Tapering with chronic illness

Hi everyone, I know there must be many people on this forum who were prescribed benzos for a chronic illness. I was prescribed benzos for insomnia related to Lyme disease and mold illness. Of course within a few weeks I had developed many additional symptoms that I now know were caused by the benzodiazepine. I'm guessing this is the case for many others out there. I've now developed Mast Cell Activation Syndrome, ebv reactivation, candida, and histamine intolerance along with a chronic fatigue like syndrome. I guess I'm looking for encouragement from others out there who are dealing with chronic illness on top of tapering. How are you managing your chronic illness while tapering? It seems that anything I take to address the Lyme and the mold backfires and hurts me more. I guess I'm just looking for encouragement from those out there in a similar situation and hope that tapering is possible even in the face of chronic illness. I don't feel completely hopeless. Just discouraged and tired and confused about what is causing my severe symptoms.

I'm sorry AnnaMeg. It's so tough when you're dealing with chronic illness. I was tapering when I had Long Covid and it was really hard. I understand a little bit of what you're going through.

 

You can look at this thread http://www.benzobuddies.org/forum/index.php?topic=257409.0. This person is also tapering and he has Lyme.

Thanks, Jelly. I will definitely have a look at this thread. It is very hard to taper with chronic illness. Really sorry you had to go through long Covid. I know that couldn't have been easy. Very much appreciate your reply. Thank you.

Hi AnnaMeg

 

I originally began taking benzo’s because of severe reactions to histamine, salicylate, and mast cell activation syndrome, the last of which developed through stress and fear based thinking. These intolerances and reactions were the result of having developed SIBO (often going hand in hand with candida) and subsequently Leaky Gut (intestinal permeability).

 

It’s a quite tricky combination to navigate and the one thing that strikes me the most is the incredible similarity between food reaction symptoms, MCAS, and benzo withdrawal symptoms in general, at times, being often impossible to differentiate.

 

I don’t have any experience with Lyme disease, but if you find you have any specific questions relating to managing these other symptoms whilst going through benzo withdrawal, please reach out.

 

I’d planned on going more in-depth here, however, the brain fog is very thick right now, so I may just add to the thread further when I have a little more clarity.

AnnaMeg

 

I have severe Long COVID, vax injury, more COVID infections than I can count - even though I go nowhere, it’s now verging on CFS like symptoms.

 

I have MCAS/POTS/ and apparently EDS too and other severe issues.

 

I’ve made it down low, just stuck now.

 

Lots of people here like us I think.

 

Unfortunately, they give these out like candy in a lot of conditions.

 

No experience with Lyme, but I’ve heard that.

 

Good luck.

Winniedog

Hi, AnnaMeg, I was diagnosed with Lyme disease; I have chronic migraines, and the symptoms of ME/CFS.  I've wondered if benzos have made things worse, and maybe I won't know until benzos are in the distant past. 

 

Gosh, I feel for both of you who have mast cell activation.  I don't know how you wrestle with that on top of everything else. I'm SO sorry!

 

My way of coping with chronic illness and benzo withdrawal is to taper very slowly.  Every day is such a struggle; every night is as well, although I haven't really experienced bad withdrawal symptoms other than insomnia (I hope I never eat my words.)  I rest a lot and try to take it easy, but stress happens.

I feel like my brain is so impaired these days from everything.  I miss my brain.

 

Just like you, everything I take to help seems to backfire.

Thank you so much to all who replied to this thread. I'm sorry so many are suffering from other chronic issues on top of the benzo withdrawal. It really does seem like many people have been given these meds for conditions that are now actually worsened by benzo and the effects of withdrawal. I know for sure that I was healing before being prescribed the benzo. But that is all in the rear view mirror now, and it's time to move on with a taper. I appreciate everyone sharing their experience. This is a truly supportive community and I'm so grateful for that.

Wimters Sun: have you been able to do any gut healing during your taper? I'm trying to really work on gut health, as gut issues were my first inkling that something was amiss even before benzos. I'm wondering if working on gut healing makes tapering any easier.....

Winnie, you are so low in your taper. Have you been very symptomatic the whole time? Just wondering if you've been able to function during your taper. I'm pretty high up in dosage and I'm still hoping to be able to stabilize and get back on my feet while tapering.

Hi glitter, thanks for responding. You and I are at a similar dosage. I'm at 0.71 and holding for a bit but will decrease soon. Can you shed some light on how you are tapering? Thank you so much.

Hi glitter, thanks for responding. You and I are at a similar dosage. I'm at 0.71 and holding for a bit but will decrease soon. Can you shed some light on how you are tapering? Thank you so much.

It's nice to run into someone who is at a similar dose.   Thank you for letting me know.  I weigh out my doses.  At first, I was only going down .001 every 4 days (I guess that means 1/1000 of a gram.  My brain is not working right now).   It was so slow, so now I decrease that amount every three days, which isn't much faster.  I divide the doses into 2 a day.

 

How do you taper?

Thanks, Glitter. I am going to try to taper the way you are by using a compounded liquid. Right now I am using compounded capsules and reducing by 0. 0 0 5 at once. It is too much for my central nervous system. I feel pretty bad on days 4 through 12 after each cut. So, I would like to try your method by reducing a tiny bit, .001, every three to four days. I have a pharmacist who is willing to help. Thank you for sharing your method of tapering. I am looking forward to trying it out.

Thanks, Glitter. I am going to try to taper the way you are by using a compounded liquid. Right now I am using compounded capsules and reducing by 0. 0 0 5 at once. It is too much for my central nervous system. I feel pretty bad on days 4 through 12 after each cut. So, I would like to try your method by reducing a tiny bit, .001, every three to four days. I have a pharmacist who is willing to help. Thank you for sharing your method of tapering. I am looking forward to trying it out.

I would love to know how it goes for you.  It's gone well for me. 

 

I like the idea of using a compounded liquid.  Will you still have to use a scale? 

 

It would be great if you don't have to use a scale; it's time-consuming and kinda frustrating.

I'm so happy this has gone so well for you. So encouraging! The pharmacist said he would explain how to use syringes to measure the liquid. I guess the syringes are small enough to measure out teeny doses. I'm not really familiar with this type of tapering since I've only used compounded capsules so far. But he said if my doctor will prescribe the liquid, he will explain how to properly dose. I really hope it makes a difference. I would be open to using a scale for dry cutting, but sometimes I am very shaky and worry about being able to cut properly and carefully. I've been having a few good days here and there, but I'm kind of shaky more often than not. But I do know a lot of people have tapered all the way down using a scale no problem.

Thank you so much to all who replied to this thread. I'm sorry so many are suffering from other chronic issues on top of the benzo withdrawal. It really does seem like many people have been given these meds for conditions that are now actually worsened by benzo and the effects of withdrawal. I know for sure that I was healing before being prescribed the benzo. But that is all in the rear view mirror now, and it's time to move on with a taper. I appreciate everyone sharing their experience. This is a truly supportive community and I'm so grateful for that.

Wimters Sun: have you been able to do any gut healing during your taper? I'm trying to really work on gut health, as gut issues were my first inkling that something was amiss even before benzos. I'm wondering if working on gut healing makes tapering any easier.....

 

Hi AnnaMeg

 

I think the most important first step is to avoid inflammatory foods to lower inflammation in the body.

 

You may not tolerate any pharmaceutical or natural candida or mold treatments right now, just as I couldn’t tolerate antimicrobial treatment for the SIBO, but, to a certain degree, you can keep inflammation, and therefore, food reactions/mast cell activation at bay through your own personalised anti inflammatory diet. It makes sense that any healing that can be done, simply won’t take place if we continually pour fuel onto the fire.

 

I’m not saying it’s impossible to treat conditions whilst going through BW, just that we often first need to do everything we can to decrease systemic inflammation and get our internal systems functioning well enough before we try to onboard any kind of treatment.

 

 

Hi Winters Sun, thank you for your reply. I just read another post of yours where you describe having akathisia before benzos. This is exactly the same for me. I absolutely think it was due to leaky gut and sibo for me too. I deal with restlessness off and on now (have it quite bad today) and I'm definitely focusing on anti-inflammatory diet. Zero sugar, zero gluten, and just trying to stay as organic and clean as possible. I do still have flare ups however and I'm wondering if that is the same for you or if it has calmed down. You're the first person I've come across that had that awful restless feeling even prior to benzos. I didn't know what it was, but it was just as you said, inflammation in the gut leading to inflammation in the brain. Ooof.

Hi AnnaMeg

 

What I didn’t know, was that for many years (about 15), certain symptoms had been gradually worsening until they eventually exploded after a dental procedure. I remember one night about 6 years before diagnoses, finding myself sitting in my car up the road from two of my best friends house (a couple), slumped over my steering wheel crying because I was frozen by anxiety and fear at the thought of facing up to their dinner invitation. None of it made any sense to me, as they were two of my closest friends. I also couldn’t sit and watch a movie at the cinema without ending up having to walk out because of restlessness. We’re really talking about restless legs here, which gradually became a full body restlessness, not akathisia, the two of which are simply beyond comparison. As a guitarist, for years I agonised over a clear decline in both motor skills and memory, but the symptoms gradually, but, consistently increased until my whole world turned black with fear and terror, not unlike the fear and terror many experience in benzodiazepine withdrawal.

 

I’ll leave a link to a thread that may be of some interest to you.

 

WS

 

http://www.benzobuddies.org/forum/index.php?topic=279161.msg3468985#msg3468985

Thanks, Winter's Sun. I really appreciate your sharing all of this. I have had similar experiences over the past decade and it all came to a head at the end of 2020. It sounds like you are doing a lot better now if I'm not mistaken. Have you been able to heal your gut while you taper? I really think this would make my taper a lot easier as many of my symptoms seem gut and food related. I saw the easily digested Foods list that you posted on another thread. Do you pretty much stick with those Foods? I stick to about 10 foods and most of them seem okay, but I do seem to have trouble with a gluten-free organic English muffin that I eat in the morning. I know I should cut it out and see how I feel, but mornings are so awful and it is such a comfort food that I haven't been able to cut it out yet. Curious if the diet you posted in the thread has really helped with your gut. Thank you so much for all of your help with this. I've talked about diet with my doctors, but they really don't have much to offer about all of this.

Thanks, Winter's Sun. I really appreciate your sharing all of this. I have had similar experiences over the past decade and it all came to a head at the end of 2020. It sounds like you are doing a lot better now if I'm not mistaken. Have you been able to heal your gut while you taper? I really think this would make my taper a lot easier as many of my symptoms seem gut and food related. I saw the easily digested Foods list that you posted on another thread. Do you pretty much stick with those Foods? I stick to about 10 foods and most of them seem okay, but I do seem to have trouble with a gluten-free organic English muffin that I eat in the morning. I know I should cut it out and see how I feel, but mornings are so awful and it is such a comfort food that I haven't been able to cut it out yet. Curious if the diet you posted in the thread has really helped with your gut. Thank you so much for all of your help with this. I've talked about diet with my doctors, but they really don't have much to offer about all of this.

 

Hi AM

 

No… I haven’t yet resolved the SIBO, or the intestinal permeability, obviously, as the latter won’t completely heal until the SIBO is gone.

 

However, I have managed to minimise the bacterial overgrowth and inflammation with diet, therefore making the tapering process much more bearable than it otherwise would have been. Again, I’m not saying it’s not possible to treat whilst tapering, just that you want to make sure you have inflammation under control and that you’re tapering comfortably before considering treatment. I’m not sure if I’ll treat the SIBO before I finish my taper, or wait until the taper is over and I’m well into recovery, but I am leaning towards treating very soon, and if I do, I’ll let you know how it goes… how I tolerate the antimicrobials.

 

The diet in the link is quite restrictive, and is really just an elimination diet restricted further to foods that are considered easily digestible. I follow a similar diet, but my digestive tract can handle a few more foods, including the addition of moderate (but limited) amounts of higher salicylate foods such as blueberries and dragonfruit, usually added into my oatmeal. I also cheat and buy a crumbed chicken schnitzel here and there, but if I notice inflammation flare, it’s back to the basics again. I try to avoid processed foods as much as possible and just stick to whole foods, but sometimes whole foods can be very difficult to break down if digestion is heavily laboured. In this case, sometimes very basic processed foods such as white rice or rolled oats can help ease the burden on the digestive system without risking food chemical sensitivities.

 

What symptoms do you notice after the gluten free English muffin?