So poorly and defeated

[[ch...]]

I am so sorry you are suffering this way too Ajusta

 

I really hope that things improve for both of us.

 

I think I am in the acute phase though it has started early if it is,

 

I do hope that things ease down as time goes by

 

I know I am very scared by all of this,

 

But I have to believe I will get better  given time,

 

I do wish there were others who have had this and recovered as I feel it might be permanent

 

However that could be the drug or lack of it talking, 

 

I wish I knew how to make it better for you Ajusta,

 

Jen

[[Mo...]]

Jen,

It WILL eventually fade.  I've had numbness, tingling, burning, my feet are freezing, my skin feels like it's being stung by bees, extremeties so cold I can barely feel them - and this is all while still on the drug.  All of these are "normal" things unfortunately.  They used to bother me until I got worse things.......you must accept that these ARE normal WD symptoms.  You are not permanently damaged - you WILL heal.  Just keep doing what you are and tell yourself that over and over and don't even question any longer whether it's withdrawal or not.  Continue to try and maintain your strength as best as you can, stay hydrated and force feed, do what you can and slowly, things will improve. 

 

Hugs! 

[[ch...]]

Jen,

It WILL eventually fade.  I've had numbness, tingling, burning, my feet are freezing, my skin feels like it's being stung by bees, extremeties so cold I can barely feel them - and this is all while still on the drug.  All of these are "normal" things unfortunately.  They used to bother me until I got worse things.......you must accept that these ARE normal WD symptoms.  You are not permanently damaged - you WILL heal.  Just keep doing what you are and tell yourself that over and over and don't even question any longer whether it's withdrawal or not.  Continue to try and maintain your strength as best as you can, stay hydrated and force feed, do what you can and slowly, things will improve. 

 

Hugs!

 

 

Oh thank  you for you message of hope,  I really need to hear from someone who has had this . I have had numbness for many months and it has gradually become worse over the course of withdrawal but this has escalated so massively last night and today that it has caused me to waiver in the belief that is will ease off,

 

I thought it would be too soon for the acute phase, but perhaps  because I tapered to nothing it might be I was already in it and now is just the continuation.

 

I have tried both the Doctor and the psychiatrist and there is little they can do.

 

Not recommended I go to the hospital , I did ask, I also looked on  WIKI and paresthesia is a listed symptom but this is so strong I feel as if I not recover,  the numbness has lasted months and I dealt with it, but not this level and nowhere to turn now,

 

It was suggested by the psychiatrist that I try a little propranolol over the weekend to get me through , not sure if it would do anything  though and a small amount of melatonin for sleep, but again a bit dubious,  as I have been trying to give my body a clean slate to heal from

 

As long as I know this is just a symptom that will eventually fade then I will have to come to terms with it.

 

Thank you again

[[va...]]

Hi Jen, I'm sorry I haven't been writing much, and on top of that you're so scared. I'm so glad momof7 has written such a reassuring message. She's an angel and see? It all looks like withdrawal. I don't like to push drugs on anyone but frankly I would try the propanolol to see if it helps. It doesn't do much in this acute phase but maybe a tiny bit of relief.

 

How do you manage to get groceries and that kind of basic stuff?

[[ch...]]

I don't manage to be truthful , I rely on others to bring in the shopping . I really have little quality of life, but hope it will return soon, Surely there will be a let up sometime. 

 

I don't know how long this phase will last . 

 

Hopefully not too long.  No one can predict,

 

I long for my life back.

 

Thank you for caring vali. it means a lot and is getting me through as I can do nothing other than try and survive this.

 

Not sure what is safe and what is not these days so have taken nothing , trouble is I have become scared of food now and that is not good, 

 

I am really run down, and tired,  I so want to be well again, 

[[va...]]

I don't manage to be truthful , I rely on others to bring in the shopping . I really have little quality of life, but hope it will return soon, Surely there will be a let up sometime. 

 

I don't know how long this phase will last . 

 

Hopefully not too long.  No one can predict,

 

I long for my life back.

 

Thank you for caring vali. it means a lot and is getting me through as I can do nothing other than try and survive this.

 

Not sure what is safe and what is not these days so have taken nothing , trouble is I have become scared of food now and that is not good, 

 

I am really run down, and tired,  I so want to be well again,

 

Jen, I understand how scared you must be of everything but you have to force yourself to eat whatever it takes. What have you eaten today? I wish you could manage Amazon prime now too order all your groceries online. I would also get protein shakes, they get some protein in your system without much swallowing and chewing effort. You absolutely need to eat.

[[...]]

Hi jen,

 

I know how you feel and can relate to every sx you are experiencing still. You are just off and your system is going through major adjustments so the new sx or worsening sx are not surprising

I'm 5 months off have been in acute with no breaks. But I truly believe no one would be even close to my extreme situation. I hope this stage is short lived for you.

 

What do you mean you are scared of food? Is it just emotional or good made you feel unwell?

 

Glutamate level in this stage can be elevated, avoiding msg, artificial sweeteners and food high in glutamate can help.

 

4mom

[[ch...]]

I don't manage to be truthful , I rely on others to bring in the shopping . I really have little quality of life, but hope it will return soon, Surely there will be a let up sometime. 

 

I don't know how long this phase will last . 

 

Hopefully not too long.  No one can predict,

 

I long for my life back.

 

 

 

 

 

I am scared of food because I am afraid it will make the symptoms even worse,  I read on here it's best to have an organic ketogenic diet,  but I do not have access to that, 

 

It's the basic diet I grew up with really plus a potato or two I guess, That was a time when food came as organic because everything was,  caterpillars a free extra.

 

However now you have to hunt it out and pay a premium,  neither of which I can do,

 

I am afraid of what I drink to , so down to water, and an occasion cup of very weak decaf tea 1 tea bag lasting the day or a cup of rooibos tea, the same thing one tea bag all day .

 

Life is just horrible so food is scary, I used to love my food, Now I cannot have my cheese on toast, I cannot have a sandwich , I cannot have a cup of tea and biscuit,  I am stuck with salad and fish or meat and veg,  and that is it,

I am even worried about  yoghurt, .Just what is safe to eat if you cannot afford organic and you cannot get out to the shops if you could?

 

I feel totally crippled by my symptoms and don't want to make them worse,  so I fear food now ,

 

Even a protein drink I would worry as I read somewhere on here that they can rev up symptoms,  maybe the whey,, but then even pea protein might do the same, . 

 

I just wish I could eat as I used to, and I would if I didn't react, , all this msg in hidden names, so no gravy mixes or cheese mixes, in fact no anything, so I don't have anything, 

 

I would love to eat , and have an appetite again,  gain a bit of weight,  I am so painfully thin now, but what more can I do?  I eat what I can but it's not enough I know, I do hope my body will eventually tolerate food again, because  I really need it

 

 

 

Thank you for caring vali. it means a lot and is getting me through as I can do nothing other than try and survive this.

 

Not sure what is safe and what is not these days so have taken nothing , trouble is I have become scared of food now and that is not good, 

 

I am really run down, and tired,  I so want to be well again,

 

Jen, I understand how scared you must be of everything but you have to force yourself to eat whatever it takes. What have you eaten today? I wish you could manage Amazon prime now too order all your groceries online. I would also get protein shakes, they get some protein in your system without much swallowing and chewing effort. You absolutely need to eat.

[[...]]

I'm the most extreme in terms of food sensitivity so far from what I read from everyone. Organic or not is not problematic for me. Hope it's not for you too. It's mainly glutamate and after over reaction to over 30 food items, these are what left on my plate. Rice, potato, yam, squash, carrots, cucumbers,  radish, pear, water melon, asparagus, white fish, egg, salt, oil. Water.

 

Nothing else including spice.

 

It's a good you can still drink tea oe decaf. without problem, a sign that you are not super sensitive.

 

It's a huge challenge to maintain nutrients with the diet restriction. I'm getting my blood test done just to find out.

 

It sucks eating became such a huge challenge. But when life is held on it, we got no choices.

 

Hope someday we can eat normal again.

 

 

[[Ca...]]

Hi Chin..

Ill try not to over repeat what others are saying too much, but it all sounds horribly normal to me, -for those of us that get a good slap from this... My time line seems a lot more delayed than yours, and obviously involves further tapering and events beyond just benzos, but I find I have to constantly step back and try to look from the outside in, or it gets overwhelming and non-productive..

-Easier said than done, for sure.. -a daily chore..

 

To that effect though, -and were it me, I would be cautious of trying to “treat” with big changes such as the keto you mentioned at this point... More I would just stick to what you know of as generally healthy from your past years of experience... An exception, might be things like the protein shakes mentioned, to help “top up”, and some more general changes such as the gluten, sugar, etc mentioned... Just dont exclude at the risk of not eating enough..!!

As things settle down in time, your body will help you fine tune it all...

 

This really is a game of trust, acceptance, and distraction at this point.. We gain that from those that have gone before us... -Our job is to keep reminding you that its early days, and things will get better..!! Its not something our own minds are that good at when in the thick of it...

 

One day at a time, -as simplistic as that sounds...

-I wish you had more Dr empathy though... But thats on them, not you...

 

Wishing you better days asap...

 

[[Ma...]]

Great post Cant....

[[Ca...]]

Great post Cant....

Thanks Mim, -Though not just mine (if even), What a great little village we have here..!!

Lol, I always worry about my first morning post..!! -so thanks again...

 

[[ch...]]

+

Thank you so much Cant.  You are always so careful in your words or wisdom, that come from someone in a long battle through all the different drugs given to us.

 

I guess I am finding it hard after so many months of tapering from a relatively short term low dose use, and not only not getting any help at all from the drug, except for a few days at the beginning, It has been such a long bed bound agoraphobic  journey .

 

I was so active before and loved life,  I feel as if I have been hit by a drink driver and left to find a way to recover by myself.

I am really finding the increase in present symptoms so hard to deal with but really I could not have taken longer to get off this drug, in fact I should probably have stopped it many months back in my case as it has caused more and more damage. Of course we are all different, and we don't know these things till after the event.

 

My head pressure, ear fullness tinnitus and extra hearing loss is adding to my distress, I am not sure if that will improve but I am hoping it will. I keep wanting to turn my hearing aid up,  but it wont go higher.

 

I am so grateful for all the love and care I have been surrounded by on here, It is beyond words,

How could I even manage this time without all of you to help me through. I am oh so grateful

 

Here I am on day 7 after a short sleep. I keep hoping that I will be granted a window but not as yet. Maybe one will arrive for Christmas,  I wish my ears were not this bad. I am so used to being deaf and having tinnitus, but this is in a league of it's own, together with the numbness and raw soreness, 

 

It's a hard journey and so sad that this has happened to many of us.  I really do want some decent quality of life before my time here is over. Certainly I don't want a Doctor's prescribing to take all of the  time left to me.

 

Thank you Cant  for you thoughtful message

 

 

[[va...]]

Good morning Jen. You're getting a little bit of sleep you said? It's great if you sleep a bit and thus get a small break from this. I hope today is a bit less difficult than yesterday. Get some food in your tummy OK? I agree with Cantfly about not obsessing too much about food sensitivities unless you notice a correlation between certain foods and worsening of symptoms. I think if you can get some toast, eggs and roibos for breakfast it's unlikely to harm you and your body needs the nutrients so badly.

[[Ca...]]

+

Thank you so much Cant.  You are always so careful in your words or wisdom, that come from someone in a long battle through all the different drugs given to us.

 

I guess I am finding it hard after so many months of tapering from a relatively short term low dose use, and not only not getting any help at all from the drug, except for a few days at the beginning, It has been such a long bed bound agoraphobic  journey .

 

I was so active before and loved life,  I feel as if I have been hit by a drink driver and left to find a way to recover by myself.

I am really finding the increase in present symptoms so hard to deal with but really I could not have taken longer to get off this drug, in fact I should probably have stopped it many months back in my case as it has caused more and more damage. Of course we are all different, and we don't know these things till after the event.

 

My head pressure, ear fullness tinnitus and extra hearing loss is adding to my distress, I am not sure if that will improve but I am hoping it will. I keep wanting to turn my hearing aid up,  but it wont go higher.

 

I am so grateful for all the love and care I have been surrounded by on here, It is beyond words,

How could I even manage this time without all of you to help me through. I am oh so grateful

 

Here I am on day 7 after a short sleep. I keep hoping that I will be granted a window but not as yet. Maybe one will arrive for Christmas,  I wish my ears were not this bad. I am so used to being deaf and having tinnitus, but this is in a league of it's own, together with the numbness and raw soreness, 

 

It's a hard journey and so sad that this has happened to many of us.  I really do want some decent quality of life before my time here is over. Certainly I don't want a Doctor's prescribing to take all of the  time left to me.

 

Thank you Cant  for you thoughtful message

One week..!! -Well done..!!

-They all add up over time and =healing..!!

 

Try not to stress about your taper.. I remember reading your posts with an eye towards how you were managing with speed, and once you were comfortable with pushing on, You seemed to feel you were pushing your limits quite nicely.. The early days prior to that perhaps gave you that strength and confidence/understanding to persevere in the final leg...

I know I seem to forget the past pain pretty quick, so I often wonder if I could have done things differently, but its all water under the bridge in the end... -You made it off..!!

“Only” the final stage to go now, and that will become lots of little wins that sustain you through to healed, and beyond...

 

 

[[ch...]]

Good morning Jen. You're getting a little bit of sleep you said? It's great if you sleep a bit and thus get a small break from this. I hope today is a bit less difficult than yesterday. Get some food in your tummy OK? I agree with Cantfly about not obsessing too much about food sensitivities unless you notice a correlation between certain foods and worsening of symptoms. I think if you can get some toast, eggs and roibos for breakfast it's unlikely to harm you and your body needs the nutrients so badly.

[/quot

 

 

 

Thank you so much for the morning greeting, How lovely to be remembered, 

 

I did have a small amount of sleep with the usual very early cortisol dread thing happening around 3.30am. However I think I fell asleep sometime after 1.30am. Not a lot but better than none.

 

I really am struggling with food at the moment but must try to eat, I have had a banana so far but will try to eat a little salad of some kind in a short while,

 

One day further on and I have to hope that one day soon the noise and the numbness start to settle,  The adrenalin fear is always there but I have to accept it as I cannot alter it.  It surely will improve as my body mends.

 

Thank you for all your care over the months, You have been so very kind 

[[va...]]

Jen, in summer I struggled some days with eating (not now, I eat like a pig).

 

Anyway, back then I bought this protein shake free of sugar, artificial sweeteners and anything in general.

 

I just put one scoop in a big glass, mix with milk or water and drink it. Much easier than eating. I never felt it harmed me in any way. How do you manage telephone conversations with the hearing problem? I hope that starts to improve a bit for you. How I wished you had more help however it is what it is. I'm glad you got two hours. That's much better than nothing.

 

https://www.amazon.co.uk/Organic-Whey-Protein-Certified-Unflavoured/dp/B01MQHM59V/ref=sr_1_9?keywords=protein+shake+natural&qid=1576931717&sr=8-9

 

 

[[ch...]]

Thank you so much for the link Vali. I am so afraid of everything but that is being stupid,  I guess it's this fear that latches onto anything and everything and I don't want to risk making it worse.

 

Maybe if I try the protein powder in a smoothie with some frozen summer fruit it might be ok to sip in the day,  I really am letting this process dominate my life and I know I shouldn't.  You know the level of fear I mean as you have been there.

 

Did you take the protein mix  after you improved or during the period when things were really bad for you?

 

 

I hear with great difficulty on the phone with the use of a hearing aid and on speaker phone,  However it is very uncomfortable at present as sound is distorted , The tinnitus is extremely loud and high pitched and a deep base, It is really painful at times but I know I have to able to speak to people

 

I do hope this will all eventually ease down but I think the extra hearing loss with stay , I can take that, if the rest eases as I am further away from the last dose

 

Thank you  Vali

[[va...]]

Jen I took the shake when I was at my absolute worst sleeping nothing and in terror and SI all day. It was hard to eat some days so I had this shake. As soon as I felt the slightest improvement I started eating normally again. I'm not going to do a restrictive diet. I think I'm suffering enough already. I hope the protein shake works for you.

[[Ma...]]

Jen, I just sent you some good quotes for whey out of search engine.  I agree with Vali, you should give it a try  :smitten:

[[ch...]]

I just had a quick look using the search engine, and it says whey protein is high in glutamate,

 

Feels like drinking 10 Red bulls,  Oh dear I don't think I want to add glutamate at this time, 

 

I don't know how accurate this information is , I will have to check further

 

 

 

Thank you vali and Mary

 

So kind trying to help me

[[va...]]

Chinchuk then don't take it because even if it weren't true, the fear would make you feel worse. Get that protein in OK? Eggs, ham, fish, chicken or meat. You can't go through this on salad. You need to help your body Jen. You don't go through this war on an empty stomach. I hope you're finding the strength to hang in there 🍀🍀🐘

[[ch...]]

Chinchuk then don't take it because even if it weren't true, the fear would make you feel worse. Get that protein in OK? Eggs, ham, fish, chicken or meat. You can't go through this on salad. You need to help your body Jen. You don't go through this war on an empty stomach. I hope you're finding the strength to hang in there 🍀🍀🐘

 

 

Thank you Vali.  I do wish there was something that is safe. The last thing I want right now is more glutamate,, but I do need some calories of the good kind, 

 

I managed the eat two lamb cutlets,  some broccoli, cauliflower,  a little potato. But I need a lot more calories.

 

I don't know why whey powder is high in glutamate as I didn't think milk was.

 

I am hoping that now I am free of the drug except for whatever tiny bit is still stored with the half life etc, then I might start gaining a bit of weight.

 

I think that valium was bad for me in so many ways, especially at my age when the build up can be toxic. 

 

Just hoping that things turn around soon,

 

I am so fortunate to have you all care so much , 

 

Thank you

 

Jen

 

 

[[...]]

Hi jen,

 

Usually food high in protein is also high in glutamate. Can you eat eggs?

[[ch...]]

Hi jen,

 

Usually food high in protein is also high in glutamate. Can you eat eggs?

 

 

Yes I am fine with eggs.  I seem to be fine with protein, but it really is hard to tell as my fine means my symptoms are not ramped up further.  I wish I could eat some bread with my eggs but I struggle with that to say the least

 

Hopefully one day I will be able to eat bread again as there are some really delicious breads and I used to love trying different ones, especially if still warm from the oven with fresh butter.

 

Oh well I can dream 

 

Jen