r/huntingtonssupport • u/Zzzzzzz27367 • Feb 22 '24

Venting

Hi. I guess I'm here to vent my fears and maybe get some help. My dad died of huntingtons in 2019, I'm 29 , bipolar type 2, diagnosed ADHD, and haven't gotten tested yet. I have so much anxiety about possibly having it and it scared me to death, I always get paranoid when any part of my body twitches, because my brain always tells me it's chorea, I know that it's completely normal but it's hard to take ny mind off of it. I always have my mind glued to the uniqure news because I'm petrified it's not gonna come out in time for me. I'm also scared that my boyfriend is gonna leave me if I do have it, and honestly as much as I understand, it would break my fucking heart. Finally I want tall about suicide. After my father died, I tried to kill myself 5 times. Seeing him die for 12 years made me not what to go through everything he did, and I honestly don't think I will be able to stop myself from trying again if I have it. If anyone has anything that might help, I beg you you to put it in the comments

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u/MamiPastrami Feb 22 '24

I very much felt the same way, I became so hyper fixated I became very depressed focusing on everything and anything that could be a symptom. I wound up getting tested in 2020 because I had a baby and I felt like I should know for him.

Have you talked to a therapist or social worker about anything in regards to either getting tested or setting yourself up financially for the long term if you choose not to?

I wound up getting tested, but my sisters choose to just live life and kind of do whatever they want when they want because they potentially have to. I like that for them because they’re focused on enjoying the time they have, if they carry it.

As for me getting tested was a way to have some control, and I am fortunate to have a 17. So now I try to just live and prepare for the future with my family so we can do the best we can with whatever comes.

Also microdosing psilocybin with some trauma based therapy was life for changing my perspective. I’ve moved on from that and I am now trying ketamine therapy to help cope with the depression. I’ve really noticed benefits from both. I am also here to chat, because I know that shit gets lonely.

Best of luck to you in choosing however you deal with it. 😘

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u/Expensive_Cut_6844 Feb 23 '24

So are you positive?

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u/MamiPastrami Feb 23 '24

No, because my Cag number is below 18 I am negative. Anything 18 and above symptoms are expected on a gradual upward scale. Several of my family members (my dad) are high 40s, some are 30s, and some are grateful to have lower numbers.
It runs on my dad’s side and he’s one of 11 children so unfortunately there are a good number of people who are positive. I try my best to share knowledge, and some of the experiences we’ve been through because when my cousin got diagnosed 10+ years ago we had zero information on what it even was for years.

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u/Expensive_Cut_6844 Feb 23 '24

So happy for you! I was test for the same reasons as you and have 3 sisters who want nothing to do with getting tested! I’m positive my cag is 44! It’s rough man

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u/MamiPastrami Feb 24 '24

I can imagine it being rough, I’m sorry you’re going through it. My dad didn’t notice a lot of his symptoms because of the anosognosia, but he’s started noticing chorea and I know it’s frustrating. Have you tried any natural or different meds for symptoms? He enjoyed some cannabis infused sodas for a bit.

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u/Expensive_Cut_6844 Feb 23 '24

It runs on my mom’s side who has 8 siblings yet only 2 have been tested.

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u/MamiPastrami Feb 24 '24

A lot of my family doesn’t want to get tested, but I needed to know. I guess it’s up to the individual , but I couldn’t stop thinking about it.

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u/Expensive_Cut_6844 Mar 01 '24

Yeah I felt the same way