New Member-Going through a Wave feeling exhausted

[[be...]]

Hi there, 

 

New member here. I am so grateful to have found this forum. I was hesitant to post anything because I am a pretty private person but man this has been an experience like no other. 

Here's my story. In December 2019 I was prescribed Lorazepam for uncontrolled seizures. It worked wonders and I was in University at the time in a competitive and demanding program. I asked my doctor if I could take the Lorazepam to help me sleep at night and he said absolutely it was safe and I could come off any time. So I took the meds periodically for sleep as well as for the seizures. I started at 1 mg at night then I needed more to sleep so my doctor said 2 mgs was fine. I took the meds all throughout school and of course through the stresses of the pandemic etc. I figured since my doc said it was safe I would stop when school ended. 

 

I was admitted to an Epilepsy Monitoring Unit in July of this year and they needed to capture seizures so they took me off the Ativan in 5 days. By the 5th day all hell broke loose and I was delirious. I had no idea that would happen. It was shaking, my heart rate went up to 200 bpm and I felt like I was going to pass out. The nurses were concerned about heart rate spikes but continued to monitor me. It wasn't until one special nurse came to my bed side and explained that withdrawing suddenly  from the Ativan could do that that. The doctor on call also acknowledged this thank goodness because I felt as though I was losing my mind. Horrendous as you all know. I was able to get down to 0.5 mgs but by that point after 3.5 years on it every night I was so ill that I had to leave the clinic. Had I known what I know now I would have stayed and gotten done to 0 just to be done with it since I was already under medical care but I was not well and was scared of the sheer intensity and variability of symptoms the scariest of these was looping thoughts/racing thoughts and palpitations. 

When I got home I reinstated at 1 mg as they advised me to get back on the meds until I could see my doctor. I was relieved but then I started researching this stuff and went to my doc who said "Yeah that happens, sometimes. Some of my patients have to stay on these for life. " I was so furious at him, myself the system the drug just everything! 

In  my zeal to be done with things I made a cut from 1mg to 1.5 mg and five days later it hurt (not near like the first time but bad). Now I am using water titration to come down by 0.003 % per day but it is not as smooth as I would like and I seem to have hit a wave for the past 2 days, not too bad but feeling discouraged and worried it is going to be like this once a month the whole 287 days. Are there ways to make a smoother taper? I was going to hold for a bit but I am down 4% of my dose in 30 days and still had a wave. This is hard. I just lost my little brother unexpectedly earlier this month and it feels like this benzo stuff is interfering with my grief but my desire to get off this stuff is so strong. I could really use some encouragement and a benzo cheer leader at this point. 

Any encouragement/positive cheer is welcome, 

Thanks for listening 

[[Co...]]

5 hours ago, [[b...] said:

Hi there, 

New member here. I am so grateful to have found this forum. I was hesitant to post anything because I am a pretty private person but man this has been an experience like no other. 

Hello @[be...]. Welcome to BenzoBuddies.

5 hours ago, [[b...] said:

Here's my story. In December 2019 I was prescribed Lorazepam for uncontrolled seizures. It worked wonders and I was in University at the time in a competitive and demanding program. I asked my doctor if I could take the Lorazepam to help me sleep at night and he said absolutely it was safe and I could come off any time. So I took the meds periodically for sleep as well as for the seizures. I started at 1 mg at night then I needed more to sleep so my doctor said 2 mgs was fine. I took the meds all throughout school and of course through the stresses of the pandemic etc. I figured since my doc said it was safe I would stop when school ended.

First of all, if you suffer from a seizure disorder, it is imperative that your withdrawal plan is supervised by a doctor, and preferably by a neurologist. The risk of status epilepticus seizure is too great if you do this by yourself.

Benzodiazepines are very effective in treating status epilepticus seizures. But they are rarely prescribed for long-term treatment of seizures, expect where there are not good alternatives. Benzodiazepines are also very effective hypnotics, but only in the shorter term. We quickly adjust to their presence and become ineffective.

5 hours ago, [[b...] said:

I was admitted to an Epilepsy Monitoring Unit in July of this year and they needed to capture seizures so they took me off the Ativan in 5 days. By the 5th day all hell broke loose and I was delirious. I had no idea that would happen. It was shaking, my heart rate went up to 200 bpm and I felt like I was going to pass out. The nurses were concerned about heart rate spikes but continued to monitor me. It wasn't until one special nurse came to my bed side and explained that withdrawing suddenly  from the Ativan could do that that. The doctor on call also acknowledged this thank goodness because I felt as though I was losing my mind. Horrendous as you all know. I was able to get down to 0.5 mgs but by that point after 3.5 years on it every night I was so ill that I had to leave the clinic. Had I known what I know now I would have stayed and gotten done to 0 just to be done with it since I was already under medical care but I was not well and was scared of the sheer intensity and variability of symptoms the scariest of these was looping thoughts/racing thoughts and palpitations.

I can understand the logic of needing to take you off lorazepam so that the doctors could properly assess your seizure condition. But they should have been prepared for the possible consequences of a (near) cold turkey withdrawal and warned you in advance too.

If I was you, I would probably contact the doctor/clinic again. Explain why you left and ask how do you move forward now. Since lorazepam is what controls your seizures, and you already suffered uncontrolled seizures before you started the medication and - I cannot stress this enough - there must be a significant risk of life threatening status epilepticus seizures if you withdraw from lorazepam by yourself.

5 hours ago, [[b...] said:

When I got home I reinstated at 1 mg as they advised me to get back on the meds until I could see my doctor. I was relieved but then I started researching this stuff and went to my doc who said "Yeah that happens, sometimes. Some of my patients have to stay on these for life. " I was so furious at him, myself the system the drug just everything!

Good.

I understand your concerns about continued use of lorazepam, but if it is the only or best treatment for your seizures, it comes down to balancing the benefits and downsides. And uncontrolled seizures is very serious downside.

In case you are not aware, status epilepticus seizures are not self-limiting seizures. If untreated, the seizure might continue indefinitely, ultimately resulting in death. And there is much greater risk of this when withdrawing from benzodiazepines if you suffer from a seizure disorder (even if you follow what might a sensible taper plan for most other people). I am not trying to scare you. I just wish to drive home that you MUST do this only under suitable medical supervision.

5 hours ago, [[b...] said:

In  my zeal to be done with things I made a cut from 1mg to 1.5 mg and five days later it hurt (not near like the first time but bad). Now I am using water titration to come down by 0.003 % per day but it is not as smooth as I would like and I seem to have hit a wave for the past 2 days, not too bad but feeling discouraged and worried it is going to be like this once a month the whole 287 days. Are there ways to make a smoother taper? I was going to hold for a bit but I am down 4% of my dose in 30 days and still had a wave. This is hard. I just lost my little brother unexpectedly earlier this month and it feels like this benzo stuff is interfering with my grief but my desire to get off this stuff is so strong. I could really use some encouragement and a benzo cheer leader at this point. 

Any encouragement/positive cheer is welcome, 

Thanks for listening 

You should know that 'water titration' is unreliable. You might significantly under-dose using water. There are much better suspension mediums available from the pharmacy. Even better, your medication might be compounded for you by the pharmacy (you will need a prescription).

I am sorry to hear that you lost your brother. My sincere condolences. And yes, benzodiazepines can interfere with the grieving process. All I can suggest is that if parts of the grieving process occur later for you, that's OK. The important thing here is to taper off safely, using reliable dosing, and to do this under appropriate medical supervision given your seizure disorder. Or, alternatively, consider that taking lorazepam might be the best option for you. But this is discussion you should have with a neurologist.

Stay safe, @[be...].

Colin.