My health problems unrelated to Benzos?

Hi, I’m on a quest to solving my complex web of health problems and symptoms one step at a time; getting a clearer picture and hope to receive some input, advice and help from you guys!

So I wanted to write this for a very long time, but I'm just at a loss and so very lost.. I'm trying to determine what my health problems were/are beneath the benzo-related complications that need to be addressed, since doctors and psychiatrists haven't been able to provide the answers in my years of on/off search. And I would love your input/thoughts on determining what direction I should head in. Because truth be told, I was not healthy before the Benzo use, though the benzo use made me profoundly sicker and disabled almost from the first pill.

The reason I started taking benzodiazepines (which 100x folded all my pre existing problems, plus added a few hundred new symptoms) was because of pretty severe insomnia last october. The insomnia set on mostly due to anxiety, or so I believe(d). I've been fixating on all the problems that arose since I took benzo's, but clearer to me now is that I had complications before that for quite some time - mostly fatigue/brain fog/inability to enjoy things I once did, which I could not explain ..apart from just anxiety, and anxiety-related symptoms.

A quick summary about me/my history:

-Happy childhood.

-Developed panic/anxiety disorder at age 14 from unhealthy lifestyle and stress (bullying, terrible eating habits, divorce parents, getting addicted to video games, isolation)

-All anxiety related symptoms unfolded; DP/DR, agoraphobia, panic attacks - you name it.

-Refused to take drugs as I knew they weren’t the answer; find online therapy that worked for me for the most part (Linden Method)

-Mostly able to get by and live alright, anxiety under control with the therapy.

-2014 I get very sick one day at work because I couldn’t sleep for a day, ended up getting the flu for about 4-8 weeks. After this, I have been stuck with a persistent fatigue

-Dismissed it as “burnout” from the long intensive working hours and the occasional panic attack, plus the stress of my relationship ending earlier the previous year

-Decide that it’s best to quit job to “heal” .. so I did quit but virtually nothing changed.

-Sept 2014 through Jul 2017 I did all sorts of therapy regarding social, emotional, and “functioning in society” issues. Learned a lot in these years and my anxiety was much more controlled, but, unfortunately the feelings of fatigue/low mood-is like depression just kept persisting/if not worsen in some ways.

-During all this time I am able to occupy myself well with my passions/hobbies (mainly writing & producing music) to keep myself afloat/soothe myself/keep myself somewhat happy and excited for life.

-Jul 2017 I am struck again with mysterious long-lasting flu after I finish up my therapy in other side of country & move back in with parents, unable to do anything including do my music

-In this summer the flu persisted and I felt a sadness/depression crawling back in with the isolation I felt, away from all the friends I made near the place of therapy

-Sept 2017 I get my first very own place to move into; yay! After moving in & doing all the things one must learn when first living on their own; I feel overwhelmed, exhausted, super depressed, lonely, etc. Also made no time to play music or enjoy myself, or socialize for that matter.

-October 2017; During this time I start researching all sorts of potential causes for my persisting fatigue and low-mood/depression and learned about Leaky Gut and Candida overgrowth… “A-HA!” I thought… I was always on a very unhealthy diet; lots of carbs, sugar, caffeine. So I almost instantly made a 180 turn on my diet - almost obsessively and very extreme straight away.. which in hindsight wasn’t very smart. I also quickly started all sorts of supplements. Perhaps this sudden and erratic diet change caused the increase in depression, and conversely, the insomnia that was to come.

-Later this month I only started feeling worse & worse.. to the point of almost complete exhaustion/immobility and depression, thought nothing of it but an indication of just how severe the candida/leaky gut was..

-Also learned about mercury poisoning; had a mercury filling. Made a dentists appointment almost straight away… Well. Lo and behold, that very night the side of a tooth broke of; exposing the amalgam filling in it. Shocked. I had the dentist appointment the next morning.. Well, I could not sleep - the very anxiety of “what if I cannot sleep? What if I have to go to the dentist without having slept for a moment? That would be hell!”.. Kept me up all night, and I had to cancel the dentist appointment. The next day I was completely out of it & destroyed with anxiety symptoms enfolding (as they usually do, if I don’t get a night’s sleep).. that’s happened before- no worries. Well, that next night I could not sleep again! That was a first.. up for 3 days, wow. This persistent fear of not being able to sleep consumed my waking hours, an entire week went like this (3 days awake, 2 days awake, 2 days awake).. I needed to get help, fast, I thought. In retrospect I am wondering if this exposure to the sudden mercury may have actually caused the insomnia? Seems a little farfetched of an idea, but still, I wonder. Since then I have been too scared & troubled to get the broken tooth fixed, as it doesn’t hurt.. I just worry about the mercury exposure.

-Went to the doctor to get help with the onset insomnia. And so the Benzo story for me unfolded.. (see signature). After the first Benzo for sleep I just felt very off - not rested at all, super depressed/sedated/confused. I attributed these effects to simply the sleep deprivation. After looking up the meds online; they said don’t take for longer than 2 weeks.. that is what I told myself; I won’t take them longer than 2 weeks… but I just gotta catch up on my sleep so I’ll just take them every night for like, the coming 7 days or something. Also.. the first night I took Ambien, second night Temazepam, third night.. I was given temazepam, lorazepam, and ZYPREXA (anti psychotic) to “really get some deep sleep” -well, since this night I never felt quite the same.. the knockout from these 3 drugs sent me into a very confused zombie-like state of mind I never quite got out of, I kept taking temazepam (and later lorazepam) nightly to at least be able to fall asleep; still attributing most of what I experienced to sleep deprivation and not the drugs.

Symptoms pre-benzo's:

-Persistent low energy/fatigue not lifted with even nights of 8 hrs sleep (since 2014)

-Frequent unexplained "flu-like" episodes

-Low mood, bordering on "depression" at times (though NOTHING like the anhedonia/complete emotional numbness since benzo use and insomnia)

-White coating on tongue

-Mild, controllable anxiety with the occasional panic attack, DR and agoraphobia

-Acid reflux

-Hard to stay focused, ADD-like brain

-Hypersexual

Symptoms post-benzo's: (never had before)

-CONSTANT DP/DR as opposed to situational

-Full body pain; muscle aches/cramping (now gone)

-Burning skin (now gone, mostly)

-Deep, deep depression, anhedonia and emotional numbness like never before

-Unrestful sleep, almost all of it in dream-sleep

-Complete inability to enjoy all the things I once enjoyed

-Cognitive decline; bordering dementia

-Dizziness; severe disorientation

-Constant restlessness

-Swelling brain

-Almost complete 180 degree turn regarding libido; first- at times I was horny 24/7.. now, I never am

Test results so far (throughout the years)

-Vitamin D deficiency the only result indicating anything

-Mononucleosis infection is present but dormant/not active in my system (could explain the long fever in 2014??)

-2014 to 2018 blood test results show no signs of: Vit B deficiency, inflammations, thyroid issues, anemia, Lyme (though this was a standard test)

-I have not done “more thorough” testing on Lyme, don’t know where to test for heavy metals.

Current candidates I suspect to explain persistent symptoms (beneath or preceding Benzo use)

-Chronic Lyme Disease

-Mercury Poisoning

-Adrenal Fatigue/Burnout

-CFS/ME

-Candida Overgrowth or Leaky Gut Syndrome

-Generalized Anxiety Disorder

-Borderline Personality Disorder

Why I suspect these?

-Lyme: I was bit by a tick in mid 2013, which I discovered only the next morning. About 5-7 months (late 2013, early 2014) after I was struck by a very long and invasive flu, lasting 1-2months, and ever since then had developed an ever-present fatigue that never left in the years to come. I did get tested for Lyme with regular blood tests through regular doctor in 2014 and 2015.. but later I found out that these blood tests aren’t reliable; commonly giving back false negatives.. (or so the internet tells me).

-Mercury poisoning: I have had amalgam fillings in my teeth from a very young age, quite a lot of them. Did have many swapped for composite fillings past few years but I have two remaining; in fact.. one broke off, exposing even more of the amalgam - this actually happened -just- before my insomnia crisis.

-Adrenal Fatigue/Burnout: I don’t know if it’s a real condition, but it seems likely considering the amount of stress I’ve been under for so long from the unsolved anxiety disorder, overextending during work, social & familial troubles, plus loneliness all adding to the stress..

-CFS/ME: I have heard these conditions can come from chronic stress too, which considering my long history of anxiety doesn’t seem too farfetched.

-Candida Overgrowth/Leaky Gut Syndrome: Always had a white coating on my tongue. I’ve been on a lifelong diet of gluten, dairy, sugar, and lots of carbs. Plus a compromised immune system from all the stress, this seems very likely.

-Borderline Personality Disorder: well, ever since I can remember I’ve had pretty significant mood swings. Always pretty sensitive.. and fear of being abandoned. I experienced many phases of high energy, followed by pretty dreary and lengthy lows.. hypomanic?

Conclusion

If the withdrawal process is fully behind me (which I understand may take years..), I don’t want to discover that there was another condition beneath it all; explaining most/if not all the symptoms since my time on Benzo’s.

What I’m worried most about is that below all this is Lyme disease.. because that’s the one that seems to be surrounded with the most controversy/is the most long term/mostly gets progressively worse and is the most costly above all, and you really need to be persistent with special doctors to do the research etc…

No amount of light exercise, meditation, diversion/activity therapy seemed to have had any effects on my complications; mainly fatigue and low mood.

I know all in all this entire story is a bit scattered- well that’s what I am currently. Scattered and very very desperate for answers and solutions and knowing what direction to walk in. I am only 25 and have virtually no quality of life to speak of. I want to at least give it my all before I end up requesting euthanasia further down the line because most of the time I think I prefer death. I have set an artificial deadline for August 24th.

Please, please help. I need your thoughts, insights, experience, knowledge. Anything to help steer me into the right direction.

It sounds as if you're a very sensitive person who has health fears. I know that health fears can ramp up a hundred fold in benzo withdrawal/recovery. I still have them, years after the last dose. They are waning, but very, very slowly. When I'm stressed, they all become worse.

I know, for me, that I can make no drastic changes with my diet because my CNS will go crazy. Nevertheless, I still do it! I'm so gung-ho that I suddenly think that a complete change would be good. This always gets me into trouble because I have a very sensitive nervous system. It sounds like you do, too. Any change you make, it would be good to try it out, alone, before you add anything else. But you're reading this from someone who hasn't done that and has gone down the rabbit hole too many times. It is only in hindsight that I remember these things.

Remembering back when I just moved to a new city, I was so excited, but when I was finished unpacking, I faced an emptiness that I hadn't had before. I knew only one person. It was quite scary. I started to think of death. It took a long time to get acclimated.

Have you ever tried alternative remedies for the insomnia? Meditation? Melatonin? I know not getting enough sleep can really mess up the mind. There was someone on here who had to work and couldn't sleep. I don't know what he took. Some people just wear themselves out until sleep finally overtakes them.

What supplements did you take pre-benzo and how long did you take them? Do you think they caused your low energy (if it isn't from the Lyme)? One time I took St. John's Wort, and I was so very depressed and had no energy. I wasn't taking anything else, so I knew it was that. I stopped it and started feeling better again.

The symptoms post-benzo are classic withdrawal symptoms. Many people in benzo withdrawal/recovery think they might have CFS, Lyme, adrenal fatigue, Candida Overgrowth or Leaky Gut Syndrome, Generalized Anxiety Disorder (I was diagnosed with this one),

Borderline Personality Disorder. Many have changed the fillings in their mouths, afraid that it will cause problems.

I don't think you're done with withdrawal. It may take some time. You fast-tapered off of 9 mg. Valium in three months. For someone who has a sensitive nervous system, that would be too fast. In fact, for almost anyone it would be way too fast.

Have you gotten a second opinion on the Lyme? I was reading this article: http://danielcameronmd.com/lyme-diagnosis-tests/ It sounds as if it's hard to truly make a diagnosis. That would drive me crazy! You can do a search here regarding Lyme by looking in the upper right-hand corner under Simple Machines Forum and put in Lyme. There are posts about it to see what others did. I personally hope you don't have it!

GOOD LUCK!!!

I’m in much the same situation (read signature) so I can sympathise but I have no answers.

I had tick bites and the rash but negative test so Drs not interested.

I now also have spinal and hip problems.

It’s hell.

I really hope that for you it is still withdrawal that is causing the most problems now and that it will clear.

sorry I couldn't read all of your info but it will be a long journey

go see a nutritionist for a very gentle detox via food..on a candida free diet or buy a book that does this and try to cleanse you gut. you may see some improvements over time

you poor thing

shania

Fluxwind,

I am so very sorry for all that you are going through.  If you are concerned about Lyme, you might want to try to get another test through DNA Connexions.  They look for the Lyme DNA instead of antibodies to it, and it's supposed to be more reliable.  They can also test for Lyme coinfections.  I was bitten by a tick in 2012 but, not diagnosed until this year. Previous Western Blot tests were negative.  Getting off the benzos has helped a lot and now I'm able to start tackling Lyme and some other health issues.  My new functional medical doctor thinks she can help me with all these things.  I am also considering stem cell therapy to possibly reset or boost my immune system to better fight these conditions as well.  It is still such a new therapy so I'm doing a lot of research on it.  Are there any functional medical practitioners near you that you could contact?  Best wishes to you. 

Here is a link to an excellent discussion forum on Lyme that I participated on years ago when I believed many of my health problems came from Lyme Good luck

http://flash.lymenet.org/scripts/ultimatebb.cgi