Need Some Help, Quite Scared at the Moment

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kevinbigfoot
Posts: 2
Joined: Mon Aug 02, 2021 5:57 pm
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Need Some Help, Quite Scared at the Moment

Unread post by kevinbigfoot »

Hey guys, been kinda reluctant to post my experience thus far because it hasn’t been very long, but here it is:
A couple years ago, at age 20, I was give Zoloft to treat my health anxiety/mild depression. Started on 25mg and slowly went up in dosage until I hit 100mg over the course of six months, then quit cold turkey without discussion from my doctor. Side effects subsided quite quickly, and I felt a whole lot better about myself. No significant problems at all until about a month ago, when some other unrelated health problems showed up. Went to my family GP about said problems, and she advised I reinstate Zoloft at 50mg. So I did, and immediately felt fantastic, almost manic for a day. The morning after my second dose, I woke up with akathisia, dry skin and hair, lost muscle tone, joint pain and popping, severe depression coupled with moderate anhedonia, really bad stomach pain, no libido, and horrible brain fog. Tomorrow will be three weeks after my last pill, and while I’ve improved in some areas, particularly libido and mental symptoms, my physical state has worsened I believe and I don’t if it’s going to stop.
Improvements so far:
-Brain fog has lifted significantly, still a bit but it’s bearable
-Anhedonia still there but it’s gotten noticeably better
-Libido comes and goes, along with occasional spontaneous erections
-Fatigue has also gotten better but I still get spells, particularly mid-day
Persisting Symptoms:
-My skin and hair are still quite dry, and my hair has been falling out quite quickly, which has never been a problem before
-Stomach pains/diarrhea after every meal are still there, some days better some worse
-Insomnia has been fluctuating quite severely, had a good couple days where I slept for 6 hours straight, but last night woke up every two hours
-Vivid, disturbing dreams
-Quite blunted orgasm, although if I don’t masturbate I have a bit of sensitivity
-Frequent urination
-Weird, chemically body odor
-Overly oily hands
-Mood swings
-Joint popping and pain
-Muscle weakness and pain, as well as flabby muscles
-My pre-existing HPPD that I’ve had since 17 is worse
-My tinnitus that I’ve had since 16 has gotten worse
-Heart palpitations and chest pain
-Occasional testicular pain
-Occasional pelvic pain

The only blood tests I’ve had thus far have been a basic CBC, Comprehensive Metabolic Panel, and T3 test. My ATL liver enzyme is high, Vitamin D is very low. Everything else, including T3, is normal. If anyone can give me some hope and/or advice on how to continue, I would be the happiest motherfucker in the world. I’m only 22, and I feel like my life is over. My symptoms are a fucking rollercoaster, and fluctuate based on the day/hour, although I generally have been feeling better compared to a couple weeks ago. Thanks everyone, much love.
kevinbigfoot
Posts: 2
Joined: Mon Aug 02, 2021 5:57 pm
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Re: Need Some Help, Quite Scared at the Moment

Unread post by kevinbigfoot »

Alright so it’s been a long time. I have scarcely been checking this forum the past 2 and a half years because, behind all likelihood, I had been getting quite a bit better. When I made my original post I was insanely scared, had no idea that anything like this could have every happened to me, and just wanted answers. Now I have no idea what think anymore. As I said, I had been getting better in a continuous “windows and waves” pattern for quite a while, up until about mid-2023. I had not done anything to accommodate this condition, it was all natural. My sexual functioning was 90% there, my anhedonia had gotten way better and my brain fog seemed to be clearing pretty well, I still had weird physical symptoms like dry and thinning hair, itchy and thin skin, but I didn’t really care at all because things had been looking up for me. I was ready to start looking for a full time job as well as moving out of my parents house within the next year. Somewhere in August, my brain fog unexplainably got worse. Not peak-PSSD level, but definitely worse. I assumed it was just a wave I was going through and didn’t pay much mind to it because I was still functioning at a comfortable level. With it, my anhedonia made a slight return but it still at a reasonable level. All was pretty well from August till about mid to late October, when I started being really self-conscious about myself, which made me have multiple panic attacks over the course of about a month and a half. These attacks would leave my feeling insanely drained, sexually disinterested, and incredibly fed up with myself, but all of them eventually resolved.

Since the start of December, I had started walking 2.5 miles 5 days a week. Made me feel good, like I was doing something with myself. After my fifth day of the second week, last Friday, I felt great, other than a pain in both my feet. I’ve always had flat feet and worn down athletic shoes relatively quickly, so I thought a couple days rest would fix it. Two days pass, I wake up on Monday, to find my feet still hurting so my Mom and I decide to ice them. Ice them for 20 minutes, all is good, but my legs start to tingle really bad. Then my stomach starts tingling. Then my hands and arms. Then my back and chest. By the end of the day my entire body is lit up in weird neuro tingles all over me and I am pretty severely fatigued. I get about 7 hours of broken sleep, and wake up being even more fatigued with even more symptoms that I’ll list below. That was two days ago.

As of now, the tingles have basically disappeared, but I am extremely fatigued and tired, but cannot fall asleep. That “too tired to sleep” feeling, as some people call it. As a plus, brain fog is back, but that feels like a result of the terrible sleep I had last night. I am really scared and hope I recover from whatever the hell this crash is, I mean, I’ve had crashes in the past but I can’t think of a single one at this level. This fatigue is crushing, man. My body feels so, so, so weak. The dysautonomia that I’ve had since I was 20 has returned with a vengeance. Anhedonia has made a pretty beastly return. My anxiety is skyrocketing, and I can’t calm down even with the level of fatigue I have. I feel almost sick, like I’ve been poisoned. And all this from a month and half of panic attacks and two weeks of low impact exercise.

Current Symptoms:

Awful, crushing fatigue
Occasional electrical pings and twitches in arms and legs
Muscle weakness in hands, feet, arms and legs
Brain fog is back
Anhedonia has returned
Poisoned feeling
Stomach feels twisted up and I have no appetite
Diarrhea
Wired but tired feeling
Sympathetic Nervous System overdrive feeling
Insomnia
Suicidal Ideation
Terrible anxiety
No libido


I think that’s about it. I have no idea what to think at all, feel like I’m back at square one. I know it’s only been a couple days but I am freaking out and hoping this isn’t here to stay. This fatigue is terrible, this feeling in my stomach is killing me. Please tell me somebody’s had a crash like this and recovered. I’m laying here at 1 am in bed, insanely tired but can’t sleep, thinking about how much easier my family’s life would be if I was gone. My Mom and Dad have been so good to me these past years, but they’ve really wanted me to finally get a job as of recent, and I really thought I was on track to getting some semblance of normalcy back. I hate this disease.
OCDemon
Posts: 22
Joined: Thu Nov 11, 2021 8:20 am
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Re: Need Some Help, Quite Scared at the Moment

Unread post by OCDemon »

Fatigue: I've been having success for my severe CFS (chronic fatigue syndrome) using high doses of methylcobalamin/adenosylcobalamin, methylfolate/folinic acid, and nicotinic acid. That's B12, B9, and B3.

Nicotinic acid (Niacin) is the latest for me. Check out "Niacin: The Real Story." Interesting reports about niacin and its many uses. I'm currently experimenting with 500mg 3x per day. Combined with a B-complex and extra folate/B12, it's been helping my fatigue a lot.

Niacin is about 1/4tsp 3x a day. And I use a little less than 1/4 tsp baking soda with each dose to buffer it. Potassium bicarbonate will also work and I plan on switching to that soon.

Potassium intake is also important. Along with magnesium. Look up "Hemant's Magahol Complex." Simple recipe: 8oz vodka, 1/2 cup Greenway Biotech USP Magnesium Chloride flakes, 1-2 teaspoons of glycerin. The glycerin helps to smooth it out, keeps it from evaporating. You apply this transdermally. I keep it in a mason jar and use a glass dropper. I use maybe 4 dropper fulls for each application and try to do this 3x a day. Magnesium is very important.

Also: I had COVID twice. And I recently had Lyme disease, which I went on antibiotics for. I've been crashing like crazy and have been suicidal as I've gotten worse and worse. If you don't know my story, I've had PSSD since 2019 from Rexulti, the successor to Abilify, made by Otsuka. Ruined my life.

I just happened to find your post here. I'm almost never on here. It seems to be common. We're all in a time sink. It's like being a literal prisoner. Time just flies by. One year, two years, it means nothing when you suffer with this condition. Sometimes I feel like my only hope is to pray to God that I will have some relief or joy after I'm dead. Something better than this.

So I do know how it goes. And the crashes are very demoralizing.

Look up Grant Genereux Books on Google, and look up Nutrition Detective on YouTube. I think they're really onto something. Abram Hoffer suggests in his book on niacin that "vitamin dependencies" are a result of longterm deficiencies. It's a theory. But an interesting one. Basically, that in severely depleted states, we go from deficient to dependent, where we need beyond normal amounts of certain nutrients in order to heal.

So. This 1.5 grams of niacin every day might be a mistake on my part, but it seems to be helping so far. I have noticed clearer thinking, and more energy. The levels of fatigue and exhaustion I experience are severe, especially after Lyme disease. I just keep getting knocked down. The antibiotics have been tough to recover from as well and I wonder how much those are contributing to my current 'crash.'

Also look up the book, "You Are the Placebo" by Dr. Joe Dispenza. I have a faint glimmer of hope that our brains might have more ability to heal than we give them credit for. PSSD casts you into the darkest recesses of hell and puts a veil over your eyes so you can't even imagine anything else. It's horrible. But maybe with practice, imagining is possible. I have gone to trying to imagine having sex, and being in love, even while completely unable to obtain an erection or feel any sexual pleasure or stimulation at all. I will try anything at this point and Joe mentions a lot of very compelling stories in his book.

I recommend the Audio Book, just my thing. Easier to listen to.

Warning: Niacin causes a flush. Non-flush niacin may have uses. But in the book, regular niacin (nicotinic acid, like from Bulk Supplements, niacin powder) is recommended. I'm actually curious how other people with PSSD will respond to the niacin flush. It causes you to feel extremely warm and itchy and tingly. So may or may not be helpful in your current situation. So far I've only read positive things about it and the negatives seem to be from extremely high doses (e.g., 3 grams per day) of the sustained release form of niacin, not the instant form (regular powder).

Well anyway. Grant Genereux, Nutrition Detective, Joe Dispenza. Robert Smith (Eutaptics) is also great. And I am recommending these as someone who really feels like they don't have the will to keep going anymore. I still believe these things are valuable. I'm hanging on by a thread, and that thread is made of a single strand of dental floss.

I do understand how hard it gets. We have to consider healing from all angles. I think requiring supernormal amounts of nutrients is very likely for people with PSSD. Nutrients in very high amounts can cause epigenetic changes that may be favorable. Niacin is one such nutrient. I recently read an article about niacin's ability to dramatically ramp up the immune system via an epigenetic change that could actually help the body kill serious infections that it would not be able to kill otherwise.

So keep this in mind. Pharmaceuticals got us into this mess. Nutraceuticals may help to get us out, if we're smart about it. And willing to take some chances. I have my fingers crossed for this niacin experiment, and I'm always reading and researching more. Our health has been critically damaged so it makes sense we might need critical levels of certain nutrients to push our bodies and our genes in the right direction.

There is potential for diet and lifestyle changes, particularly nutritional therapies, to help. I'm convinced of this. I recommend doing a lot of research and coming to your own conclusions in a careful way.

Anyway. My thoughts are all over the place. But I hope this helps somehow or gives you some direction to start going in. A B-complex per day, and larger doses of niacin, B12, folate....those have been saving me. I find the folate particularly helpful for the depression and suicidal thoughts. I also am compound heterozygous for the MTHFR gene mutation. C677T and A1298C. This may play a role. We hardly even know a tiny percentage of our genome and epigenome as humans. There are many potentials that can be unlocked that we might not even know anything about.

I feel like I'm almost dead. But I'm still going. I say "don't give up" as someone who feels like they're near death. I do understand. I feel like death would be a relief at this point. So I don't say "don't give up" lightly. I feel like I already died back in 2019. I really do. But if we ever get out of this, it would make it feel like the whole experience was worth it. And if there's even a small chance of getting out of this, it's worth it to keep going. You never know what might happen. There have been recoveries after a year or two, and some recoveries after 15 years or even more. Now imagine if there were things that could speed up the process or missing puzzle pieces that could be discovered.

So. Don't give up. Coming from someone who has very little will to live left, spends their days lying in bed or sitting in a chair, and feels like they're near death. I am still putting in effort even if it's just a couple minutes a day of forcing myself to visualize a better reality for myself than the one I'm experiencing. "Doing what you can" can be doing almost nothing at all. That's OK.

We keep learning and adapting. There is hope that things can get better. You can't afford to lose that hope. No matter how small it is.
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