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Sharing my experience with rescue medication for seizures
Hi Everyone,
I just want to share my experience with rescue medication, as I believe this could be of help to some of you.
I have refractory focal epilepsy and use rescue medication (nasal spray) based on medical cannabis (with high THC) since August 2020. This medication effectively interrupts my seizures with no side effects. It brings more security and comfort to me and my husband. Before using this medication, I could do very little when having a seizure. When I felt an aura, I called my husband and prayed for the seizure to be brief and mild. This gave us a lot of anxiety! Today, I and my husband can be more proactive when I have a seizure, bringing benefits not only from an emotional point of view but also reducing the risks of neurological damage. With this rescue medication, I feel more secure when leaving home, alone or accompanied. It is like a guardian angel to me that I always have nearby.
Unfortunately, based on my experience, rescue medications are underused here in Brazil. This medication was introduced to me after visiting 5 doctors! Through a vídeo conference organized through an association in the United States, I understood it is not much prescribed in the United States as well. A pitty! Why is that?
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@santosha Connect is a place to share experiences, learn, and support.
Members like @1710dave @dawn_giacabazi @jenfossbru @downsynsz @prichmond @jakedduck1 are active members of this group and you may be able to offer support, or vice versa.
Medical marijuana is growing in legality state to state and being used more and more. May I ask for clarity? The medical marijuana is used as a rescue medication. Would you tell me more about that?
Hi Erika, Good Morning
Sure, a pleasure. This spray med I use is made of medical marijuana with a high concentration of THC. It is produced in Brazil by an NGO called ABRACE. I have tried to send a link with a demonstration of this product, but unfortunately, this was not possible. If you are interested, search for "Beni utilizando o Spray Nasal (THC Abrace) produzido no Brasil" in You Tube. It is a spray that you apply directly in the nostrils. Very practical, easy to use and effective. For sure you have similar products in the United States. If you have any further questions, please feel free to ask them. Kind regards
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1 Reaction@ santosha Thank you for sharing. I am going to ask my neurologist about this nasal spray/ THC. I will be curious to see what he has to say. I have Encephalitis of the Frontal Lobe since 2013. No known cause. You have probably read some of my inputs. My seizures last usually less than a minute. I know I am having one and I know my surroundings and people around me. I will fall if I am up on my feet. In bed I am Okay and can handle the seizure. It starts with my right hand waving then up and down patting the bed. I stare into space like no one is home. afterwards I am tired and take a long nap. I understand that is good and normal for the brain to heel. I will post when neurology gives me an answer or explanation. It may be awhile as I have no appointment yet. Hope you will continue sharing. I will watch for your posts. Regards, boomarang
Hi @boomarang
Today, for some reason I do not understand, I could copy the link showing the demonstration of this nasal spray.
For sure I have read your inputs. But my memory is no longer the same, I can not remember them now. Sorry.
What I have read is that when having a seizure because Temporal Lobe Epilepsy, one does not lose consciousness. Can you remember after the seizure all that happened during the seizure? Does your mind get confused and agitated after the seizure? Do you lose the capacity to speak for a while?
Having Temporal Lobe Epilepsy, I also know my surroundings and people around me when it starts (aura - focal simple partial seizure), but it evolves to a focal complex seizure, I lose much of my consciousness and can not remember what happened during it. I do also stare into space and get absent. Though, my husband says that when he hugs me during a seizure, I hug him back. I do not fall. Those seizures also last less than one minute. When younger, I came back from those seizures immediately as if nothing had happened. This started to change after my forties. Today, coming back to reality and being able to speak again can take up to one hour, depending on the intensity of the seizure. Rest and sleeping are the best ways to recover after a seizure. I do also get very tired after it nowadays.
It is something new to me to know that you may fall during a seizure when you are up on your feet. According to my readings, those with frontal lobe epilepsy do not fall during a seizure. Has it always been like that? You said that your seizures start with your right hand waving. This happened to me just while I was taking AEDs. The doctor at that time said that the waving was on my right hand, because my epilepsy is on the left side of my brain. Now that I am controlling my seizures through medical cannabis, diets, exercising, sleep hygiene, etc., right hand waving disappeared. Did you always had a waving of the right hand or did it start with some medications?
Wishing you still a good week!
Chris (@santosha)
Chris, Santosha, I have a question that I am sure I should know, but do not and can’t get an answer from neuro. If my daughter finds me having a grand mal or I stop convulsions but do not wake up ( breathing just don’t wake up)should she call for help?
Hi @baa
After a seizure, we all get affected. This spray interrupts the seizure. But it does not make you fit like before the seizure.
I am not a doctor, just a person with epilepsy who studies and reads much about epilepsy and learns much through other people. But if I were in such a situation (not waking up after a seizure), my husband would for sure call my epileptologist.
I am sad to hear that your neuro is not answering your question. I know myself how frustrating this can be. Is your neuro an epileptologist? I myself have seen a great difference in treatments by neurologists x epileptologists. Meanwhile, an alternative to have your question answered is to reach the 24/7 line of the Epilepsy Foundation. While I was being treated by neurologists, I had many unanswered questions and contacted this line, always getting attention and an answer from them. This is what I did in those moments. Here is the link: https://www.epilepsy.com/247-helpline
As I have seen someone else with epilepsy saying wisely: learn more about your epilepsy, if you can, and be open to contradiction. It was through learning about my epilepsy and questioning many things that I have found my path and I am smiling again.
"What is not known may be just a question away. Those who do not ask, do not advance." - Valter Hugo Mãe
Feel always free to contact me. It is a great pleasure for me to help other people with epilepsy.
Chris (@santosha)
Chris, as always your words mean much and your advice and opinions are so valuable. Many thanks and bless you!
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2 ReactionsChris @santosha Lots of questions you have. Your memory loss disturbs me. In answer to your questions. I have the blank stare into space. In my home we call it "the thing. Waving of the right hand then slapping it up & down on the bed. I remember after. Not confused/agitated after. Will slur speech during. I know surroundings & people. Usually last less than one minute. Take a long, couple of hours nap after. I did fall the last time luckily on carpet, friend caught me & gently lowered me down, put pillow under head covered me & I slept very well. My first experience with seizure 2013 my whole body would shake. Shoulders, arms, legs would all flail. No control. Hospitalized, many tests & meds. KEPPRA WAS MY WORST EXPERIENCE. I WENT TO A VERY DARK PLACE. Noted on chart DO NOT GIVE KEPPRA. Medication now is, Generic Zonisamide 300mg daily at bedtime. It has worked well for 5+ yrs. I think you are much younger. I am 94 years young. My mind seems very good. I think very positive thoughts. The body has slowed down a bit. I have Afib. + Pacemaker. I am looking forward to more years. I wish you well. Sorry for the delay. Family, Great, Great Grandchildren 2yrs. & 5yrs. visiting for first time. After reading this you may go back & read my other similar post. Thank you for reaching out. Always be curious. Ask any time you have questions.
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1 ReactionHi @boomarang
Thank you for sharing this information with me and being so open. Wow, I am astonished by your age and the clear mind you have. Congratulations and wishing you to continue this way. I am 53 years old, turning 54 in some months.
Reading my previous post, I just saw I have made a confusion, writing temporal lobe epilepsy instead of frontal lobe epilepsy. Sorry for it. Rewriting this sentence with a correction:
"What I have read is that when having a seizure caused by FRONTAL Lobe Epilepsy, one does not lose consciousness."
This is different in Temporal Lobe Epilepsy. My awareness is very much affected by my complex partial seizures and I have some memory issues, which are normal in this kind of epilepsy (I have sclerosis on my hippocampus - left side). But I have learned to live with it: writing down all important things on my computer is the solution I have found to cope with those memory gaps. From my own experience, accepting my epilepsy, adapting and finding alternative ways to cope with certain chances in life is key to smiling again and having joyful moments in life. As I shared in a post in February 2023, epilepsy has also brought positive things into my life. Here is the link to this post, in case you are interested:
https://connect.mayoclinic.org/discussion/positive-experiences-through-epilepsy/.
I am sorry you felt the last time you had a seizure. As mentioned in my previous post, this is unusual in Frontal and Temporal Lobe Epilepsy. It only happened once to me, when my seizure evolved from a partial seizure to a generalized seizure. And this was caused by a new medication. Partial/focal seizure (seizure in one part of the brain and hemisphere) can evolve into a second generalized seizure (seizure in the whole brain, left and right hemispheres of the brain), causing falls and convulsions. If I were in your place, I would ask my doctor why this has happened.
My best wishes to you and continue sharing those positive results and enjoying family and friends 🙂
Chris (@santosha)
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1 ReactionSantosha, Thank you for the clarification on your Temporal Lobe Seizures. All makes more sense now. You really have a lot going on with your condition. I do hope things will get better for you on your journey I copied the site you shared. I will certainly make use of it. Thank you again for sharing all your thoughts & symptoms of your condition. We all need to constantly educate ourselves of what we deal with everyday & what others are living with at the same time. My prayers will be with you. Regards, boomarang
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