Extreme anxiety and nothing is helping me!!

Posted by crsty40 @crstyday40, Tue, Mar 26 8:49am

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!!!

@parus heres our poppies all that rain

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@lioness

@parus heres our poppies all that rain

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

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@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!!!

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@crstyday40

@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!!!

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@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.

Liked by crsty40

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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.

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@parus

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

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@,parus 🙂

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Hi, @valm – wondering how you are doing with the feeling that there are no guarantees that anything will be stored in your memory?

You also mentioned getting to a brain overload stage sometimes. How do you manage that when it happens?

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@lisalucier

Hi, @valm – wondering how you are doing with the feeling that there are no guarantees that anything will be stored in your memory?

You also mentioned getting to a brain overload stage sometimes. How do you manage that when it happens?

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Hi Lisa. It’s getting easier for me because I’ve gotten better at accepting the “new me”. sometimes I tell people that most of the things they hear, see, etc gets stored in their memory. For me, I feel like there’s a funnel and only the things that make it through get stored.. the rest fall outside of the funnel. In the moment, I feel like I will remember it, but as time passes and someone mentions something I realize that I didn’t remember it at all. As far as the “overload”, that’s gotten a little better as I can now handle a few things at a time and not get overloaded.. I was recently around lots of people talking, and music at the same time and made it through, although found it hard to focus. Where before I’d have to leave, this time I stayed and just tried to focus on one thing at a time. It’s still quite exhausting. Thanks for asking!

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@valm

Hi Lisa. It’s getting easier for me because I’ve gotten better at accepting the “new me”. sometimes I tell people that most of the things they hear, see, etc gets stored in their memory. For me, I feel like there’s a funnel and only the things that make it through get stored.. the rest fall outside of the funnel. In the moment, I feel like I will remember it, but as time passes and someone mentions something I realize that I didn’t remember it at all. As far as the “overload”, that’s gotten a little better as I can now handle a few things at a time and not get overloaded.. I was recently around lots of people talking, and music at the same time and made it through, although found it hard to focus. Where before I’d have to leave, this time I stayed and just tried to focus on one thing at a time. It’s still quite exhausting. Thanks for asking!

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How do you control the "funnel", im asking as i would love to learn what i worry about and not worry for everything that gets said or over think things. We are flying for 2 hours next weekend and i find i am so anxious and i think its because i just came out of icu a week and a bit ago and i am so scared now to even go away for a relaxing weekend with my hubby cos of the flying.

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@cindyvag

How do you control the "funnel", im asking as i would love to learn what i worry about and not worry for everything that gets said or over think things. We are flying for 2 hours next weekend and i find i am so anxious and i think its because i just came out of icu a week and a bit ago and i am so scared now to even go away for a relaxing weekend with my hubby cos of the flying.

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@cindyvag
I’m curious why your worried about flying which is the safest form of transport. Do you worry about getting into a car? Next to the deadliest form of transportation. Only motorcycles are deadlier, do you have one of those by chance?
I like this quote from Leo Buscaglia “Worry does not empty tomorrow of its sorrow, it empties today of its strength.”
My life has been difficult enough without wasting time and energy worrying about what will probably never happen. And even the bad things that do sometimes happen aren’t as bad as most people fear. I chose long ago to get as much negativity, stress, worry, and doubt out of my life and be more confident, positive and focused.
I had enough real fear in my life without creating a bunch of irrational fears.
Perhaps you need medication for anxiety, personally I’m not a big believer in anxiety medication. I feel most people have the ability to overcome it.
I believe our lives are defined by the choices we make. We make choices from before we get out of bed in the morning until after we go to bed at night.
Hoping you can break the vicious cycle of worry,
Jake

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@cindyvag

How do you control the "funnel", im asking as i would love to learn what i worry about and not worry for everything that gets said or over think things. We are flying for 2 hours next weekend and i find i am so anxious and i think its because i just came out of icu a week and a bit ago and i am so scared now to even go away for a relaxing weekend with my hubby cos of the flying.

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@cindyvag Have you had a bad experience flying before? Is that the root cause of the anxiety? Do you have a set of wireless headphones or some way to distract yourself with soothing music, or perhaps an audio book, or a hypnosis tape to help you relax. Any of these might help you cope with your anxiety. Be sure your husband is aware of your anxiety issues and enlist his help. Perhaps your recent ICU stay and the reason behind it is the root cause. Wear a face mask to reduce exposure to germs, ask for early boarding to give yourself time to settle in. Put your mindset that you deserve to have this time with husband and family. We care here, and want to help.
Ginger

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@gingerw

@cindyvag Have you had a bad experience flying before? Is that the root cause of the anxiety? Do you have a set of wireless headphones or some way to distract yourself with soothing music, or perhaps an audio book, or a hypnosis tape to help you relax. Any of these might help you cope with your anxiety. Be sure your husband is aware of your anxiety issues and enlist his help. Perhaps your recent ICU stay and the reason behind it is the root cause. Wear a face mask to reduce exposure to germs, ask for early boarding to give yourself time to settle in. Put your mindset that you deserve to have this time with husband and family. We care here, and want to help.
Ginger

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Hi Ginger, the icu and being in a closed area seems to be what is getting me anxious. Scared after icu and being ventilated that i wont breathe sounds so stupid but i have not stopped thinkingabout this flight.but i am gonna do what you say with music and yes hubby very supportive so he already said he would keep me busy

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@jakedduck1

@cindyvag
I’m curious why your worried about flying which is the safest form of transport. Do you worry about getting into a car? Next to the deadliest form of transportation. Only motorcycles are deadlier, do you have one of those by chance?
I like this quote from Leo Buscaglia “Worry does not empty tomorrow of its sorrow, it empties today of its strength.”
My life has been difficult enough without wasting time and energy worrying about what will probably never happen. And even the bad things that do sometimes happen aren’t as bad as most people fear. I chose long ago to get as much negativity, stress, worry, and doubt out of my life and be more confident, positive and focused.
I had enough real fear in my life without creating a bunch of irrational fears.
Perhaps you need medication for anxiety, personally I’m not a big believer in anxiety medication. I feel most people have the ability to overcome it.
I believe our lives are defined by the choices we make. We make choices from before we get out of bed in the morning until after we go to bed at night.
Hoping you can break the vicious cycle of worry,
Jake

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Hi Jake, no issue with flying but just got out of icu after being ventilated and for some reason i am feeling anxious about this flight no idea really why thank u for the response

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@valm

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.

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@valm Hi, sorry for the late response, havent been on in awhile. But no ive never been tested for encephalitis. That word has never even been brought up! About a month or 2 ago I tried some new cbd, the ratio is 8:1 (cbd:thc) and i went 5 days without having any seizures or auras, thinking finally this is what i needed, im better!! Then for no reason at all I had 2 seizures yestetday, was very disappointed, thought I was on the right dose and everything is going good then BAM! Setback, again! :/ I will be asking my neuro about encephalitis at my next visit with her, cant hurt! Thank you!

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@cindyvag

Hi Jake, no issue with flying but just got out of icu after being ventilated and for some reason i am feeling anxious about this flight no idea really why thank u for the response

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Hi, @cindyvag – from what I know about experiences post-ICU, it's not unusual to have some emotional effects like the fear of flying you are describing, and it's very real (see https://connect.mayoclinic.org/page/pics/newsfeed-post/breaking-it-down-what-exactly-is-post-intensive-care-syndrome/).

That will be a great help to have a husband who is so supportive. I know when I am anxious having my husband support me and there to talk things through with me makes a world of difference.

I also agree that your question about how you control the "funnel" and not worry about everything that gets said or over think things is an important one, and hoping other members here will have some input on this topic.

I know that @crstyday40, the original poster in this discussion, talked about extreme anxiety she was experiencing, along with symptoms of epilepsy. Do you by chance also have epilepsy or a seizure disorder?

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