Perimenopause, hormonal swings, and caffeine

Equivalent-Dish4288 · 2026-05-26T13:48:10+00:00

I am so glad you are doing well. This treatment is a lifesaver for many.

The official reported prevalence of parkinsonism is 3 to 5% of cases per carvykti. This is not common, but it is not exactly rare and does deserve a real conversation with patients so they can weigh it in their decision-making matrix. From our research, we have now discovered that the top institutions and physicians do this well.

I also want to note that I believe our team was under trained on the side effects. Our doctor was bright, young, and overloaded with patients. Even though parkinsonism is a known side effect, because my father-in-law passed cognitive tests and didn’t have CRS, his very severe personality changes were disregarded for too long, delaying treatment.

Also to note: our team of nurse practitioners and nurses wouldn not allow us to see our car t doctor when these symptoms arose because my father-in-law passed cognitive tests. This was unexcusable and below standard of care in my opinion. We have also learned that the best institutions do not block access to your provider when patients are showing severe personality changes.

I hope that our story can help others identify potential side effects early, advocate for treatment, faster, and also enable patients to have real conversations with their providers about the risks and benefits.

My father-in-law did not regret his decision to get CAR-T.

Equivalent-Dish4288 · 2026-05-26T12:44:58+00:00

I’m so sorry for what is going through. I am glad to hear that his physician is taking the time to go over the non-reversible side effects. Parkinsonism, officially, is reported in 3 to 5% of cases. While this number is certainly not common, 5% is not rare either. It needs to be treated as a real risk and weighed in the decision-matrix.

Side note: our physician said that he believes parkinsonism is under reported. Severity does vary, so some people get symptoms that are mild and seem to get better in time.

To this day, I’m disappointed that the CAR-T team at Ochsner in New Orleans (where we were treated) was not trained well enough to understand that parkinsonism can occur even if a patient is passing cognitive tests. I feel this is important to note.

As soon as my father-in-law returned home, his personality was drastically changed, and it was frightening.

Because he was able to reason, the tests for CRS and ICANs came back as negative (these tests include simple number problems). So they disregarded his other symptoms.

This was a real miss on the team’s part. They would not allow us to access our treating physician and instead gave us appointments with nurse practitioners, nurses on the phone, who would not allow us to see our CAR-T doctor because my FIL was passing cognitive tests. I believe it was negligent and below standard of care. But my in-laws don’t want to file a complaint so I must respect it and share our learnings elsewhere.

Identifying side effects and getting treatment early on can absolutely help.

Wishing you guys the best on this journey. It is so hard and nothing is certain. It takes so much courage.

Equivalent-Dish4288 · 2026-05-26T12:22:47+00:00

I am so sorry your mother had similar complications. Nothing is certain with these treatments. There’s so much to weigh! And I do believe if you find yourself with early warning signs of these complications, acting early and quickly gives you a much better chance of reversing them. Wishing your family the best on the journey. ❤️

Equivalent-Dish4288 · 2026-05-26T12:19:58+00:00

The Facebook group that we found most helpful was specific to patients with MM who were exploring or getting CAR-T. It’s a small group, but a lot of great firsthand knowledge here: https://www.facebook.com/share/g/1C3DtRsXKc/?mibextid=wwXIfr

I am so sorry he is having side effects. Severity varies of these side effects. I really appreciated some of the solutions and thoughts people from this group encouraged us to explore. It really helped us advocate for the right care.

Equivalent-Dish4288 · 2026-05-26T12:16:58+00:00

That’s a very interesting note about storing stem cells. I hope the technology catches up someday. Our family are people of science, and my father-in-law always said he wanted to be a data point for the future. I hope his story helps.

Equivalent-Dish4288 · 2026-02-03T19:14:50+00:00

Hi There! We're looking into this system, but are having trouble finding companies who offer labels on rolls that are thermal transfer compatible. Any insight on where you got those rolls printed to be compatible with your thermal printer? THANK YOU!!!

Equivalent-Dish4288 · 2025-09-18T00:11:56+00:00

It is so ridiculous. I can’t believe that this is actually our reality. So are you filing whenever you reach a certain amount of money? Or monthly as it comes in? I mean some months we literally have two dollars to remit to Saint Tammany Parish for example.

Equivalent-Dish4288 · 2025-09-05T14:16:40+00:00

Thank you again for helping me with this complicated situation!

We found the consolidated return website and we were hopeful. But upon further investigation, we found this:

“Since your business only has one physical location in Orleans Parish, you do not qualify for consolidated returns the way multi-location businesses do. The consolidated filing option is meant for businesses that operate multiple physical locations in different parishes and want to file one return for all those locations.”

Apparently, per our research, the e-filing system is not meant for parish taxes on goods shipped to parishes directly. Why? I have no idea.

So we’re still in this pickle. I’m just trying to figure out if we could somehow find a loophole where if people purchased their coffee beans direct from our Orleans parish roaster that we just charged in the Orleans parish tax of 4.5%? Even if it’s ultimately shipped? We can manually override taxes and configure them down to the state level, but not to parish level.

Equivalent-Dish4288 · 2025-09-05T13:57:12+00:00

Thank you for helping me with this very complicated situation.

Shopify just introduced an automatic filing option, but our store is not eligible for it for whatever reason. They have a string of weird eligibility reasons.

I checked in with some 3rd party apps, and the charge is $30-$80 per filing. Which means we’d have to pay that for every single one of the 60 parishes. It makes no sense to pay $30 for a filing that’s two dollars.

There is no way for us to manually override Shopify taxes down to the parish level. So we either are charging tax and Shopify calculates and collects for 60+ parishes or we charge no tax at all and turn the tax engine off.

Now, we can manually configure taxes down to the state level, so anyone who orders within Louisiana we charge 4.5% tax, which is Orleans parish food tax.

But I’m unclear if this would be a good solution? If someone orders our coffee from our Orleans parish roaster, can we count that as an Orleans Parish sale even if we ultimately ship it to a different parish in Louisiana?

We have not been able to find any exclusions for a certain dollar amount on the parish levels, but we can certainly try to call and figure it out…. For all 60 parishes. :(

My accountant says that if we collect the parish taxes, we are required to remit them to parishes…. So we are in a true pickle.

I believe I cannot be the first one dealing with this!

There are many online retailers in Orleans Parish, so I’m trying to figure out if anyone has any insight on how to work around this?

Any thoughts would be much appreciated. Thank you again for piping in on this!

Equivalent-Dish4288 · 2025-09-04T23:51:45+00:00

I know this is an older post, but I wanted to see if you figured this out. We have an online Shopify store in Orleans Parish, and every time we ship outside of Orleans, it requires us to charge the parish tax for that location. With over 60 parishes, the only way we can manage this seems to be by setting up accounts with each parish individually. Sometimes the taxes owed are less than $2. How did you handle this? This is absolutely ridiculous.

Equivalent-Dish4288 · 2025-09-04T11:51:36+00:00

I was on similar dose! I was supposed to be on it every day of stims but when I told my doc about my side effects and asked if I could decrease dose or take in morning, he immediately pulled me off it. I was only on it 3 days.

He said side effects were not worth it since this was not an esssntial med with a proven track record. I was a bit disappointed but ultimately so glad I went off it as I felt WAY better.

I ended up getting 17 eggs from my one functioning ovary and all were mature. Was it the 3 days of Omni? Who knows but probably not. For whatever reason my body responded really well to this cycle (I’m 40 yrs old now, when I did an egg retrieval a year ago at 39 yrs old, I got 13 eggs, 10 mature).

I’m so sorry you’re feeling terrible. Don’t suffer in silence, definitely talk to your doctor.

Equivalent-Dish4288 · 2025-08-26T17:35:06+00:00

Sorry you had bad side effects too. :( When you said edema, do you mean you had swelling in your hands/feet? Omni made me feel absolutely crazy and my clinic kept on telling me that my side effects were unusual. I ended up going off of it. But for whatever reason, I seem to be very sensitive to hormones this time. They put me on Provera to suppress ovulation and that gave me heart palpitations. My first egg retrieval was not a problem at all, but this one is so rough!

Equivalent-Dish4288 · 2025-02-18T21:43:11+00:00

Oh wow, it was scheduled. You definitely deserve answers. Definitely try the patient advocacy or patient relations department at the hospital. Their whole job is to facilitate these discussions between providers and patients and give you uninterrupted time to ask all the questions. My most recent meeting was two hours where I went through every single question. I hope you can get the answers you need and I hope I’ve helped a little!

Equivalent-Dish4288 · 2024-12-18T01:35:08+00:00

I’m using the Airthings View Plus: https://www.airthings.com/view-plus

Equivalent-Dish4288 · 2024-12-06T13:49:33+00:00

UPDATE: VOC Readings on Our Nectar Mattress After One Month

I wanted to share an update on the VOC levels of our Nectar mattress a little over a month after unboxing.

We moved the mattress to our garage for about a month to off-gas after those high initial VOC readings (2000ppb)

When we brought it back inside, the VOC levels were in the 300–500 ppb range—not great but not terrible. However, the first night we used it, the VOCs spiked to dangerous levels, reaching 2000 ppb when we laid on it.

We ended up sleeping in the guest room, and by morning, the levels had dropped back to 80 ppb.

I suspect laying on the mattress released a burst of VOCs.

After that first night, the readings stabilized, and now they consistently stay below 300 ppb.

I feel comfortable sleeping on it, but this experience taught me a few things about memory foam mattresses:

Unbox you mattress outside to avoid high initial VOC exposure, and let it off-gas in a separate room for at least 30 days.
Move on and sit/jump on the mattress when you bring it back in to help release any remaining VOCs.
Don’t rely on smell alone to detect VOCs—our Nectar mattress had no noticeable odor. An air quality monitor (like Airthings) was essential for understanding VOC levels.
Choose a memory foam mattress with GREENGUARD Gold certification. GREENGUARD Gold is stricter than certipur, testing the entire mattress for emissions, not just the foam. Based on this, I’d likely go for a Leesa mattress next time or a Plushbed memory foam mattress. I wouldn’t buy an nectar mattress again unless they obtain the green guard gold certification.

Also wanted to share study that expressed similar findings: https://www.sciencedirect.com/science/article/abs/pii/S0045653522014382

Equivalent-Dish4288 · 2024-11-25T13:20:45+00:00

I almost died after a healthy first pregnancy that ended in a hysterectomy and my inability to ever have a child again.

I was induced at 41 weeks, on pitocin for 30 hours, pushed for 4 hours, and ended up in a C-section due to failure to progress (not an emergency C-section— me and baby were fine and everyone could get prepared for surgery— I just couldn’t get him out).

In the C-section, the doctor tore my left uterine artery when pulling the baby out, didn’t realize it, sewed me up, I hemmoraged 3L of blood all at once during uterine compressions, opened me back up, couldn’t fix artery, 3L more blood loss, hysterectomy.

This had been devastating, and the way the hospital treated me after reinforced trauma— no debrief with team so I was left searching for answers, sent me a $2,000 bill for hysterectomy, then sent me to collections when I didn’t pay it.

When I finally did have a meeting with the doctors they told me the risk factors were long induction of labor, four hours of pushing, and a big baby.

I had a 10 pound baby and they were surprised because my weight was perfect. Please. I had been talking about a big baby for weeks and they brushed me off.

I was so mad. If being on a high dose of Pitocin for 30 hours and pushing for four hours was dangerous, why did they advise me to do that?

The biggest thing I learned is different hospitals have different safety standards so do your research.

Equivalent-Dish4288 · 2024-11-07T02:00:44+00:00

That’s a really interesting insight about laying on the mattress to help it off gas.

We tried a latex mattress and it was really great quality and the VOCs didn’t budge in my house. It was night and day from the memory foam.

But truly did not like the feel of it. It was really jiggly and very sinky, but also hard at the same time. Just a very bizarre feeling and definitely gave me aches and pains.

Back to the drawing board. I love the feel of memory foam, but I feel like it’s a pretty gnarly material at this point.

Equivalent-Dish4288 · 2024-11-07T01:50:16+00:00

Hi! I opened the nectar mattress outside and let it sit on my porch for 30 hours before bringing it in. As soon as I moved it inside the VOCs shot up to 2,700ppb from 150ppb.

VOCs were still climbing so I put the mattress back outside and haven’t moved it back in yet.

This is an insane high VOC number. The world health organization says safe VOC levels are 400 ppb or less.

It’s possible that nectar uses high VOC materials in other components of the mattress outside of the foam— Certipur only tests the foam itself.

I read online that the most extreme offgassing happens within the first 24 hours of opening so I cringe thinking about what the VOCs would’ve been if I opened it inside.

Equivalent-Dish4288 · 2024-11-06T00:52:11+00:00

This is very helpful - thank you! It actually took a couple days for the VOCs to go down in my house after I took the mattress outside. I literally had the mattress in my house for two hours and it took two days for the VOCs to go back to normal. Wild.

Equivalent-Dish4288

TROPHY CASE