MS & Seizures

Seizures? What the heck do you mean… seizures? That’s way worse than MS!!”

That was my reaction when I was told I had had a seizure, and that a small percentage of people with Multiple Sclerosis develop seizures over the course of their disease. Lucky me!! (NOT.) I have since been confirmed as having a seizure disorder, likely due to the placement of an a-typical lesion over my left temporal lobe.

Funnily enough, I figured “OK – MS I can handle. But this seizure stuff? That’s way too scary for me!” Seizures meant a loss of freedom, stigma, fear. MS meant change, for sure – but not as “in your face” dramatic! MS also did not come with an automatic “no driving” policy, like having seizure often does. In my case, since I have no warning and suffer from clonic-tonic seizures (Grand Mals), I gave in my driver’s licence knowing that there is a high chance I will never get it back. I had accepted the fact that I had MS, and the course it was likely going to take over my lifetime. However, in none of my visualizing had I ever imagined myself without the ability to drive. That was a shocker, to say the least!

The hardest thing I find to deal with, when comparing seizures to MS, is the stigma. People with chronic illness face stigma of some sort all over the globe, especially those of us with “invisible” diseases. People with MS can face the stigma of people seeing them as “always sick”; disabled so not “able”; and so forth. People with seizures – they can face the same things, but the one thing that struck me the hardest was the fear. People can be afraid of those of us with seizures – afraid because they don’t want to be around if one happens. It can be scary to witness.

Personally, I have found that dealing with the reactions of people to knowing I have seizures can be bigger than the seizures themselves! That’s why a strong support system is critical when dealing with a seizure disorder. I have also started a goal of raising awareness of the stigma against seizures by getting back into synchronized swimming and facing the stigma and fear head on. I plan to be competing again by my 50th birthday…which is not too far off! You can follow my wonky journey at Carolyne’s Facebook Page – Seizure Disorders: Swimming Against Stigma.

There are local Epilepsy & Seizure Disorder groups that can help you if you are dealing with seizures. (Simply google “seizures” to find help near you.)

Seizure & Epilepsy Links

Carolyne’s Coping & Awareness Blogs:

17 thoughts on “MS & Seizures

  1. Wow thanks for all the info, I’ve been living with MS dine Jan. 06,2012, and it’s been some crazy. No seizures but I have feeling like something is crawling all over me starting with my hands and at times they’re very hard to control.. please keep the info coming I really enjoy the input.

  2. Pingback: And they said it would never happen! | MS Means…Living and Laughing with Multiple Sclerosis

  3. I’m a 45 yr old female recently diagonised with MS in Nov. 2012. I had a seizure in Feb of 2012, which I feel was the onset of my first MS flair up but failed to get Diagonsised until Nov. since then I have had 3 more seizures! The last one this week at the airport!! I refuse to give up my love for travel as long as the legs allow me too. I work in the medical field and I’m considering the possibility of filing for Disabilty. This scares me more than the MS or Seziures. I’m single and the thought of being without insurance while waiting to be on gov. Coverage is scary. My Dr. Is increasing my seziure med and I pray I have success with the increase.

  4. Oh boy! I’ve had MS since I was 30 and had to give up work at 40 due to not being able to drive anymore or do my job very well. I had my first seizure on Wednesday, 3rd April 2013, didn’t know about them for MS before that. I was told that I would probably just have one, but after reading your comments I think I will keep aware for another. It’s a disgrace it is soooo hard to get the pension. You cannot pretend MRI scans. I get really peeved at the Social Security Office when the majority of people are able bodied, but just do not want to work. I know, given a choice, I would much rather hang out at work than the dole office.

  5. thank Giod for some honesty which is AMPLY PROVIDED within your web-site !!

    THANK YOU

    Susanmary
    – Australia – 50.11yrs

  6. Reading this blog has been… an eye opener. This all started just at a year ago for me (in October) and with NOT having insurance, and NOT having a FULL diagnosis yet I have turned to the internet for answers. I have absense seizures and migraines. Mine are.. about 1-3 a month usually like clock work. I take Keppra as well, the other medications made me very sick. With that I have had THREE lumbur punctures from Drs who have the ‘suspicion’ that this is MS. Still no answers. I would LOVE to talk to you about your experience, how to apply for disability, and how to.. regain control of my life. So many questions and no answers.

    • I am so sorry you are having such a rough go. Unfortunately, many of us experience the frustration that comes with trying to get a firm diagnosis. And the frustration of getting a diagnosis, then getting a changed diagnosis, and back again. Be your own best advocate by researching as much as you can, and monitoring your own body…only YOU know YOU best…and only YOU can be the full authority on YOU. Hugs.

  7. Well, I am newly diagnosed with MS. I am still learning about it and how to cope with this condition. Sometimes I am ready to give it all up. I am only 34 and have lots of flair ups. I also have seizures. It seems like I have them regularly about every 3 months. I take Keppra and with each seizure, the doctor increases my dosage. At this point, I don’t know what the future holds. I am seriously questioning my ability to provide an income and a life worth living. Kinda a bleak outlook.

    • I am so sorry for the struggles you are currently facing. I understand that your diagnosis of MS is scary – and seizures makes it more so. I know this is tough and very scary. I wish I could say it stops being so – but I can’t. I can tell you that with time, you will find a way to cope somehow – keep being strong and keep being your own best advocate! You CAN make a life worth living…and you CAN provide an income – it just takes some initiative, persistence (stubborn persistence), self-compassion and time. You are the only person who knows you best – and you have the inner resources to learn to manage the ups and downs of this. You are not alone!! Don’t ever give up!!

  8. I was diagnosied last year with MS , I am 43 yrs old. I have multiple seziures and they seem to be getting worse , have been on several meds for them and doesnt seem to stop them. Im very scared , have applied for disability ,but is taking forever and they treat me like Im just trying to get a free ride , so not true , would much rather be working and plus make more money working!!!

    • I know this is tough and very scary. I wish I could say it stops being so – but I can’t. I can tell you that with time, you will find a way to cope somehow – keep being strong and keep being your own best advocate! You are the only person who knows you best – and you have the inner resources to learn to manage the ups and downs of this. You are not alone!! Hugs!!

    • Also – there is indeed a big frustration in that “free ride” stigma. If you try to keep working, you are seen as too “able”. If you go off on disabilty – you are seen as trying to take the system for a free ride. I wish this could be rectified – because those of us who need the help to keep working and living as normal a life as possible are slipping through the cracks! We have to fend for ourselves – or feel like we are “criminals” constantly defending our disabilty status.

  9. What meds do you take for the seizures?

    I carry with me Diastat (valium syringe suppository) 20mg for my mom. She just started having grand mals 2 years ago and she has had MS for 15 years–she is 65.

    As far as the antiseizure meds none them control the seizures completely. After each one she has a bad MS exacerbation(probably comes before grand mal),

    I also found an expert in MS and seizures at Mayo, Dr. Moises Rodriguez, you can check him out in pubmed–my mom is too fragile to travel to Minnesota.
    God Bless.

    • Thanks for this info. I myself currently am on Keppra – tried others but side effects were worse than the seizures! Best wishes to you and your mom….

  10. I have been living with MS since Jan. 2009 I am now 37 and now I am also having seizures and I felt the same way. What the heck, I have no license and no hope of getting them back either and it is very scary.

    • It is scary. It is a loss that you don’t see coming. Grieving it can be an up-down thing. But thankfully – it’s not the end of the world, eh?! Adapting is a challenge – but it can be done!
      Hang in there!

  11. I am now 65 yrs. old and have had M.S. since I was 20 or so. And a couple of yrs ago I had two seizure!!! what in the heck? I just pray I never have another one.

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