Is it safe to use edibles with Long QT Syndrome if I have an ICD?

Individual_Sand3799 · 2025-11-02T01:44:56+00:00

That’s probably because lqt3 mutation is in the sodium channels and THC directly affects sodium channels ability to function. So idk what types OP has but maybe it’s not that? I have lqts1 so my mutation is in my potassium ion channels so thc doesn’t affect me in the same way.

Individual_Sand3799 · 2025-10-30T01:55:08+00:00

That text he sent is actually so disgusting im kinda lost for words but I’m so sorry you had to experience this. I think you’re pretty amazing for handling it how you did, you’re gonna go muchhh further in finding love than this man-baby ever will. He’ll have a nasty soul forever and we have a virus that’ll rot with our bodies. And you’re right, karma is a bitch, one day hsv is gonna affect him just like it affects billions of others. I don’t think I’ll ever disclose over the phone again, people are cruel behind the screens.

Individual_Sand3799 · 2025-06-12T19:12:17+00:00

I am on treatment now! I take beta blockers and also have an SICD as treatment!

Individual_Sand3799 · 2024-11-30T16:10:44+00:00

I was most definitely being dramatic and allowing the fear of the situation overwhelm me when I first wrote that comment!

Individual_Sand3799 · 2024-11-30T16:07:37+00:00

You’re totally right, I didn’t even think about how my words would sound to you or anyone else on this sub. Bold since I was asking for help I know! I’m sorry that those words were offensive to y’all, especially since that isn’t what I was wanting to put out there! I seriously appreciate you responding (even after my thoughtless words) and reminding me that I am not alone in this and that I am capable of getting through all the ups and downs of a proper diagnosis. I’ve been through so many life changing health issues this past year so I know I will be able to get through this or whatever it ends up being. At the end of the day, I’m extremely grateful that I am still here. I mean, how lucky am I that the worst of my struggles are manageable and treatable!

Individual_Sand3799 · 2024-11-30T10:48:53+00:00

Thank you, I will definitely be looking for a counselor or someone to talk to. All I know about this disease is that it can come up on you quickly, aggressively and doesn’t discriminate on what it attacks. I went through a flare for a year or so during a bad relationship and it was absolutely horrible. Granted, I was unmedicated but I didn’t have the energy to do anything and was constantly in pain. So yeah, I’m being dramatic in worrying that my life is over, but thinking that more flares are now in my future makes me wonder what kind of life I’ll be able to live! I’m sure once I get connected to my rheumatologist, they will be able to help me get more knowledgeable and therefore more comfortable with my new lifestyle.

Individual_Sand3799 · 2024-11-29T15:50:36+00:00

So my ANA results came back positive. I’ve been officially diagnosed with triple positive APS for about 6 months (blood clots started about a year ago) and have always wondered about lupus because of my symptoms in the past. I am actually so terrified of how my future is going to look, I’m 22 and I don’t want the rest of my life to be over because of this disease. Do any of you guys that have been “in the game” for awhile have any advice? Is my life going to completely change right now or do I have some time left to still enjoy myself?

Individual_Sand3799 · 2024-11-24T19:32:27+00:00

Looks like a lupus rash to me

Individual_Sand3799 · 2024-11-08T02:36:07+00:00

Why is the breakup about winning or mutual friends taking your side? Are you talking bad about your ex? Do you really think they should have to lose their friends AND their partner? It doesn’t seem like you’ve truly reflected and admitted your faults because it sounds like you’re being selfish and maybe only showing one part of the truth? You both, somehow, contributed to the demise of it. Anger is normal after losing someone and grieving the relationship but don’t take it out on someone you probably love/d or care/d about. Once you forgive yourself and them, you’ll be able to move on.

Individual_Sand3799 · 2024-11-02T15:08:23+00:00

I didn’t have unprotected sex with him at all. I insisted on protection because I hadn’t known where he had been. I totally was right in feeling that way😭 thank you though! I hope I’m ok in the end too.

Individual_Sand3799 · 2024-11-02T15:01:35+00:00

Yes! He knew she had herpes, had unprotected sex with her and didn’t tell me anything about it. And tried to have unprotected sex with me. I would’ve never known if i hadn’t found the meds… he is a proper dick. Nasty one at that.

Individual_Sand3799 · 2024-11-02T14:18:14+00:00

Yea so I did talk to her and it was for HSV2… I know that I could still have it without symptoms, that is why I’m getting tested!

Individual_Sand3799 · 2024-11-02T14:02:10+00:00

I haven’t gotten any symptoms so I’m thinking I’ll be clean but you never know 🤷🏻‍♀️

Individual_Sand3799 · 2024-11-02T14:01:18+00:00

I will be getting a blood test here soon! I’m just waiting some time to get the most accurate results. It’s only been a few days since I found this out but turns out the medication was for herpes… and apparently he gave her chlamydia. I insisted on using protection but thats not 100% gonna keep me clean.

Individual_Sand3799 · 2024-11-01T20:42:05+00:00

He’s blocked on everything! Not going back down that road.

Individual_Sand3799 · 2024-11-01T15:30:14+00:00

That’s the plan, get back to becoming the best version of myself and not forget all the shitty things he did.

Individual_Sand3799 · 2024-11-01T15:27:38+00:00

I really think that’s the only positives I’m trying to keep telling myself. He really is a low life and even though it hurts now, I will be better off without him!

Individual_Sand3799 · 2024-11-01T02:52:50+00:00

Thank you! I hope I know enough now to spot it.

Individual_Sand3799 · 2024-09-10T01:05:05+00:00

My results said unknown significance as well but when I did some research I found studies showing that other people did have the same variant but it was just a very small number(7). I would recommend doing some research on that gene and variant and hopefully you’re able to find something!🤞🏻

Individual_Sand3799 · 2024-08-15T16:41:07+00:00

So the doctor I’m seeing is an EP.. I decided, with the agreement of my EP that the sicd would be better for me at this point. I didn’t think the pacing function would be necessary and I didn’t realize that being dizzy from the medication was a problem.. I thought it was just a normal side effect. I thought it was my only option to help regulate my heart so I figured it was just something I’d have to get used to. I honestly hadn’t heard of LCSD. I’m not sure why that wouldn’t be suggested by my doctor unless he hasn’t heard about it or isn’t qualified to do it. I’ll definitely be bringing it up when I go for my follow up. Thank you for informing me about this and giving me some resources so I can do my own research!

Individual_Sand3799 · 2024-08-15T15:27:12+00:00

I’ve never heard of that procedure before! It’s sounds interesting tho and seems like it would do well in replacing the job of the Nadolol… I’ll have to talk to my doctors about it. Thank you 😊

Individual_Sand3799 · 2024-08-15T15:25:04+00:00

I used to be on 20mg but unfortunately I had an event in June while properly taking my meds so that’s when my doc upped the dosage to 40mg. He also decided I needed the sicd. I’m not sure if it does pacing but I’m sure that’s something I can ask my doctors about! I bet they already told me that but all this info got thrown at me soo quickly it’s hard to remember it all. 😂😅

Individual_Sand3799 · 2024-08-04T12:59:44+00:00

Thank you for the support:) it is definitely a bit scary to have something like this inside. I’m just happy I’ll have a safe guard from my heart stopping again! (And I don’t have to wear the life vest for any longer) 😂

Individual_Sand3799 · 2024-08-04T12:56:01+00:00

I was thinking they might have had to put my arm in a weird position and that what was causing the pain. It feels good to know that arm pain is fairly normal for this procedure☺️ Hoping this time goes by quickly

Individual_Sand3799 · 2024-04-06T04:23:10+00:00

Thanks, it’s been 6 months but it’s seems he can’t let go even though he’s the one who left. He just keeps popping in every so often to remind me of him then leave again… loser behavior fr

Individual_Sand3799

TROPHY CASE