A year off benzo. My story till now.

[[Ro...]]

Hello dear buddies,

 

Today is the day on which I have to celebrate a year off Rivotril. So where I am.

 

I stop taking Rivotril after 4 years because of terrible tolerance. Now after a year I just want to tell you my progress.

On 24 July last year I took the last doze Rivotril and after it I do not even want to hear that there are pills like benzo in the world.

The first 6 months was hell. I have insomnia - cannot even get up from bed. I slept almost 3 hours per week. I was crying all the time, I have vertigo, heart palps (pulse - 140-160), high blood pressure, stomach pain, burning, anxiety, pains all over the body, acne, hair loss, tremor, light and sound problems, temperature (37.0 - 37.3), hypochondria, fear to death, fear to travel, I was completely sure that I will die. I think the fear was the worst of all. After the first six months suddenly all of the mentioned above symptoms decreased, i. e. I start to sleep, I have night with 8 hour good sleep, of course the next two nights I didn't sleep at all. My stomach began normal, mu heart starts to beat normal, my blood pressure became normal, the burning and pain were gone. After that the bad tinnitus appears. It sounds like .. you know the old televisions when there is no picture - its the same. It's all the time till now and after sleepless nights, it becomes loader. With the tinnitus, the neck and head pain became too till month 9. I have terrible 10 month. It was like the beginning. Pure hell! But after that I fell as almost normal (except the tinnitus and sometimes insomnia). But I have anger. I am yelling all the time, I am so nervous! But you have to know that all of these passed. I cannot believe that but except few days, I feel normal, like before benzos. In this long year I DO NOT take any pills (except paracetamol and/or aspirin when I had cold). I do not drink coffee, nor alcohol (I have few glasses of wine in February you can see my post and I was praying to heal after the bad symptoms because of the wine), I do not take any pills (sometimes a pill of Valerian when have several sleepless nights, but only one and I can sleep normal. I do not work, I take a sick note from a doctor. Last month I decided to graduate my master's degree (Electrical Engineering) so I took near 10 examinations, but the stress said its word so I couldn't pass the last examination. During the year, every month after the first 6 months of course, the waves became near my period or ovulation. I am sorry, I take Vitamin B (Milgamma N), it helps me a lot. I start to take it in the 6th month of course not all the time (1:1). It is strange but it helps me to have normal ovulation and not to have cysts. The cysts are every month after the last pill of Rivotril. I have passed all medical tests in the world during the tolerance and during the withdrawal and I am healthy as cosmonaut  I do not take diet, I eat almost all except chocolate. I am avoiding everything that stimulates the nervous system.

So, everything will be over one day!

 

My advise is:

- stay away from any drugs (paracetamol is fine, aspirin too), if you are healthy and if you do not have physical problems (if of course the doctor does not prescribe them).

- stay away from any products that may stimulate the nervous system like coffee, alcohol, chocolate, sugar

- take a rest from everything (sleep when you need no matter what time is it)

- take a gentle care to yourself

 

I hope we all be fine soon and I am absolutely sure that there is healing!

 

Kisses and hugs to all of you, friends!

 

Rositsa

 

 

[[be...]]

Congrats on one year. That is a huge milestone and every reason to celebrate. You have come a long way. It sounds like you are starting to really getting your life back.

[[Tr...]]

Great story and great advice. Congratulations!

[[Ro...]]

Great story and great advice. Congratulations!

 

Thank you but unfortunately I am in big wave from 2 days - no sleep and big anxiety. In such days I lose hope. I cannot even get up from bed.

[[sl...]]

No sleep ruins everything.  I'm a month behind you and sleep issues have made me a basket case.  I've decided to forget about the possibility of feeling normal until I'm at least 18 months off the garbage.  As bad as my symptoms are though, I wouldn't be surprised if it ends up being 2+ years before I can enjoy life and my bed again. 

[[Ro...]]

No sleep ruins everything.  I'm a month behind you and sleep issues have made me a basket case.  I've decided to forget about the possibility of feeling normal until I'm at least 18 months off the garbage.  As bad as my symptoms are though, I wouldn't be surprised if it ends up being 2+ years before I can enjoy life and my bed again.

 

You took it for a very short time (8 months). You will recover faster than me. I took it 4 years. I noticed than a hot milk with honey helps me for the anxiety and than I can sleep. Tell me more for your sleep issues? For example when I am in wave I sleep only 6-7 hours/week. It is so hard that I cannot even get up from the bed.

[[sl...]]

I'm so sorry rosita- 7 hours for an entire week is pure misery.  When I reached 9 months I entered a hellish wave like the first 3 months off.  I was getting 0-2 hours each night... And that was with Benadryl.  It was totally impossible to sleep without it. What keeps me awake are horrendous Hypnic jerks and adrenaline surges.  I can have up to 300 a night.

 

Thankfully, I've been sleeping better for the last 9 days.  Right now I'm getting 4-5 hours without taking anything.  I pray this lasts!!  Month 6 was just like this so I'm afraid of bad sleep retuning again.  Hopefully year 2 will be really good to us.  Btw,  I have not noticed a correlation between the amount of time on benzos and healing time.  Sometimes I wonder if the ones like me who had immediate horrible reactions take the longest to heal. 

[[Ro...]]

I had these hypnic jerks till 6th month. They are awful. I know what you're talking about :'(. They will passed! Just be strong! They all will passed! Only few hours sleep is not enough for us. When I am not in wave I have 8-9 hours good sleep. I do not take any pills for it. But I considered to go to work again and I have to start on Tuesday. But I am so scared. What If I do not sleep all Monday night... My working day is from 8 a.m to 5 p.m. Usually I fall asleep near 5 a.m to 10-12 a.m. and now I have to wake up at 6 a.m. I tried to go to bed at 10 p.m. and to wake up at 9 a.m. to make a regime but only make a wave.  :'( I don't know how will I get it. I want to go to work but I am so scared.

[[sl...]]

It is unfortunate that any person has to work in these conditions.  I had to quit my job a month before I jumped and I have no intentions of going back to work until I'm much better.  I'm fortunate to have a husband that's makes this possible for me.  I'm so sorry for you . Hopefully the schedule gets your  sleep schedule in sync right away.  Sometimes people say that work is a good distraction, so who knows, maybe you will benefit from it.  I have 2 little kids so there's no way I would benefit! 

 

When you had the jerks, did they ever happen over and over all night?  I have so many nights where they happen up to 300 times.,  I would gladly remove my left leg if I could be guaranteed to never have another one again!

[[sl...]]

One more question... How has your pulse been throughout this journey?  Mine is consistently high and averages around 95 for the last 6 months.  It must be partially due to massive sleep loss. 

[[Ro...]]

Yes!

 

My hypnic jerks were so hard that I woke up and began to run in the room, so scared. Mine was approx. the first 6 months after I quit.

 

My pulse was high too. I can feel my heart beating all the time. Mine was 87-110. Now it's near 67-77 and beats like before the benzo. I have a lot of tachicardia before jump. In the tolerance I had 140-160 crysis. It was very scary. I called the emergency almost twice a week. .

 

Everything will passed, be patience. It's normal. Do you take any pills, herbs, vitamins?

 

 

[[sl...]]

I don't take anything on a daily basis.  When I entered my last wave it was so bad that I took a lot of Benadryl (maybe 20 doses?) and several doses of mirtazipine over a period of 2 months.  I try not to take any med or vitamin and have not touched anything for 2 weeks.  I also tried Clonidine for my heart rate but it made my bp drop too much and my limbs would go numb.  At what month did your pulse stabilize?  My fast heart drives me nuts as I also have this slight burning and pressure pain there. Makes me constsntly feel like I'm going to die of a heart attack..  And I'm only 35! 

[[Ro...]]

Yes, I had the same feeling! Did you see cardiologist? I had all cardio tests in the world and I am completely health. But I had the same feeling that I will have a heart attack. I am 33. Near the 7-8 month my pulse stabilized. But it was one of the major symptoms that I had. This is because of the nervous system. The mentos tea helps me a while. It is scary but it will pass. So you do not take any pills for two weerks, don't you?

[[sl...]]

Not a single pill in 2 weeks.  I hate prescription meds after this horror, so I'm really trying to avoid them unless my symptoms are very unbearable.  I was able to a avoid medication 90% of the time during months 6-9.  The wave at month 9 came out of nowhere and was terrorizing.  I don't know if I can handle another one like it! 

 

Happy to hear that your heart issues have been gone for a few months.  I've seen so many doctors and there doesn't appear to be anything wrong with me, other than the fact that my heart beats fast and my sleep study showed abnormal sleep.  Crazy.

[[Ro...]]

Well, it's nice to hear that your heart is complete healthy! The high pulse is normal in the w/d period. It will normalize but it's very early for you, only 2 weeks wthout medicines. You know the medicines are not good for us and they must be avoided if of course are not prescribed by doctor! Describe your symptoms - only high pulse and hypnic jerks? Is there anything else that you feel? I had terrible wave yesterday, I cried almost all day and have 2 hours sleep. But it passed. Today I am ok and I slept almost 10 hours good deep sleep. My waves now are a day or two. Except the tinnitus and sometimes the sleepless nights, everything is like before benzo.

[[sl...]]

I am having other symptoms besides hynic jerks and tachyardia.  Burning skin, tinnitus, muscle spasms and toe tremors are with me daily.  I can live with them though- as long as I can sleep! 

Last night was the roughest night since my wave ended 2 weeks ago.  I had to urinate every 2 hours and kept waking with jerks.  Very bad anxiety and the horrible doom and gloom.

 

Off subject...

 

Ive read that you are an electrical engineer. Both of my younger brothers are studying to be engineers.  One is one year from becoming an electrical engineer and the other is trying to get into a civil engineering program.  I hate to be honest with my youngest brother, but I'm afraid he is wasting time and energy on the schooling as I fear he's only doing it for the title- not for the love of it.  In addition, he is not mathematically smart like the other brother and has been getting help from him with his online courses- yikes!  To your knowledge, are the exams and licensing very hard to pass?  I'm bsffled that he has not done much research before nose diving into this! As his older and wiser sister, I would have been holding his hand through this and helping him do the research if I wasn't so sick.  Anyway, just curious if you had any knowdege to pass on.  Personally, I think he's more suited for a degree in construction management.  All of this just popped up in conversation with my parents yesterday- trying to put together some valid reasons why he should refocus. 

[[Ro...]]

Hi,

 

I didn't understand very well... your youngest brother is studing to become a student or he is a year from graduation the electrical engineering? If the first, here in Bulgaria we study in Technical university, mine is the Technical University of Sofia. The examination to become a student is math. I've always been good in math so for me the examination was easy. If he is a student, well, it's hard. But it is interesting. Well for me was. Would you please specify what your questions are  and tomorrow I will answer to you from my PC in details (I am writing from my telephone now).

 

Hugs,

Rositsa

 

[[sl...]]

So sorry- my question was confusing.  The youngest brother is the one who wants to be a civil engineer and he has almost completed his first year of college.  He is currently taking trigonometry but has yet to take calculus or physics.  Hoping he will sign up for those next semester so he can dismiss the idea of being an engineer if he finds them too difficult.  I'm sure Bulgaria has different licensing requirements, but my main question for any engineers is:

 

If he happens to get in the program and graduate, are the licensing/tests really hard to pass?  AND, are civil engineers only competitive with a masters degree?  my brother has never heard this, but I went on some engineering forum and read that its hard to find work without one.  True??

 

Fortunately, my dad had a talk with him yesterday about my concerns so my brother set up a lunch date with a civil engineer that overseas the construction site he's been working at.  Hopefully he will pass on some words of wisdom to my brother.  He's such a good kid and I would hate to see him get so far into school with lots of doubts as my other brother (who is good at math) struggled in his 3rd year and is now taking a break from the program.  That brother is thinking of switching from electrical to mechanical.  Hopefully civil is much easier than electrical!  My head spins thinking about any of it... I have a degree in elementary education for a reason- so I would never have to do anything more difficult than 8th grade math post college, haha!

 

Anyway, don't worry about answering any of my questions- probably very hard to answer as you live in Bulgaria.  Just thought I would ask in case you were familiar with American programs and licensing.  Really didnt intend to take over your thread with my non-benzo question!  It's funny... Since Ive been feeling a bit better for the last 2 weeks, all of my non-benzo worries that ive been suppressing have suddenly surfaced like a volcano.  Hope you are feeling well.  Last night was difficult again, but I'm finding that my daytime symptoms are still doing much better.  I have all of my fingers and toes crossed that I'm never going back to the hell I escaped from 2 weeks ago! 

[[Ro...]]

Hi,

 

Sorry for the delay but I had very bad days with wave.

 

Well, first of all we study trigonometry in the secondary school here in Bulgaria, but it is easy do not worry.

The education system here is different and yes you can find a job with bachelor's degree only! You can find a job especially in the USA! It's hard to study electrical engineering but it is not impossible to graduate! It is interesting especially the part with the lightnings;). Well maybe the construction engineering is easier but I am not so sure! Every engineering specialty is hard but if you are regular in your lessons, if you attend all classes and courses, everything became easier! The teachers are available always to help. You can attend all tutorials, so calm down, I am sure that your brother will graduate successfully university (since I did it ). You worry more because of the symptoms and everything is overstated, but I am sure your brother will be absolutely perfect in his study! I will say it again - it is not impossible to graduate it!

 

If you have any additional questions do not hesitate to ask! Sorry again for the delay but you walk into my shoes and you know what are the reasons for this!

 

Kisses,

Rositsa

[[sl...]]

Thanks rosita

 

Sorry you are in the pits... I'm back in there too after a horrible night of 2 cruddy hours of sleep.  So strange as yesterday was so perfect.  I went to the lake and felt close to 100% as I barely thought about any of it and had none of the physical symptoms.  Why do these waves sneak out of nowhere?

[[Ro...]]

I am in deep depression. One day I can't sleep and cry all the time, the next day is like nothing happened. It's driving me crazy. And this terrible anxiety is killing me... :'(. I am yelling almost all day. I am so angry to all doctors and medicines. They put me in complete hell! I prey only to be healthy when it's over.

[[sl...]]

I could have written that post.  I'm so angry that this has happened to me.  I would have considered myself in perfect health before my damn doctor gsve me pills for a form of insomnia that would have resolved on its own (had a newborn).  In fact, I've been crying about it all day- and most days for the last 16 months.  It's just not fair and I fear what this will do to me long term.  To go and have 2 weeks of better symptoms only to fall completely backwards again is too much for me to take anymore.