26F. Showing so many signs of middle stage dementia and unsure what to do with myself.

~Raine

Registered User
Apr 10, 2024
59
0
26
I'm having such a hard time right now. I'm terrified I'm a 26 year old inflicted with a kind of dementia.

If anyone can give me advice, reassurance, a logical explanation, I'd appreciate it. I feel like I'm already resigning myself to my fate.

I've had people tell me it's not, that I'm too young and that it's other things, that I'd know if I had it, that the scans would of shown some kind of change in comparison back then, but I'm lining up with so many of the symptoms of middle stage and keeps getting worse everyday, it seems. I know people with stages 3-4 can be aware of their shortcomings. What scares me more, is I was having a mild episode of disorientation that I've been having the past two years, and it suddenly went downhill the past three weeks to hardly being able to care for myself. Nothing is improving.

It's so hard when everything is pointing to it and I can't do anything to speed up a diagnosis but try to go to the ER again, in hopes that they'll give me a scan to check for atrophy.

I have to wait until June 7th to see my new neurologist that was taking over for my neuro that's retiring. I see my primary on May 1st to get bloodwork done that's required for seeing another neuro that specializes in neurodegenerative disorders. I'm calling a psychiatrist and therapist on monday as well.

The closest neuropsychiatrists or neuropsychologists are an hour and a half away. There's no way I could drive myself, I only have a permit, and my father probably can't drive me. My mother absolutely won't do it, and won't drive on the interstate.
I don't know what else to do. I live with my parents, and they both don't think anything is wrong with me, even though I can notice things happening to me.

My mother is prioritizing my father, as he's been having issues with AFIB(irregular heart rhythm). I understand, but she's made it clear she's completely brushing off any of my concerns and sees me as a burden. It scares me even more that my parents aren't supporting me or even trying to look past seeing me as a hypochondriac. I'm just, on my own. Offline, anyway.

Anyways, I'm exhausted. I'm so tired. I want to be wrong. I'm so scared of losing myself. I wanted to do so many things.

Symptoms:
  • Since 2021, I've had occasional 'episodes' where I felt spells of disorientation or brain fog that never really fully went away. I went to the ER to get a CT scan soon after that started, and it was clear. I got an MRI a month later and it was also clear. Both hadn't had any changes to my previous scans. Now, I'm suspecting it was just cognitive decline and I passed it off as ADHD and mental health worsening, so I ignored it.
  • Deja vu a few times a week to a few times a day for the past two years.
  • Faces, pets, and places look and feel unfamiliar but I know the names associated with them.
  • Constantly forgetting where I put something like, 10 seconds ago.
  • Forgetting to go to bathroom.
  • Not wanting to shower or get up and do anything.
  • Forgetting to eat or finish food right in front of me, struggling to eat in general.
  • Forgetting conversations or just barely remembering them, or it all feels mushed together.
  • Constantly tossing and turning in my sleep.
  • Confusing dreams with reality + nightmares.
  • Repeating the word "like" much more than usual, feeling the need to repeat something I'm explaining because I feel like I'll lose it. I can remember well enough that I said it already, though.
  • Blanking out constantly.
  • Hardly able to understand jokes.
  • Repetitive movements, such as tugging blankets, biting nails, chewing lip, moving legs.
  • Hardly able to care for myself.
  • Unable to enjoy movies, tv shows, videos, books, etc, bc I feel like I just forget most of what I've just read or watched or that it just feels 'new.'
  • Not remembering posting something or vaguely remembering.
  • Unable to clearly recall memories from pictures I've taken and videos.
  • Unable to tell what time of day it is half the time and/or concept or judgement of time is shot.
  • Suddenly apathetic, anxious, and depressed due to my symptoms.
  • I can recall things that happened a few hours ago, but it's extremely hard or foggy. A few days ago? Almost impossible. Or I can remember vague tidbits. (This has gotten worse within the past few days.)
  • I was talking about my friend's height, and without realizing it, I was saying 5'1" or 5'2" like twice, when I meant to say 6'1" or 6'2". I didn't realize until my friend pointed it out. I also have been suddenly having trouble with words, such as nearly saying audio-matically instead of automatically. (This happened today.)
  • Last night, my left ear just, lost some of it's hearing. The ringing has become louder. I've been having thrumming tinnitus in it for the past few weeks.
History:
  • Great grandmother, grandmother, and uncle on mom's side all have had/have alzheimers and/or dementia. Great grandmother and grandmother were over 60+ and my uncle who just got recently diagnosed just turned 65. My mother might be exhibiting signs and she's 65 or 66. My uncle is a war veteran, has drank heavily in the past, has had head injuries, and did drugs. My grandmother had unmanaged diabetes, unsure about my great grandmother.
  • I had a minor concussion around in 2014 from falling off my horse.
  • I have ADHD(combined), OCD, PTSD, depression, PCOS, endometriosis, moderate sleep apnea, and anxiety, mostly health anxiety.
  • I've been taking Concerta Extended Release 27mg for going on three months for my ADHD, and Slynd 5mg for about a month.
  • I've been on and off sedentary since I was a teen, but the past 3 years, I've mostly stayed in my room and haven't gone out because of derealization, but I'm wondering it that was the cognitive issues starting.
  • I had a CPAP for a few months but didn't use it enough for my insurance to want to keep paying for it(because I had to switch to a different mask, therefore I wasn't using it for a few weeks until I got a new one.) I'm in the process of getting one again. I'm waiting on a home sleep study, but that's not until July.
  • I caught COVID back in October after a trip across the US. Up until recently, it's been easy to go into coughing fits from my lungs being irritated, but it's pretty much gone now.
  • I've always had a tendency to get headaches and migraines. Most have been from binging too much sugary food, so I'm afraid I've screwed myself over doing that, along with my few year vitamin D deficiency and not exercising/getting my heartrate up.
  • Talked to my previous neuro about my deja vu and trouble thinking about 3 years ago, but she suspected sleep deprivation from the sleep apnea. She suggested an EEG even though she didn't suspect seizures, but I didn't get it because I figured it wasn't needed. She didn't suspect the chance of epilepsy or early onset dementia when I brought it up.
Tests:
  • CT head wo contrast (4/8/2019, 7/15/2021)
  • MRI brain with and without contrast (3/16/2020, 8/5/2021)
  • B12 tested, normal (7/22/2021)
  • Sleep Study, which included an EEG (12/12/2022 & 4/20/2023)
 

SherwoodSue

Registered User
Jun 18, 2022
737
0
I think you are based in the USA. ?
This is a support forum based in UK.
You are under the care of medical professionals it seems and we are not able to give medical advice and guidance here

There is a lot going on with you at the moment and I feel for you

Do you share these thoughts with the folks who care for your OCD?
 

~Raine

Registered User
Apr 10, 2024
59
0
26
I think you are based in the USA. ?
This is a support forum based in UK.
You are under the care of medical professionals it seems and we are not able to give medical advice and guidance here

There is a lot going on with you at the moment and I feel for you

Do you share these thoughts with the folks who care for your OCD?
Mhm, I am in the USA. Is it still alright for me to post here? I just needed support, I'm pretty much on my own right now in terms of advocating for my health.
I currently don't have anyone to talk to about my OCD, but I'm contacting a psychiatrist later today so I can get started on finding a medication that might help it.
 

Izzy

Volunteer Moderator
Aug 31, 2003
75,665
0
73
Dundee
Welcome the forum @~Raine

We have members from all over the world. You are more than welcome to post on this forum. Obviously a lot of the posts are based on the situation in the UK but you will find lots of general advice and support here.
 

Louise7

Volunteer Host
Mar 25, 2016
4,992
0
Mhm, I am in the USA. Is it still alright for me to post here? I just needed support, I'm pretty much on my own right now in terms of advocating for my health.
I currently don't have anyone to talk to about my OCD, but I'm contacting a psychiatrist later today so I can get started on finding a medication that might help it.

Hello, Raine, it's fine for you to post here, and we do have quite a few members here who are from the USA, and elsewhere in the world. We are however a Dementia support forum, and much of what you have posted in terms of your symptoms and difficulties are not common to dementia so will be outside the knowledge of the majority of those who post here, and as mentioned by the previous member, we are not able to provide medical advice here either.

It's good that you will be contacting a psychiatrist later, I hope they will be able to help you. In terms of not having anyone to talk to about your OCD, there are a number of support forums which can provide support which is specific to OCD and also health anxiety, and are US based too so may be able to offer more localised solutions, which may be helpful for you:



 

DeeCee7

Registered User
Oct 13, 2023
340
0
Hello @-Raine I am sorry to read about all your problems. With your family’s experience of dementia, this is obviously weighing on your mind. We have posters on here from all over the world, so geography isn’t a barrier!
I see you have a few medical appointments already in place, so it may be just a waiting time until you get more information. In the meantime, can you talk to your Dr again about your concerns? You are still very young, with a lot going on. Do stay in touch..
 

Jessbow

Registered User
Mar 1, 2013
5,864
0
Midlands
I think youu re fretting, perhaps over anxious, about a series of things which all mash up together and cause you to panic.
You say you cant remeber but you post is full of facts, dates and detail
Tackle one thing t a time, sleep apnoea probably first. Better rested you will probably feel a bit better
 

~Raine

Registered User
Apr 10, 2024
59
0
26
Welcome the forum @~Raine

We have members from all over the world. You are more than welcome to post on this forum. Obviously a lot of the posts are based on the situation in the UK but you will find lots of general advice and support here.
Thank you, I appreciate it. ^^
 

~Raine

Registered User
Apr 10, 2024
59
0
26
Hello, Raine, it's fine for you to post here, and we do have quite a few members here who are from the USA, and elsewhere in the world. We are however a Dementia support forum, and much of what you have posted in terms of your symptoms and difficulties are not common to dementia so will be outside the knowledge of the majority of those who post here, and as mentioned by the previous member, we are not able to provide medical advice here either.

It's good that you will be contacting a psychiatrist later, I hope they will be able to help you. In terms of not having anyone to talk to about your OCD, there are a number of support forums which can provide support which is specific to OCD and also health anxiety, and are US based too so may be able to offer more localised solutions, which may be helpful for you:
That's good to hear that it doesn't sound like dementia, at least. I'll take a look at the forums, thank you very much. ^^
 

~Raine

Registered User
Apr 10, 2024
59
0
26
I think youu re fretting, perhaps over anxious, about a series of things which all mash up together and cause you to panic.
You say you cant remeber but you post is full of facts, dates and detail
Tackle one thing t a time, sleep apnoea probably first. Better rested you will probably feel a bit better
I hope so, I'm really in a state of fight or flight. Hopefully soon I can get another CPAP for myself. ^^
 

~Raine

Registered User
Apr 10, 2024
59
0
26
Hello @-Raine I am sorry to read about all your problems. With your family’s experience of dementia, this is obviously weighing on your mind. We have posters on here from all over the world, so geography isn’t a barrier!
I see you have a few medical appointments already in place, so it may be just a waiting time until you get more information. In the meantime, can you talk to your Dr again about your concerns? You are still very young, with a lot going on. Do stay in touch..
I did message my primary on Saturday about seeing if she'd be able to refer me to a neuropsychologist or neuropsychiatrist somewhere closer to me that takes my insurance, but other than that I don't believe she can do much more.
We have a shortage of neurologists too around here so there's usually a few month wait on appointments. :(
 

SherwoodSue

Registered User
Jun 18, 2022
737
0
Hello Raine

In observing that you might be US based , it was a way of acknowledging that the health care systems we are encouraged to navigate would Be different and not to imply lack of welcome🙂

I have an adult child with OCD. ‘Pure O’

In the amount of detail in your post I wondered if I saw familiar things , hyper focus, intense thinking and analysis
Familiar to OCD families
This was behind my asking if you had support coming soon from OCD practitioners?

As you have seen Dementia in family members of course you will be anxious
OCD in my loved one produces a longing for peace and 100 % certainty , when that isn’t instantly available it’s very hard I know.
 

~Raine

Registered User
Apr 10, 2024
59
0
26
Hello Raine

In observing that you might be US based , it was a way of acknowledging that the health care systems we are encouraged to navigate would Be different and not to imply lack of welcome🙂

I have an adult child with OCD. ‘Pure O’

In the amount of detail in your post I wondered if I saw familiar things , hyper focus, intense thinking and analysis
Familiar to OCD families
This was behind my asking if you had support coming soon from OCD practitioners?

As you have seen Dementia in family members of course you will be anxious
OCD in my loved one produces a longing for peace and 100 % certainty , when that isn’t instantly available it’s very hard I know.
Ooh I see! I understand, no problem at all.
Yes, thankfully I'll be able to get in contact with a psychiatrist here soon, and a therapist as well to be able to help manage my OCD. ^^
It's nice to know someone understands the longing for peace and certainty, it really is difficult having all this going on and having to wait on answers.