[AynaDee]

Hello all.
Thank you for taking the time to help me out.

I was diagnosed with Multiple Sclerosis in 2009. I am now 25 and have been having what I refer to as 'episodes' in my sleep and none of the MS patients can relate to what I am experiencing so I am not quite sure if it is MS.

I told my PCP about these episodes, he believed them to be sleep apnea and sent me off for testing. Not sleep apnea.

These episodes seem to always happen when I am in an exacerbation with my MS.. Anyways.. this is what happens, if I may get your advice, it would be greatly appreciated...

This is how my boyfriend explains it to me as he is awake when it happens..

I fall asleep, within 15 minutes of falling asleep, I shoot straight out of bed in terror. I am disoriented, I don't ever know whats going on for a few minutes. My heart will feel like its going to explode. I will be sweating. I have even ran into the bathroom once and looked at my eyes (because everytime these episodes happen my eyes feel very bizarre) and my left pupil was tiny and the right was huge. I have this feeling like I am dying on the inside. After dealing with all of this for about 3-5 minutes I burst into a hysterical laughter (this experience is TERRIFYING and FAR FROM funny) that I cannot control. My face will even feel funny. After I have calmed down and go back to sleep the same thing will happen 2-5 more times in that night.. Taking me to the point of being scared to go back to sleep.

The following day I feel completely drained. These episodes are so much on my body that I feel like its taking years off of my life.

I have mentioned this in the MS forum and one person told me I could possibly be having seizures in my sleep.

So here I am.

If any of you have any idea of what these could be, I would appreciate it. My PCP seems to shrug it off. This, to me, is not a shrug-off-able thing.

thanks for taking the time to read this/help me out

[Porkette]

Hi AynaDee,

Welcome to the forum! I'm sorry to hear that you had a sz. but it has been proven that in some cases of MS it can lead to sz. for people. The reason I know this is because I have an aunt who had MS and she told me all about it.
The type of sz. you are possibly having sounds like a myoclonic sz. this type of sz. happens when a person first goes to bed or when the get up in the morning. I had this problem for awhile and then my Dr. put me on Vimpat and it stopped this type of sz.
My advice to you is to see an Epileptologist at an Epilesy Center. This Dr. specializes and Epilepsy as well as other neurology problems and they have helped me more than any other neuro I've seen in 40 yrs. of sz. If you can start taking vitamin B12 1000 mcg. once a day this will help reduce you sz. and it may help your MS because it calms the nerves. Here's wishing you well and May God Bless You!

Sue

[AynaDee]

Thank you so much for your response Sue! I appreciate it greatly! I will most definitely try to find someone to be seen by.

I dont have these episodes every night... But any time I go into an ms flare I am guaranteed at least one horrible night of these..

Are they able to diagnose without having an episode being monitored?

[Porkette]

Hi AynaDee,

You will probably have to have an e.e.g.done or an MRI to find out if you are having sz. and if there's a contection between your MS and the epilepsy.

I want you to start keeping track of your sz. get a calendar and write down any time you have a sz. write down what time the sz. happened along with a discription of the sz. buy doing this the Dr. may see a pattern in your sz. as to what time of the day/night they happen and what days of the month they happen. Also take note of the weather often a low pressure in the weather will trigger sz. and more MS pain do to the barametric pressure and the weight of the air. This in turn effects a persons hormones and kidneys which in turn can trigger sz. for some people. I have many more sz. in the fall and winter than the spring and summer do to the temperature and less seritonin in the air.
I wish you only the best and May God Bless You!

Sue

[Darlene]

AynaDee,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. You will find out we are supportive and relaxing place.

Looks as though Sue has given you some great guidelines to go by.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

[AynaDee]

thank you!

I am waiting to get in with a new ms specialist. Hoping to get a new MRI as I have not had one since 2009. I cant wait to meet he or she, hoping to find some answer.

I appreciate the advice and guidance

Lovely to meet ya's!