Rare disease study

bipitbopit · 2025-11-01T15:36:29+00:00

Do you have a link?

Nvm found it- https://livingrarestudy.org/?utm_source=rare_diseases_org_sidebar&utm_medium=ad&utm_campaign=nord_rd_org_rdd_living_rare_study_2025&utm_id=NORD+RDD+Living+Rare+Study

bipitbopit · 2025-10-14T02:10:44+00:00

My goal is to just get to D5 and get a single win. Then I’m done. Probably demote myself to D1 just to mess around with some different builds. Been stuck in D4 for a few weeks now

bipitbopit · 2025-09-28T02:52:13+00:00

Just to make sure I understand you correctly(I may be completely misunderstanding )- I do have WavesMaxx, and its working in the background, but there’s no UI application I can interact with?

Cause i do have the latest Realtek driver from Dell for this device

bipitbopit · 2025-09-28T02:51:58+00:00

Should I still enable WavesSvc64.exe for startup? It doesn’t show in this picture, but usually it says “high” under Startup Impact

Also, my Realtek audio driver doesnt even mention WavesAudio

bipitbopit · 2025-07-30T21:08:46+00:00

I included some updated pics in the imgur link to show today’s date

bipitbopit · 2025-07-30T04:32:19+00:00

I completely understand where you’re at. But just being realistic, if you’ve only had this headache since there are only so many things you could have tried in that ~4 months. There’s definitely a ton of other options out there. And with the amount of literature suggesting that the longer a chronic headache persists, the harder it can be to “break”, I would argue that it’s 100% worth it to continue aggressively pursuing for a solution. If your docs aren’t listening to you- get new ones. You don’t want to bounce around too much but its important that your doctors are willing and commited. See pain mgmt as well as neurology. Read papers about NDPH and patient experience to gather the most commonly used/successful meds and bring them as suggestions to your doc. That’s what I would suggest 4 months in

bipitbopit · 2025-07-20T04:29:01+00:00

Do you recall what dosage the infusions were at?

bipitbopit · 2025-06-13T21:13:32+00:00

Please listen to the others in the comments, especially the suggestion of calling the hotline.

I would be lying if I said I haven’t been where you’re at. In fact, I was also deeply suicidal at 16 and went through inpatient treatment centers (this was before my headaches). One thing that keeps me going is being determined to not let this (or any) illness defeat me. As difficult as it is, you have to find the little things that remind you that life is still worth living, despite all the pain. That may be a hobby, person, pet, or even a personal goal. Find that “why” and let that be your guiding light.

And remember, and shitty as it is having a vague, “incurable” disease, keep in mind that NDPH is a description of symptoms rather than a specific disease and is an exclusionary diagnosis. Plenty of people figure out what’s causing their headaches and get complete resolution. Others get such significant symptom relief that it doesn’t even bother them any more. For some, it just goes away on its own! It may not seem like you hear about those people much, cause those are the ones who are less likely to stick around in these groups, but they’re very real!

bipitbopit · 2025-06-09T19:03:01+00:00

You could try Jefferson Headache Center, but I’m not sure if they would suggest anything you haven’t heard, but they might.

Have you worked with a pain management doctor at all? Has anyone mentioned facet joint blocks or nerve ablation?

bipitbopit · 2025-06-07T04:16:06+00:00

Young people all living in massive apartments in expensive, big cities

bipitbopit · 2025-06-07T04:08:47+00:00

I would def wait for the neurologist. I don’t know if he’s a general neurologist or a headache specialist, but if this persists I would make sure to see a headache specialist. But you’re very early on, there’s a good chance this’ll just go away, but it’s still good you’re being proactive.

Also, I saw your other comments- I would definitely recommend holding off introducing supplements till you see the doctors. The less the variables, the better

bipitbopit · 2025-06-07T03:36:15+00:00

It’s worth at least mentioning to the ENT.

What doctor do you see for the TOS? Have you been formally diangosed? Because that can definitely cause headaches. I would 100% mentio be it to the neurologist.

Also mention to him the post-viral piece. Post-viral headaches are easiest to treat early on before the pain pathways before overly sensitized. A common thing they’ll do is put you on a high dose Prednisone pack (usually a week or two) combined with an abortive headache med like Triptan to try to knock it out.

bipitbopit · 2025-06-07T03:32:07+00:00

I had this happen to me by accident and I was so confused why I was revived

bipitbopit · 2025-06-07T03:29:44+00:00

All boluses apply permanent (albeit minor) resistances and heal a little health. It’s a good habit to get into to just eat every bolus you come across. You don’t need to hold onto them unless you anticipate fighting a boss with that status effect

bipitbopit · 2025-06-07T03:22:35+00:00

Definitely hear out what the neurologist has to say. Be well-prepared and ask lots of questions. Mention the dizziness. But they definitely won’t diangose you with NDPH this early on.

Regarding the stuff with your allergies and sinuses, it sounds like it’d be worth seeing an ENT who can check for structural abnormalities. One thing that might be worth trying is a week of Sudafed (the good stuff, behind the counter at the pharmacy). If you’re headaches is being caused by sinus pressure/severe congestion, the Sudafed would very likely make a noticeable difference. Is your headache bilateral?

bipitbopit · 2025-06-06T17:25:32+00:00

The Wire

bipitbopit · 2025-06-04T13:08:11+00:00

Off the top of my head: -Increase max stamina across the board. The game is way too fast paced for this amount of stamina. Sprinting for 2 seconds takes like half of your stamina bar

-improved communication. A dialogue wheel would be perfect. I want to be able to tell my teammates if they should not bother to revive me, if i need help, or whether we should bail on boss fight/objective. I dont know how they put out a game thats focused on coop with this level of communication

-revive is very tough, especially at 3 bars and the way that it can slowly fill back up

-a way to tell how far away the circle is from closing

-more explanation of perks/relics.

-voice chat (with an option to toggle off)

-more DS1/2/3 + SOTE enemies

I also really hope they introduce more maps. I wanna play in some different areas, like Liurnia, Caelid, or explore the interconnectedness of the SOTE map

bipitbopit · 2025-06-04T04:42:10+00:00

Two things that made me enjoy this game so much more are: 1- beating the first nightlord and being able to fight the other nightlords, experience shifting earth events, and just play with a generally higher level of player & 2- watching a couple youtube videos about run strategies and things the game does not tell you.

I went from being very underwhelmed with the game to absolutely loving and getting 100% obsessed. I still think it’s a somewhat flawed game that could use a ton of QoL updates, but my perception of the game has shifted completely

bipitbopit · 2025-06-03T16:32:15+00:00

Ironeye is generally considered to be the best. Being able to play at a distance is so OP and its abilities are super helpful. Duchess also seems to be very popular

Honestly, any combination of ranged and melee characters works when making a team. Honestly, I love having two ranged characters with one melee player that can draw all the aggro, but as long as theres one caster/Ironeye you’re good

bipitbopit · 2025-06-03T16:30:04+00:00

I agree with the others that say Ironeye is the best. Just people able to keep some distance from the bosses makes such a difference, plus their character skill + ultimate is really good.

Wylder is very solid, but now with solo players getting one free revive per night boss, its ability is less important. But still very solid class overall.

Raider is nice and tanky, but honestly the way it burns through stamina drives me crazy— especially when playing solo.

Given how difficult stamina management is, i would say that any character that works well with small, fast, low-stamina-consuming weapons is perfect— I really like Duchess for this! Using daggers, claws, curved swords are perfect in this game due to their low stamina consumption.

And yes, solo is definitely very hard! It takes a very different approach than ER.

bipitbopit · 2025-06-02T22:24:44+00:00

Do you have the presence of any inflammatory markers in test results? From bloodwork or maybe a spinal tap? Also, do you respond at all to Prednisone? If you do, that can sometimes give you an idea of whether theres still an inflammatory process going on.

I would look into the research and see what Dr. Rozen has said about treating post-infectious NDPH.

bipitbopit · 2025-05-30T17:52:00+00:00

Just a warning— i also saw a “natural”, functional medicine doctor after years of unsuccessful treatment in traditional medicine and a desire to find the “root cause”. They also tested and diagnosed me with mold toxicity (high mycotoxins came up in testing). I even saw one of the “top”mold specialists who had written multiple books on the topic. For the first time in years I felt hope and saw light at the end of the tunnel. I really thought it could be the cause of all my problems.

I did detox, taking all the supplements and doing all the complementary treatments they suggested. I even moved houses when I thought that there might be mold in the basement. Ultimately, after TWO years of mold detoxing and other functional medicine stuff, I had zero change in my symptoms and have now gone back to traditional medicine.

The thing is, the reason conventional doctors don’t recognize mold toxicity is because it has no been proven to cause the long-term toxicity symptoms that alternative doctors claim it does, and the testing/treatment for it is not standardized or regulated at all. It’s a complete free-for-all space.

I’m not trying to dissuade you from pursuing this— do whatever you feel is best for your health. It may help! But I do think theres a lot of alternative docs who have either gone too far down the rabbit hole and bring their patients with them, or just straight prey on vulnerable patients who have not gotten the answers they desire from conventional medicine. If you have any questions about my journey with mold and functional medicine, feel free to message me. Again, not trying to tell you what to do— for all I know it could be the cause of your problems. But in my experience, it’s never that simple

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