocker I was trying. I am very bad at cutting myself slack and think I should be able to handle the migraines and have a "normal" life like everyone else.........just hard to face reality sometimes and again I so appreciate the responses. L

I am very bad at cutting myself slack and think I should be able to handle the migraines and have a "normal" life like everyone else

Oh, no nononono, sweetie, you are being too hard on yourself!

JM, we all tend to do that to ourselves - demand to be 100% functional while suffering from truly severe, disabling disease.

Please, please realize that the Migraine you have is no simple matter and you have every right to not to hear/reply to every text,
not to get up every morning on time, to cancel the event planned in advance because you got severe M episode,
in other words- not be responsive every time something is expected from you.

You have a very legitimate reason for this- disabling disease -Migraine.

And sooner or later situations arise that you are in this alone. This IS very scary, I agree.
Steps must be taken to protect your safety. For example, perhaps never bathe, always shower, etc.

But to expect to be always "on call", available, and deny yourself the right to be disabled as you simply ARE at times -
why I think that is being unfair to yourself, sweetheart.
Do allow yourself to be as sick as you truly are, and let others to take care of you whenever you need this, please JM.

Risa

Just wanted to pipe in and let you know I am thinking of you. Hang in there JM!

How are you doing, JM?

Have you somewhat get used to the idea that perhaps sometimes your M episode may render you out of control
(wow, you are a wild woman, girl ! ) and this is , in fact, is quite okay?

Once again, may I gently remind you we all have, and you too, a legitimate reason to not be able function 100%
at all times, and it's fine. So, please do cut your self some slack if you already didn't :]

hugs
Risa

Thank you for checking back in..............this is (and always has been!) a very slow learning process for me. I continue to try daily to accept that I will have to relinquish control of my mind and body to these migraines - I had a rough one the other night when I was out for 90 minutes and those really throw not only me but also my husband but when it was over and I felt like talking I did get a chance to vent which is always nice even if there are a lot of tears!

I was skyping with my daughter (who is 24) this afternoon and she said something that made me feel better...............her doc recently found nodules on her thyroid and she also suffers from migraines and a nerve in her foot is causing her a great deal of pain. I asked her how she was coping with all her health issues and she said that she is doing okay and that it doesn't get to her because she grew up watching me deal with my medical problems and not letting them stop me from having a life.

Thanks again for all the responses and support.........L

JM..sorry, that you suffer from this as well. When my body gets in extreme pain..thats how my body deals with it..losing conciousness/fainting....this happened in Costco..a little embarrasing..when I had a crowd of people leaning over and watching me...has happened with the migraines, acute renal failure, endometriosis..

You should be checked about by your neuro..you will be checked for epilepsy..with electrotrudes glued to your head..and monitored with video..not painful..just annoying.

thinking of you...please be careful..do you come around on your own? Or does your hubby do something? Smelling Salts/amonia..sorry, head is sore spelling is gone at the moment.

Awwww, I bet hearing that from your daughter felt really, really good!

One of our daughters was blanking out like that and was diagnosed with a petit mal seizure. You might want to look into it. She also gets migraines though they are not related.

I appreciate the concern...............I have been checked, double-checked and triple-checked. This is just one of my migraine symptoms - 30 years ago when they first started I would just hit the floor hard - felt like someone had pushed me from behind. Now they are not as violent but still annoying.