Newbie- Tonic Clonic Cluster Seizures with consciousnesses???

[SassySarah]

So without writing a book - Hello! A year ago, two days after multiple nerve block for a dysfunctional sacroiliac joint as well as numerous degenerative discs in the lumbar region I began having severe tonic clonic cluster seizures while maintaining conciousness the majority of the time. After 4.5 months in a leading hospital they reduced the events from multiple times per day to on average every 3 days. I have taken klonopin and robaxin since as well as IM ativan. Once injected the seizure lasts 45-60 minutes. Depakote and Topamax were unsuccessful. I have been accused of psycho-somatic disorder and a seizure was allowed to continue 8 hrs. During the hospitalization I started to go into heart failure multiple times resulting in codes called because of the stress of the seizures on my body and heart. I have had a few absence seizures. Since beginning tegretol I have reduced seizures to about once a month however still struggling with auras excessively. I have been unable to drive or work. Has anyone had similar experience? Oh EEG is normal and MRI only shows an inactive pituitary adenoma. I feel so alone and like such a freak! Anyone similar?

[wiggles1]

I'm 47 year old, currently take epilim, lacosamide, lamictal, topamax and tegretol. I believe my seizures have all these years been wrongly diagnosed and I believe my seizures are brought on by stress/anxiety/worry/depression. I tend to spend most of my life in a stressed/anxious state but upon any time of relaxation I have a seizure and often end up in hospital. Since my husband having extra worries lately I have had 3 grand mal seizures within about 6 days. I really believe all could be resolved if my drugs could be changed to anti-anxiety drugs and I would not walk around so dazed out on these current drugs. hope you can find some help SassySarah

[SassySarah]

Hospital time was 4.5 weeks

[wiggles1]

When I have my large seizures I am sometimes in overnight sometimes 2 days. My last ones were all overnight stays and the hospital messed up my drugs when i was in there giving it 4 hours late and not the entire dose on my last stay. Hospitals in South Australia can be bad.

[valeriedl]

I'll have maybe one tonic clonic a year, if even that often. All the others are usually partial seizures and 9 times out of 10 I black out during them. One time I had a tonic clonic that I didn't loose consciousnesses. My family laid me on the ground. I knew everything that everyone was saying to me but I couldn't move or talk back no matter how hard I tried. They ended up calling 911 and I went to the ER in an ambulance and I remember all of that. Now I know what it's like for people to see me have a seizure and what they deal with. It was so scary I hope it never happens again.

[SassySarah]

I can talk most of the time, I have had it where I can't a few times
Being awake is torture! Do yours require intervention to stop?

[Nakamova]

Hi Sassysarah, just wanted to welcome you to the site, and encourage you to be persistent in getting answers -- some members have found that a new doctor, or a new treatment makes all the difference. Do you keep a seizure journal? Sometimes you can identify patterns or triggers that way.

Best,
Nakamova

[SassySarah]

Thanks Nakamova! I have switched multiple drs and finally have a good one I think. I record everything from auras, food, meds, activity's, even temp extremes. Have found being "different " is a nightmare but I am embracing it and doing what I can!

Glad to find this!

[wiggles1]

I in desperation for help decided to get a female neuroiigist who would understand/have more patience for a female patient. She seems good so far

[wiggles1]

Nakamova..I also started keeping a seizure diary but only about 6 months ago when my seizure level increased drastically. I have had personal problems causing me stress to heightened degrees & every time this stress causing person re-enters my and my husbands lives it feels like an attack from multiple knives and I seizure out upon this person exiting our lives again.

[Nakamova]

Since you've identified a trigger, it would be great to remove it from your life, or at least mitigate its effects. I assume that you can't avoid the person who is stressing you out. Have you talked to a therapist or some other counselor about strategies that might help make the encounters less stressful? Sometimes writing about something stressful --- especially beforehand when you may be anticipating the worst -- can help reduce the stress overall. Meditation/breathing exercises can also help. And don't forget to plan a reward for yourself after the encounter is over. Knowing that after it ends you will have or do something pleasant can make it easier to bear during.

[wiggles1]

Nakamova,.. the person(s) at various times have been mother, I got her out of my life. She nearly broke up my marriage with all her psychological games that she continued playing on myself and my husband. Now there is a non-related person in our lives who is not very nice it may take another month to get rid of or get him out of our lives. Once this happens though, I want to see a psychiatrist discuss some of my anxiety driven problems and seizures caused by anxiety because maybe my epilepsy drugs can then decrease and i can take an anti-anxiety drug.