Testosterone replacement therapy led to damage of the central nervous system?

Hello!

 

As mentioned in my introductory post, I am actually here to talk about the damaging and long lasting effects of testosterone replacement therapy, which I begin in all my naiveity approximately a year ago now.

 

The reason I am posting on this forum is that it appears almost conclusive that my CNS took a huge hit from this course of supplementation, and the people around here seem to possess far more knowledge than on any other forum on how delicate a piece of equipment the nervous system is. I really hope you guys can help me a little bit. Well, without further ado, I shall begin!

 

I have struggled with on-and-off depression since hitting my teenage years. Despite this, I tried to lead as normal a life as possible and still possessed a real sense of motivation and took enjoyment in many hobbies, e.g. playing sport, watching my favourite TV shows and because the waves of depression would crop up and regress in a cyclical nature, I never found myself in a dark place for quite long enough to feel the need to really do anything about it. Sometimes my problems would fade away for a while, which would lure me into thinking everything was fine now and that nothing needed addressing.

 

Anyway, during one of my 'down' spells towards the end of 2010, I finally went to the doctor's and explained some of my feelings, and the accompanying symptoms, such as a real sense of malaise, insomnia, and also erectile issues. This prompted my GP to check my testosterone levels and sure enough they were low (around 300 at this point). I had a couple of repeat tests to confirm this was the case and then it was decided that I would go on TRT.

 

A few months later, I was finally cleared to begin treatment (as you know, it tends to take a while for things to transpire when in the hands of most physicians!) I had started University at this point, and was in my first year. This was one of the most streesful periods of my life, as I was pushing myself hard to attain good grades and often found it hard to keep up. In my final testosterone check, before starting on 'Testogel', my levels were at an all time low (70). This was around ten times lower than it should have been for a man of my age (I was 19 at the time).

 

The two most worrying early developments came in the form of extremely exacerbated insomnia and a 'brain fog' that was unshakeable. This was particularly frustrating as I was led to believe that insomnia and poor cognition would be two of the major improvements to come with my treatment.

 

The insomnia was much different to the type that I had pre-treatment, and also the worst bout of insomnia I had ever had. Simply not being able to get to sleep was a problem on almost every night, but the major frustration stemmed from the fact that once I was finally able to rest, I was constantly waking up over and over again during the night. A huge increase in dream frequency also occurred, and these dreams weren’t of the usual variety, they were less outlandish and more ‘real’, almost mirroring the feel of the kind of dreams you experience in the morning once you have woken up but are still resting (lucid).

 

The 'brain fog' was very disturbing. As a University student, I found it more than a bit difficult to complete assignments to any kind of decent standard, because processing thoughts that were once so simple because a giant hurdle. To elaborate further, I'm not necessarily talking about technical subject matter related to my assignments but, for example, processing the right English to use, which was so worrying as this had always been a major strongpoint for me. This could present itself either in writing or in speech, as if the required word was so close but never quite attainable. This caused particular embarrassment in conversation with others when I would trail off completely in the middle of sentences, kind of forgetting the point I was supposed to be making or not knowing how to articulate myself.

 

The ‘fog’ was accompanied by a strange sense of detachment from one’s surroundings, which I now know to be ‘depersonalization/derealisation’. Pre-TRT, I could get spaced out and in my own little world, no doubt because of the depression and fatigue brought on by the condition itself, but while I was in my own world I still had the capability to think fairly deeply. This time, however, I found myself often spaced out and tired, but no longer with the capability to think about anything with any depth. I became stuck in a permanent ‘neutral’ mode where I felt no highs or lows, there simply wasn’t the brainpower there to think about anything with any depth. My vision also suffered; I could still read just as well as beforehand but there was this sensation of being slightly cross eyed present, as well as a total inability to focus. I felt there was a metaphorical ‘barrier’ between myself and other people. For example I could be sitting on a bus, sub-consciously listening in to conversations going on around me, but unable to follow any of what was being said. Drifting through life on complete auto-pilot sums it up well.

 

My concentration was non-existent at this point, for example I could be watching a TV show and not be able to tell you much at all about what’s going on plot wise, while in a similar vein my memory recall became very sub-standard (if I heard a really funny joke while watching TV then recalling that joke minutes later was impossible).

 

Also of note is that I experienced daily headaches while on the gel. These were sometimes your regular type aches, but more often than not it was a ‘vice’ like grip, where my head felt very pressurised and heavy. They could occur at any time of the day, but the ‘vice’ like headaches seemed to occur more at night. Bright lights would exacerbate this kind of headache.

 

What made this all so confusing is that my labs after having applied Testogel showed improvements. I wasn’t too worried at first because I thought aromatisation into estrogen (which can occur in some cases) was making me feel so bad and could be remedied, but this proved not to have been the case.

 

For the first days of treatment, I also experienced bouts of shakiness, typically whilst eating dinner. Despite the complete shortage of quality sleep, I felt extremely ‘wired’ physically at times, particularly in the evening (kicking in at around 7pm and continuing through until the next morning).

 

After five weeks of this, in which I was constantly reassured that “this was all part of my body getting used to the gel” (despite my endo never having seen this in any other of his patients), I decided that the only option was to discontinue supplementation. At this point, I felt calm about things as despite all the physical symptoms, I was totally numb emotionally due to the DP. Nothing fazed me as I was living in a dream world. I figured that in a little while everything would be back to normal. How wrong I was! The real problems began after I removed the testosterone completely from my regimen (the medical consensus seems to be that there is no need to taper off testosterone, even though it does impact on the CNS).

 

Where once I felt no emotion whatsoever, I suddenly became an absolute mess. I would break down and cry for no reason and felt that I was losing my mind. This was accompanied by the emergence of some very new strange physical symptoms – muscle pain (often between my shoulder blades), the feeling of blood pooling in limbs (e.g. build-up of huge pressure in my calves, weakness in arms (once there was actually a pronounced ‘dip’ in one of my arms, quite possibly from severely reduced blood pressure, and my heart rate sometimes dipped dangerously low after periods of uncontrollable anxiety (down to the mid-30s).

 

Other puzzling symptoms emerged too. Colours became noticeably dimmer and would actually fade into a cloudy looking mist if I tried to focus on someone for too long during conversation, there was a peculiar feeling behind my eyes which gave them a wide-eyed stare if I attempted to focus on objects (e.g. the television) and then about a month after ceasing supplementation the inexplicable adrenalin rushes began.

 

I first noticed the adrenalin rushes on the way back from a game of golf, when a favourite song of mine featured on the radio. At this time it seemed kind of exciting and fun, but it soon became a hugely prominent feature of my daily life that would inject a great sense of fear into everything I did. I would be walking outside my home, and if there was any kind of unusual stimulus, e.g. a car beeping its horn or a person sneezing, there would be a massive rush of adrenalin throughout my body which seemed to communicate the message that something horrible was about to occur, as I couldn’t help fusing with the physical feeling despite being fully aware that everything was fine. This became such a typical part of daily life that events such as a bird tweeting, or occasionally even a family member speaking when I wasn’t expecting it would send waves of fear spreading through my body like a virus.

 

Soon after, food sensitivities began. Previously, I had been able to eat anything I wanted without a care in the world. Suddenly, 99% of what I was eating exacerbated my symptoms to the nth degree. ‘Classic’ sensitivity signs would display themselves, such as abdominal distension/discomfort, often after just a few bites of food, tightness and pain in chest, difficulty breathing etc. but far more concerning were the mental symptoms that rose within me. My tendency to startle became heightened, my depersonalization would intensify after just a few mouthfuls of food, colours faded and dimmed and sudden long bouts of crying ensued. Oddly enough, my brain seemed much more sensitive than my stomach. The neurological reactions felt so chemical, and to this day I refuse to believe any doctor who dares insinuate that these symptoms are all psychological.

 

To cut a long story short on the food front, I began to believe that I had all kinds of GI diseases, including candida/leaky gut, parasites etc. and also was tested for food allergies, but these all came back negative (surprise, surprise!) In the end I had to whittle down my diet to the foods that would cause least bother, and henceforth I have pretty much been eating the same half a dozen foods for nine months straight. I had tried re-introducing foods every now and then, but it always ends in disaster. I suffer physically and emotionally for 7-10 days if I make the tiniest slip, before slowly returning to equilibrium. Sticking to my rigid diet helps me improve at snail’s pace (maybe 2% a month) but I never come that close to full recovery. It took almost a month to get back to equilibrium when I had the audacity to try half a banana just after Christmas! 

 

Here is my current diet:

 

Breakfast – Skinless, free range chicken breast, spinach, peas, 3 brown rice cakes, coconut oil.

 

Lunch – Quinoa, avocado, more chicken (this recently replaced canned tuna, as this caused DP to intensify, as well as increasing my anxiety).

 

Afternoon snack – Mussels (recently replaced brown rice protein/pea protein, more of which I will explain in a bit), cucumber, spinach, carrots.

 

Dinner – Salmon, asparagus, carrots, 3 brown rice cakes, pumpkin seeds, coconut oil.

 

Recently I have discovered that any type of protein drink is poison to my body. It ratchets up the DP greatly, puts me into fight or flight mode, causes mental confusion and a feeling of fullness and ‘thickness’ in my head and brings back visual disturbances (which have reduced over time).

 

My big epiphany on the protein shakes was learning the evil of high concentrations of free glutamates (which is also why I canned the canned tuna). I am seeing some benefit of dropping the shakes already, though I have been fooled into thinking that recovery is gathering pace too many times before to get my hopes up.

 

After making so many changes, I was absolutely dismayed to learn that digestive enzymes can also wreak havoc with the glutamate sensitive individual, due to hidden free glutamate that arises through the process. The dilemma is that I have had to take enzymes (along with probiotics and, more recently, peppermint oil) in order to absorb more of my food and regain weight, given that the digestive complications and permanently loose stools that surfaced post-TRT (around May last year, the same time as adrenalin kicked in) caused sudden weight loss. I had always found putting on muscle and weight to be difficult (this is part of T deficiency) but my spasmodic digestive tract resulted in a weight of just under 7st (approx 98lbs) many months ago. I am pleased to say that I am now back up to just under 8st, but any more weight gain is near enough impossible given my dietary restrictions.

 

The other dilemma revolves around carbohydrate intake. As a severely underweight man, it is essential to get as many of these as I can. However, this food group is a nightmare for me. I feel drained of all energy and absolutely out of it after I eat a carb heavy meal, even if it is balanced with a lot of protein and fat. Surprisingly, my one blood sugar test came back normal, though this was taken after I had already adjusted my daily diet to what it is now (about 165g protein, 140g fat and 120g carbs a day) and also after a 12 hour period of fasting undertaken just after my protein/fat heavy dinner.

 

The trouble is that I feel beaten up after lunch (quinoa, avocado and chicken) as this meal contains around 50g carbs in total. It shouldn’t spike my blood sugar too much as I eat 2 large avacados and a healthy supply of chicken with it, but for whatever reason I feel like dozing for hours afterwards as soon as I have put my knife and fork down. I honestly don’t feel as though I can increase my protein fat intake further and cut back on carbs though, particularly as consuming 165g protein a day whilst weighing just 110lbs most likely puts me at risk of liver and kidney trouble.

 

One post-TRT symptom I forgot to mention earlier is dizziness. Early on after quitting supplementation, I often felt on the verge of passing out if I went for a walk. Maintaining a straight line was tricky and the sensation that best described my exercise intolerance was that it literally felt as if I was fighting against a force-field to move forward at times.  My worst feelings of impending doom often came on in the middle of normal short walks, which was baffling. So many ‘breakdowns’ occurred if I tried to push myself at all in the early stages of life without testosterone gel. Later on, as my exercise intolerance improved (which only happened once I changed my diet), these emotional episodes occurred after more gruelling types of exercise, e.g. lifting small weights for slightly too long.

Sorry to flip-flop back to food for a minute, but I should also mention that many of the foods that would cause weird chemical reactions in the brain were ones considered to be healthy, e.g. cruciferous vegetables and fruit. Broccoli was one of the worst foods actually, I felt an odd shift in cognition and sense of impending doom after only a couple of bites of the stuff.

 

Last but certainly not least, I am now unbelievably sensitive to medication. I feel borderline suicidal after taking vitamins, even just taking 100% RDA of Vitamin B, C etc. Even taking more than two digestive enzymes can cause a complete loss of control.

Few, that was a long post! Thank you for bearing with me, and many apologies for the rushed nature of the writing, I’ve really been pressed for time today and some sections are copied from postings of mine from another forum quite a few months ago.

 

Time for my questions for you good people:

 

1. Are many of these symptoms consistent with those of members on this website? In particular, I would discuss food issues with anyone who has them, even more so if they have experienced incredible chemical changes in their cognition during/after they eat.

 

2. Is suicidal inclination after consuming foods/vitamins that don’t agree with you recognised by anyone here?

 

3. I am so scared that these food sensitivities will be permanent. Once the CNS repairs itself, do these aversions usually resolve, with possible exceptions such as gluten or dairy?

 

4. The extreme difficulties with every protein shake I have tried (whey, brown rice, pea protein) has led me to believe that the main cause of my problems lies in an imbalance of glutamate-GABA receptors, both in brain and in intestines. Is there any way to prove this?

 

5. Would there be any benefit in seeing a neurologist, or, given that I am sensitive to medication, is there not really a lot I can do except wait for my CNS to heal?

 

6. Blood tests and an MRI scan I had have both come back normal, leading to doctor’s claiming that this whole ordeal is all mind-oriented. Are blood tests typically useless as detecting issues with the nervous system, as it is more generalised?

 

7. I fear that my current diet will keep me in the repetitive spin of feeling decent after breakfast and dinner but tired and dizzy after lunch due to the larger carb content. As the symptoms after lunch aren’t that severe, and I need the carbs due to the aforementioned weight issues, would use advise me to stick with what I’m doing, and realise that once the CNS recovers this will no longer be a problem? Furthermore, could this carb intake be stopping recovery from transpiring, or do food choices most likely only have the power to slow down or speed up recovery, rather than actually stop it from happening at all (if diet is bad?)

 

8. My digestive enzyme (Source Naturals Daily Essential Enzymes) has lipase, acid stable protease etc  (nutrients table below):

 

Supplement Facts for 500 mg Capsule

Serving Size: 1 Capsule

Amount %DV

To break down protein:

Vegetal Analog of Pancreatin 286 mg 28,625 FCC

Acid-Stable Protease 12 mg 785 FCC

 

To break down fats:

Lipase 125 mg 375 FCC

 

To break down carbohydrates:

alpha-Amylase 52 mg 630 FCC

Amyloglucosidase 12 mg 2 FCC

 

To break down fiber:

Cellulase 5 mg 100 FCC

Hemicellulase 3 mg 325 FCC

To break down milk sugar:

Lactase 5 mg 40 FCC

 

I fear that the free glutamate content may harbour my chances of recovery. I am sure there are many others here who need to take digestive enzymes, and if so, do you believe the free glutamate content is substantial enough to be excitatory? I only wonder about this given my negative reaction to an increased dose of the supplement. My hope is that all enzymes do are potentially extract more free glutamate from the foods already being eaten, rather than creating more free glutamate itself.

 

9. I once tried a herbal tea in an attempt to boost GABA, but my anxiety and irrationality went through the roof.  Other attempts to take ‘relaxing’ herbal concoctions have had similar paradoxical effects. Does this mean that GABA supplementation probably wouldn’t be for me?

 

 

I don’t mean to give the impression that all my problems are food related, it’s just that this issue is dominant right now given that the entirety of my day is based around meal times, rest need after eating, very particular dietary needs etc. It is only natural that my social life has badly suffered, and I am doing my best to create some sense of normality.

 

Once again, sorry for the rambling and repetitive nature of much of this post, I’ve really had to get this out as soon as possible due to pressing matters. I am truly grateful that I have been allowed to post here despite having problems not related to benzo usage, and in no way do I believe my experience comes close to what so many poor souls on here have been forced to deal with.

 

All the best to everyone’s health.

 

United.

 

 

 

 

 

Also, I should mention that I am taking 8 of those enzymes a day - 2 at every meal and 2 with my afternoon snack.

 

Thank you!

How did they test your testosterone levels?  Was it via a blood test or saliva testing?

 

fg

I've never had any testosterone issues that I know of, but I share a lot of the same symptoms as you.  Carbs make me crash, even though my blood sugar will read normal.  I do have hypoglycemia, but it seems to come and go.  Early in benzo withdrawal I didn't know why I was so sick, and started going to every doctor in town trying to figure out was wrong with me.  I ended up going to a gastrologist, who put me on a digestive enzyme called Creon due to apparent fat malabsorption.  It's a pharmaceutical grade enzyme, and even though I had bad reactions to over the counter enzymes, he convinced me to give this one a try.  I took a dose of it with lunch the next day, and got really dizzy and spaced out feeling.  One of my benzo withdrawal symptoms early on was dizziness, lightheadedness, and heavy legs after eating.  But the feeling I got from the enzyme was different.  Like a much more exagerated version of my typical post meal symptoms.  After taking it, I became intolerant to supplements, and then most vegetables(cruciferous and carrots are the worst), then it was fruit, followed by nuts, rice, potatoes, corn, and many others.  Like you, my food sensitivity reactions began after just a bite or two.  The reaction I get from these foods includes worse than usual fog, anxiety, dizziness, feeling more detached than usual, and sometimes I'm unable to make sense of things.  The food that I am able to eat I have to rotate and not eat it too often, with the exceptions of peanut butter and bread.  Oddly enough, I'm gluten sensitive, but it doesn't cause this type of reaction.  Like you, I feel like this will never end and I will never be able to eat healthy or conquer some of the health problems I had even before benzo withdrawal.  There doesn't seem to be too many of us that have this amount of food sensitivities, but I have managed to speak to a couple. 

 

It's good that you are avoiding gluten and dairy already.  I don't have any answers for you as it seems just as puzzling as what I am going through.  Like you I think that the benzo receptors in my gut are really messed up, and I think the digestive enzyme had a lot to do with it. 

 

Did your doctor ever come up with any reason why your testosterone was low to begin with?  Figuring this out may be a clue.  I doubt that it was low for no reason.

I have used benzos for 20 years. I am benzo free for 40 months now. During the later eight years of my benzo use I also took hormone replacement therapy (HRT)regularly on self medication basis in heavy doses. After reading your story I have started thinking that may be much of my problems are due to HRT in addition to abuse of Benzo. I am still surviving after 8 long years of HRT and 20 years of Benzo abuse and I am 53 years old.

I found out that I didn't need testosterone therapy after taking a bloodspot and saliva test.  It was interfering with my sleep and causing "'roid rage".  After discontinuing it (with my doctor's approval) my sleep eventually returned to normal and I feel much better now.

 

fg

Thank you for all the replies so far, much appreciated.

 

How did they test your testosterone levels?  Was it via a blood test or saliva testing?

 

fg

 

It was via a blood test. I have twice had saliva testing done for my adrenal glands though (4x per day). The first time this was performed, I was still eating my regular diet (after having come off TRT) and the results were high across the board, just over the reference range on three of the four samples, while the other reading was four times above the highest point of the reference range. This wasn't too surprising though, as that particular reading coincided with an 'emotional episode' after having walked for slightly longer than I could handle at that time.

 

Did you come off TRT immediately, or was it a gradual withdrawal? All literature I have read indicates that an instant cessation of therapy is fine, but I do wonder whether this is always the case given that the CNS is altered through use. Anyway, I'm pleased that you are more stable after the 'roid rage', that must have been pretty scary!

 

I have used benzos for 20 years. I am benzo free for 40 months now. During the later eight years of my benzo use I also took hormone replacement therapy (HRT)regularly on self medication basis in heavy doses. After reading your story I have started thinking that may be much of my problems are due to HRT in addition to abuse of Benzo. I am still surviving after 8 long years of HRT and 20 years of Benzo abuse and I am 53 years old.

 

Sorry to hear of your issues Neil. Have you improved at all since going totally med free, even if it has been a slow ride?

 

I've never had any testosterone issues that I know of, but I share a lot of the same symptoms as you.  Carbs make me crash, even though my blood sugar will read normal.  I do have hypoglycemia, but it seems to come and go.  Early in benzo withdrawal I didn't know why I was so sick, and started going to every doctor in town trying to figure out was wrong with me.  I ended up going to a gastrologist, who put me on a digestive enzyme called Creon due to apparent fat malabsorption.  It's a pharmaceutical grade enzyme, and even though I had bad reactions to over the counter enzymes, he convinced me to give this one a try.  I took a dose of it with lunch the next day, and got really dizzy and spaced out feeling.  One of my benzo withdrawal symptoms early on was dizziness, lightheadedness, and heavy legs after eating.  But the feeling I got from the enzyme was different.  Like a much more exagerated version of my typical post meal symptoms.  After taking it, I became intolerant to supplements, and then most vegetables(cruciferous and carrots are the worst), then it was fruit, followed by nuts, rice, potatoes, corn, and many others.  Like you, my food sensitivity reactions began after just a bite or two.  The reaction I get from these foods includes worse than usual fog, anxiety, dizziness, feeling more detached than usual, and sometimes I'm unable to make sense of things.  The food that I am able to eat I have to rotate and not eat it too often, with the exceptions of peanut butter and bread.  Oddly enough, I'm gluten sensitive, but it doesn't cause this type of reaction.  Like you, I feel like this will never end and I will never be able to eat healthy or conquer some of the health problems I had even before benzo withdrawal.  There doesn't seem to be too many of us that have this amount of food sensitivities, but I have managed to speak to a couple.

 

Sorry to hear of your experience too Caddo, it's a very confusing sequence of events isn't it? It's comforting to find someone else in the same boat though, as it strengthens my firm belief that none of this is psychological, despite what sub-standard doctors may tell me. Excuse my ignorance, but it was my assumption that with hypoglycemia blood sugar would always rise and fall after carb heavy meals, or is there a subtle difference between the two?

 

Did the gastroenterologist run any tests to look for digestive malfunction, e.g. through an endoscopy? I've always shied away from going for a test like this, as I believe no physical damage to the intestine exists, but rather, as you say, the glutamate-GABA receptors in the brain and stomach are out of whack.

 

I should really start trying to rotate my foods, as you are doing. The trouble is I'm not sure there are enough foods I am able to eat to form a workable rotation plan! Eating the same foods everyday for nine months is starting to drive me insane though, I might just give in and add some items that I feel are at least bearable to consume. I have to be so careful though because of the irrational inclinations that overtake me so quickly after eating. Cruciferous veggies are a nightmare, I've never felt as bad as I did when I ate broccoli many months ago, the chemical changes happened ridiculously quickly. I've definitely become intolerant to carrots recently, probably because I'm eating around 11oz of them a day. I'm keeping them in for now only because they don't give rise to emotional issues.

 

What do you do about carbs then? The conundrum is that on a diet that's pretty much all protein/fat, energy levels with certainly be more stable and the mind will be clearer, but it is pretty much impossible to take in 2000-2500 calories a day in this way, without ingesting ludicrous and potentially harmful amount of protein.

 

Which foods are your 'staples' at the moment; the most easily digestible and least emotionally taxing? It would be great if you could at least handle brown rice, it is usually well tolerated though the insoluble fibre may be problematic. Wholegrain rice cakes work quite well for me.

 

How long have you been off benzos now?

 

Apologies for all the questions Caddo, it's just rare to find someone who gets this! 

 

 

 

Did your doctor ever come up with any reason why your testosterone was low to begin with?  Figuring this out may be a clue.  I doubt that it was low for no reason.

 

The doc just labelled it as 'secondary hypogonadism', which basically means that they don't know what the reason is. I have a suspicion that it may be due to growth hormone deficiency though, as I was born almost three months prematurely and am very underdeveloped physically (lack of muscle mass). Unfortunately, IGF-1 levels aren't tested in the UK, though I may look into getting this done privately.

There are actually two types of hypoglycemia.  One involves low blood sugar between meals, and the other, which is called reactive hypoglycemia, occurs after eating a carb heavy meal.  In reactive hypoglycemia, a high amount of carbs causes excessive amounts of insulin to be released, which in turn causes the blood sugar to drop too much.  I actually experience both types, but the low blood sugar between meals comes and goes.  I had a glucose tolerance test done which involved drinking a "soda" that had an extremely large amount of sugar in it.  They had to cut the test short because my blood sugar got so low after drinking it.  This is how I know I have reactive hypoglycemia.  But again, carbs will often make me foggy and tired, even though my blood sugar is reading normal. 

 

I did have an endoscopy performed, and they took a couple of biopsies in the process.  It came back negative, except that my thoat showed signs of acid reflux, which I have only ever experienced while sleeping.  I have woken up several times over the last ten or so years choking from it.  Apparently there is something called acid reflux.  I think it had more to do with how terrible I was eating back then.  I'm not eating much better due to my lack of dietary choices, but I'm at least avoiding fast food for the most part.

 

I had a hard time rotating my foods at first.  I had developed intolerances to all meats, along with everything else.  After avoiding meat for a couple of weeks I was able to start rotating it.  While avoiding it, though, I was having a hard time finding anything to eat.  My meals were often beans and toast.  I was even having to rotate the beans, but luckily there is a large variety of those.  Beans are actually hard on my stomach, so it was a difficult couple of weeks. 

 

As for carbs, bread is my main source.  Sometimes I will have some English peas or beans, but again, beans are hard on my stomach, so I usually just stick with bread.  I am gluten intolerant, but I'll have to stick with it for now.  If you want to try a low carb diet, you may want to look into the Paleo diet.  You will actually find it easy to get 2000 calories and then some on this diet.  It isn't cheap, though, and when I tried it for a while I started getting gallbladder pains, and this was also when I became intolerant to meat.  It would actually be difficult to rotate foods on this diet also.

 

My staple food is actually peanut butter sandwiches.  I eat two for breakfast and sometimes one or two at night.  I usually have to eat something before bed so I can sleep.  So far, bread and peanut butter seem to be the only things I don't have to rotate.  I don't know what brands you have, but I can with 'Peter Pan No High Fructose Corn Syrup'.  When I made the switch to this from regular peanut butter I noticed an improvement in the way I felt.  I don't like the idea of having all that vegetable oil, though, so I'm about to make the switch to all natural peanut butter.  Other than that, I rotate between pork, chicken, beef, and different varieties of fish.  Although, I've noticed if I eat fish too often, even rotating the types of fish, I have a harder time falling asleep.  I'll usually jolt awake about ten times as I'm dozing off before finally falling asleep for good.  I don't know what it is about fish that does this, but I gave up on trying to figure these things out a while ago.  I actually can't handle brown rice.  That, along with white rice, is one of my biggest food sensitivities.  That started when I decided to go gluten free again, and I was eating a lot of rice, potatoes, and corn products.  Withing a couple of weeks I became sensitive to all three. 

 

I've been off benzos completely for a year now.  Before then I was still taking rescue doses rather frequently because I still didn't know that it was benzo withdrawal that was making me sick. 

 

I forgot to mention that I am also sensitive to supplements of all kinds.  Even before benzo withdrawal there were many that I couldn't take. 

 

Your diagnoses is interesting.  If you can get your IGF-1 levels tested you should definitely do it.  If you do, please let me know what you find out.   

 

 

I also wanted add that once, before benzo withdrawal, and again once early in withdrawal, I ordered some at-home adrenal function tests.  Both came back showing normal cortisol, but my DHEA levels was off the charts high.  I have never been able to get an explanation for this, other than my DHEA is responding to stress or trying to compensate for something else being low.  I don't know if this has any signifacance to anything, but I thought I would throw it out there.

Thank you kindly for the new information Caddo. I don't have time to respond to what you have written in full at this moment, but I am going to PM you my email address, and if you like we can discuss this pressing matter in more detail.

 

It's hard to find someone who shares the emotional sensitivities and DP/DR after eating, so with a bit of luck we can pick each other's brains a little bit and try to come up with solutions!

 

If you are interested, I have found this person's account of food sensitivities and strange chemical symptoms after coming off of medication:

 

http://www.non-benzodiazepines.org.uk/ativan-anxiety.html

 

Some food for thought there (sorry, hard to resist!) 

Thank you kindly for the new information Caddo. I don't have time to respond to what you have written in full at this moment, but I am going to PM you my email address, and if you like we can discuss this pressing matter in more detail.

 

It's hard to find someone who shares the emotional sensitivities and DP/DR after eating, so with a bit of luck we can pick each other's brains a little bit and try to come up with solutions!

 

If you are interested, I have found this person's account of food sensitivities and strange chemical symptoms after coming off of medication:

 

http://www.non-benzodiazepines.org.uk/ativan-anxiety.html

 

Some food for thought there (sorry, hard to resist!) 

 

Thanks for the read.  I hope I don't end up not ever being able to take supplements again. 

 

I'll send you my email address.

Hi United.  I came off of Testosterone (200 mg. per day - a very high amount) pretty abruptly when a saliva test showed that my levels were almost 10,000!  I think I took a lesser dosage for a day or two after that and then stopped.  It turns out that I never needed testosterone after all.  I relish the sleep I am now getting and the fact that I don't have the "'roid rages" anymore.  I guess those side effects are one reason it is a controlled substance.

 

I am now very leary of hormone therapy unless I know it is definitely needed and is properly tested for.  My experience with testosterone was horrendous.

 

At any rate, I hope you are doing better.

 

Wishing you well...

 

fg

 

Hello all

 

Hope this discussion still activate.

 

I've never had testosterone replacement therapy, but for some reasons I also suffered from those strange symptoms like United.

Especially insomnia, brain fog (all same with your situation elaborated)( concentration was non-existent), weight loss.

 

For short, I'm on benzo for almost 10 years and those strange symptoms appear 4 years ago.

First, sexual dysfunction, loss of libido. Then a year later, loss weight, fatigue, loss muscle. 2 years later, poor cognition, brain fog.

After all these, I was try to find what happen with me, went to many kind of doctors, but no any abnormal.

 

Then few months ago, I went to endo and I was went through testosterone levels checked, it came out low (230).

After MRI, no any abnormal with pituitary. Endo told me to wait for couple of month for re-test.

 

If T still low, I may have to go through TRT, which used to be the last straw before I read this post. 

 

Just wonder which way to go when time comes. 

 

 

 

Hi United,

 

I know it's been a few years since you posted this but I just came across it recently, when I did a search to see if anyone else has had trouble with TRT and benzo withdrawal. I'm wondering how you were able to resolve this horrible reaction to testosterone.

 

I was prescribed TRT when my lab tests showed low levels over 20 years ago. I have been off benzos for over two years. I noticed that I was reacting to my T-shots shortly after stopping the benzos and at the advice of my urologist I stopped the testosterone planning to resume when I was further along in recovery. I have tried reintroducing it three times and had to stop every time after a few weeks because my body would go nuts. This most recent time I stopped after 25 days on a very low dose and I have had terrible anxiety after stopping, like nothing I've experienced before. It's been six days and I've had a little improvement but my symptoms are still pretty bad. I can't believe how similar it is to benzo withdrawal! I eat really well and exercise daily so that's not something that's contributing to it.

 

Have you been able to get your testosterone back to normal levels. Has anyone ever been able to explain to you why you reacted the way you did?

 

Anyone else reading this and has experience and/or knowledge about this, I'd be grateful to hear it.

 

Thanks,

Andrest

 

Apparently im going through the same exact thing. Stopped TRT about 6 days ago and the last two nights ive gotten no sleep and major anxiety is full force.

 

Was on Androgel for low t for about two months.

 

Its the only change ive made so im certain its what im experiencing also.

 

Andrest how are you doing? And how long did you experience these symptoms after stopping the trt the last time?

My testosterone is low too and endocrinologist wanted me to start a cream; I'm glad to have found this thread b/c I certainly don't need more hell on top of what I"m already experiencing...

I've been on TRT for the better part of a year now as well (approx. 75mg Cypionate per week). My Testosterone was very low and it was decided that I would be put on TRT. I haven't read anywhere that TRT damages your nervous system but will do some research. I've tried to come down off of it because I was very high so my endo reduced to half of the dosage about two months ago and my total T became very low again. So she upped it by 50% to see if we can find an in-between. I know you should not come off of TRT therapy immediately / CT. Especially if you have been on it for awhile.

 

There are lot's of people on hormone therapy that thrive. Because if you are not producing the right amount on your own, you basically have to be on therapy or suffer greatly. You also need to get your levels checked regularly.

 

The symptoms you describe that you are attributing to TRT are hard for me to connect with. Only because those are basically the same symptoms you get from Benzo withdrawal (theoretically).

 

I will do more research. But if this is prolonging any facet of my withdrawal, then I need to do something about it. But I also don't want to mess too much with my hormones either at this point.

 

 

I understand; I'm probably not going to treat it while in w/d....having too many symptoms already...I'm a female so wondering why I would need to supplement anyway though I know males and females both produce it.

exactly. what therapy is used for females?

I think TRT was what started my spiral into how i ended up on benzos in the first place.  Last fall i decided to try TRT.  I think i was on it for maybe a few months.  I admittedly was not consistent with taking my shots.

 

However by the beginning of January this year, i started to develop weird symptoms.  It started with minor brain vibrations.  Like very low and almost undetectable until i was in a quiet place or about to go to sleep.  Then i started to have constant hypnic jerks when falling asleep.  Right at the moment i would drift off, i would jolt awake with a rush of adrenaline.  This of course progressed into full blown health anxiety and subsequent panic attacks.  It went on a full month before I got prescribed an SSRI and the Ativan.  Now, I am course dealing with coming off all the drugs they put me on.

 

I have a strong suspicion it was the TRT that was causal.  But i have also been taking weekly corticosteroids (topical) for nearly 2 decades for sebderm, so that may have played a role as well...

 

Regardless i stopped the TRT.

I require Testosterone treatment now. I've already checked the Nugenix reviews https://www.nugenixopinions.com/ and I'm interested in their booster. But having read your posts and found out about your experiences, to be honest, I'm a little frightened. Thanks for sharing your experiences.