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EXTREME ADHD

Messages
87
(warning strong language) I used the word EXTREME in all caps for a reason.

I'm diagnosed with me/cfs, POTS, i have 14 bmi, inflammation in the gut/stomach and a bunch of other stuff.
I have reduced emotions but after seeing 2 psychiatrists i wasn't diagnosed with depression, i don't have any psychosis and the anxiety i have is pretty low considering my situation(stuck with abusive parents who won't let me see doctors because "it's all bullshit", i reached out to associations social services etc nothing can be done). I would be generally considered mentally healthy if it wasnt for.... EXTREME adhd.

It's absolute fucking insanity. It's worse than anything i've ever thought possible, its the exact opposite of the concept of free will. It's literally at the point where i type 5 words and i have to walk back and forth for 2 minutes(which speaks volumes considering i'm homebound with me/cfs..............). It's at the point where i spend 10 hours, the ENTIRE DAY trying to psych up just to be able to "concentrate" for 5 minutes.

It's absurd how much this ADHD ruins my quality of life. My me/cfs ruins it by about 97%, but i would have a solid 3% to work with. I'm homebound but i would have enough mental energy to do something with my life (maybe try to earn money online etc). But the adhd ruins it by 99.999999999999999%. I'm literally unable to do anything at all because of it.

I didn't have this when i was little. It started about 2 years ago (i'm 22 now) so i wouldn't even fit the criteria for ADHD. They will just tell me it's a psychological problem (since doesnt fit into a box = psychological), more so because the country where i live (Italy) has a strong bias against adhd. All stimulants are illegal here except for Ritalin, which is given ONLY to kids with adhd (not adults) who have to be evaluated by many state psychiatrists and put on a national adhd registry(meanwhile benzos given out like candy, YEY POLITICS). Psychiatrists here would rather diagnose you with "psychosomatic syndrome" and tell you your attention problems are part of it than to diagnose with adhd. The treatment? Antipsychotics, which i've tried and only make me worse. Or otherwise psychotherapy.

I've tried everything. I write everything down (which is useless because no matter how organized i try to make things i can't read what i wrote down), i tried literally anything and everything. 2 years ago it was really bad but i forced myself, i have great willpower. 6 months ago i forced myself harder than anyone has ever done, literally having to try harder than fucking super saiyan goku to be able to write down a mail. Now, it's like if you asked me if i would rather write a mail or climb mt everest i would choose the latter, i'm 100% serious. I have no semblance of free will left and it sucks ass. And it keeps getting worse.


Tomorrow i'm going to my new GP and i absolutely CRINGE at the thought of him saying "try writing stuff down" or telling me to do psychotherapy because it will not help in any way shape or form whatsoever, there is not a single chance. I've gone to many neurologists and explained this problem to all of them and nobody seems to fucking take it seriously. They just say "yeah cognitive problems part of cfs blah blah". I can't get a stimulant anywhere. I asked modafinil (which isn't even a real stimulant) to 10 different doctors and all of them said no.

I don't know what to do. I'm at the point where i can't even reach out to anyone because the moment i try to look someone up or message them i instantly get distracted and overwhelmed by everything. I can't even go to doctors because my parents won't let me.

Honestly at this point just tell me the supplement that is the most likely to help out with this and i'll use the last bit of my non existant attention span to order it on amazon.
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Honestly at this point just tell me the supplement that is the most likely to help out with this

Cognitive impairment (what we usually call "brain fog" around here) is a typical symptom associated with ME/CFS so your describing yourself as having extreme ADHD doesn't surprise me. I have my own protocol for "brain fog" and it works pretty darn good for me but that doesn't mean it would work for you.

Given the totality of your symptoms (that I just read on your introductory post) I think there is a very decent chance that many (if not most) of them are related to your gastrointestinal function. Considering you have already been tested for celiac disease (and it came back negative) if I were in your shoes I would want to be tested for Crohn's Disease, Ulcerative Colitis (if you think there is blood in your stools) and Microscopic Colitis. Crohn's Disease, in particular, has the potential to cause terrible extra-intestinal symptoms (here's a list of extra symptoms for Crohn's Disease.) For this, you would need to see a good gastroenterologist.

Meanwhile, consider trying a ketogenic diet and see if it helps. Consider also adding a good multivitamin as malaborption (and consequently malnutrition) are common in people with gastro-intestinal problems.

Good luck!
 
Messages
87
Cognitive impairment (what we usually call "brain fog" around here) is a typical symptom associated with ME/CFS so your describing yourself as having extreme ADHD doesn't surprise me. I have my own protocol for "brain fog" and it works pretty darn good for me but that doesn't mean it would work for you.

Given the totality of your symptoms (that I just read on your introductory post) I think there is a very decent chance that many (if not most) of them are related to your gastrointestinal function. Considering you have already been tested for celiac disease (and it came back negative) if I were in your shoes I would want to be tested for Crohn's Disease, Ulcerative Colitis (if you think there is blood in your stools) and Microscopic Colitis. Crohn's Disease, in particular, has the potential to cause terrible extra-intestinal symptoms (here's a list of extra symptoms for Crohn's Disease.) For this, you would need to see a good gastroenterologist.

Meanwhile, consider trying a ketogenic diet and see if it helps. Consider also adding a good multivitamin as malaborption (and consequently malnutrition) are common in people with gastro-intestinal problems.

Good luck!

I don't have chron's, i have eosinophilic inflammation and normal inflammation ("flogosi") but it doesn't fit any illness so depending on the doctor i see i get told either IBS (= psychosomatic, think differently and it goes away lol), atypical inflammatory bowel disease, malabsorption syndrome etc. One doctor hypothesized eosinophilic gastroenteritis but it was excluded because the inflammation is too low(and symptoms dont match). It's also worth noting that i only get mild diarrhea after exertion or if i wake up early, otherwise i'm totally fine on that regard.

I've been taking mesalazine for a long time but it does nothing.

I've seen 6 gastroenterologists until now and my parents won't let me see any more. I tried multivitamins but they make me feel really bad.

I know what to do for later on, @Learner1 has taught me a lot and i'm very grateful to her for it. The problem is that right now i can't do shit because of my parents. I want/need a short term fix (stimulants would be great) so i can find someone willing to help me and get out of this shitty situation.
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
I don't have chron's

What kind of testing did you do to exclude Crohn's?

I have eosinophilic inflammation

In the colon? That would be eosinophilic colitis, then. To my knowledge, mesalazine doesn't do much for the condition. Things like predinose, budesonide, ketotifen and montekulast may be useful, though.

If you have the cash, consider paying for a GI Effects Complete Profile. Among other things, it may tell you if you have any strange bug(s) causing the symptoms.

I want/need a short term fix (stimulants would be great) so i can find someone willing to help me and get out of this shitty situation.

Nicotine patches may be able to help (but I don't know if they are available in Italy without a prescription.) However, there are a few important things to consider:
  • First, you need to make sure that you don't have high blood pressure.
  • Second, if you decide to use nicotine patches, it is very important to start with the lowest available dosage. This is true for any substance with psychotropic effects.
  • Third, unlike its use in smokers, the patch should be removed a couple of hours before going to sleep.
  • Fourth, one particular danger with the use of any stimulant is that there may be a tendency to over-exert oneself.
  • Finally, nicotine appears to be unsafe in certain forms of inflammatory bowel disease.
 
Messages
87
What kind of testing did you do to exclude Crohn's?

Well i had a colonoscopy, looked for blood in the stool (not found) and i also had an ultrasound of the belly(and probably more things i can't remember). I guess it's excluded because of the inflammation not being so bad and other factors. I'll try and post the colonoscopy when i can but it's in italian.

In the colon? That would be eosinophilic colitis, then. To my knowledge, mesalazine doesn't do much for the condition. Things like predinose, budesonide, ketotifen and montekulast may be useful, though.

If you have the cash, consider paying for a GI Effects Complete Profile. Among other things, it may tell you if you have any strange bug(s) causing the symptoms.

eosinophilic colitis was also excluded because apparently the eosinophiles are not high enough so they went with "IBS".
I know that test would be very useful but i can't get it both because of where i live and my parents.

Don't think nicotine would help, any time i was around that stuff as a kid i felt really bad.

Today i'm going to my new GP. I hope i can get something from him...

Also its worth noting that i'm taking amantadine which is supposed to be antiviral + dopaminergic. I don't feel any better on it, the antiviral effect may need time (but it's weak anyway...) but it seems like more dopamine doesn't help me at all. I've tried other drugs as well to increase dopamine and they never do anything.
 
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outdamnspot

Senior Member
Messages
924
I don't have an answer, but I can relate. I have ADHD but was only diagnosed about 3 years after my CFS started (I believe I've had it my whole life, however). I'm guessing CFS affected my ability to tolerate drugs, however, because stimulants worked amazingly well for about a week and after that the stress they placed on my system just worsened my brainfog. As my health has deteriorated, I'm completely unable to tolerate stimulants (including most drugs/supplements). I think severe CFS + ADHD is truly a curse. I don't have the physical capacity to go out anywhere and expend my energy (due to POTS, crashes etc.) and at home my brain just runs around in constant circles; as you say, it takes me the whole day to psych myself up enough to write an email or watch a Youtube video. And tying it back to free will is interesting too because I've been thinking about that lately; I just feel like a lump who has no ability to direct my 'self' outwards .. it feels like I just kind of exist as a conduit for others' experiences, but have no life/experiences of my own.

I would second trying a Keto diet as that has helped to an extent. You could also look into Nootropics.
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
Don't think nicotine would help, any time i was around that stuff as a kid i felt really bad.

Are you talking about cigarette smoke? You may have been reacting to the other chemicals in the smoke like formalin which is a derivative of formaldehyde. I think that is the main ingredient that sets off my Multiple Chemical Sensitivities.

Nicotine patches may be able to help

I'd never heard of this before. I'm intrigued since I'm almost positive I've had ADHD since I was a kid. (It would explain so much about the brain fog and my inability to get started on tasks sometimes--outside of the low energy because of the CFS.)

Finally, nicotine appears to be unsafe in certain forms of inflammatory bowel disease.

Do you think this includes IBS? I'm able to keep it under control most of the time by knowing my triggers and avoiding them--with the exception of stress. Also would that apply more to the gum and lozenges than the patches?
 
Messages
87
I don't have an answer, but I can relate. I have ADHD but was only diagnosed about 3 years after my CFS started (I believe I've had it my whole life, however). I'm guessing CFS affected my ability to tolerate drugs, however, because stimulants worked amazingly well for about a week and after that the stress they placed on my system just worsened my brainfog. As my health has deteriorated, I'm completely unable to tolerate stimulants (including most drugs/supplements). I think severe CFS + ADHD is truly a curse. I don't have the physical capacity to go out anywhere and expend my energy (due to POTS, crashes etc.) and at home my brain just runs around in constant circles; as you say, it takes me the whole day to psych myself up enough to write an email or watch a Youtube video. And tying it back to free will is interesting too because I've been thinking about that lately; I just feel like a lump who has no ability to direct my 'self' outwards .. it feels like I just kind of exist as a conduit for others' experiences, but have no life/experiences of my own.

I would second trying a Keto diet as that has helped to an extent. You could also look into Nootropics.

Yep it sucks. I tried piracetam but it makes me 10x more fatigued and sleepy. I have no proof obviously but i feel like i would be able to tolerate stimulants.

Can't try any new diet because of my parents.

Went to new gp today, asked him for stimulants or anything that could help for adhd and he only wants to give me sertraline. I don't have depression so there's no point trying that, i said no. He said i might be "unconsciously depressed" or some bs like that, like i've been to 5 between psychiatrists and psychologists if i was fucking depressed they would have figured it out. I tried explaining to him that it makes more sense to figure out what is preventing a person from functioning (in my case, the lack of attention) rather than phantom theories of being unconsciously depressed that have no scientific proof whatsoever but nothing to be done, too biased.

When i explained to him about my parents he said "maybe with an antidepressant you would feel less bad about them". I proceed to tell him that i don't actually care about them insulting etc. i'm just tired of not being able to see doctors because of them, tired of not being able to have progress in my life while i keep getting worse. The usual "if they don't want to see a psychiatrist nothing to be done" and "you don't know if you actually don't feel bad" blah blah same BS as always.

I got a prescription for a new psych visit, hopefully this time they will recognize my adhd and type down i don't have psychological/psychosomatic issues, probably won't happen though, but it will be very useful if it will
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
I'd never heard of this before

Adults with ADHD smoke at a rate that is 2-3 times that of the adult population. Unmedicated adolescents with ADHD also smoke at a much higher rate than their non-ADHD peers. This has been mostly explained as an attempt to self-medicate. Considering that nicotine is a stimulant, it is not difficult to understand why. Of course, if one decides to self-medicate with nicotine, smoking is a rather bad delivery vehicle.

Do you think this includes IBS?

I don't know. I'm also not aware of any research looking at the effects of nicotine on IBS. I am aware of research showing a beneficial effect on those with ulcerative colitis, though. For those with constipation, I suspect it would help speed things up given that nicotine induces the release of adrenaline from the adrenal glands. It is for this reason that many smokers experience a bowel movement shortly after their first morning cigarette.

Also would that apply more to the gum and lozenges than the patches?

Another question I don't have an answer for. In general, I'm not a fan of immediate-release psychoactive substances as there is a serious risk of abuse. For this reason alone, the patch, as a sustained-released delivery mechanism, is much preferred.
 

Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
@nanonug, thank you for answering my questions. I see you have another interesting post today that mentions nicotine. :)

smoking is a rather bad delivery vehicle

Most definitely--father died of lung cancer; mother currently sitting 10 feet away from me attached to 24 hour oxygen concentrator because of COPD. :(

I do okay with caffeine--it actually calms me and helps me think more clearly but other stimulants burn me out. A psychologist recently asked me if any of my doctors had ever recommended Adderall and so I researched that but many PWC say it burnt them out worse than ever. Other places I read that it is addictive also.

I may try the nicotine though (if I can get myself past the stigma of purchasing it), in tiny doses and on alternating days. I was worried about it making my blood pressure even lower than normal but read today that it is a vasoconstrictor so I think I would be okay and maybe even helpful in that regard.
 
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Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
@Hubris and @outdamnspot , does caffeine help either of you at all? As I was posting my last message I realized no one had mentioned that.

I think it's one of the milder stimulants and it doesn't do a whole lot for my energy but I do still need it for calm and when I went 6 weeks without any, I was even more forgetful than now, extremely so.
 

outdamnspot

Senior Member
Messages
924
@Hubris and @outdamnspot , does caffeine help either of you at all? As I was posting my last message I realized no one had mentioned that.

I think it's one of the milder stimulants and it doesn't do a whole lot for my energy but I do still need it for calm and when I went 6 weeks without any, I was even more forgetful than now, extremely so.

I couldn't tolerate caffeine before I went on a Keto diet, but it's the only stimulant that gives me some kind of benefit now. I don't think it does much for energy, as you say, or even cognition, but 2 cups a day boosts my mood considerably for a few hours.
 
Messages
87
@Hubris and @outdamnspot , does caffeine help either of you at all? As I was posting my last message I realized no one had mentioned that.

I think it's one of the milder stimulants and it doesn't do a whole lot for my energy but I do still need it for calm and when I went 6 weeks without any, I was even more forgetful than now, extremely so.
Coffee doesn't do anything for me, and if i take too much (which is like, 1 coffee) it makes me sleepy.
 

wastwater

Senior Member
Messages
1,271
Location
uk
I'm wondering about ADHD and low dopamine
Not sure if stimulants would be a good thing
There not recommended for CFS on nhs website
But obviously are for ADHD
 

pattismith

Senior Member
Messages
3,932
Adults with ADHD smoke at a rate that is 2-3 times that of the adult population. Unmedicated adolescents with ADHD also smoke at a much higher rate than their non-ADHD peers. This has been mostly explained as an attempt to self-medicate. Considering that nicotine is a stimulant, it is not difficult to understand why. .

Smoking inhibit MAO-B like Selegiline, so maybe Selegiline would be a better option?

Selegiline Article (statpearls.com)

Frontiers | Inhibitors of MAO-A and MAO-B in Psychiatry and Neurology | Pharmacology (frontiersin.org)