You don't know you have ADHD when...

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#1
  • when you learn your symptoms could also be due to an histamine intolerance.
  • when you learn your symptoms could also be cause by a postural tachycardia syndrome.
  • When you realize you get less nervous when you eat salt in the morning and drink a bottle of water before you stand up.
  • when you learn, that a whole lot of your “nervous allergies” are not due to your psyche but probably due to your histamine intake.
  • when you realize your depressive thoughts are connected to your heart rate.
  • when you learn your hyper mobility could have something to do with the way your system is messed up.

But you are quite sure you have ADHD

  • when they take away your ADHD medication because it effects your heart and you can’t think straight AT ALL.

And you are quite upset,
-when you have been in hospital on and off for a month and you tell the docs your heart doesn’t work and a whole lot of other symptoms and the don’t examine you properly because you told them you hav ADHD and they think you are attention seeking.
-When you really feel judged for taking elvanse/vyvanse by “proper physicians”.

Dear fellow BRAINS, I have been pretty quiet, but this is due to the fact, that I was really ill. Loads of different tests were made and leave me completely confused.
I probably will stay a little bit more quiet since I have more results.

Also hands don’t work properly, digestion, ears, skin, heart, lungs… whole bag of mixed candy.
Will get back soon. Need to keep the screen time short.
Also to many insecurities right now.

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#2

Good to hear from you @annamaria!

You actually know you have ADHD if you have been diagnosed. Because that is really what it is: a diagnosis based on a set of symptoms + a set of struggles. The cause of the symptoms can differ. That’s why (certain) meds work for some people with ADHD but not for all of them.

Keep us posted on those tests. I hope it is nothing serious.

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#3

It’s confusing for clinicians and patients when two diagnoses overlap and look very similar.

I hope you can get some intervention that helps and get to the bottom of it. I hope you have some energy to keep trying to work it out.
Good luck.

Also POTS and hypermobility. Is it Ehlers Danos Syndrome the medics think you have?

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#4

Yes, plus histamine intolerance, MCAS,
long way till here…
Started with checking meningitis, borreolosis, and all the inflammatory autonomic nerve system stuff. Nothing inflammatory. Very tiring process.
And a lot of confusion as soon as you ask different medics and a lot of them say I shouldn’t wonder I feel bad taking lisdexamphetamin, Vyvanse/Elvanse.
So I actually stopped for a test period now. Blurry brain. :slight_smile:
Is it EDS you have?

#5

Thanks. Yes, that is what I keep saying.

#6

I have Chronic Fatigue Syndrome also known as Mylagic Encephalomyelitis.
It has some things in common with Ehlers Danos namely fatigue and brain fog.
Good luck with it all.
It’s hard having a poorly understood illness and the patient and its hard for the clinicians trying it make sense of it too.
Good luck with your investigations and the whole working out what is going on process.
Try to be good to yourself. Hugs

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#7

Yes, I own that diagnosis too, Hi partner in crime. Do you know for yourself what caused it.
Yes it is difficult for the clinicians. It they would only admit. What gets me is when they won’t think out of their matrix.

Thanks for the support, it actually had me thinking “Is the brain fog now ADHD, depression or ME - and is the fatigue now fatigue or procrastination?”
I am a little less foggy since I dropped histamine intake in food.

But some evil force must have deicided to put the histamine in everything thet is my favorite food.

Hugs.

#8

Hi Annamaria

I had a series of viral infections around 2006 got wiped out then recovered but every time I got a cold it would floor me for weeks. It got much worse around 2016 and I got an ME diagnosis in 2018. I am in the UK. Doctors thought that I was depressed but I knew that wasn’t it. The endocrinologist I am under is a decent bloke. He is open-minded and will admit when he does not know things.

Do you know what might have triggered your ME?

I do not have a diagnosis of ADHD but suspect it. I am on a waiting list to have an assessment.

It is definitely confusing working out what is ME and what might be ADHD when it comes to brain fog v poor working memory and executive function.

I think I would be unable to have amphetamines if I were to be diagnosed with ADHD as caffeine affects me badly. It gives me energy temporarily but wipes me out the next day. I can have one or two cups of tea but coffee is too much.

I Googled it and sure enough, all the fun foods seem to have it in. Do you have histamine intolerance?

Good luck with everything.

Look after yourself.

Clare

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#9

Sorry you already said you have histamine intolerance.

I am in my late 40’s so I probably have perimenopause on top. I really miss the way oestrogen made my brain work.

But I will be positive. I have found someone else with ME and ADHD.

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#10

Hey,

i can relate. I am in perimenopause as well.
Yes, I just found out I have histamine intolerance. Didn’t “believe” in it before.
It is CRAAAAZZZZZYYY what a difference it makes. I never had so little brain fog before.
I almost have a bad conscience that I was so ignorant before. But I guess it was the part of me that wanted to take my ADHD seriously.
Going to a new endocrinologist next week. Will see what that will do for me.
Also Hashimoto in discussion.

#11

No, I don’t know what triggered my ME, there are multiple ideas…
some say actually it could have been the vaccination with biontech, but at the same time I also had a lot of stress, my allergies were blooming, and also I was going over my limits for a long time - and I had a major disappointment in some people. Also covid and doing less sports triggered my EDS and on top of this i am still perimeopausal for ages. Hope I am done with that soon.

The thing is all those syndromes are something which people believe “are in your head” and I am very disappointed right now that for some of it I still don#t have a proper validation.

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#12

Hi Annamaria, its a bummer having poorly understood illnesses for sure. Also illnesses for which there is no effective treatment. At least with the perimenopause there is the possibility of hormone supplements. It took me years to make some sort of peace with my disability. I still struggle with adjusting to my condition and accepting what has happened. Be good to yourself.

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#13

I find the information on this website is pragmatic and helpful. You may find answers to some questions in the “purple book” summarising the research into ME. Although some of the time the answer is nobody know yet.

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#14

Oh @annamaria what a shitty time!bad enough they dangle EDS over your head while you’re feeling like crap.

But to have physicians unable to comprehend ADHD!? It’s probably well documented in your file too….

I just had my psychiatrist get angry at me for having difficulty preparing meals and forgetting my meds, my ADHD meds… like duh, those are symptoms of ADHD! It really hurts when a professional questions you.

You seem pretty amazing! And just keep advocating for yourself, or call your psych/GP and make them talk to your hospital staff… you need someone in your corner!

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#15

Exactly,…
it keeps me speechless again and again.

Been there, also forgetting appointment, being late… Yes, it is their right to be angry but they also have to be understanding and helpful developing skills.

Can you connect the ADHD meds with something nice? Favorite sweet in pill box. Put them next to phone docking station …or keep them with toothpaste and “swallow when rinse” I find connecting with something I like and do regularly is the only way working. …

I feel questioned about being ill at all. But that seems to be very common with EDS as well.

Thanks for being in my corner.

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#16

Once I get to full dose he says I won’t have fatigue or forgetfulness anymore which seems simplistic…

EDS seems to, like Chrohns have a whole bunch of misunderstandings and also like Chronic Fatigue “it’s all in your head” syndrome…

we should give the medical staff syndromes and disorders!

“Medical shaming disorder” lol…
“Medical denial of evidence based practice syndrome”
I’m seriously so angry I can’t sleep, I’m… energised… like I want yo DO something…

I might write a paper on it, send it to them.

Just keep advocating for yourself, even if it means having a notebook of what you wish you’d said, and have it ready for next time….

I really hope they look after you well, I know they’re all tired, but you know, make the nurses laugh, that’s my trick yo get them yo be nice yo me.

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#17

Sounds like they are stuck in a 1980s fallacy about ADHD (then called ADD), because being “attention seeking” is not an ADHD trait.

Actual “attention seeking behavior” might be a personality disorder trait, but usually not. Usually, in my humble opinion, it’s a “cry for help” from a patient who is frustrated that the doctors haven’t been able to find the best treatment for them yet.

It has been studied and proven that there is a correlation between allergies or asthma, and a higher likelihood of ADHD.

  • I have an allergy-triggered form of asthma, and I have ADHD. Both are in my medical records. The same caffeine (usually in the form of coffee) that I was using to treat my ADHD (that went undiagnosed for decades) also helps to keep my asthma at bay.

My doctor tried me on stimulant meds first (Adderall XR), but tachycardia as a side effect convinced him to try me on the non-stimulant that I wanted to try in the first place (atomoxetine, better known by the brand name Strattera). For me, the non-stimulant works twice as well as the stimulant did.

Regardless of the root cause, whether ADHD or something else, many of the same strategies help with Executive Functioning deficits.

It’s definitely good that you are being treated for histamine intolerance, since that can have some major effects on a person’s health. Insist on an ADHD evaluation again after your other ailments have been addressed (in case the doctors are considering removing the ADHD diagnosis from your patient record). ADHD very often is comorbid with other physical as well as other neurological conditions.

Yes, that’s a pretty clear indicator, at least way I understand it.

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#18

What I usually do is write a paper when I am very angry and than put in on my desk, let it rest for a week and see how much is first anger, adjust and send it then.

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#19

Wait…. WHAT!? That’s me tooo…. I was a c section… allergies, asthma, the lot!

#20

I can’t wait that long, unless it’s to my boss and I might get fired… even then….

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