Newbie- Tonic Clonic Cluster Seizures with consciousnesses???

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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?
 
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
 
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.
 
I'll have maybe one TC 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 TC 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.
 
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?
 
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
 
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!
 
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
 
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.
 
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.
 
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.
 
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