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Why are symptoms so bad at almost 5 months off and getting worse?


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I  really am finding it so hard to accept that this is all withdrawal, I feel so awful at almost 5 months off ,and I am struggling more than ever,

 

I long for to day I can say I have a window, or I am improving and hope for it every night

 

I worry what can be giving me the symptoms of tingling  numbness in hands, arms, face, feet, It gets worse as time goes on

 

I really do what to be functioning again but the daily 6am till 6pm fight or flight , fear and dread plagues me,  ( the odd thing is my pulse remains normal) 

 

I am tired out with lack of sleep, last night was maybe a total of an hour of poor  sleep. and awake feeling very off,  Head pressure ,deep droning and hissing in my ears,  my face and hands numb as feeling dead as I had slept on them. Lips numb and bitten ,

 

I am really struggling to cope as I feel as if I will faint with tiredness and this odd far away sensation in my head

 

I  hope that there is some relief coming, as I have spent so long being damaged by the drug and tapering,  Bedbound then housebound,  Over 2 years now and so disheartened, I have been able to walk around the block for which I am grateful but I am getting more tired and there are major restrictions here now, 

 

I am told it's all normal but this doesn't feel normal at all,

 

I truly need some decent sleep but am trying not to take anything , No other drugs,  not supplements .

 

If I had a window I could believe it is withdrawal and accept this, but I don't get them,  just a slight lessening of the fight or flight, during the evening,  The other symptoms do not alter

 

I seem to be able to do less and less but then at 75 in three weeks time I don't have the stamina for this,  yet I have no real choice

 

I think I would feel more reassured if I had heard of others who were struggling with numbness and tingling in particular, as this is the most frightening thing to me, and that it did eventually leave

 

I have seen the Doctor more than once and had a blood test, I cannot take if further during the CV crisis.

 

I am a low I think as I am so very tired and this faint feeling and hissing in my ears with the pressure is making it hard

 

I do understand that for many this is still classed as early days, but for me I tapered for so long and still be like this,  I am finding so hard

 

Just a very down day and long to live again, 

 

Please accept my apologies for being so insecure about what is wrong and my healing

 

I am trying so hard to be positive and regain life back , so that I can once again care for my son with disabilities

 

Thank you to all for your caring

 

Jen

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Hi Jen,

 

Sorry your having a tough time. It does sound like withdrawal. I’m 6 months out. I have had some windows and felt fairly good. Everyone is different and some people don’t have windows and just have a gradual improvement. I’m having a bit of a wave at the mo but I know it’s the Benzo.

 

Hang in there, you will come through it!

 

Matt x

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Hi Jen,

 

Sorry your having a tough time. It does sound like withdrawal. I’m 6 months out. I have had some windows and felt fairly good. Everyone is different and some people don’t have windows and just have a gradual improvement. I’m having a bit of a wave at the mo but I know it’s the Benzo.

 

Hang in there, you will come through it!

 

Matt x

 

 

Thank you for caring Matt,  I am so envious of your windows,  just to have a break , but yes some people don't get them , Seems my luck is out on that score,  but perhaps at some point  I will start to feel some improvement instead of feeling worse .

 

I am sorry you are having a wave  just now, and I really hope  it will pass quickly

 

Oh to sleep as I feel it so important in order to keep going, but that too seems worse, 

 

I long to feel good, I really do

 

Thank you Matt

 

 

 

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Hi Jen!

 

I’m so sorry you are still struggling. I understand your frustration! It can feel so hopeless at times!

 

I have many of the same symptoms and I’m 4 months and 13 days out! I do get a little break every now and then. My heart rate goes up to 90 if I just walk across the room so I’m limited at how much I can do. I have the constant hissing in my ears and head pressure as well.

 

I’m praying that you get a break real soon! 🙏

 

Sandy❤️

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Hi Jen,

 

I find eating really clean helps my symptoms. I’m sure you’ve probably worked this out fo yourself.

I’m on a low histamine, low fodmap paleo type of diet. It seems to help at the mo. X

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Hi Jen!

 

I’m so sorry you are still struggling. I understand your frustration! It can feel so hopeless at times!

 

I have many of the same symptoms and I’m 4 months and 13 days out! I do get a little break every now and then. My heart rate goes up to 90 if I just walk across the room so I’m limited at how much I can do. I have the constant hissing in my ears and head pressure as well.

 

I’m praying that you get a break real soon! 🙏

 

 

 

 

Thank you so much for you message  Sandy . I am so sorry you are going through rough times too,  but glad you get breaks from it, 

 

It looks as if we are close together in post taper time , and going through a hard withdrawal .

 

Do you manage to get any sleep,

 

I am really struggling now, both day and night , I need to get some decent rest to stand a chance but somehow sleep too is becoming worse, 

 

I don't understand why that should be 

 

I really hope that it is sign of a lot of changes happening and I am healing but it certainly feels like the opposite at the moment,

 

Thank you again for remembering me ,

 

 

 

Sandy❤️

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Hi Jen,

 

I find eating really clean helps my symptoms. I’m sure you’ve probably worked this out fo yourself.

I’m on a low histamine, low fodmap paleo type of diet. It seems to help at the mo. X

 

 

 

Thank you Matt

 

I do know it is probably best to eat a cleanly as possible , but at this time I am not in charge of the food and therefore I have to eat what is given as I am so underweight from this

 

I never thought I would say that, but I cannot put any weight on and doubt I will until my body is less stressed

 

It sounds complicated , Matt, 

 

What would you eat on a typical day?

 

I do try to avoid the obvious things but suspect there is MSG in some of the evening meals I have prepared for me , as in a casserole or  a cottage pie,  Even though home cooked,  stock cubes will be involved , and so I am in a predicament as I need to eat and don't have a big say it what is prepared at this time

 

I try to cut out what I can of the bad foods, except the other night when I ate some sweets ,

 

I do my best but it isn't perfect, I don't have caffeine, alcohol etc, I do have a cup of hot milk at night 

 

I tried almond milk but I was worse on that,

 

I have a slice of toast with my hot milk at night which may or may not be a good thing,  Just trying to get calories without choosing sweet things , so no cakes of biscuits

 

I really am at a low and worried I am not getting better but doing my best with what resources I  have ,

 

It is so kind of you to take an interest

 

 

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Jen,

 

Some nights I get 4 hours of sleep, and other nights maybe 6. Sleep does help! I have been experiencing some of the numbness and tingling in my left arm that you are experiencing. My biggest challenge right now is my digestive system!

 

Hoping this will all be behind us soon!

 

Sandy

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I am glad you are getting some sleep Sandy , I think it so important,  It may not be a full night , but better than nothing

 

I am sorry you are having the numbness and tingling, in your left arm,  I know it can be worrying but seems it's a listed symptom,  Does it go , or is it there all the time?

 

Lets hope these things fade out as we return back to where we should be

 

I am getting so tired and feel as if I am  failing, but maybe that too is another symptom

 

I need that sleep to recharge I know and some let up of this ever strong panicky fear feeling ,

 

I cannot understand how it starts at 6 am and starts to fade a little around 6pm, , though not always

 

My ears are such a nuisance  too as it takes away some of  the things I used to distract with and is so uncomfortable

 

When back to me again I wont take anything for granted

 

Thank you so much for caring,  Sandy

 

We will get there 

 

PS  I think a low histamine diet is one where you avoid high histamine foods  like tomatoes etc, You can look up  those foods through your search engine

 

Trouble is that is quite a lot of foods ,and when you are not in charge of the kitchen which I am not at this time and I have to eat being so thin now,  I have to eat what is served,

 

Jen

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Jen,

 

My numbness does come and go. I do get these strange feeling in my head at times. I feel like I’m losing control or that I might pass out! I look so forward to feeling good again without fear of what’s coming next!

 

You take care, Jen, and know that I’m thinking of you.

 

Blessings of healing, comfort and peace, Sandy

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It seems as if you have more of a windows and waves pattern than I do  Sandy . I do hope things settle down for you again

 

It's so distressing that I am not seeing any breaks but getting worse as time goes by. 

 

I have to believe I am healing though and in the end I will be well again

 

My symptoms  just keep getting stronger and stronger

 

I really am very scared that the damage done is permanent at my age, 

 

 

Thank you for your kind messages 

 

 

Jen

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Read this Jen, from one of Benzobuddies who has also just posted that he has healed today. He wrote this about his 70 year old friend last year.... You can contact him here and ask him how his 70 year old friend is doing now and maybe link you to this older friend for motivation... http://www.benzobuddies.org/forum/index.php?topic=240575.msg3079654#msg3079654

 

Hang in there Jen...

 

Re: Do we know of any succesfully healed buddies who are healed longterm?

« Reply #10 on: April 16, 2019, 07:33:21 am »

Quote

Hi! I have many friends who have recovered completely! We get together twice a week. Drink tea and communicate! One friend seventy years old, he's three and a half years does not drink and he is doing great after fifty years of use. Recovery is simply inevitable! Hugs!

 

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To be journeying wd in your later years..you my friend are a warrior! I am sorry for how hard this is - and IT IS  hard. I love the links Hopeful sent you in the last post...that's so encouraging!
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Jen,

 

Some nights I get 4 hours of sleep, and other nights maybe 6. Sleep does help! I have been experiencing some of the numbness and tingling in my left arm that you are experiencing. My biggest challenge right now is my digestive system!

 

Hoping this will all be behind us soon!

 

Sandy

 

Hi Sandy,

 

I know it’s tough especially with Covid and being limited to what you can get at the supermarket.

I have an underlying health condition at the mo so I’m being extra careful with food as I’m super sensitive. I cut out anything that can cause toxicity or inflammation. I cut out dairy, gluten and grains

I eat organic chicken and steak. Vegetables. Sweet potatoes, celery, parsley, berries, coconut products and just drink herbal tea. I’m sure you wouldn’t need to be that restrictive. Low carb, low histamine and organic seems to work for me.

 

I know what you mean about needing to put weight on. If you do anything diet wise just go really slow with any changes. Make them gradual.

 

Matt

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Matt man,

 

What is a low histamine diet? I’m not familiar with that!

 

Thanks, Sandy

 

Hi Sandy,

 

Certain foods are high in histamine like cheese, alcohol, banana, avocado.....it’s a long list.

These foods can cause the body to release more histamines or even prevent them being broken down. Some people may not have a problem with high histamine foods but as I’m cutting out everything that may be toxic to me I’ve made sure I have low histamine foods. I think Google. Ya offer a better explanation as I’m no expert :)

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Thanks for the info, Matt man. I had no idea about histamine in foods! I eat most of those you listed!

 

Sandy

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Read this Jen, from one of Benzobuddies who has also just posted that he has healed today. He wrote this about his 70 year old friend last year.... You can contact him here and ask him how his 70 year old friend is doing now and maybe link you to this older friend for motivation... http://www.benzobuddies.org/forum/index.php?topic=240575.msg3079654#msg3079654

 

Hang in there Jen...

 

Re: Do we know of any succesfully healed buddies who are healed longterm?

« Reply #10 on: April 16, 2019, 07:33:21 am »

 

 

Hi! I have many friends who have recovered completely! We get together twice a week. Drink tea and communicate! One friend seventy years old, he's three and a half years does not drink and he is doing great after fifty years of use. Recovery is simply inevitable! Hugs!

 

 

 

Thank you so much for your message

 

I am trying to hang in there at this time, 

 

I do feel is so hard to being going through this in my mid 70's but then as I was given this at coming up to 73,  I really have no choice in the matter

 

I am hoping that things will start to improve, at some point as these days are so tough.

 

I  really just want the life that was taken from me, back again

 

How my Doctor thought it right to prescribe this at my age and not warn me, of the possible dangers I will never know

 

I feel I am fighting for my life, One that until I developed anxiety, was a good life, with no other health problems

 

I really have to hang onto the fact that people get better and who knows , I might recover quickly ,

 

I just wish I knew why it gets worse for me as time goes on,

 

I cannot say it's windows and waves as I don't really have them , Just slowly developing more symptoms

 

However I may turn a corner and healing might start to be felt

 

I really am finding it hard I  must admit, as many others are , but I must keep going and believe I will heal from something that should never have happened

 

Thank you

 

Jen

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To be journeying wd in your later years..you my friend are a warrior! I am sorry for how hard this is - and IT IS  hard. I love the links Hopeful sent you in the last post...that's so encouraging!

 

Thank you for your kindness in messaging me Trina

 

I have no choice but to keep fighting and moving forward

 

It's so very hard, as it is for many,  I really  just wondered why things seem to be getting worse instead of better at a few days short of 5 months off, 

 

It isn't the windows and waves thing,  More I am not improving,  and more thing appear to  join the party

 

The tinnitus and head pressure is louder and stronger,  The numbness is spreading, and so disturbing ,

I have seen the Doctor more than once about it and had a blood test,

 

My sleep is worse, 

The fear and dread, fight or flight is bad, each day

I could read a little at night a short time ago  but now I cannot ,

I am trying hard to keep progressing , but it is so hard and now I feel as if the head pressure that has joined the merry band and clogged up ears feeling is getting stronger so that I have a headache

I do hope I begin to see some signs of healing, soon

It has already been a long  journey to remove the drug that didn't help me more than a very few tablets, 

I am so eager to get my life back

Maybe this is how healing is for some of us , a slow but steady  journey and no windows ,  Just waves till better

I really have no idea

 

Thank  you again

 

Jen

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Hi Jen,

 

A week ago I tried this and it seems to have helped calm me down. While in the shower I turned the water from warm temperature to cool temperature (not too cold temperature as that will shock your CNS and increase anxiety). So the cool temperature was as much as I could handle while still feeling comfortable. I did orientation of warm then cool water about 6 times. This helped calm me down. I read somewhere that this is like making the CNS breathe. Warm, then cool, then warm then cool. Just like that. Do this during your morning shower, not evening shower as that’s too late in the evening and may rev you up. So morning shower is best to do this. Hope it helps a bit.

 

I’m so sorry you are going though this, it breaks my heart. Please hang in there and don’t lose heart.

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Hi Jen,

 

A week ago I tried this and it seems to have helped calm me down. While in the shower I turned the water from warm temperature to cool temperature (not too cold temperature as that will shock your CNS and increase anxiety). So the cool temperature was as much as I could handle while still feeling comfortable. I did orientation of warm then cool water about 6 times. This helped calm me down. I read somewhere that this is like making the CNS breathe. Warm, then cool, then warm then cool. Just like that. Do this during your morning shower, not evening shower as that’s too late in the evening and may rev you up. So morning shower is best to do this. Hope it helps a bit.

 

I’m so sorry you are going though this, it breaks my heart. Please hang in there and don’t lose heart.

 

 

 

Thank you for the advice re the shower,  Trouble is I  now have a fear of the shower, and have to strip wash in bits every day , 

 

I think I must be very badly damaged, , and slow to heal,

 

I surely will get a bit of improvement soon do you think

 

I feel my days are passing me by stuck in this state and I don't know why I get worse instead of better,

 

I do understand that this is not linear  and so people get windows and waves  ,but I don't get windows  just a worsening,

 

I really hope something starts to improve , soon, My head and ear pressure is so  strong, and the noise horrendous,  , now inner vibrations have started and my bladder has decided it has no control  ,

 

Really I mean what next ?

 

Why on earth my Doctor thought this ok to be on at  my age I don't know,  I really hope with all my effort the keep a reasonably clean diet, and to  walk each day, drink water and try to sleep as best I can , I will start to recover  but appreciate  this is all about the CNS repairing , and that can take some time

 

As long as it does repair in the end,  and I can once again live life and be calm, and not hear this intense  drone and hiss with nothing else,

 

I miss the music I used to be able to hear with my hearing aid,  Now  just this , 

 

I miss all the things I used to enjoy, that this state of fear dread and terror prevents,

 

I truly hope there is a point where I  wake and think , I feel better , something is healing 

 

I suppose I am looking for hope 

 

 

Thank you so much for caring

 

Jen 

 

 

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Hi Jen,

 

I had all the symptoms you have mentioned and some have not gone away yet although they feel less intense.. I have tinnitus still. My ear pressure and pain in my head used to be so bad. It’s softer now. I also had inner vibrations, I still have these but they are better. So from someone who had the symptoms very intensely, know that they do get better. Some people get relief a bit faster than others. I didn’t have windows and waves, I just gradually started to feel a bit of relief as the weeks and months are going, until now.. So the windows and waves isn’t true for everyone. I know for sure that your symptoms will start to soften just like mine did. It took a while for me to feel the relief as everyday was just torturous. For me, it was similar to climbing a gruesome mountain. It was all bad everyday until one day I got up the mountain and the skies cleared... I’m still in recovery but not in survival mode anymore. It will happen for you too.

Read this... http://www.benzobuddies.org/forum/index.php?action=notify;sa=on;topic=240621.0;afbf8412e406=178f51150ac2135e5971f4ba7acdb67b

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Hi Jen,

 

I had all the symptoms you have mentioned and some have not gone away yet although they feel less intense.. I have tinnitus still. My ear pressure and pain in my head used to be so bad. It’s softer now. I also had inner vibrations, I still have these but they are better. So from someone who had the symptoms very intensely, know that they do get better. Some people get relief a bit faster than others. I didn’t have windows and waves, I just gradually started to feel a bit of relief as the weeks and months are going, until now.. So the windows and waves isn’t true for everyone. I know for sure that your symptoms will start to soften just like mine did. It took a while for me to feel the relief as everyday was just torturous. For me, it was similar to climbing a gruesome mountain. It was all bad everyday until one day I got up the mountain and the skies cleared... I’m still in recovery but not in survival mode anymore. It will happen for you too.

Read this... http://www.benzobuddies.org/forum/index.php?action=notify;sa=on;topic=240621.0;afbf8412e406=178f51150ac2135e5971f4ba7acdb67b

 

 

 

Thank you  so much for your words of reassurance, 

 

I looks as if you have been free of the benzo for about the same length of time as me,  I can see in your profile that you CT'd 

 

Maybe it will take a bit longer for me to feel  I am in recovery rather than survival, perhaps because of genetics,  or perhaps because I am older.

 

I really have to try and keep a positive frame of mind through this and hope that slowly my symptoms will start to soften too.

Do you  eat any special diets or take any supplements?  Not that I am going to as I am terrified I might make matters worse or slow down any recovery

 

I feel as if I have been on this journey for so long as I was ill on the drug, and through my long taper, 

 

I will be so glad when I feel it is beginning to ease down and I can actually believe that I am healing , and not  just have a blind faith without any evidence,

 

I know this all depends on how our CNS heals, For some it would seem that little damage is done and they can withdraw with little difficulty  and for others there is a degree of reaction and injury, Not  just from the benzo but from other things in the past, 

 

I truly long to feel that progress taking place, and to have some calm and quiet in my life once again

 

You are so very kind  reaching out to reassure me this is withdrawal,  and all withdrawal 

 

I worry it is more, ,but I know that is symptom too,

 

Maybe this time next year will see me writing something much more positive  or better still, being in the world again and appreciating life more than ever before , I do hope so and wish it for us all

 

Jen 

 

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Try not to compare your progress and symptoms to others... Trust that your body is working to heal itself like so many before us who healed and are now living their lives again. I don’t eat any sugar, dairy, gluten (wheat), caffeine and alcohol. I eat lots of sweet potatoes for dinner, every night basically. Also, I found walking revved me up so I stopped that. I’ll start again next week slowly. I haven’t walked since February as I thought exercise would help but it only made me feel worse (increases twitching and anxiety). Maybe stop walking for a month and see? I stretched slightly for 2 mins every day while standing up. And then while lying down I would  squeeze all parts of my body, from my feet all the way up to tightly squeezing my eyes shut. That has been my daily exercise. Nothing more than 5 mins. I feel I can increase that slowly now so I’m going to go walk for 10 mins from Monday.

I only take high quality Omega 3’s and Probiotics for digestion. I also apply lavender oil behind my ears and on my wrists twice a day. I used to take a lot of supplement but some revved me up so I decided to cut a lot of them out and let my body heal by itself as much as possible. Be very careful with supplements, they could make it worse.

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Try not to compare your progress and symptoms to others... Trust that your body is working to heal itself like so many before us who healed and are now living their lives again. I don’t eat any sugar, dairy, gluten (wheat), caffeine and alcohol. I eat lots of sweet potatoes for dinner, every night basically. Also, I found walking revved me up so I stopped that. I’ll start again next week slowly. I haven’t walked since February as I thought exercise would help but it only made me feel worse (increases twitching and anxiety). Maybe stop walking for a month and see? I stretched slightly for 2 mins every day while standing up. And then while lying down I would  squeeze all parts of my body, from my feet all the way up to tightly squeezing my eyes shut. That has been my daily exercise. Nothing more than 5 mins. I feel I can increase that slowly now so I’m going to go walk for 10 mins from Monday.

I only take high quality Omega 3’s and Probiotics for digestion. I also apply lavender oil behind my ears and on my wrists twice a day. I used to take a lot of supplement but some revved me up so I decided to cut a lot of them out and let my body heal by itself as much as possible. Be very careful with supplements, they could make it worse.

 

 

 

Thank you for the information,  I am probably doing all the wrong things after reading your message

 

I have granary bread toast and hot milk at night before bed to try and gain a little weight back and to help me sleep a little more,  I do go for a walk each day and walk maybe 3 miles or so, which might be revving me up, I am not sure

 

I am really worrying about the numbness and prickly tingling  everywhere, hands arms, face legs and feet,  It is hard to accept this is withdrawal as it never leaves, but what I can do about it  I have no idea ,

 

I have seen the Doctor more than once about it and had a blood test,  I have rung and asked about it, but in light of the virus and my age I cannot risk a hospital visit, and indeed one is not on offer so I  have to try and accept this is part of what it takes to heal

 

My ears are off the scale bad with the rumbling droning sound and the hissing and that gives me no peace,

 

I don't take supplements but do feel I  am probably depleted in many vitamins and minerals,  due to this going on for so long 

 

I try to have as much fruit and veg as I can in order to get the Vitamin C but really I feel so run down and at a time when I really do need to be well  during the  UK lock down and because of my age.

 

I really do want to be well, as do we all and find this endless waiting for recovery to happen so hard to deal with, especially as I feel worse as time goes on

 

I am trying to incorporate doing a little more in the house once past the peak of my shivering a shaking, so late afternoon onwards,  Just so that I can say I have achieved something, but this is no way to live, and sleep is missing in my life,  having only  a small amount where before this I used to sleep well and have always needed my sleep.

 

I will try the muscle tensing and relaxing to see if it helps and maybe shorten my walking, or do it in much shorter spurts once they relax the only once a day exercise rule.

 

I am trying to count my blessings as a way of positive thinking, and am very grateful for my bed and electric blanket, 

I am grateful for having food and water, and for not having to be over worried about my finances as I have been retired for some time and have my pension, and I am grateful I can walk and have access to the internet, I am grateful for BB and all the help I receive, 

 

However this doesn't get me past the fear of  just what is wrong with me and is it all withdrawal ,

I do really wish I would start to have windows, and maybe get enough sleep so that I don't feel I am fighting toxic nodding even as early as 8am

 

May I ask what else you eat apart from sweet potatoes ?

 

I really do not have control of the food in this house at the moment  however as I have not been well enough to prepare it.

 

Truly I do hope I will get better, It seems to be forever, and at 5 months free I really had hoped to feel some relief instead of getting worse each day

 

Is still hope as I try to sleep each night that tomorrow will be better as long as my symptoms really are  withdrawal.

 

It is all so hard to accept

 

Thank you so much for being there 

 

Jen

 

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