Many seizures, extreme anxiety

Posted by crsty40 @crstyday40, Mar 26, 2019

So almost 2 weeks ago I picked up my script Amitryptiline which i take for sleep. Last saw it on the couch, before my son got home from school i think I hid it somewhere and dont remember where I put it. The reason I hid it (i think) is my husband was gonna come by and pick me to go to the store and my son (hes 13) and his friend were going to be here and i didnt want them to see it just laying on couch. So i havent taken it in almost 2 weeks and i also have epilepsy and take Briviact, Onfi, Lyrica, Buspar(anxiety) and medical cannibas for epilepsy. I have been having many seizures..complex partials, extreme anxiety, racing thoughts, alot about dying whether its me, or my husband, my sons, my chihuahua, my mom...somebody close to me and it just wont stop!! My heart feels like its going to jump out of my chest, its just a roller coaster of ups and downs all day all night long. I dont work because of my uncontrolled seizures and im home all day by myself. Ive torn my house apart looking for that med. My memory is awful from having brain surgery, seizures, the meds im on doesnt help at all im sure. Ive talked to my neuro about it to see if theres anything she can do for me or have any suggestions and...nothing! I cant get it refilled until April 2nd. Im trying to get through this until then but I dont know how much longer I can do this..has this happened to anybody else? The buspar doesnt do anything the medical cannabis does absolutely nothing for my seizures anxiety..im so scared!!!! Thank you in advance for letting me ramble on. Please help!!!

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

lioness | @lioness | Mar 26, 2019

In reply to @merpreb "Linda- anyone can place ads. Make sure it's legit and the real thing" + (show)

@merpreb Not interested in it but saw seniors boarding buses and in the shop

Leonard | @jakedduck1 | Mar 26, 2019

@crstyday40
Hello,
It’s been awhile since we talked. I’m sorry to hear about your anxiety issues and that your seizures aren’t better controlled. I assume your no longer using CBD oil since you vape.
Anyone with Seizures should not just blithefully start taking CBD oil or smoking marijuana since there can be side effects that can increase seizure activity and increase blood levels in people taking Anticonvulsants.
I would seek out a physician qualified to dispense CBD oil or Cannabis.
Close to half of CBD oil sold has to little CBD and a quarter has more than stated on the labels.
It’s not very well absorbed either.
I read that 1 out of 5 bottles has high levels of THC.
Jake

Parus | @parus | Mar 26, 2019

In reply to @lioness "@merpreb Not interested in it but saw seniors boarding buses and in the shop" + (show)

@lioness Just what everyone needs. A bus full of loopy seniors. Yup, there go my mental images once again.

lioness | @lioness | Mar 26, 2019

@Paris you made me laugh I ended that thanks have a good day

Parus | @parus | Mar 26, 2019

In reply to @lioness "@Paris you made me laugh I ended that thanks have a good day" + (show)

@lioness Thank you. Nice to know I could be of help.

lioness | @lioness | Mar 26, 2019

@parus heres our poppies all that rain

Parus | @parus | Mar 27, 2019

In reply to @lioness "@parus heres our poppies all that rain" + (show)

@lioness Thank you for brightening my morning with these smiling faces!!

crsty40 | @crstyday40 | Mar 27, 2019

@jakedduck1 Thank you! I do see a certified medical marijuana doctor, the only one close to me in our area. I see her every 6 months. She had me doing only the oil which i think has less than .3% thc in it. She had slowly increased my drops over time because it wasnt helping. Was up to 18 drops 2x a day and at $80 a bottle with it not doing anything to help I just felt it was a waste. The vape I have now has 13%thc in it..have tried different ones and it either knocks me out or I get extremely anxious whole body shakes, nothing has helped me. And the vape is alot cheaper than the $80 bottle of cbd. I guess Im still going to try different ones. Theres many to choose from. Also @merpreb I have heard about epidiolox. I will be asking about that very soon!!! Thank you for your helpful tips suggestions and caring!! Means a lot!! My neuro called in my Amitryptiline to the pharmacy, took it lastnight and slept like a baby, not feeling anything like I did this past week. Its going to be a good day I do believe!! Thank you all so much!!!

Merry, Alumni Mentor | @merpreb | Mar 27, 2019

In reply to @crstyday40 "@jakedduck1 Thank you! I do see a certified medical marijuana doctor, the only one close to..." + (show)

@crstyday40- I am so glad that your doctor responded to you so quickly! What a relief you must feel. All days should be good for you after sleeping well.

valm | @valm | Mar 27, 2019

Has your neuro ever tested you for encephalitis? I started with Facialbracial distonic seizures and took a video of it. I was admitted to the hospital and my neuro took the video home and studied and searched and said “I think I know what you have” . Took some spinal fluid, sent it to Mayo in Rochester and I was diagnosed with Autoimmune Limbic Encephalitis. Many people have diffferent seizures and other symptoms and are often misdiagnosed. There are many types of encephalitis with different behaviors/symptoms. I would strongly recommend your doctor have you tested so you can receive the proper treatment and get it under control. I”m on Keppra, Vimpat, CBD oil, and every 6 months Rituxamab infusion. When it first started I spent 10 days in the hospital, and went through steroids, Keppra, IVIG which worked for a few weeks then stopped, and then finally on Keppra again with Vimpat which also worked for a only worked for a while and then they increased the dosage and gave me Rituxamab. Seems like they finally found the right formula for me as I’ve been seizure free since Jun 13, 2018. My memory is still pretty scattered. I can pretty much only live in the moment as there are no guarantees that anything will be stored in my memory. Sometimes I can hear the same thing 3 times in a row and it still doesn’t stick. I also get brain “overload”. If too many things are going on or said, or if I”m already trying to process something and someone interrupts, I have a very difficult time and my brain “overload” switch triggers and shuts down. I can’t deal. Anyways, I wanted you to know that there may be other possibilities for a diagnosis that could potentially effectively help with most of your symptoms. They have found that the sooner encephalitis is diagnosed, the better the long term outcome.