Help with MS seizures please!
So my dad has had MS for nearly 30 years (he is 60yrs old now) and has managed to live quite comfortably given the diagnosis and comparison to others with the same illness. This we are so thankful for.
But in the last 2 weeks he has had some major developments.
In just 2 weeks he has lost almost all the ability to walk and suffers from multiple seizures a day. The loss of walking ability isn’t the issue but the seizures are unbearable for him. When they occur his limbs all cramp up, his hands are clawed and his jaw clenched shut. With an overwhelming burning sensation like he’s on fire. (He always remains conscious) The only trigger he can find is when he stands up straight so he now tries to remain in a somewhat hunched position to try to avoid bringing them on.
He spent a week in hospital and was put on steroids but the doctors are struggling to address the seizures. We are desperately trying to find any answers to a form of treatment that can help manage these seizures. Anyone who has experienced this we would greatly appreciate if you could reach out and share any information that may help us. Thankyou!
Hi,
!
First off, I am so sorry you dad is experiencing this onset of scary symptoms. I kmow it must be incredibly stressful for him and you!
Seizures are not one of the most common MS symptoms and they could be related to something else entirely. That said, up to 40% of people with MS have said they have experienced a seizure during an MS flares. Two of our former health leaders have dealt with seizures and have written about their experiences on this site. Cathy shared her experience with seizures here -- https://multiplesclerosis.net/living-with-ms/manage-fairly-uncommon-partial-complex-seizures and Dianne shares about her experience with both grand mal and focal seizures here -- https://multiplesclerosis.net/living-with-ms/seizures. The good news? There are medications that can help manage seizures. I do hope doctors are able to find the right medication, if needed, to get your dad's seizures under control. Steroids can definitely help with pain and inflammation, but I don't know if they are a long term solution for seizures. Both Cathy and Dianne share what medications they used to help with their seizures in the articles I shared with you.
I love that you are supporting and advocating for your dad. I know it's scary to see our parents not in control and you are doing a great things stepping in the gap to help him. I do hope some answers are found very soon and that your dad can get on the road to recovery very, very soon.
Best, Erin, Team Member.thankyou very much for your response! I have documented all the medications I think he may be eligible for, thanks to this forum site and my own research. but we have to wait and see what the neurologist decides. Hopefully we get a good outcome and my dad can get some relief. I will continue to check this space for any further info I can find.
Thanks again! Means a lot!
Hi,
!
I just wanted to check in and see how your dad was doing. I hope doctors have been able to get to the bottom of what's going on and that your dad is experiencing less (or NO) seizures. How's his walking been?
Best, Erin, Team Member.Hey!
Firstly, thanks so much for checking in, appreciate how thoughtful you are!
So the update on my dad is overall good news so far I’d say. He has been having lots of scans, X-rays, ect on his spine and brain and everywhere they deem necessary. And the doctors are in the process of compiling all the results. He has an appointment in December where they will explain what they have seen and found from all the research that’s been done into his current situation regarding his MS progression. So he is very keen to hear what they have to say.
Now most importantly, as for the seizures, this might sound a bit outside the box. So as you know they were unbearable for him and needed help urgently. He was recommended and given a small jar of oil which from what he tells me is a mix of hemp, coconut oil and rosemary. He puts a drop or 2 under his tongue each day and he hasn’t had a seizure since! And it’s been months now! Simply amazing.
He is still able to walk at this stage, but only just. And in very small amounts. But he is not too worried about that. Just excited to hear some results in December and praying these seizures continue to stay away.
Thanks again so much for reaching out. Hope maybe some of this information even helps others experiencing something similar., thanks for taking the time to offer that update. I am so glad things are going in the right direction for you dad! That's good news and I hope that December appointment is fruitful and that your dad gets some clear answers and viable treatment options. And, hey, if the oil is bringing him some relief from the seizures, then that's great, too.
Thanks again for taking the time to share and I'll keep my fingers crossed about that appointment (well, not literally. That's a long time to keep fingers crossed! 😉 ).
Best, Erin, Team Member.
