Just waiting for now. Exhausted. (26F)

[~Raine]

I appreciate everyone's kindness here while I'm dealing with these symptoms. I've gone downhill the past month and I'm just, having to wait for appointments right now.

I'm noticing myself having more trouble with remembering recent events. I can barely remember what I did yesterday or a few hours ago, even a few minutes ago.

Time seems to completely fly by or not move at all. I thought it was evening earlier but it was only 10am. I went downstairs to talk with my mother about taking an allergy tablet then forgot what I came down for very quickly.

I asked my mom to put some chicken wings in the oven for me and said I'd get them out when they were finished, so I did. I went down, and reached up to turn the light off above the stove, thinking I was turning off the stove itself. I realized fairly quickly but it also took me a moment to remember which buttons to press to turn it off. I felt genuinely confused, not like a momentary lapse.

I forgot if I took my concerta this morning, so I didn't trust my memory and just didn't take it so I wouldn't double dose. I'm pretty sure I didn't and that I was mixing it up with yesterday, but still.

Another thing that's gotten alot worse is I have a constant pressure on the right half of my head, and it feels like it's tingling, almost like it's low circulation. But it got worse when my memory/thinking worsened this past month.

I'm also much more tired, sleeping around 12 hours because it's just so tiring to be awake with this going on.

This is driving me insane. I also asked my mother to clarify what kind of dementia my family members on her side have had/have. My grandmother apparently had ministrokes that gave her hers, which I'm assuming would be vascular dementia. She thinks my great grandmother had alzheimers but isn't sure, and my uncle was diagnosed with frontotemporal. My uncle was diagnosed right before his 65th birthday. I'm pretty sure my grandmother and great grandmother were past 65, but I'm honestly afraid to ask if they were younger because it'd just fuel my fears.

Nobody in the house thinks anything is wrong with me, but I'm noticing my own shortcomings. I've been trying to ignore them or make excuses for myself, but everything's pointing to what I'm afraid of.

I even updated end-of-life care in my patient portal stating what my wishes were for my pets and belongings because I feel so sure about this. I don't know what to do. I feel helpless and waiting for an official diagnosis of anything is taking so long.

 

[Kevinl]

I read you post and thank you so much for posting, you're not alone on here. K

 

[~Raine]

I read you post and thank you so much for posting, you're not alone on here. K

Thank you, I appreciate you taking the time to reply. ^^ Knowing I have support makes me feel a little less lonely in this.

 

[Jan48]

I have read your post very well written and detailed. Could your symptoms be related to anxiety? Worrying and be afraid will not help until you see a professional.

 

[~Raine]

I have read your post very well written and detailed. Could your symptoms be related to anxiety? Worrying and be afraid will not help until you see a professional.

Firstly, thank you, lol. I'm trying my best to be as clear and concise as possible.
I'm definitely feeling anxious but I've more so been anxious because of said symptoms. I'm sure it's exacerbating things, though.
I'll be seeing my primary on Monday thankfully to get bloodwork done so I can see a professional who specializes in neurodegenerative things.

 

[Knitandpurl]

Firstly, thank you, lol. I'm trying my best to be as clear and concise as possible.
I'm definitely feeling anxious but I've more so been anxious because of said symptoms. I'm sure it's exacerbating things, though.
I'll be seeing my primary on Monday thankfully to get bloodwork done so I can see a professional who specializes in neurodegenerative things.

I so feel for you. I think getting dementia ourselves is probably a worry/fear for most of us carers. It’s a long wait till Monday, try and fo something nice this weekend and normal to take your mind of it. Make sure you mention the head pain/pressure to your GP this could be all anxiety related.

 

[SharoH]

Hi
I just want to say thank you for posting and wish you well for Monday. Please let us know how you get on so we can support you.
Good luck.

 

[~Raine]

I so feel for you. I think getting dementia ourselves is probably a worry/fear for most of us carers. It’s a long wait till Monday, try and fo something nice this weekend and normal to take your mind of it. Make sure you mention the head pain/pressure to your GP this could be all anxiety related.

Thank you, I'll definitely try and get my mind off things, maybe spend some time with my friends. I'll make sure to mention it to my GP for sure.

 

[~Raine]

Hi
I just want to say thank you for posting and wish you well for Monday. Please let us know how you get on so we can support you.
Good luck.

Thank you for the support, I definitely will keep y'all updated.

 

[~Raine]

Felt like posting a little update for y'all before my appointment tomorrow.

Spent yesterday making myself get up and move around with my VR headset, socialized and played some fun games on there with a friend. Spent today binge watching a show I've been putting off watching for a while and now I'm drawing. Anxiety from not being able to crystal clearly remember things is eating at me, along with the weird fuzzy pressure/tingling sensation in that same spot on the right side of my forehead, but I'm hanging in there. Also made myself take a shower after a few days too many putting it off, I handled that pretty well, didn't double grab anything this time, didn't forget to wash conditioner out of my hair this time too.

Been taking vitamins everyday for the past week to see if it'll help at all. I think the Lions Mane tablets I'm taking are helping my energy and ability to focus slightly, I'm taking 2000mg a day, 4 tablets of two different kinds that focus on different parts of the mushroom.

Other vitamins I'm taking are b12, fish oil, vitamin d, one-a-day womens, and tumeric capsules.

Trying to avoid sugar, but I caved and got some coffee cake muffins, lol. I've been without sugar for about a month so I treated myself during this stressful time.
Been eating frozen chicken wings for the past 2-3 days and drinking green tea. Parents are getting me healthy microwave dinners so that's helping me be able to make myself better food. I've lost about 10 lbs unintentionally from eating very little or only eating when I feel hungry.

I keep trying to distract myself because if I think of possibly having dementia I'll just spike my blood pressure and panic. Not panicking has never been my strong suit, haha.

But yea, hoping I can get a referral soon after tomorrow's bloodwork.

 

[Grannie G]

Wishing you the best for tomorrow @~Raine I hope you will be reassured in whatever way is best for you.

 

[Collywobbles]

It’s so good that you’re getting support. If you take a step back, you’ve actually remembered quite a lot in your most recent post.

- What you did yesterday
- You hadn’t showered for a few days
- You’d previously not washed the conditioner out of your hair
- You’ve taken vitamins every day for the last week
- You’ve managed a pretty complex daily vitamin and supplement routine
- You haven’t eaten sugar for a month
- You’ve eaten frozen chicken wings for 2-3 days

I’d struggle to remember my last few days in that kind of detail. Maybe it’s time to give yourself some grace and wait to hear what the specialists say? There could be a combination of factors at play, and while dementia is a focus of your anxiety, you may still find that your problems are entirely unrelated to it.

Please let us know how your appointment goes - we’re rooting for you here.

 

[SherwoodSue]

Hello Raine.

Here are some things to reflect on. The common situation here is that the people surrounding a loved one all notice that something is wrong. The person with symptoms often less so. Please allow this thought to percolate, those around you are NOT noticing symptoms. As time goes along it would be impossible for the behaviour of someone with dementia to not been seem by those in their company

May I tell you about my son with OCD?
He has a distressing intrusive thought. That thought causes unsettling feelings. The feelings are intolerable, he seeks reassurance. The reassurance helps , (for a while only). The thought returns. He seeks reassurance and so we go on….., His need for reassurance is his compulsion In the same way that some OCD folks have the compulsion to wash their hands.

As his parent I was his main ‘go to’ for reassurance. As a family we had to learn to break into the cycle. Loving people (like those here on this site) will always want to reassure.
But it was in his case the worst thing as I was, as much as he was himself, being got at by the OCD bully.

I had to replace my reassurance with comments like. ‘I dunno, what do you think?’

If you won the lottery the excited feelings would have died down weeks later. That what feelings do, sad or happy, they die down. Folks with OCD struggle to learn that if we sit with uncomfortable feelings they will die down. Yes I know it’s SoooHard.

My continuous reassurance was stopping home grow into that learning

I am talking about my son

I wonder does any of this echo with you? If not then no harm.
If it does, please print out your posts and replies here and take to your OCD support team. I suspect they may be best placed to move you forward.

Keeping you in my prayers x

 

[~Raine]

Wishing you the best for tomorrow @~Raine I hope you will be reassured in whatever way is best for you.

Thank you very much, about to head out soon. ^^

 

[~Raine]

It’s so good that you’re getting support. If you take a step back, you’ve actually remembered quite a lot in your most recent post.

- What you did yesterday
- You hadn’t showered for a few days
- You’d previously not washed the conditioner out of your hair
- You’ve taken vitamins every day for the last week
- You’ve managed a pretty complex daily vitamin and supplement routine
- You haven’t eaten sugar for a month
- You’ve eaten frozen chicken wings for 2-3 days

I’d struggle to remember my last few days in that kind of detail. Maybe it’s time to give yourself some grace and wait to hear what the specialists say? There could be a combination of factors at play, and while dementia is a focus of your anxiety, you may still find that your problems are entirely unrelated to it.

Please let us know how your appointment goes - we’re rooting for you here.

Thank you for the reassurance, I appreciate it. ^^ As hard as it is to, I'm glad I can still remember a few things.
I do hope it's something benign that can be fixed, I've felt so detached from my surroundings and home today it's frightening, being sleep deprived certainly isn't helping. About to head into my appointment in a few minutes here, fingers crossed!

 

[~Raine]

Hello Raine.

Here are some things to reflect on. The common situation here is that the people surrounding a loved one all notice that something is wrong. The person with symptoms often less so. Please allow this thought to percolate, those around you are NOT noticing symptoms. As time goes along it would be impossible for the behaviour of someone with dementia to not been seem by those in their company

May I tell you about my son with OCD?
He has a distressing intrusive thought. That thought causes unsettling feelings. The feelings are intolerable, he seeks reassurance. The reassurance helps , (for a while only). The thought returns. He seeks reassurance and so we go on….., His need for reassurance is his compulsion In the same way that some OCD folks have the compulsion to wash their hands.

As his parent I was his main ‘go to’ for reassurance. As a family we had to learn to break into the cycle. Loving people (like those here on this site) will always want to reassure.
But it was in his case the worst thing as I was, as much as he was himself, being got at by the OCD bully.

I had to replace my reassurance with comments like. ‘I dunno, what do you think?’

If you won the lottery the excited feelings would have died down weeks later. That what feelings do, sad or happy, they die down. Folks with OCD struggle to learn that if we sit with uncomfortable feelings they will die down. Yes I know it’s SoooHard.

My continuous reassurance was stopping home grow into that learning

I am talking about my son

I wonder does any of this echo with you? If not then no harm.
If it does, please print out your posts and replies here and take to your OCD support team. I suspect they may be best placed to move you forward.

Keeping you in my prayers x

My only thing that concerns me is I believe my friends and family might not let me know because they don't want to fuel my anxiety, and my parents always tell me I'm fine and tell me I'm just anxious, even when I do have something legitimately going on with me, such as mental health or when I was trying to get my PCOS and Endometriosis diagnosis.
I'm sure my OCD is playing a big part in this as well, I'm trying to get myself a psychiatrist too.
I appreciate you talking about it and your prayers as well as your reassurance. ^^

 

[~Raine]

Alright y'all, summary of yesterday's appointment.

- Spoke with my primary/family medicine doctor.
- She tested me on the MMSE, I scored a 30/30. Tested me on the mini cog and I got a 4/5 (couldn't remember the third word she asked me to recall) She also didn't tell me she was gonna test me at first so that's probably a good thing, haha.
- We talked about my issues, and the possibility of it being my ADHD mixed with OCD along with a possible personality or dissociative disorder issue.
- She agreed that she thinks I'm on the right track with seeing a neuropsychologist and referred me to a local academy, so yay! No worrying about having to travel almost two hours.
- She also thinks I should work in tandem with the neuropsychologist and a psychiatrist, so I'll be doing that.
- Also going to try a newer ADHD medication to see if I see any difference that my doctor said she's seen help alot.
- She doesn't feel like I have dementia, but does think I have something going on.

Wanted to talk about something that's been making me unsettled.

I went out to eat yesterday and felt so detached from literally everything. What scared me most is when I went outside, I felt like I was living a flashback to when I was walking out of a movie theater when I was younger just because I was shielding my eyes from the sun. It felt surreal and unsettling.

Just, everything feels so unfamiliar. Like I know what I'm looking at, but it feels off. I've felt like that for a while now and associated it with derealization and being in my house for so long, not getting out since Covid started. But, even a few months ago it didn't feel this terrifying. It worries me.

I feel like I'm having delusions and can't tell what's real and what's not. Just, all of this is unsettling and it makes me want to stay inside. Even looking outside makes me feel uneasy.

But making progress, hoping to get into the neuropsych soon and see a psychiatrist soon too.

[Meant to add that I did get bloodwork done to test for any deficiencies that would affect my cognitive function, still waiting on the results.]

 

[Sarasa]

That sounds like some positive steps towards getting things sorted for you @~Raine.

 

[Collywobbles]

It may not feel like it, but that does at least sound hopeful that you’ve moved away from a dementia diagnosis, whilst being on the right track to see the correct specialist next.

 

[DeeCee7]

Well done @~Raine for working through your appointment with your Dr so positively. Together you have made some good progress and working towards your next steps. You make very good notes and observations which you can refer to when you next see your mental health specialists . Thanks for posting and updating us.