My Story - 21 and dealing with side effects

do those neurological tests measure gaba receptors and dopamine levels?
i’d like to have them done but being a student…im not sure if my funds could run to all the tests i want

Most of what I’m going in for in the coming days is mainly to confirm that my brain is not damaged or harmed. To answer your question, yes somewhat… measuring brain activity in the EEG and the Neuropsych exam (testing memory, attention, concentration, attention, ability to respond, judgement and reasoning) will shine light on if I’m deficient/abnormal in those neurotransmitters. As has been said before, the best way check levels of neurotransmitters is via spinal tap, as urine or blood is known to be less than accurate.

These tests are pretty expensive, but because I’ve been sitting around unable to engage myself in activities or get things done due to my less than responsive mental state, he’s checking all ends.

Well I’ve had 2 of 4 test results back (MRI, carotid doppler) and I check out with no visible problems there. Just had my EEG and neuropsych evaluation, and these delve deeper into my complaint of cognition impairment. During the latter I noticed more-complex logical problem-solving was not as easy as it should be.

At this point, my neurologist has been very helpful. He referred me to a Psychiatrist he trusts to check out more of the neurotransmitter department (w/ my confusion, cognition probs, insomnia, small iridescent spots in vision etc), and I’ll probably see about a sleep evaluation with this guy to get a GABA agonist. I passed the suspicion of my imbalanced neurochemicals inducing paranoia and fear thus stressing my adrenals, and my Neuro concurs that the likelihood of a neurotransmitter imbalance is significant, especially since I’ve been cleared in these neuro tests.

Meanwhile, I’ve been trying to take care of myself and, while sleeping right has been an issue, I have gotten maybe 15% better than when I started off. Before I could hardly converse with anyone cohesively and directly, but now I’m ironing that out and getting points across easier. My body has really been messed up in light of this ordeal, my muscles are tight, weak and ache, especially in my back. Makes walking and balancing more of a trial than a gift. I used to be someone who loved exercise and the benefits of anerobics, but it hurts me rather than helps me now.

I’ve had chronic fatigue, brain fog, muscle pain/weakness, even swollen joints, so I can imagine adrenal fatigue has manifested for some time in me. The next step will be to get this diagnosed rather than suspected, and tackle the mental issue to see if its only a byproduct of tired adrenal glands, or something else. I do feel like I’m getting to the bottom of this issue though, and I know a turnaround is possible. I just hate having to be patient.

Gah, these posts always end up being too long… :laughing:

So basically, I’m being treated psychiatrically for anxiety and soon to be sleep. I would say my main complaints now are:

  • Fibromyalgia/CFS
  • Difficulty falling asleep/waking up weak
  • Swelling slightly b/w legs
  • Loss of sex drive/function
  • Visual issues
  • Cognition issues/Brain fog

As you can imagine, this has really crushed me, but I’m doing a day program currently to remain active until we find a solution to cure my mental sides, so I don’t just lie around the house feeling weak. The entire symptomology leaves one feeling helpless and suggestible. I’ve gone down the adrenal fatigue route and no one is having it; blood tests don’t give doctors reason to look further, they say, but I’m sure that my adrenal gland has a role in this too, since its my stress response and I’m under plenty of that.

Now, I’m going back to the uro for a swelling I finally decided was not normal between my legs and to check and see if this is playing a role in my problems. In addition, I’m trying to find the right medication for my mental sides. Of course, having met someone I’ve taken a liking to isn’t making the frustration any easier, hehe

Just wanted to let everyone know… feel free to make remarks.

check YOUR CORTISOL levels throughout the day with a saliva test.

GET off the Antidepressants.

Do you feel like crap throughout the day? or just mornings and it gets a bit better later in the day?

I was 21 when i quit now im 22, i took propecia for almost 3 months.
Its been almost 11 months since i stopped propecia.
Its a very long road to recovery and its not easy
I do feel about 58% better.

I got off all antidepressants, sleeping pills that doctors gave me they pretty much had no idea but just kept giving me pills. I stopped drinking pop, now drink only water,

Antidepressants helped a bit but made my hair fallout even faster.
Some also screw with your hormones even more.

I am currently dealing with very high estraidol and low cortisol on the morning. – testosterone all out of wack - these are all relate to one another. I found a doctor that specializes with adrenal fatigue and keeps giving me the saliva tests - i don’t have a problem with them.

Biggest problem i have is brain for in the morning (due to low cortisol)
and high estraidol.

I will give it another 6 months, before i seek an endo.

Patience…

razor your brain fog comes and goes or is it constant?

Comes in the morning and goes away towards the night.

Some days if i wake up really really early its gone, but then im a bite more tired int he afternoon.

thanks razor. I’ve needed emotional bolstering as well as physical relief due to this, mainly because

  • its hard to express myself and
  • no one believes this happened.

I do need someone who specializes in AF. They took normal sodium, magnesium and whatnot and cleared me, treated me as a psych patient.

gonna persevere though… we all should network best we can. gotta talk more about this damage.

nah, I generally feel better in the morning or afternoon than I do at night time. I have chronic fatigue issues where I’ll wake up mentally improved (but still fogged), physically weak, and it gets worse from that point.

Dont give up it will get better and better.
i now have one or 2 days of the week wheni feel like crap and the rest i are ok.
I managed to keep 2 jobs while on this crap and at one point also went to school - i had fatigue - lots of red bull and 5 hour energy kept me going (which i don’t recommend) --> adrenal fatigue.

some days i almost gave up i was so tired. I made it this far and it is getting better.

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good job man, glad you made it that far. Getting properly diagnosed with adrenal fatigue and all; all I’ve had so far is a hard time with everyone since they claim to have done adequate blood test to check for AF… in reality you need the whole day’s spectrum of values. They didn’t test anything in truth, otherwise I’d post it.

I too have the “so tired I feel like falling over” syndrome, of course all I get is “do more exercise and push yourself - its because you haven’t done much exercise” etc. Lots of nonsense from people.

I just need to find the right doctor for me. Thanks for the post

My GP looked at my swelling between my legs and said it was my pelvic floor that was enflamed and swollen, and diagnosed constipation and IBS. Probably due to my anxiety.

I’m aware constipation occurs in adrenal patients, but I need to wait for that diagnosis to come for now.

You can request blood tests without your endo requesting them. You’ll have to pay if you have a HMO or PPO, though.

Been a while since an update. Basically I’m seeing a therapist to discuss my chronic fatigue, ED and brain fog - some psychiatrists have of course suggested it’s all brought on by anxiety/a product of somaticism, but I know that isn’t the answer. Nonetheless, at least I have someone to talk to.

My shaft is still shrunk a bit but my orgasms and erections are slowly getting somewhat better with some L-Arginine 500mg. I also have been using GABA 750mg for anxiety, sometimes I take two to have a better effect but it tends to work a little bit.

I’m really starting to get worried that this whole scenario won’t be solved, and finding it hard to find the right help I need. Feeling weak and brainless at times only worsens that pursuit. I’m not even sure where to look anymore for a problem to cure, but I will probably be looking for some way to get a wider hormonal panel tested and maybe even looking into Cpn since Chronic Fatigue and brain fog do rank in as symptoms. As I said though, I just don’t know where to look for answers anymore. Also, I’d love to try Xyrem but its like asking for crack to most doctors, they don’t appreciate the patient telling them to dispense a controlled substance. It may be an answer or it may not be.

My symptoms are pretty much down to:

– Chronic Fatigue/Muscular Weakness
– Brain Fog/Cognitive Dysfunction
– Sexual Dysfunction/ED
– Constipation/Bloating

I tend to not be able to do simple tasks throughout the day, too weak and painfully fatigued. Sleep is haywire as well.

I’m pretty sure the majority of us here have similar symptoms, and I think were gonna need to pull together in order to solve this. Any feedback is appreciated.

Well I tried some Quercetin and I think after taking 2-3 pills a day for 2 days, my unit looks smaller. It might be just my imagination or some coincidence, but I think I’ll not be taking that and see if it goes back to what it looked like before using Quercetin. I honestly do think though - and I could be wrong, but - the way it looks currently reminds me of how it looked using Propecia. Maybe this IS a matter of the prostate?

I’ll probably try Yohimbine next.

edit: On top of all this, I’m not sure how to deal with my parents not believing Propecia could do this for this long, and its hard to work with fatigue and brain fog… looks like I’m in for another uphill battle as I probably will turn to doctors again…

Just returned from my new GP, who is more considerate of my problems than my first. Following my first visit last month, he ordered a wide range of blood tests (which I hope to be able to scan and post soon), and of note was

Testosterone: 290 ng/dL (280 - 800)

He also referred me to a Uro I saw soon thereafter, who was much more incredulous to finasteride causing my long-term complaints, and tossed me some free Viagra.

Nonetheless, at this meeting, I came armed with relevant studies to show some clear reasons for my symptoms (Fin downregulating AR, 5AR2 activity testing via Adiol-G, acceptable ranges of hormones for males throughout day, and new European product info about ED AFTER use). He agreed my T was abnormally low, as well as my FSH/LH, and will probably refer me to an endo for more tests/possible treatment. I told him about his referred uro’s opinion of my case and he recognized that my situation is always an “uphill battle” due to its rarity and because problems like these are often from emotional causes. I told him about fin damaging prostate nerves and causing AR down-regulation, and he agreed those were possible reasons as well. I asked him if he could explain why my dick went numb 2-3 days of first using fin (back when I had no knowledge of these sides whatsoever), and he said he had no explanation, but said it is possible the fin triggered something unrelated to the actual chemical that caused this problem - something we are not looking for yet - like some genetic allergy or something, and explained how sometimes patients find they cannot use certain meds due to their reactions to them. He originally requested the uro give me a tumescence test, but the uro declined at first saying he’d wait to see the bloodwork. Now that I’m seeing the Uro tomorrow, he said to call him if he doesnt want to do the test so he can convince him otherwise.

That pretty much ended it, he said the course of action we’ll now take is to see what the Uro says, and wait until I get my insurance sorted (mine expires with the new year) before we move forward with an endo and further testing. I’m in a position where I haven’t been able to work due to my painful/uncomfortable muscle pain/fatigue, quite like fibromyalgia, and brain fog which would make my efficiency in the workplace useless, so funding insurance might be difficult and I may require medicaid. So obviously I’m not happy that my life has been ruined by these symptoms that all started with Propecia, and I’m going to do all I can to focus my energies on taking legal action as well. People in the US stay tuned.

Like I said I have my Uro tomorrow, if anyone has any advice or ideas of what to say please do, if not wish me luck and hopefully it won’t be as worthless as I suspect it might be.

Uro visit: the guy appears to have NO handle whatsoever of my situation.

I was referred by my GP to this Uro for the tumescence test, which he still has no intention of doing. When I got there I was met by his assisting Dr. who asked me to give him the basics of why I was there, so I told him about my experience losing sexual function with Propecia (when I mentioned Propecia his eyes widened and he seemed to understand why I was there), explained that I don’t get spontaneous erections, rarely AM ones, need manual stimulation to get even a soft erection/climax, and said I’m particularly concerned with my shrinkage issue. He brought in the Uro and they both checked me out, I was definitely what his assistant said to the Uro in private, “retracted”, and I began to point out that my penis was not thin or shriveled before Propecia as it is now, how this has not changed since using fin, and that my sensitivity is down. Uro said very little beyond “lots of people would be happy to have what you have”. Somehow, I don’t think anyone would be happy with a shrunken penis with less sensitivity, but perhaps that’s who I’m working with.

We went to his office and I showed the Uro my latest bloodwork, since somehow he hadn’t recieved it. His assistant agreed that T was low, said LH was fine, mentioned high LDL cholesterol, but the Uro said those famous words, “your testosterone is normal”. Bravo man.

Uro was more than happy to offer me more erection pills, but I declined, saying “I shouldn’t need these meds at my age”, figuring that’s why I’m there, to learn why my erections are poor. He asked how the Viagra worked, and I told him “it really only gave me a headache”. After telling me that I was WRONG and that T is at its highest 4-8pm and not 8am (what?), Uro gave me a script for a new bloodtest for T, Free T and Prolactin - nothing further - and said “see you in four months”. I told him my GP wanted the Uro to call him while I was there about the tumescence test, and he said that since it was a “sleep study”, he didn’t want to do it, but that he would tell my GP.

I was being rushed, and the Urologist was NOT open to discussion on WHY I might be experiencing what I am post-Propecia. I told him I had one more thing to show him (his basic reaction: O RLY? me: YA RLY…), and reached into my envelope of papers and pulled out a CD I made with snowking’s Swedish News segment (w/ translation) and handed it to him, explaining it was a news report about someone who’s going through what I am. He said he’d look at it (probably while petting the 20 dollars they charged me for the visit) and I left.

Mind you, one of my main and debilitating problems is still a state of brain fog where I just don’t know my head from my tail, so I had to fight that in order to explain and get my points across about my experience, and I have no doubt that as I’m struggling with it, I probably come off either depressed or some kind of idiot. Chalk another one up for the guys that pretend to help but don’t.

Its clear now that I need to see someone who actually knows a thing or two about what finasteride does and can do, and is aware of symptoms like mine (fatigue, muscle tightness/shrinkage, brain fog, shrinkage, libido loss, etc), and as Mew let me know, there are a few in the doctors section that might be worth seeing and may give this more than just a brush aside.

We’ll see what happens, for now since my insurance is done, I’ll focus on making my legal claims clear for a lawyer to understand, and once that’s done, probably start collecting names.

Won’t let another year go by with this problem NOT being accounted for… someone will pay.

Thanks for posting your story. I just want to add that I can totally relate to the feeling of just not being able to express your self correctly. I find that when I try and get a point across about something when speaking it just all comes out in a big fragmented, unorganized burst of blah. I can FEEL what I want to say, but for some reason when I try and put it into words, I fail miserably. I used to be a great speaker and communicator and this shit has changed that for the worst.

Yeah, and sometimes, I can’t even formulate the thoughts I want to (slower), let alone convey them.

Nonetheless, news on this front is that I had some success yesterday with L-Tyrosine 2g, and may have over-did the stimulant of Yohimbe. When I first tried Yohimbe I took it in the capsule, but I poured it in a drink this time since the pill didn’t work, and I succeeded in improving cognition, expressing myself, and even mood. I literally had not seen any improvement in this area for at least 2 years. No real sexual effect beyond high energy and motivation though, and it had a negative effect of causing some shaking (too much stimulus). The interesting thing? I was able to have fun again, and today, I feel a bit more finesse mentally, and am clearer.

So needless to say, I’m impressed with this approach, and am serious about alleviating this mental symptom of brain fog, for in order to be taken seriously, I need to be able to present my case seriously. This symptom has also blockaded my ability to take care of myself and function normally, because when you can’t think straight or process thoughts/express thoughts, all you can do is stay in one spot feeling fogged and helpless.

Here’s my protocol, I’ll explain why I’m taking what too.

MORNING

  • Multivitamin (1), Phosphitidyl Choline (3, 1.12g), L-Carnitine (1, 250mg), L-Tyrosine (1-3, 500mg-1.5g)

AFTERNOON

  • Omega 3 (2-3, 2.4g-3.6g), Yohimbe (1-3, 2g-3g)

NIGHT

  • L-Arginine (2, 1g), Horny Goat Weed multi (2, [HGW 1g, Maca 500mg, Mucunapruriens 66.6mg, Polypodium vulgare 50mg]), L-Theanine (5, 1g)
    [Size=4](amount, dosage)
    blue indicates taken as needed[/size]

I take the multivitamin for overall good health. Phosphitidylcholine, I learned, increases Acetylcholine concentration in brain which has been found to improve memory, and I also read on the forum that this neurotransmitter assists in sexual function so it sounded like a good investment. I remember reading L-Carnitine helps ED and recently found that it also assists in cases of chronic fatigue. Tyrosine, as stated above, to increase dopamine. Omega 3’s for neurological/brain health. Yohimbe to increase dopamine and stimulate me out of the fog. L-Arginine and HGW at night to improve Nitric Oxide and help ED, w/ the HGW providing some extra supplements that I assume have dopaminergic effects. L-Theanine to relax me/increase GABA (I note that this amino is dopaminergic, and also I may take it based on need to calm rather than time of day).

Had I not read this I probably would not have been as careful with this dopamine supplementation as I indicate by only taking them as needed and in a controlled way.

Hopefully this is sufficient enough to pull me out of this brain fog that I sustained since using Propecia, and I’ll be able to function more. Also, I acknowledge the fact that this neurochemical (particularly dopamine) issue may have its roots in hormonal problems such as hypogonadism, low T equals low dopamine as Mew reminded me last evening, so this may not be attacking the root cause, who knows for now.

Wish me luck.

Definitely keep us posted…