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Hughes Syndrome APS Forum

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Recently suffering with frequent seizures

Bubbalove1 profile image

does anyone else have this problem? If so what meds are helping you? I was diagnosed w APS when I was 15 after having a small stroke, I’ve had a few DVT’s and PE’e and late term losses since. I had my first seizure in my early 20s and then only had them every couple of years. Now at 36 in 2022 I’ve had at least 16 seizures already in 2022.. I’m on Topamax Trileptal Lamictal Gabapentin and I’m still having them with or without the meds. Drs are calling them “break through” seizures… I think it’s just to make me feel better about it but it doesn’t at all…in late February I had a REALLY BAD seizure at Home Depot and my while on the floor shaking uncontrollably my foot folded underneath me and I started smashing it into a shelf. I broke it in 5 places 4 metatarsals and a chipped bone. Having them so often has really stripped me of my independence and my privacy ( I live with my parents) and my parents are the ones who have had to deal with it, frankly I’m pretty sure that watching me having seizure after seizure has scared the shit out of them.. especially after it caused me to break my foot. My brother recently bought me an Apple Watch hoping it might warn us, do any of you use the Apple Watch? What apps are you using/ have you found to be the most helpful. I’m at my wits end at this point…. Seizures suck so does APS.. I’ve given too much of my life to the hospital..

14 Replies
KellyInTexas profile image
KellyInTexasAdministrator

Can you please tell me type? When was last EEG? Locus/ Loci?

For me-

Methscopolomine Bromide twice daily . 5 mg -am and pm. ( for gastro paresis and added benefit helps slow brain firing.)

Lamictal- very high dose but daises Stevens Johnson- switched to Dilantin.

Still had break through- switched to Vimpat. Specific to temporal lobe epilepsy

Migraine became clusters-

Switched to split dose Topirimate- 300 mg total - so 150am and 150 pm.

Then diagnosed was APS.

Break through all but stopped with warfarin.

I’m pretty sure It’s a combination of different types. Last week I had a complex partial seizure with secondary generalization? Usually tonic-clonic, sometimes absent.. I’m waiting on most recent EEG results from a few I had this past Friday.. topamax is 100am 200pm trileptal is 750am/750pm Lamictal is 300 am /300pm and gaba is 300 3x a day.. I almost ALWAYS lose consciousness and bite my tongue.. if I’m lucky and I DO have an aura I usually don’t get enough time to tell anyone.. I’m not sure but I think there calling it temporal lobe epilepsy? Since the seizures on Friday my memory is…. Terrible … I can hardly remember what I ate this morning… and have noticed I’ve had issues with saying words that have never been an issue for me. I just feel like things are getting worse

MaryF profile image
MaryFAdministrator in reply to Bubbalove1

Do you have a designated Hughes Syndrome/APS specialist, as they certainly need to be in the picture, you need an urgent assessment so that you can be properly looked at with regard to all of this. I am so sorry you are having such a difficult time, I have had to fight for my care recently due to brain issues and it has paid off. MaryF

I’ve just got an Apple Watch to help if I have a fall. Funnily enough I had one the day it arrived! I think it was fate telling me I’d done the right thing! Just got to learn how to use it now.

Bubbalove1 profile image
Bubbalove1 in reply to Star13

I’ve had quite a few seizures with the Watch on my wrist and it hasn’t given any type of warning or notification so I have an apt with apple to make sure that I have it set up properly, apparently they have certain specialist who only work with the health apps and watches so hopefully they can point me in the right direction with it lol

My son has Epilepsy since he was born. He has a genetic clotting disorder( not APS) which when we found the right medication to control the Clotting his seizures slowed down. He takes 300 mg Lamictal in am and 450 mg at night. He takes Pradaxa to prevent DVTs and PEs. I believe females have a much harder time controlling seizures. There are epilepsy centers that keep you for a period of time to help figure out what best controls your seizures. I do not know if that is an option for you. Also, please make sure you see an APS specialist that will work with your neurologist.

If you are on blood thinners then you need protection from falls. My son has had so many injuries from falls that further complicated the seizure aftermath. He is 37. He lives with my husband and I.

I know you are not looking for sympathy but you have mine. Do everything in your power to find the best medical care. Learn everything you can about your seizures and APS. ❤️

I am so sorry you are going through this. I had seizures before my diagnosis with APS. Ee are not sure if they were the direct result of APS, and my seizures were partial, temporal lobe consisting of ' zone out' episodes when I would stop speaking, and just zone out. I would carry no memories of those episodes. It was friends who told me I would suddenly hang up the phone in the middle of a conversation, or just turn and walk away -leading friends to wonder if they had said something that offended me. The seizures went away and today I wonder if my then-undiagnosed gluten sensitivity was an issue.

I’m so sorry to hear you are struggling with these seizures. I do have one or two a year, but I think the warfarin is what’s keeping things under control for the most part. The seizure meds made me mentally unstable or doped up, so I’m only on warfarin now. Maybe have your warfarin increased? 🤷‍♀️I wish for you, a solution very soon! 🙏🏻🙏🏻

Bubbalove1 profile image
Bubbalove1 in reply to hihannula

I’m actually already on a fairly high dose.. I had my first clot when I was 15 , I take 15mg rotating with 12 1/2mg daily

Sorry to hear that the warfarin isn’t helping. 😔I’ll pray the Doctor's can get to the bottom of these seizures 🙏🏻🙏🏻

Hope you have found a Specialist of APS. Is he or she giving you Warfarin? I wonder what INR you are staying on and what antibodies you were positive to when you were diagnosed. The INR is very important and that it is high enough and that you are able to keep it stable all the time.When we have APS our blood is too sticky and the most important thing is to make it thinner by anticoagulation ordered by a Specialist who understands this.

Hi so sorry that you are having such a rotten time and do hope you get the neurologist and APS specialist support you need. My hubby has very similar description of seizures as you. Diagnosed with Temporal lobe epilepsy takes Briviact (brivaracetam) and Epilim (although not suitable for females!!)It seems that epilepsy meds is specific to you and so it's really important that you see neurology regularly if seizures are not being controlled. If you have a specialist nurse give them a call and explain how they're not under control. Glad you are on warfarin for your APS but as been said really important they get seizures under control as the risk of injury. Do hope you are recovering and getting the support you need

Have you tried Carbamezapine generic for Tegretol?

hope you find the right medication to control your seizures. It’s so frustrating to not get something to help you. God bless

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