When do you worry about partials?

[girlwithadog]

I've been medicated since July. I haven't lost consciousness since I went on medication. That's a win I suppose (although I likely wouldn't anyways since I only do in the summers). I'm still having partials like always, no change there and have felt a couple (literally) times that I was going to have a TC but didn't. It stopped and went away. I haven't told my neuro.

I have a habit of calling my partial seizures just that.. Partial.

Like they aren't actual seizures. But the doctors say they are, that when I have an aura and feel like I'm about to have a TC, but it goes away instead, that it was a seizure.

That when I space out in that funny head foggy pressurized way it's a seizure. When the walls breathe and the road flows like water that I'm having a seizure.

But for some reason if I stay conscious I shrug it off as a "minisode" and move on. It doesn't leave the headache, the muscle ache, the vomiting or confusion so it's even forgotten about when I see the doctor.

My medication(Tegredol) is making me so fuzzy. I got a promotion in January and I'm terrible at my job. My once sharp mind is in such a haze. My bosses can tell and I think my job is on the line right now. I don't want it to get worse by increasing my dosage.


Do you worry about your minisodes, when you are medicated are all episodes, mini and major, supposed to go away? Are mini really as mini as they feel or are they also as significant as a generalized seizure?

I retain consciousness just not fully. I am aware just not in tune if that makes sense.

ugh

 

[Cint]

Seizures are seizures, whether they are partial or generalized. It's just that a "simple" partial or a "complex" partial isn't as foreboding as a "generalized" seizure, yet. If they aren't kept at bay, they could become an overwhelming major seizure, at least that is what happens for me.

 

[girlwithadog]

Seizures are seizures, whether they are partial or generalized. It's just that a "simple" partial or a "complex" partial isn't as foreboding as a "generalized" seizure, yet. If they aren't kept at bay, they could become an overwhelming major seizure, at least that is what happens for me.

According to my doctor my seizures start in one area and sometimes spread causing them to be generalized seizures. I'm not sure if this is what happens in all generalized seizures or if it means that they are more likely to come if I have frequent complex partials. I just have always known complex seizures as my normal life, always being told they were one thing or another but nothing to be worried about so idk if now all of a sudden they should raise flags, if this medication is supposed to stop the complex or just the generalized.

If it's supposed to stop the complex it's not working.

 

[Porkette]

Hi girlwithdog,

I also have simple partial (aura) seizures that will often lead into a complex partial seizure or absence seizure. Years ago my neuro taught me that the moment the simple partial seizure started to tighten up all the muscles in my body and make my hands into tight fists by doing this it would stop the seizure and take my word it has stopped many seizures for me over they yrs.
You may want to ask your neuro to put you on vimpat. I took tegretol for yrs. but it didn't work that good but after I was put on vimpat the complex partial seizures have decreased greatly and so have the absence seizure. My Dr. also put me on medical marijuana (CBD oil) and that has worked great.
If you notice your complex partial seizures increasing a lot more than usual let your neuro know because it may be the tegretol isn't working for you anymore. I wish you only the best of luck and May God Bless You!

Sue

 

[Nakamova]

Generally, if seizures are left untreated they are more likely to progress over time. girlwithadog, do you keep a seizure journal? It might help give you a sense of whether your partials are changing in frequency duration or kind, which as Sue notes would be a good reason to get in touch with your neuro. Aside from that, anti-seizure meds are judged on how well they control your seizures and and tolerable their side effects are. It sounds like the tegretol isn't entirely successful in either area, especially if it is making you so foggy that you are in danger of losing your job. Let your neuro of your concern -- maybe it's time to try a different med altogether, rather than upping the dose of something that you already find problematic.

 

[girlwithadog]

Generally, if seizures are left untreated they are more likely to progress over time. girlwithadog, do you keep a seizure journal? It might help give you a sense of whether your partials are changing in frequency duration or kind, which as Sue notes would be a good reason to get in touch with your neuro. Aside from that, anti-seizure meds are judged on how well they control your seizures and and tolerable their side effects are. It sounds like the tegretol isn't entirely successful in either area, especially if it is making you so foggy that you are in danger of losing your job. Let your neuro of your concern -- maybe it's time to try a different med altogether, rather than upping the dose of something that you already find problematic.

I never considered tracking my partials with a seizure journal, the last time I looked into a seizure journal it seemed to target generalized seizures so I just kind of pushed it to the side since I don't have those that often.

I have noticed my generalized seizures progressing over time, which is a bit scary but I've been unmedicated most of the time.

They started as just drop episodes or just losing consciousnous and going through motions and repititions (sorry my spelling is so terrible) to now every time I've had one I have the at the minimum a tonic seizure and instead of just one every couple years they are coming in clusters, within a month I'll now have a few. Also I have been having some episodes last 5+ minutes (one lasting likely over 15 but I was alone so I dont know exactly) But like I said, I haven't been medicated for those.

The trouble I have with trying another medication is that A. I dont currently have insurance and B. I've already tried 5 and all but Vimpat caused side effects intolerable (this one was the least noticable apart from Vimpat) but Vimpat is way too expensive, especially without insurance.

But... You gotta do what you gotta do and if I want to keep my job I suppose looking into an alternative medication is my next step. I'll call my neuro office, hopefully she can change my meds without me paying $300 to get in to see her, doubt it though haha

 

[Nakamova]

No insurance that sucks. Even with insurance my co-pay to see my neuro is $100.
I hope you can figure out something that works better. You've probably tried lamotrigine (Lamictal) already, but if you haven't you might give it a shot. It's been easier on my brain than some of the other meds. Aside from that maybe you can look at making changes tweaks in your diet or routine that might at least help reduce the partials? One advantage of keeping a journal is that you can sometimes identify a trigger and then avoid it. So if your partial seizures cluster at a particular time of day or month, or after a certain kind of stress (like fatigue), that may be a clue. Sometimes the trigger can occur the day before, so it can take detective work and trial-and error, which is another way a journal can help. No guarantees, but worth a try if there's nothing else you can afford right now.

 

[girlwithadog]

No insurance that sucks. Even with insurance my co-pay to see my neuro is $100.
I hope you can figure out something that works better. You've probably tried lamotrigine (Lamictal) already, but if you haven't you might give it a shot. It's been easier on my brain than some of the other meds. Aside from that maybe you can look at making changes tweaks in your diet or routine that might at least help reduce the partials? One advantage of keeping a journal is that you can sometimes identify a trigger and then avoid it. So if your partial seizures cluster at a particular time of day or month, or after a certain kind of stress (like fatigue), that may be a clue. Sometimes the trigger can occur the day before, so it can take detective work and trial-and error, which is another way a journal can help. No guarantees, but worth a try if there's nothing else you can afford right now.

That is a good idea, I am going to find a good app (suggestions welcome!)

I have noticed a few triggers so far, and some are harder to avoid (sunlight-bright, summer time, coffee, computer screens) I live in the south, am addicted to coffee, and work on a computer so it makes sense that the medication doesn't work that well ha!

I called my neuro and am hoping when she calls back that she can change my meds over the phone. I haven't tried Lamictal yet. Im hoping she will give me the Ativan strips as well as Vimpat again, although it may be expensive you cant put a price on safety and I've had more than one seizure last over 5 minutes so...

Hopefully I will be insured soon haha. I had another complex partial today, I could tell it was from the sun light, or maybe I felt that way but it wasn't but once I sat in a spot by the window with the sun beaming in I felt it start. It happens like that some times so I figure the brightness is a trigger. A journal hopefully will help with this. Fingers crossed.

 

[Nakamova]

Do sunglasses or polarized lenses help with your sun sensitivity?

 

[girlwithadog]

Do sunglasses or polarized lenses help with your sun sensitivity?

I've never tried them for helping reduce the trigger. I suppose it wouldn't hurt to give it a try. I wear prescription glasses (I can't do contacts... I hate the way they feel) so maybe I'll just get some of the clip on shades for my glasses. The neurologists office is going to call me today so hopefully we can discuss this via phone until I get insurance again. I told them the problem so fingers crossed

 

[jade05]

I have complex partial seizures but feel there is nothing 'partial' about them. I obviously don't know when I have them but thankfully my husband is usually there when I do. I just freeze and blank out for about 5 minutes. But this isn't the problem. The problem is how I suffer afterwards for about 24 hours until I wake up the following morning. I can't hold a conversation or eat on the day I have them. I have like a migraine all day afterwards. I feel extremely tired and sometimes have to go to bed for about 4 hours as my eyes are going upwards in a tired way if I don't. Like I explained, the after-effects are horrifying and debilitating for me. Has anyone else suffered like this?

 

[seagull]

No point in worrying tend bring it on if I do.i do however dread the aura of panic

 

[girlwithadog]

I have complex partial seizures but feel there is nothing 'partial' about them. I obviously don't know when I have them but thankfully my husband is usually there when I do. I just freeze and blank out for about 5 minutes. But this isn't the problem. The problem is how I suffer afterwards for about 24 hours until I wake up the following morning. I can't hold a conversation or eat on the day I have them. I have like a migraine all day afterwards. I feel extremely tired and sometimes have to go to bed for about 4 hours as my eyes are going upwards in a tired way if I don't. Like I explained, the after-effects are horrifying and debilitating for me. Has anyone else suffered like this?

I get those effects after tonic and or clonic (I have both at the same time, or one or the other) episodes but not complex episodes. I just go back to normal after my complex episodes. I am also left with incredibly sore muscles and the co fusion... I can't figure out how to talk. That's why I have a medical ID bracelet. For the time after if I can't remember how to contact my husband

 

[Sabbo]

Hi. I have both simple & complex partial seizures. I'm currently on 400mg/day of both Topamax and Vimpat, STILL get breakthroughs. My complex partials are really annoying, as I get no auras prior to them.
In fact, I just had 2 complex partials on Wed., about 2 hours apart. My husband saw the first one start, & moved me away from the stove. I only know about the second one because I of a large bruise on the back of my left side hip. I recall getting out of the shower, and then the next thing I knew, I was dressed and downstairs.