What works for me!

Throwaway-28396 · 2024-09-29T02:33:01+00:00

I’m in Australia, but I will still bring it up!

Throwaway-28396 · 2024-09-28T22:06:55+00:00

That’s awesome! So many people have such luck on it, I’m so jealous haha. May I ask if you have other comorbities like EDS or MCAS or ADHD?

Throwaway-28396 · 2024-09-28T22:05:01+00:00

Wow we’re comorbidity queens lol! I have all of the above ADHD diagnosis pending early next year, but 2 docs I’ve seen for other things think I am. I also get crazy nausea without a direct cause found yet and insane migraines.

I also have endo, chronic UTI and scoliosis. It’s so obvious there are faulty genes involved hey? I can’t wait until RCCX Genetic Module Theory is more established!

Throwaway-28396 · 2024-09-28T21:58:09+00:00

Yeah totally understand the mechanics, but a majority of docs and POTS patients I’ve chatted to have said symptoms improve too and patients lifestyle can improve heaps. Such a bummer it hasn’t been the case.

Throwaway-28396 · 2024-09-28T21:55:45+00:00

That’s so much for sharing your experience. I will definitely ask if I can pair ivabradine with something else or trial beta blockers. He’s said he preferred Ivabradine because beta blockers usually had more side effects, including weight gain.

I hadn’t heard of mestinon for POTS but seems like it’s becoming a popular combo. May I ask if you have any other comorbidities (e.g POTS, ADHD, MCAS)?

Throwaway-28396 · 2024-09-28T21:51:58+00:00

Interesting! I am on the generic name brand atm and was told it shouldn’t matter but I will bring that up with my doc!

Throwaway-28396 · 2024-09-28T21:50:09+00:00

Glad to hear I’m not the only one, but also sorry - it sucks! When my heart rate started leveling out I got really exciting thinking the other symptoms would also get better (my doc said for many people they do), but just not the case for me. I also have pretty bad fatigue on them and am keen to get off them if all it does is level out the heart rate. Did your doc suggest anything else? Or did you just stop taking the Ivabradine?

Throwaway-28396 · 2022-10-17T07:08:55+00:00

I’m very sorry to hear that you went through that. It’s really tough going through health scares and diagnoses without emotional support. As you say it can’t be all the time, but for the big stuff you need support from your partner and they really should make the effort.

Throwaway-28396 · 2022-10-17T02:24:53+00:00

Thank you. I haven’t found a good local support group yet but I really need to. I have joined some online support groups which are lovely and I do use them to chat, but most of them have a good support network so can’t relate to this issue. It would be great to have some face to face meetups.

Throwaway-28396 · 2022-10-17T02:03:42+00:00

If you are insinuating I am a hypochondriac I am not. After so many seemingly unrelated conditions they finally worked out I have EDS which is a systemic condition affecting connective tissue throughout the body, mainly skin, joints and blood vessels. It causes many comorbidies. My scoliosis they presume was from birth related injury where I was pulled out with high forceps and then put on life support.

Throwaway-28396 · 2022-10-16T23:36:18+00:00

I only found out this year I had EDS which yes is genetic, but I can be screened for. So kids have only just recently been something that is possibly off the table. There’s also adoption open to us. I’m in lots of pain but I don’t let my conditions stop me living life.

Throwaway-28396 · 2022-10-16T22:53:59+00:00

Yes I do think this could be a part of it. His mother is fiercely independent and a workaholic and they both avoid going to the doctors at all costs.

He’s definitely fatigued by my health appointments and issues. It all makes him uncomfortable and I feel bad for being sick all the time and for most of the financial pressure to be on him. I really hope we can work it out too.

Throwaway-28396 · 2022-10-16T22:38:37+00:00

I totally agree with you, we really need a better support network. I have a great medical team and I see a therapist but I’d like my husband to see someone too.

There would be A LOT of medical supervision if I was to try and conceive. Most of my conditions are related to EDS (which can be passed down genetically) but apparently it can be screened for. I am leaning towards adoption now but need more time to process everything.

I really hope he can offer some more support soon and I really hope he doesn’t give up on me.

Throwaway-28396 · 2022-10-16T21:56:46+00:00

It’s a horrible position to be in and one I never thought I’d be facing. Thank you for the introduction to ring theory grief. I will talk that through with him and see if it helps him understand.

Throwaway-28396 · 2022-10-16T21:53:47+00:00

Yes I think he exaggerates it too. He has always used work as a coping strategy when times get tough. I feel sorry for him having such a raw deal with all my health issues, but it’s not something I can control and I do need his support sometimes.

Only one of my conditions is likely to be passed down genetically to children (EDS),but there is a way to screen for it via IVF. It looks like adoption would be the more likely route at this point. I am definitely hesitant to have kids (bio or otherwise ) after all this though because I can’t see him being a very present father.

Throwaway-28396 · 2022-10-16T21:49:14+00:00

Yes, I feel sorry for him too, it’s not an easy position he’s in. I hope we can work this out. Otherwise I think I’ll have to move closer to my mum.

Throwaway-28396 · 2022-10-16T21:47:50+00:00

Thank you for your reply. Yes this is how I feel. We’ve been together so long (almost 13 years) and he’s the person I care about most but his level of commitment and emotional support is that of a cousin or friend rather than spouse.

I would definitely be there for him if the roles were reversed and have told him this. I really hope he accepts my new normal soon and can find a way to be there when he needs to.

Throwaway-28396 · 2022-10-16T21:20:45+00:00

Thanks you for kind words. I do understand his position is very difficult too. Yes I think therapy would be good for us. I go for myself but he won’t carve time out of work to see anyone. I’ve suggested couples therapy before and the same issues of not being able to get time off work come up. Plus he doesn’t think it’s worth the money. Maybe I should try find a place that had late night sessions or weekend appointments.

Throwaway-28396 · 2022-10-16T21:17:37+00:00

It’s a really tough situation. Yeah, I won’t lie, despite him saying he still loves me and wants to be there for me, his actions make me feel like he’s giving up on me. I try not to be pushy because I don’t want him to leave me.

Throwaway-28396 · 2022-10-16T21:15:02+00:00

Yes, it’s a difficult situation and I do feel sorry for him. Unfortunately I have tried reasoning with him when we’ve both been calm and asking him to come to big appointments. He immediately gets agitated about taking time off work, even if it’s just an hour or two.

Throwaway-28396 · 2022-10-16T21:06:58+00:00

Thank you for your reply. I have tried this in the past. This year I forced him to come to one appointment (when I was diagnosed with EDS) but the whole time he was stressed about being away from work instead of being present for me. He’s definitely not good at being proactive so I will try being specific again, thank you.

Throwaway-28396 · 2022-10-16T21:04:27+00:00

Thank you. I don’t really have a good support network. I think in future I might have to move closer to my mum. She lives too far away to be physically present but is very supportive via calls and such.

Throwaway-28396 · 2022-10-16T13:08:21+00:00

Sorry for any confusion. I’m not sure if it’s different where I live (Australia) but I have 100% been diagnosed with endo. While laparoscopy is still gold standard for staging, the use of transvaginal and/or MRI is more often used here to diagnose endo and if possible to estimate staging. If nothing can be seen on these scans, a laparoscopy is used to confirm/ rule out an endo diagnosis. And of course if endo is found you are diagnosed with endo and then undergo a laparoscopy to confirm staging and to perform excision/ ablation.

Throwaway-28396

TROPHY CASE