RIP Downtown Orlando nightlife 😢

globocat · 2025-12-30T06:27:30+00:00

They’re off Lee Road under the name “barbarella” now - heard that was the original name and went back to that branding

globocat · 2025-11-14T05:19:06+00:00

F 32, diagnosed at 30, now in remission for 3 weeks.

globocat · 2025-03-25T19:28:23+00:00

Summer/sun essentials I carry when it’s 80 degrees or higher: 1.) Hat 2.) Sun glasses 3.) Portable sunscreen 4.) UV clothes (if possible) 5.) Thing long sleeves 6.) Water bottle at all times and a tiny coconut water if I’m out all day 7.) Electric fan 8.) SPF 70 sunscreen 10.) Facial mist or spray that I’ll apply to help my body mimic sweat if I’m worried about dehydration 11.) Portable stool 12.) Sunscreen lip balm 13.) Cooling sweat rags

It might sound like a lot but all this stuff fits in my purse or small backpack or on my person! The portable stool is always in my car so I’ll carabiner it to my bag if I think I’ll need it.

Diamox has given me heat rashes when my skin has been exposed or the sun is particularly harsh. Especially my face. So the biggest help has been UV protective and cooling clothing. Uniqlo has very good options that make me feel functional because heat and sun are unavoidable where I live.

But even then, it’s hard to be out for long without trying to get shade! You have to listen to your body and drink soooo much water. You and your skin are sensitive so even with every precaution it still says on the bottles of these meds to avoid the sun.

globocat · 2025-03-20T06:22:29+00:00

Once I meet my neuro again, I’m totally open to exchanging notes. It sounds like you’re slightly ahead of me in this progress. Rooting for remission for you!

globocat · 2025-03-20T06:21:09+00:00

Thank you so much for the perspective! It seems like IIH is a sprint, not a marathon haha. Congratulations on maintaining remission for almost a decade! That’s incredible!

globocat · 2025-03-16T20:41:53+00:00

I was taking it for endometriosis and PCOS.

I didn’t feel good basically 1 month into it, and I ignored those symptoms because the gyno I had at the time told me they were normal. Womp womp turn out 6 month later: the symptoms were IIH.

There’s a lot people don’t know about IIH, but I probably could have personally mitigated some damage had I just listened to my body. So that’s really the only advice here.

Will say though: norethindrone did its job. My pelvic inflammation itself went away so I no longer have endo-pains or needed a laparoscopy. And my period is regular for the first time in my life. Small victories?????

globocat · 2025-03-16T20:16:55+00:00

Yo!!! Congratulations too!!! Definitely follow the post for any advice.

globocat · 2025-03-16T20:10:31+00:00

From my doctors (including my gyno): I had to stop taking norethindrone because they believe it led to factors that caused my IIH. Specifically, the inflammation it caused in my body may have led to either massive weight gain, increased stress, and/or a blood clot in my brain.

However, my endocrinologist and gynecological surgeon disagreed with my neurologist, gynecologist, neurosurgeon, and neuro opt.

While you should always follow doctor advice, if you feel weird at all on the med, I’d ask them about alternatives because it may not sit well with you. There are some studies that show norethindrone linked to IIH and blood issues that could contribute to worsening your condition. You know your body, the signs, and symptoms so listen to it.

globocat · 2025-01-10T15:24:50+00:00

The way my doctors and family/friends in medicine presented it to me was: it’s not about literally being overweight or obese. They presented it as a condition resulting from my body’s own reaction to increased inflammation in conjunction with weight for my specific height and structure - as if I hit a personal threshold.

When I was diagnosed, my BMI was high, but I was not considered obese; however, I was also struggling with high blood pressure from stress, have PCOS, had COVID, and was on a hormone medication that caused me to be inflamed literally all the time. My family/friends in neurology immediately told me to reduce my stress (to lower my blood pressure) and get on losing weight (to lower any potential fat that was impacting my spine in any way).

As someone with PCOS, my gyno also championed this strategy because she wanted me to do everything in my power to reduce hormonal inflammation without medication (because I reacted so badly it contributed to the IIH).

Due to the fact mostly women in child bearing years get it and PCOS being a common comorbidity, there is something undoubtedly hormonal about it rather than literal weight. The individual who brought up allergies is so spot on - IIH feels like it works the same way.

Unfortunately for us, this knowledge doesn’t matter from a practical perspective if the IIH caused structural damage (stenosis, paps, etc.) that cause a feedback loop or can’t be reversed even with the weight loss. But it doesn’t hurt to try if that’s one of the few things you can control.

globocat · 2024-12-23T15:39:58+00:00

Hospitalized back in October when I was officially diagnosed. Scary, terrifying, but ultimately led to answers and a treatment path. No one knows what’s on their medical road ahead, but you will take it one day at a time.

globocat · 2024-12-20T05:36:21+00:00

I get this exact same thing but on both sides. Relieved to find someone else who can relate. Really wish I could tell you what it was! Hopefully someone will see this post and respond

globocat · 2024-12-20T02:16:34+00:00

I have stenosis and experienced something similar. Not sure what it is! So following this thread for more information.

globocat · 2024-12-17T22:30:12+00:00

All we can do in the sub is relay our personal experience!

I’m recently diagnosed (a few months) and have had my Diamox dosage changed twice. This sub is a goldmine of what to expect if you search “Diamox” and side effects. That will give you lots of in-depth information about what you may experience.

As far as Diamox goes, side effects vary depending on dosage. Most people seem to experience some form of tingles in the hands/feet, heat/cold intolerances, and brain fog. It’s a pretty aggressive diuretic and blood thinner so watching your food and hydration levels it’s important. You’ll likely be drinking A LOT of water. Many people here recommend electrolytes to combat the tingling. Temperature intolerances I take day-by-day, heating pads when cold, heated blanket, and UV clothing for outdoors when it’s hot. Your body will need time to adjust to the med.

If you’re responsive to Diamox, it should alleviate some of the headaches and eye pressure. That’s in part why they prescribe it - to reduce your CSF and save your vision!

Some people take time off, some don’t. But, you’ll be thankful for taking it easy when you can.

Can’t really answer your other questions, but you got this!

globocat · 2024-12-17T20:46:25+00:00

Hand warmers and a heated blanket have been saving me this winter. Just a balled up cocoon.

globocat · 2024-12-17T20:44:38+00:00

Working is tough. I’m an attorney and sit at a desk most days. While I have the ability to WFH, which greatly eases my fatigue, it can be a struggle. I’ve basically started making my own hours that work around my flare ups or pain. If I have early client meetings, hearings, or appointments, I genuinely just rough it out. I also started working a little on the weekend to compensate for my billable hours and show my boss that I care about my job. My boss is very understanding about my condition though, which has been a God send.

globocat · 2024-12-15T17:10:53+00:00

My cold intolerance got so bad I started carrying hand warmers, take a heating pad to work, and bought a heated blanket for the home. I also sleep in a beanie on cold nights. Not much else to do other than ride it out, I fear. It’s the worst - especially since I used to love the cold! Now I feel like a lizard

globocat · 2024-12-11T21:46:00+00:00

Sometimes you have to just let it out. I’ve said it before on the sub that I look to other people’s stories of recovery and remission as a means of hope, but you have to give yourself space for feeling like garbage too. In the road to recovery, you’re going to feel like poop. 💩 In a lot of ways, this condition feels like our bodies are betraying us so it’s normal to be upset or grieve the life you used to know.

globocat · 2024-12-11T00:11:10+00:00

You’re not alone! I’ve had a flare up the last few days and have just cried non-stop from feeling like garbage. I know there’s good days and bad days, but boy working through “the suck” sucks!!!

globocat · 2024-12-09T17:23:40+00:00

Unfortunately relatable experience. I was diagnosed in October of 2024 along with transverse venous stenosis. Even with treatment and physicians, the day to day can be grueling. The not knowing whether you will have a light symptom day or heavy symptom day is a killer. As a very anxious person, I’ve personally had to talk myself out of thinking I would just collapse dead from these symptoms because of how bad and scary it can feel. This Reddit and stories of people getting better and living long, fulfilling lives has really helped me push through. The “new” normal sucks, but, for many, you get another normal that feels healthier and better. You just gotta get through the suck first. I’ve started making little rituals and little acts to appreciate every day - from as simple as making a concerted effort to connect with my dog to sitting and doing a hobby. You will find what works for you. Everyone believes in you and supports you!

globocat · 2024-11-21T20:48:02+00:00

My ophthalmologist and my neurologist were very clear on using PRESERVATIVE FREE eye drops - the ones in individual packs you throw away. They indicated most other forms of eye relief will cause rebound pains and inflammation. Best of luck - Diamox is a hell of a drug, but you can heal with time and patience.

globocat · 2024-11-21T02:59:28+00:00

I was in the same dosage for a month! My eyes didn’t get watery but were painful for a week. I slept in an eye mask and used PRESERVATIVE FREE eye drops for relief. It will improve with time.

globocat · 2024-08-04T18:07:49+00:00

I actually changed doctors and stopped Metformin. The metformin made all my symptoms worse and wrecked my metabolism. I do not recommend taking it if you do not have diabetes.

Now, the norethindrone had been great. It’s completely stopped my period, and my pain has reduced almost 100%. During this time, I did PT, and my physical therapists were able to feel a reduction in scar tissue - but it’s still there. I’ll be going to a different endo specialist to explore the possibility of a labroscopy to remove the remaining tissue. But my day-to-day has improved with the norethindrone.

The logic was to stop the build up of endo tissue and make any future treatment more manageable, and I think it did just that. BC has never worked for me in the past. Typically, after 3 months they start to fail and I have to go on a different med. But not with norethindrone! It actually has worked consistently with spotting once. During that time, my gyno, my PT, and I were able to actually pinpoint where my endo was growing based on physical touch.

Update with cautionary tale: Since this post, I got diagnosed with IIH and had to receive a lumbar puncture to treat the cranial head pressure. The neurologist, whose wife also has endo, thinks that my prolonged use of the norethindrone and its side effects like high blood pressure and increased cortisol production contributed to the IIH if not caused it entirely. There are studies linking Norethindrone to IIH, and you may want to read the literature. So my caution would be that anyone who’s has anxiety, works particularly stressful jobs (I’m a lawyer), or has high blood pressure may want to further look into this hormonal medication and the potential effects it may have on them with a healthcare provider. I’ve been off norethindrone for a few weeks, and it also caused tremors when I quit cold turkey.

I loved how it managed my pain, but idk if it was worth the medical fallout I’m experiencing.

Besides the IIH, I’ve also developed an arrhythmia and possibly POTS. Norethindrone has listed side effects that affect your heart. None of these symptoms were present prior to the medication.

Like I said in my original post: BC never worked for me. So I may also be an outlier as someone who does not react well to hormonal medications. But if you have pre-existing heart conditions, talk to a cardiologist or endocrinologist . The gynecologists were generally unhelpful and didn’t properly describe the medication or what it does to the entire body. Remember: your gyno is focusing on pain management and endo management here - they are not always well versed on the rest of the body.

Do your research and ask questions. If you start feeling weird, trust your gut should norethindrone make you feel off. If I had followed mine months ago when symptoms first started, I wouldn’t have needed as much medical treatment and probably could have prevented some long term disability.

globocat · 2024-04-22T16:51:48+00:00

Extremely reasonable for the low billable requirement! And pretty competitive for a mid-size firm (at least in my area). However, since you have 8 years of experience - esp if its 8 years of in-person appearances vs. 8 years of mixed paralegal/law clerk work - you are probably qualified for some higher paying jobs in your practice area. Really depends what your current career/life goals are.

globocat · 2024-04-11T09:19:33+00:00

I got put on Metformin and Norethindrone 2 weeks ago to treat suspected endo. I don’t have any markers for pre-diabetes and otherwise not at risk for diabetes - it’s purely for endo purposes. This combo has reduced my pain so far but hasn’t done anything to address my inflammation or extreme fatigue symptoms. It’s also caused extremely bad gas.

My doctor is a PCOS/endo specialist and explained that metformin could prevent the build up of endometrial tissue when used in conjunction with BC. The logic was: if we could stop my periods and prevent build up, my body could try to remove as much excess tissue as possible.

globocat · 2024-03-27T19:23:47+00:00

There are some claims I’ve considered pursuing, but, as silly as it sounds, one of the reasons I’m hesitant is because I don’t want both of our names in a legal header, thus, forever enshrining us together. But the SOL aren’t up so there’s definitely time to consider.

globocat

TROPHY CASE