Photosensitivity dizziness

Porphyria question with a genetic test

2024.05.12 16:45 SaltyWay8457 Porphyria question with a genetic test

I was diagnosed about 3 weeks ago with Porphyria after urine testing. The head doctor at the medical office has called me in, and not my usual doctor, to break the news. I am a 37 female, mother to 4 daughters. On too many medications to really announce at the moment. So my issue is, I have been having symptoms on and off since I was about 19.. but had never heard of porphyria up until my physician wanted to test me for it. In the last year, I developed photosensitivity, muscle weakness to the point some days trying to walk I was falling over, numbness of toes and fingers, deep burgundy urine once, brown urine once after my last hospital trip with severe abdominal pain, I developed bouts of tachycardia, tremors, legs go completely numb, difficulty breathing, hypertension reaching 176/120, dizziness, vomiting, .. then began getting confused, disoriented and had a few bouts of hallucinating.. I've seen so many doctors for years, and am so grateful that my doctor pieced this all together. I go to hematology/oncology tomorrow.. all labs are normal most of the time, no diabetes or anything, but I've had low vitamin D, and bouts of anemia.. while waiting on my apt. Tomorrow, I had genetic test done, saliva sample, but it came back as negative for porphyria. . Can I possibly have a different type than I was tested for ? It was a 10 type panel I was ran for. And my 11 year old has symptoms as well . Thank you
submitted by SaltyWay8457 to AskDocs [link] [comments]


2024.04.28 17:12 DramaticWall2219 Just got a referral to rheumatologist and I am doubtful...

Hello everyone,
First time writing at this sub. I will try to keep this brief and please let me know if anything is not allowed here. I am in the midst of being examined for myasthenia gravis. My current diagnoses include h-EDS, IST (& suspected POTS), (suspected) endometriosis, sebo/sebopsoriasis, osteoarthritis, bulging discs, and recurring SIBO. The neuro who suspects myasthenia gravis ran 11 vials worth of blood tests to rule out or in other conditions that may cause muscle weakness. I also had an MRI to rule out MS, stroke, aneurysm, etc. The only things that have returned noteworthy are:
Complement c4: 9 (15-57)
and
ANA: 1:40 Nuclear, Homogenous
I also have had high MPV for years which doctors say is fine and low IgA which doctors also say is fine even though when I get sick, I get really terribly ill for way longer than I should. I've always been a sickly person. The neuro said in any other circumstance the ANA would be irrelevant, but given the low complement he feels it may be significant. Complement c3 was on the very low end of normal as was creatine kinase (31; 29-143).
The tests included those for inflammation, lupus, ra, sjogrens, polymyositis, lyme, and more. All normal.
He has referred me to a rheumatologist to look into this further and I suppose I am very wary of going down this road. I've been referred to them several times in the past and it seems they are quite limited in their scope. While this is the first time anything in my blood work has actually shown autoimmune activity, I am doubtful they will even entertain pursuing my case.
My providers all believe I have autoimmune activity and neuromuscular dysfunction, but would a rheumatologist really be able to do anything if I don't have any antibodies or signs of connective tissue inflammation?
My symptoms include: brain fog, sleepiness, fatigue, poor memory, muscle weakness, ptosis, strange bouts of deep seated muscle pain beneath large muscle groups, various types of headaches and migraines, photosensitivity, dizziness, tinnitus, double vision, eye pain, poor balance, poor temp control/flu like shivers, night sweats. I flare once every 4-6 weeks.
I do not have joint pain, swelling, or redness. I do have rashes which are treated sufficiently by antihistamines. I do experience extreme flushing that comes and goes but has no distinct border or pattern.
I have been on 6 mg low dose naltrexone for over a year and and 600 mg gabapentin for even longer. I sometimes wonder if this is masking other symptoms. I am also keeping an eye on TSH levels as they have and continue to decrease over the years (last test was .8; .45-4.5). No one has tested for thyroid antibodies.
I guess my question is, what can I do to make this appointment productive and fruitful since it does not seem like I am a typical rheum patient? Are there any other tests that are warranted or conditions to be considered? While I wouldn't necessarily consider myself to be in pain day to day, my symptoms are incredibly limiting and I do not have the ability to take care of basic necessities.
submitted by DramaticWall2219 to Autoimmune [link] [comments]


2024.04.23 15:40 SaltyWay8457 Have any of you been DNA tested?

I was diagnosed last Friday with porphyria, after a couple years of vomiting, dizziness, nausea and fatigue.. then all of a sudden I began having random hallucinations, insomnia, and photosensitivity to the point I was blistering under the lights in the warehouse I worked at, and blistering after sun exposure. Then the severe abdominal pain and headaches started. So, a NP that I adore decided to do a porphyrin urine test.. and low and behold, very high levels (my last attack was a monday-thursday), she tested me on a Tuesday.. 5 days after my attack ended, once I told her about my bouts of confusion and hallucinating..I've been in touch nearly daily with the porphyria foundation, they are amazing, and recommended a PBG and ALA.. I ended up in the hospital Saturday.. I asked the drs. for the 24 hour urine test that was recommended, but they didn't have the appropriate container or additive.. so I'm still waiting. I have since then been having bouts of hypertension (170s/109ish), tachycardia, and shortness of breath (the hospital did make notes of this, since they were able to see it all while I was hooked up.. I was told about the urine test , that things could go wrong, or show a false negative if mishandled, exposed to light.. etc. I did get the paperwork for my Dr. To fill out for the free DNA test, that I will give at my apt. Today... Just curious if any of you have gone this route ?
submitted by SaltyWay8457 to Porphyria [link] [comments]


2024.04.19 00:00 SaltyWay8457 Porphyria.. call from Dr. Today

37 year old female, diagnosed with IBSD, photosensitivity, GERD, hypertension (in the last year), fibromyalgia, heat and cold intolerance, fevers daily on and off ... My labs are sometimes slightly off, but none of my doctors, rheumatologist, or dermatologist have seemed concerned. I made a post a few days ago I believe with a question. So, I did see my labs before my doctor did, I saw them Monday, my doctor didn't see them until today. I knew my labs looked off on my spot urine test ... Originally, after testing Ana and Anti DS DNA, we suspected lupus, but rheumatologist said no, it just fibromyalgia.. but then bouts of severe stomach pains, body pain(I'm always in pain), vomiting and dizziness for weeks at a time.. I'll be seeing another gastroenterologist next week.. I was being patient, waiting on the office to call me about the labs . Which I already saw.my doctor began suspecting porphyria last week and did a spot urine test. My Heptacarboxyl 7cp was high, and coporphyrin 1 and 111 were high. She just saw my labs today.. called me, and stated they need to get me into the office ASAP to discuss my results, tomorrow... And I'm meeting with I guess a more senior doctor in the office for a discussion... Not my doctor.. so I am really concerned.. if anyone can maybe ease my worry.... When we thought it was lupus, and my ana and anti DS DNA were elevated.. they called me with the results.. were concerned.. especially after blistering after being under a florescent light.. I've always gotten calls telling me the news . This is the first time they want to discuss my labs in person.. vs. over the phone. Also, I have had moments of hallucinating, which I did tell my Dr. Last week, and today, I keep getting short of breath. Oxygen has been around 94-91 spO2.. heart rate will hit 130+ just by trying to walk a few steps.. I guess the change up in doctor's and no over the phone info.. and seeing that they didn't complete my visit records online.. it just said that it was private.. normally I know everything.. so I am concerned.. what are your thoughts... ?
submitted by SaltyWay8457 to AskDocs [link] [comments]


2024.04.10 02:45 musicorloseittv MusicOrLoseItTV Reddit Community Rules Updated: 2024 April 13 - New Info On NSFW, Cussing, Copyright, Cover Songs, AI

MusicOrLoseItTV Reddit Community Rules Updated: 2024 April 13 - New Info On NSFW, Cussing, Copyright, Cover Songs, AI
MusicOrLoseItTV Reddit Community Rules Updated: 2024 April 13
Don’t be intimidated by this long post. A concise list of the rules is displayed at the main homepage for this musicorloseittv subreddit community.
Please ensure you familiarize yourself with the rules. I aim to make this community as friendly and fun as possible. I don’t enjoy removing posts or banning. A link to these rules is included in an automatic welcome message sent to all new members. Rule breaking posts will be removed if found. Depending on the severity, rule breaking may result in a warning, temporary ban, or permanent ban. Rules feedback is welcome in the comments area.

What’s New?

• In order to be more helpful to creators, the “Feedback Request Limitations” rules section elaboration has been updated to state that in a post’s text body only (not the title), mentioning something to the effect, “I am happy to answer any questions about the song or video in the replies” is ok. In attempt to avoid pesky pleas for engagement disguised as feedback requests and doing the utmost to connect music fans and music creators, this gives music creators a bit more latitude. Music creators here are strongly encouraged to read: 10 Ways Music Or Lose It Supports And Encourages Music Creators.
• A new section titled “NSFW Content / Cussing / Vulgarity / Graphic Violence Are Not Allowed” has been added to the rules. This includes information about what types of cussing is not allowed at this community.
• A new section titled “Required Information In Posts” has been added to the rules. Instructs “Title & Link Share Only” method and also including a link to lyrics are now required. Instructs when to use warnings regarding possible seizure trigger risks and, when allowable, especially sensitive content.
• A new section titled “Music Creators / Journalists / Vloggers Must Contact Mods After Joining At Least Once” has been added to the rules. It’s important for music creators, journalists, and vloggers to know who the mods are.
• “Share Original Source Links • Copyright” has been changed. It is now “Copyright & Original Source Links” and clarifies that music creators in this community cannot post cover songs or remixes or mashups here unless you have licensing/authorization. It’s also clarified that AI music shared must not violate copyright law.
• A previous section titled “Health & Safety” was eliminated. It included information about “promoting and/or glorifying drugs/gangs/violence” which is now covered in the “NSFW Content / Cussing / Vulgarity / Graphic Violence Not Allowed” rules. It also included a requirement to caution members about “Possible Seizure Trigger Risk Warning” which is now covered in the “Required Information In Posts” section.

Elaboration Of The Rules

1 Have Fun
You’re welcome to post your favorite music and initiate music-related discussions within the reasonable bounds of all numbered rules listed below.
2 Respectful Conduct
Treat others respectfully. • If you disagree with an opinion, engage in disagreement respectfully. • If you post topics, instead of hate, post to celebrate. • This community abides by the “In-Person Social Party Standard” outlined here: https://www.reddit.com/musicorloseittv/comments/1c08fls/comment/kyuslvi
➤ Elaboration:
‣ “In-Person Social Party Standard” Explanation: If you were at a pleasant in-person social gathering, everyone would be expected to behave respectfully and politely. If someone becomes offensive by brazenly being rude or instigating conflict, you’d expect the host to make the offender stop or leave.
‣ Free Speech VS Freedom Of Association: Social media venues are the digital-town-square and, despite being so-called “private companies,” are often operating as in-effect governments. While I personally demand government and social media venues allow me utmost free speech, this does not require me to accept any conduct from anyone else on an induvial basis or private group basis. I expect government to let me live peacefully in my home yet that doesn’t mean after inviting guests over I should then be forbidden from ordering them to leave if they behave offensively to me in my personal space.
‣ Higher Standards For Online Discussions: This community is meant to be a fun place for music fans and music creators to enjoy music together. Personal attacks have no place here regarding race/nationality, age, religion/non-religion, gender, medical conditions, economic status, political views, or being LGBT+. Mocking someone’s death is unwelcome here.
‣ Be Uplifting – Not Needlessly Upsetting: When a member of this subreddit community shares favorite music, unless they’re specifically inviting debate, there’s no need to declare your dislike of the music someone else is enjoying – especially when it seems it would serve no purpose other than unnecessarily being a downer on their enjoyment.
‣ Examples Of Ways To Respectfully Disagree (Only When Debate Is Invited):
  • “I am not connecting with this song yet I am happy for you enjoying it.”
  • “My match vibe isn’t there with this song yet it’s cool you found a song that’s a match for you.”
  • “I am not seeing how you arrive at this conclusion. Do you mind elaborating?”
‣ Disrespectful examples of discussing music:
  • “This sucks. Something is wrong with you!”
  • “I hate that band and can’t believe you listen to this!”
  • “You’re an idiot. That album is total trash!”
‣ Helpful resource
10 Ways to Disagree Online Without Being a Jerk https://www.christianitytoday.com/karl-vaters/2018/june/10-ways-to-disagree-online-without-being-jerk.html
3 NSFW Content / Cussing / Vulgarity / Graphic Violence Are Not Allowed
Cussing, extremely sexual, intoxicant glorifying, gang promoting, violent, or especially scary/gory/maleficent content is not allowed here. • If you wish to share content you feel justifies an exception for artistic merit or important societal discussion, contact mods for consideration. A “Message the mods” option is at the homepage. • No sexual/violent/gross/sexual innuendo usernames.
➤ Elaboration:
There is a vast library of music available for humanity to choose from with plenty of music that is suitable for this community’s rules.
‣ Zero Tolerance: Any discovered interactions that appear to be an adult inappropriately interacting with someone underage will be removed, reported to Reddit, and reported to authorities. Any such offender will be permanently banned.
‣ Appropriate Conduct: I want to ensure adults here are utmost responsible regarding what’s shared among the presence of community members who are aged 13-17 as allowed by Reddit. If you are unsure if the music you are thinking about sharing in this community is ok or not, ask yourself, “Would a typical parent/guardian likely find this music to be acceptable in the presence of their 13-17yo teens? If an adult stranger wanted to share this with my child/grandchild/nibling, would I be ok with that?” If no, don’t share it. Mod reserves right to override members’ judgment calls and remove any content.
‣ Cussing: Regarding hard cussing, even some adults are uncomfortable with it. Any variations of F word, S word, C word, D word, N word (er or a), ahole word(s), or sexually vulgar words are not allowed here. This includes versions in other languages and emojis used in a vulgar manner. Be considerate of people of different faith backgrounds and do not use religious words in a manner likely to be offensive. Despite infrequently cussing in my personal life at times, I try not to cuss around strangers out of consideration of their comfort levels. This rejection of cussing is in accordance with the aforementioned, “In-Person Social Party Standard.” This applies both to music shared and also language used in posts and comments.
‣ Exceptions For Artistic Merit And Important Societal Discussions: As mentioned above, if you wish to share content you feel justifies an exception for artistic merit or societal discussion, contact mods for consideration. A “Message the mods” option is at the homepage. However you must be willing to accept if “no” ends up being the answer.
Songs or videos depicting addiction in a manner that does not glorify intoxicants will likely be allowed with an “Especially Sensitive Content Warning.” Content warnings will be discussed below. An example of this is the music video “The Actor” by Alt-J because the drug addiction addressed is done in a serious manner.
Songs or videos depicting difficult subject matters important for societal discussion will likely be allowed with an “Especially Sensitive Content Warning.” Content warnings will be discussed below. An example of this is the song “Simmer” by Hayley Williams which includes the F word when refencing a potential abuser.
‣ Usernames: After “me too,” one would think social media sites would be more mindful about not allowing sexually vulgar usernames. If someone walked up to your spouse/partner and/or your teens at an ordinary social event and identified themselves in a sexually graphic manner, you wouldn’t tolerate it. Sexually vulgacrass/violent/gang/drug-reference/offensive/controversial usernames are not allowed here.
‣ Trolling: anyone suspected of trying to circumvent the unallowed cussing and unallowed content rules by seemingly repeatedly testing the limits will be warned and possibly banned.
‣ Members Who Wish To Be Designated Curators: This Music Or Lose It subreddit community will at times offer select music fans and select music creators to collaborate as discussion leaders or music curators for special posts such as Song Of The Day. Curator collaborators cannot have NSFW profiles nor profiles displaying extremely sexual, crass, intoxicant glorifying, gang promoting, violent, or especially scary, gory, maleficent content. It’s the mod’s judgment call. Anyone can easily create a second Reddit profile free of that type of content. Especially when using the app, Reddit makes it easy to switch from one account/profile to another.
‣ Moderator Mental Health: For my own mental health and well-being, I do not want to be bombarded with crassness, vulgarity, graphic violence, and disturbing images. I personally feel there’s an excess of this type of music content at this point in history. I want to contribute to sharing music that – whether joyful or sad – can reasonably be expected to be suitable for the widest range of people possible. There are plenty of places online where crass for the sake of scoring shock value views can be shared. If crass/vulgaviolent/disturbing music content is your primary interest, this community isn’t the right one for you. No subreddit community can be everything to everyone.
‣ Mods Can’t Catch Every Violation: There’s no humanly-possibly way a moderator can catch every rule violation. Reddit provides mods no tools to know if any members have a criminal record. Reddit appears to provide mods no tools to distinguish 13-17yo profiles from 18+yo profiles. If you see something you suspect is inappropriate, dangerous or illegal, you can report the post. To report, look for three horizontal dots in the post/reply area > then click and a menu of icons will appear > select the flag icon.
‣ Resources:
Parenting, Media, and Everything in Between https://www.commonsensemedia.org/articles/online-safety
Cybersecurity Awareness Program Parent and Educator Resources https://www.cisa.gov/resources-tools/resources/cybersecurity-awareness-program-parent-and-educator-resources
4 Required Information In Posts
Posts must be done using “Title & Link Share Only” method so that accompanying URL images are likely to be visible • “⚠️Possible Seizure Trigger Risk Warning” is required for vids with flashing visuals or extremely fast and frequent edits or dizzying images • “⚠️Especially Sensitive Content Warning” is required for rules-compliant content that might be especially upsetting to vulnerable people • A link to lyrics must be included.
➤ Elaboration:
‣ “Title & Link Share Only” Method: At https://www.reddit.com/musicorloseittv/comments/1aexdgp/seeming_solution_to_the_problem_of_accompanying the post titled “Seeming Solution To The Problem Of Accompanying Link Images Not Appearing In Desktop View” shows screenshots how to do the “Title & Link Share Only” method properly. The post also explains why this is important to this community’s music fans and music creators. Failing to post using this method tends to result in the images accompanying URL links not being visible to members accessing this community on desktop/laptop web browsers. Each new member should receive an automated welcome greeting. The greeting includes a link explaining why the “Title & Link Share Only Method” is best.
‣ Possible Seizure Trigger Risk Warning In Post Titles: If you share content with strobes, flashing lights, especially dizzying visuals, and/or an especially high amount of numerous fast edits, include in your post title “Possible Seizure Trigger Risk Warning.” This is important to do, being mindful of people with vulnerable medical conditions such as photosensitive epilepsy. Use your best reasonable judgment. Include the ⚠️ emoji with these warnings.
‣ Reference:
Epilepsy Foundation Files Criminal Complaint And Requests Investigation In Response To Attacks On Twitter Feed -- Use Of Flashing And Strobing Lights, Including Gifs And Videos, Harmful To People With Epilepsy And Seizures https://www.epilepsy.com/stories/epilepsy-foundation-files-criminal-complaint-and-requests-investigation-response-attacks
‣ Especially Sensitive Content Warning: If you want to share allowable music that might be upsetting to vulnerable people who have experienced abuse, PTSD, addiction, mental medical conditions, or other circumstances worthy of utmost sensitivity, include a waring in the post title or in the post text-body. When in doubt, contact mods beforehand. A “Message the mods” option is at the homepage. Include the ⚠️ emoji with these warnings.
Example:
⚠️ Especially Sensitive Content Warning: The following song and music vid reference drug use. Mod has approved this post as an allowable, discretionary exception to rule #3 for important societal discussion.
‣ Lyrics: A lyrics link is required in the post-body section. Lyrics websites include Shazam, Lyrics . com, LyricFind, and AZLyrics/Musixmatch. If song is non-English, include English translation link. Don’t re-post lyrics in text body if you are not copyright owner. Lyrics are now required in order to be utmost inclusive to people for whom English is a second language and also people deaf/hard of hearing, experiencing hearing loss, learning disability, attention deficit, and autism. This is required even for lyrics videos so that people with these difficulties have additional aid to follow along at their own pace. Alternatively, if you share a Spotify link that includes lyrics or a YouTube vid with the lyrics in the upload description, instead of providing a lyrics link URL, you can cite that in the post-body section. This is not required if song is instrumental or has incomprehensible anti-oration instead of actual words.
Examples:
(note - to be clear, the URL text does not have to be visible in the post - in standalone posts, Reddit will automatically transform URLs into showing the URL's accompanying image)
Nat King Cole - Unforgettable https://youtu.be/iF7kOq0peAU
Lyrics
or
David Kushner - Daylight https://youtu.be/PZtwxD5Myk0
Lyrics available in video upload description
or
James Horner - Rose https://youtu.be/iUH0dEe1jvA
Lyrics N/A, has incomprehensible anti-oration instead of actual words
or
Hans Zimmer - Inception: Time - Orchestra Version https://youtu.be/SswRnJgX1_s
Lyrics N/A, instrumental
‣ References:
How Closed Captions Benefit More Than the Deaf and Hard of Hearing https://www.rev.com/blog/caption-blog/how-captions-benefit-more-than-the-deaf-and-hard-of-hearing
Importance of Captions for Everyone https://www.usu.edu/accessibility/captions/benefits
5 Copyright & Original Source Links
Suspected copyright violations will be removed from this community. • Share official source links for content such as songs/vids/ + news reports + social media posts. • Music creators may share only music and visuals they entirely created themselves or are licensed/authorized to use. • Music creators cannot post unauthorized covers/remixes/mashups. • AI music shared must not violate copyright law. • Lawful parody and legitimate fair use is welcome.
➤ Elaboration:
‣ To Music Creators: share only music you entirely created and own all aspects of (audio and visuals). If you did not create any aspect of the audio and visuals that are a part of the music you share (such as artwork accompanying your song on Spotify or your music video’s footage) then you must have licensing/authorization to use the audio and visuals which you didn’t create. This means in this community you cannot post covers/remixes/mashups of other music entertainers’ content unless you have licensing/authorization to use that material. If you’re using aspects of copyrighted or creative commons or “free” material, your original-source upload description must confirm you’ve got permission (or licensing) to use the copyrighted material. Suspected violations will be removed at mods’ discretion. You are strongly encouraged to upload your best and/or newest original content.
‣ To Music Fans: Please share music links directly from the official profiles of music entertainers from well-known mainstream sources like YouTube or SoundCloud. Alternatively it's ok to upload live performances from official channels’ music shows, talk shows, and awards shows in instances which it's likely a licensing agreement has occurred between the copyright owner and this type of uploader. Music Or Lose It does not support uploading from unofficial channels because that will dilute view counts. Links from channels that re-upload entertainers’ music in collage vids (using images they likely don’t own copyright to) if found will be removed.
‣ YouTube's Unique Copyright Detection System: YouTube appears to allow random people to upload famous entertainers’ music and then appears to give any money made from that uploaded music to the copyright owner. When this happens and the upload is allowed to remain, it is reasonably presumed those types of YouTube uploads from random people seem to have been entered into an in-effect licensing agreement. Because of that in-effect licensing agreement, posted YouTube links of dance-routines, remixes, and mashups may be allowed here as an exception to the above-mentioned requirements. It's up to the discretion of the mods.
‣ Copyrighted Photos, Clip Art & Images: uploads of photos, clip art, and images you don’t own the copyright to if found will be removed.
‣ Don't Copy & Paste News Reports: do not repost the entire text of a journalist’s report in your posts. Instead - just post the link to their report. Suspected violations if found will be removed.
‣ Artificial Intelligence (AI): Music created using artificial intelligence must comply with copyright law. Legislation is presently evolving regarding this type of music’s impact on copyright holders’ and celebrities’ likeness. See: Elvis Act Becomes Law as Tennessee Leads the Nation. While lawful parody will be considered, AI music suspected of copyright violations will be removed. It’s up to mod’s discretion.
‣ Fair Use & Parody: Music Or Lose It is a strong supporter of fair use and entirely opposes how venues like YouTube are set up to allow automatic disputes that result in frequent demonetization of music reviews and video essays playing small excerpts of copyrighted music. However it’s also clear some content creators don’t fully understand fair use. If a post here is suspected of failing fair use standards and indeed violating copyright, it will be removed.
‣ References:
6 Reciprocate The Support You Receive
Reply to the supportive comments you receive. • If your post gets popular, reply to at least five of the comments. • If you hope people will reply to and upvoter your posts - then you can understand other members also hope to receive the same support. • Reciprocate the encouragement.
➤ Elaboration:
‣ To The Music Fans: We should treat others as we wish to be treated. All music fans who post here probably want to connect with other music fans hoping someone will write something nice about what they’ve shared. If you see a post by someone else with 0 comments, please consider sparing some time to post something nice to make your fellow music fan feel less alone – as time permits now and then. The more potential new members see upvotes and plentiful replies, the more they’re likely to join. The more new people who join, the more the things you post are likely to be upvoted and replied to.
‣ To The Music Creators: This Music Or Lose It subreddit community wants to be as welcoming as possible to music creators. It’s one of the few subreddit communities that embraces “self promoting.” I totally understand some creators are already inundated with numerus tasks and may not like online forums’/communities’ expectations of engaging – such as replying to other people’s posts. As a creator myself, I used to totally dislike that expectation because I felt it was unreasonable. However, now that I have experience as a moderator, anecdotally I can relay that it seems creators who find time to interact with this small community get more replies on their own posts. Treat others as you wish to be treated. If you want to be heard and seen then imagine other music creators do too. As time permits now and then, reply something nice on another music creator’s post. If your Reddit username is the same as your brand username, replying genuinely (not spammy) to posts increases brand name visibility and creates the type of goodwill that makes people want to support you. If you haven’t already, at https://www.reddit.com/wiki/selfpromotion be sure to read “Guidelines for self-promotion on reddit.”
7 Goods, Services & Scam Prevention
Event tickets may not be sold/traded here • Goods + services may be sold so long as you link to a trusted site such as like Fiverr, Ebay or Etsy where you can publicly be rated. • Use caution before exchanging personal information or money. • Resources: Scams and fraud by USAGov https://www.usa.gov/scams-and-fraud + How To Avoid a Scam by Federal Trade Commission https://consumer.ftc.gov/articles/how-avoid-scam
➤ Elaboration:
‣ Be Vigilant To Anyone Trying To Get Money And/Or Personal Info From You: If anyone offers services to increase my status as a content creator, I research them with utmost scrutiny. It’s entirely ok to ask questions such as “Do you have an online presence where I can confirm you’re a real person with your legal name and location – such as LinkedIn?... Do you have uploaded proof of your credentials… Do you guarantee your results?... Do you offer contingency basis?... Are you on any public websites where the goods or services you offer has been rated such as Fiverr, Ebay or Etsy?” Feel free to copy and paste these questions to use if you conclude they’re helpful.
8 Participation Fairness
“Wait For 8” Rule: wait until 8 others post here before you post again. • Re-sharing the same content must be limited to every 2 weeks • Mod announcements, contests, and posts to promote discussions by designated members and select curators are exempt • There is no limit to legitimately replying (not spamming) to other people’s posts.
➤ Elaboration:
‣ “Wait For 8” Rule: This prevents inappropriate feed dominating. In the past, some music fans joined and excitedly shared numerous favorite songs -- post after post after post -- within minutes of joining. Some music creators joined and immediately shared numerous songs they made. Communities overtaken by feed dominators seem to result in poor engagement. Instead of a bombardment of feed dominating by 1 person, it’s better when community members get to experience a variety of posts.
‣ No Limit to Legitimately Replying To Other Posts: So long as you’re not spamming or disingenuously replying to self promote, there is no limit to replying to other peoples’ posts. Repeatedly posting the same text as a response to numerous posts (or to other members’ replies) is not legitimate.
‣ Exemption: There is an exception to this rule for the monthly summary and also community announcements/updates/contests/polls posted by the moderators. However, even the mods must be mindful of spacing those types of posts out, in order to not get carried away with inundating members with those types of posts. There is also an exception to this rule for discussions of cultural events (award shows, album release by major superstar, etc…) initiated by the moderators. An additional exception to this rule is for community members appointed by mods as select curators to initiate themed discussion posts - such as Song Of The Day. Likewise exempt designated community members still need to be mindful of avoiding feed dominating.
9 Music Creators / Journalists / Vloggers Must Contact Mods After Joining At Least Once
If you are a music creator, journalist, or vlogger who wishes to post your content in this community, you must contact the mods at least once to familiarize yourself with them.
➤ Elaboration:
‣ Why It’s Important For Creators To Make Contact With Mods After Joining: Akin to how you would introduce yourself to a host of a pleasant in-person social gathering you were invited to and attend, you need to make contact with mod of this musicorloseittv subreddit community at least once after you join. After joining, mod typically sends a check in type message to music creators, journalists, or vloggers who join. A reply to that message suffices as contact. If somehow you don’t receive a message from mods, then be sure to send one to the mods. A “Message the mods” option is at the homepage. This is important so that you know how to reach mods in case you have any questions. What’s more, at times there are contests for music creators and mods may need to contact you with questions pertaining to the contests. We want to ensure there is open communication.
10 Feedback Request Limitations
Feedback requests by content creators in-effect disguising as pleas for engagement will be removed. • Feedback can only be requested once a quarter when something very specific is asked before/during project creation or for demo versions. • For elaboration see: https://www.reddit.com/musicorloseittv/comments/1asro52/rule_update_limiting_feedback_requests_to_works
➤ Elaboration:
‣ To The Music Creators: It’s worth emphasizing so I repeat: This Music Or Lose It subreddit community wants to be as welcoming as possible to music creators. It’s one of the few subreddit communities that embraces “self promoting.” At https://www.reddit.com/musicorloseittv/comments/1bxhfs6/10_ways_music_or_lose_it_supports_and_encourages you are encouraged to read “10 Ways Music Or Lose It Supports And Encourages Music Creators.”
‣ Please Don't Try To Bypass The Feedback Request Limit: Writing something such as "Let me know what you think" is in-effect asking for feedback. If found, this type of post will likely be removed. It's not necessary. The existence of the comments section is already prompting a call for feedback. In your post’s text body only (not title), mentioning something to the effect, “I am happy to answer any questions about the song or video in the replies” is ok.
‣ Resources For Self Promoting: At https://www.reddit.com/musicorloseittv/comments/1asro52/rule_update_limiting_feedback_requests_to_works the post includes a list of numerous places for music creators to best seek feedback at.
11 High Quality VS Low Quality
Using all-caps, excessive emojis, “live,” or “spoiler” to bait for extra attention will be removed. • Teasepreview content and content only accessible by subscription will be removed. • Ensure posted questions aren’t something you can easily find in an online search. • Ensure post titles are clear and not vague. • Cite sources when making extradentary claims.
➤ Elaboration:
👎 Low Quality Post / Reply Behavior Likely To Be Removed:
  • uploads with excessively abrasive and poor audio quality. We understand amateurs must start someone yet the upload quality cannot be excessively poor
  • music creators’ original concert recordings with lots of audience talking and audience obstruction of camera view
  • using all-caps, excessive emojis (likely more than 2) in post titles or using the tags “live,” or “spoiler” improperly to bait for extra attention
  • music creators’ teasepreview content is not allowed - no one, especially strangers, should have to do extra work to access your content
  • content on venues where payment is required to access it. It’s the era of subscription fatigue so sharing a fully accessible example of your content is probably best
  • questions you can easily find an answer to on the internet by doing a typical online search
  • posts with vague titles or body-text that is difficult to make sense of
  • presenting claims as factual about songs/vids/albums/entertainers/awards or the music industry business without citing sources may be removed (especially regarding “on this day” type posts) when the claims seem to necessitate scrutiny
  • speculative posts because they are not valuable (example: I hear this record label might shut down”). If you don’t have reputable sources to cite, no need to post and speculate
👎 Avoid Repeated Negative Framing Discussions And Questions:
  • Isn’t Such-And-Such-Genre terrible?
  • Why do any of you like So-And-So-Entertainer?
  • What’s the worst album/song/entertainer of all time?
  • What’s a popular album/song/entertainer you hate?
*Perhaps a “Rant It Out Wednesday” flair might be created. Maybe.
👍 High quality post examples
  • What are your favorite songs while driving in the city at night?
  • What song to you and a relative have a special bond over?
  • What is a great playlist for a gym workout - for a country music fan?
  • What album (vinyl, cassette, CD, etc) has unique physical design?
‣ Avoid Unhelpful Replies: Humor is great yet constantly being sarcastic wears out its welcome fast. It’s inappropriate to post joke replies when someone posts a question trying to find information and answers. There’s never value in replying “I don’t know” to posted questions. Speculation answers are pointless – better to stay silent.
‣ When Numerus Emojis Are Ok: While adding more than 2 emojis in post titles may result in removal if found, using numerous emojis are ok as substitutions for bullet point characters when you post something with a lot of text - to break up the monotony.
‣ Suspicious Links: Links from suspicious websites that may be dangerous if found will be removed.
12 Moderators May Delete Anything At Our Discretion
If suspected rule breaking, conflict instigating, off topic posts, illegal content/conduct, or Reddit TOS violations are found then it will be removed and may result in banning.
➤ Elaboration:
‣ Discretion Of Mods: Mods cannot anticipate every bad scenario possible. Mods are within our rights to remove anything that we feel devalues this community. If a post is removed, it should remain in the “Posts” log of a member’s Reddit profile with a red trash can icon. The member can therefore still access the removed post and comments. Only the member themselves can permanently delete a post from their own profile’s “Posts” log.
Rule Updates History
Additional Recourses
END
submitted by musicorloseittv to musicorloseittv [link] [comments]


2024.03.19 02:14 RegrowthGuru ESSENTIAL OILS AS A NATURAL HAIR LOSS TREATMENT

In the search for natural alternatives to address hair loss, essential oils have emerged as a promising option. Known for their potent plant extracts, these oils contain various compounds that may benefit scalp and hair health. Among them, rosemary oil has gained attention for its potential to stimulate hair growth and improve hair thickness. It is thought to enhance blood circulation to the scalp and may also counteract the effects of dihydrotestosterone (DHT), a hormone implicated in hair loss. Additionally, oils like lavender and peppermint have shown promise in studies for their hair growth-promoting properties. This article delves into how essential oils can be used to combat hair loss and the scientific evidence supporting them.

WHAT ARE ESSENTIAL OILS?

Essential oils are concentrated, volatile plant extracts known for their aromatic and therapeutic properties. Obtained through methods like steam distillation or cold pressing, these oils capture the essence of the plant. Each oil, derived from various parts of plants like flowers, leaves, bark, or roots, possesses a unique chemical composition that defines its specific aroma and potential health benefits. Used for centuries in practices like aromatherapy and traditional medicine, essential oils play a significant role in holistic health.

HOW ESSENTIAL OILS TREAT HAIR LOSS

Essential oils may help in treating hair loss through several mechanisms, owing to their unique properties and compounds. Here are some ways they might contribute to hair health and growth:
It’s important to note that while essential oils can be beneficial for hair health, they should be used correctly. This includes diluting them with a carrier oil to avoid irritation.

EMPIRICAL EVIDENCE

Several studies have been conducted to evaluate the effectiveness of essential oils in treating hair loss, showing promising results:

RESULTS

User-reported benefits of essential oils for treating hair loss typically include the following experiences:

HOW TO USE ESSENTIAL OILS

Using essential oils for treating hair loss involves a few key steps to ensure effectiveness and safety. Here’s a general guide on how to use them:

SAFETY AND SIDE EFFECTS

While essential oils can offer potential benefits for hair loss, they also come with potential side effects, particularly if used improperly. Here are some common side effects to be aware of:

CONCLUSION

While essential oils offer a natural and potentially effective solution for treating hair loss, their use requires careful consideration. They have been known to stimulate hair growth, improve scalp health, and enhance the overall quality of hair. However, it’s crucial to approach use with caution due to the potential for irritation, allergic reactions, and other side effects. Proper dilution with carrier oils and conducting patch tests are vital steps to ensure safety and effectiveness. While essential oils may not be a universal remedy for all types of hair loss, they can be a valuable part of a holistic approach to hair care and wellness, particularly for those seeking natural alternatives.
References:
Note: This piece serves as an informative overview. Individual responses may vary, and consultation with a qualified medical professional is indispensable before initiating any therapeutic regimen.
submitted by RegrowthGuru to HairlossRecoveryCom [link] [comments]


2024.03.11 15:58 fayeee6 Eye doctor?

Hello everyone. I’ve been suffering with dizziness, headaches, vision blur, photosensitivity, etc. I was wondering what kind of eye doctor I should see if I wanted to check my eyes if something is wrong with them? I wear glasses currently. Thanks.
submitted by fayeee6 to VestibularMigraines [link] [comments]


2024.03.05 04:05 Moist_Ad_8262 Deja vu, help.

Where do I start here, I have had anxiety and OCD my WHOLE life. There are videos of me as a three year old doing repetitive actions. My parents took them because they were concerned on why I was acting weird. I have faced almost every kind of anxiety out there: health anxiety, Spiritual anxiety, magical thinking, POCD, HOCD, ROCD, Pure OCD, Real event OCD, the list goes on. You get the point.
Now, when I was in Grade 1 I had what is known as a cluster seizure. This is a bunch of seizures together that appear as one BIG seizure. There is no family history of seizures so the docs still don't know why I had this, but I was diagnosed with epilepsy. Now, Praise the Lord, I never had another seizure. But it became one of my MAIN fears with anxiety. That I was going to have another one.
For example, I started to get dizzy with strobes thinking that it was photosensitive epilepsy. Nope...just anxiety.
About a year after that I started to get these bursts of false smells of smoke out of nowhere. This is a symptom of temporal lobe epilepsy. But nope, also anxiety. I still get these sometimes if im REALLY stressed. So im used to my anxiety messing with me. However this one is different.
Back in May of last year I started to think about my seizures again, and I started to get worried about them. Shortly after that I was informed that I would be seeing my neuro in a few weeks for my final appointment with her. This got me REALLY concerned and about a week later I had this strong episode of Deja Vu, which again, is a BIG sign of temporal lobe epilepsy. However, I shook it off and moved on, forgetting about it. Two weeks later it happens again. Once again I shook it off and moved on. Two weeks later it happens AGAIN. This time I freak out. I start googling (how dumb I know, im a pretty seasoned anxiety sufferer and yet I did the single most stupid thing you can do) and get myself all good and anxious. At this point I was near a panic attack and I started to worry and freak out. I started to have them more and more frequently. First it was every 5 days. Then every 3, then 2 and so on.
June rolls around and I see two neurologists. Both of which tell me that I am probably ok. However my deja vus end up getting way more frequent. I talk to my neuro and get an EEG booked. It comes back clean, this did calm me a bit, but I didnt actually have a deja vu while hooked up to the EEG. So I brush it off and continue worrying.
Meanwhile the deja vus are still going on strong.
We jump forward to January of this year (big jump I know, but thats the healthcare system for ya) I meet again with my neuro, she is near positive that I am ok, however I am still having the Deja vus. And they are getting even MORE frequent. I then talk to my GP (who happens to have a masters in neurology), and she is ALSO pretty sure I am ok. However they CONTINUE to get worse.
That brings us to present day. I can't go a DAY without having at least several. They last like 2-10 seconds, and I get this feeling ive done X before and I can even see a false memory of me doing X before. But I can't recall the image afterwords. I am scared to DRIVE because of this. And I keep seeing posts on this sub where people were told their dejavus were just anxiety and then they end up being seizures. I just don't know what to do. Has anyone had this with anxiety before? I am so terrified.
submitted by Moist_Ad_8262 to Deja_Vu [link] [comments]


2024.03.05 03:52 Moist_Ad_8262 *long post* Deja Vu with anxiety. Help.

Where do I start here, I have had anxiety and OCD my WHOLE life. There are videos of me as a three year old doing repetitive actions. My parents took them because they were concerned on why I was acting weird. I have faced almost every kind of anxiety out there: health anxiety, Spiritual anxiety, magical thinking, POCD, HOCD, ROCD, Pure OCD, Real event OCD, the list goes on. You get the point.
Now, when I was in Grade 1 I had what is known as a cluster seizure. This is a bunch of seizures together that appear as one BIG seizure. There is no family history of seizures so the docs still don't know why I had this, but I was diagnosed with epilepsy. Now, Praise the Lord, I never had another seizure. But it became one of my MAIN fears with anxiety. That I was going to have another one.
For example, I started to get dizzy with strobes thinking that it was photosensitive epilepsy. Nope...just anxiety.
About a year after that I started to get these bursts of false smells of smoke out of nowhere. This is a symptom of temporal lobe epilepsy. But nope, also anxiety. I still get these sometimes if im REALLY stressed. So im used to my anxiety messing with me. However this one is different.
Back in May of last year I started to think about my seizures again, and I started to get worried about them. Shortly after that I was informed that I would be seeing my neuro in a few weeks for my final appointment with her. This got me REALLY concerned and about a week later I had this strong episode of Deja Vu, which again, is a BIG sign of temporal lobe epilepsy. However, I shook it off and moved on, forgetting about it. Two weeks later it happens again. Once again I shook it off and moved on. Two weeks later it happens AGAIN. This time I freak out. I start googling (how dumb I know, im a pretty seasoned anxiety sufferer and yet I did the single most stupid thing you can do) and get myself all good and anxious. At this point I was near a panic attack and I started to worry and freak out. I started to have them more and more frequently. First it was every 5 days. Then every 3, then 2 and so on.
June rolls around and I see two neurologists. Both of which tell me that I am probably ok. However my deja vus end up getting way more frequent. I talk to my neuro and get an EEG booked. It comes back clean, this did calm me a bit, but I didnt actually have a deja vu while hooked up to the EEG. So I brush it off and continue worrying.
Meanwhile the deja vus are still going on strong.
We jump forward to January of this year (big jump I know, but thats the healthcare system for ya) I meet again with my neuro, she is near positive that I am ok, however I am still having the Deja vus. And they are getting even MORE frequent. I then talk to my GP (who happens to have a masters in neurology), and she is ALSO pretty sure I am ok. However they CONTINUE to get worse.
That brings us to present day. I can't go a DAY without having at least several. They last like 2-10 seconds, and I get this feeling ive done X before and I can even see a false memory of me doing X before. But I can't recall the image afterwords. I am scared to DRIVE because of this. And I keep seeing posts on this sub where people were told their dejavus were just anxiety and then they end up being seizures. I just don't know what to do. Has anyone had this with anxiety before? I am so terrified.
submitted by Moist_Ad_8262 to Anxietyhelp [link] [comments]


2024.03.05 03:44 Moist_Ad_8262 Somewhat Long post. Wondering if anyone else can relate.

Where do I start here, I have had anxiety and OCD my WHOLE life. There are videos of me as a three year old doing repetitive actions. My parents took them because they were concerned on why I was acting weird. I have faced almost every kind of anxiety out there: health anxiety, Spiritual anxiety, magical thinking, POCD, HOCD, ROCD, Pure OCD, Real event OCD, the list goes on. You get the point.
Now, when I was in Grade 1 I had what is known as a cluster seizure. This is a bunch of seizures together that appear as one BIG seizure. There is no family history of seizures so the docs still don't know why I had this, but I was diagnosed with epilepsy. Now, Praise the Lord, I never had another seizure. But it became one of my MAIN fears with anxiety. That I was going to have another one.
For example, I started to get dizzy with strobes thinking that it was photosensitive epilepsy. Nope...just anxiety.
About a year after that I started to get these bursts of false smells of smoke out of nowhere. This is a symptom of temporal lobe epilepsy. But nope, also anxiety. I still get these sometimes if im REALLY stressed. So im used to my anxiety messing with me. However this one is different.
Back in May of last year I started to think about my seizures again, and I started to get worried about them. Shortly after that I was informed that I would be seeing my neuro in a few weeks for my final appointment with her. This got me REALLY concerned and about a week later I had this strong episode of Deja Vu, which again, is a BIG sign of temporal lobe epilepsy. However, I shook it off and moved on, forgetting about it. Two weeks later it happens again. Once again I shook it off and moved on. Two weeks later it happens AGAIN. This time I freak out. I start googling (how dumb I know, im a pretty seasoned anxiety sufferer and yet I did the single most stupid thing you can do) and get myself all good and anxious. At this point I was near a panic attack and I started to worry and freak out. I started to have them more and more frequently. First it was every 5 days. Then every 3, then 2 and so on.
June rolls around and I see two neurologists. Both of which tell me that I am probably ok. However my deja vus end up getting way more frequent. I talk to my neuro and get an EEG booked. It comes back clean, this did calm me a bit, but I didnt actually have a deja vu while hooked up to the EEG. So I brush it off and continue worrying.
Meanwhile the deja vus are still going on strong.
We jump forward to January of this year (big jump I know, but thats the healthcare system for ya) I meet again with my neuro, she is near positive that I am ok, however I am still having the Deja vus. And they are getting even MORE frequent. I then talk to my GP (who happens to have a masters in neurology), and she is ALSO pretty sure I am ok. However they CONTINUE to get worse.
That brings us to present day. I can't go a DAY without having at least several. They last like 2-10 seconds, and I get this feeling ive done X before and I can even see a false memory of me doing X before. But I can't recall the image afterwords. I am scared to DRIVE because of this. And I keep seeing posts on this sub where people were told their dejavus were just anxiety and then they end up being seizures. I just don't know what to do. Has anyone had this with anxiety before? I am so terrified.
submitted by Moist_Ad_8262 to Anxiety [link] [comments]


2024.03.02 23:59 Major-Display2165 Nystagmus and other eye symptoms

Is this normal?
Hey everyone,
I've read a lot of posts from this group and just wanted to be sure that this is normal long hauling covid. I've had a lot of the same symptoms as others, the palpitations and anxiety have stopped. At times I thought my heart wasn't going to start beating again and it was scary. That has stopped for at least 4 months now thank God.
However, I have noticed that the nystagmus I had seems to be getting worse or I am just noticing it more. Tends to be worse at waking. I did not have it before covid at all. It's not all the time, it comes and goes. I also see floaters and what looks like little white bugs/flashes when I look at the sky. It's not quite "visual snow," it's only when I look at something white in bright light or look at the sky. I tend to avoid looking at white objects/walls and the sky because I don't want to see it and think there's something else wrong with my body. Googling it, the closest thing I can find is blue field entoptic phenomenon. I have seen two opthamologists and they have both said my retinas are 100% fine and they do not see any floaters or issues with my corneas. They also don’t see nystagmus because it’s not always happening. I don’t have photosensitivity but it seriously bothers me that I see this. Also, last May I started getting these random ass dizzy spells that last for a few seconds at a time. Other times I hear ringing like tinnitus. They have also lessened. The nystagmus bothers the crap out of me because I'm 29 and was super healthy before getting covid. I'm 13.5 months post covid.
I take a multivitamin, krill oil, and eye supplement daily w/ bilberry.
submitted by Major-Display2165 to LongCovid [link] [comments]


2024.03.01 16:56 Cherelley35 Weakness under fluorescent light at work

I have extreme photosensitivity with my lupus and lately I have been getting a lot of weakness in my body esp my legs during my shifts at work and this happens at the same time my malar and other rashes are flaring. The longer im under the light at work the worse it gets. Is the weakness a normal part of lupus? I have trouble walking and also get dizzy and feverish feeling. I wear sunscreen and uv cover ups at work and am also on Benlysta injections and 400 mg of HCQ for 7 months now and nothing seems to be helping.
submitted by Cherelley35 to lupus [link] [comments]


2024.02.24 15:11 Ill-Beyond2875 chronic migraines but no tests done

Hi so I (27F) have been suffering from migraines for a very long time. As a child I was diagnosed with childhood migraines without having any tests done. They subsided when I was around 11. The migraines then came back at around 15(not l8nk to begining of periods). At this time I had no auras the symptoms I had where terrible headaches, photosensitivity and the occasinal nausea/vomiting. I was able to keep them at bay with regular meds (tylenol,advil and gravol mostly). Last year my doctor (who ive been seeing since I was 11) gave me a diagnosis of chronic migraines and we started to explore treatments. I am now on beta blockers and vit. B2 as prevention and have triptan in case of an attack. These have not helped. The triptan works maybe 50% of the time and Im still having 2 or more migraines a month. In the last year or so I have also developed bad auras (tiredness,dizziness, severe nausea, lights before my eyes and tinnitus) and I also have headaches almost daily. My doctor have never sent me to get any type of test done (my mother have migraines so it was assumed it was genetic) and im wondering if I should push to get as least a scan done or something to make sure its not something else. What is your opinion on the matter? Should I push for more test or just leave it at that?
submitted by Ill-Beyond2875 to AskDocs [link] [comments]


2024.02.19 08:39 Vindermiatrix I hate not being able to drink black coffee with caffeine without the possibility that I may have seizures

I love black coffee. I love to drink a few through out the day. Yet this trigger appeared out of nowhere. Drinking black coffee sends my body into seizure mode sometimes but it never used to be like that. Just like the trigger of photosensitivity that also appeared recently. Constantly making me feel dizzy when looking at certain frequencies.
Sometimes one cup of black coffee can be okay. Sometimes not. It's like Russian roulette. Decaf isn't the same. Feels like something is missing which there is. If I have a cup of black coffee then later a bottle of energy drink , my body will be like nope time to twitch and be on the floor.
I hate that caffeine is a massive trigger for me. I miss having black coffee. I hate not being able to drink energy drinks. But for some reason coca cola isn't really an issue. But if I added a black coffee and coca cola , that would be an issue. Had that issue once. Just one small sip of cola was enough to set me off.
I hate that my body is that sensitive.
I fucking hate having epilepsy , ruins fun things.
submitted by Vindermiatrix to Epilepsy [link] [comments]


2024.02.14 21:07 AccomplishedBit5533 UCTD possibly progressing?

I've been living with a UCTD diagnosis for at least a year. Diagnosed in my mid-30s, female. Been on Plaquenil for nearly that entire time and it really has helped me in many ways with no side effects.
Here's where things get interesting and I wanted to know if this sounds like anyone else's experience? I've had a low positive ANA, speckled, in the past and even a low positive RA test. My CRP has pretty consistently been elevated as well, but nothing higher than a 5 whenever tested. I had other symptoms suggestive of an AI condition, which is why my rheumatologist gave me the UCTD diagnosis.
However, for the last two weeks, I've had this killer migraine along with other sx. Photosensitivity, tinnitus, nausea, neck pain, dizzy spells, malar rash, pressure behind eyes, vision changes (when standing/stooping, I get the dark curtain over eyes), low grade fever (around 100), malaise, insane fatigue, and fluid buildup in ears (according to my GP, they're not infected though).
My neurologist had previously believed I had idiopathic intracranial hypertension, so to me, I figured that was the reason for my symptoms. I'm not overweight at all, my BMI is completely normal. I should also note, I have unilateral optic nerve swelling and I'm followed by ophthalmology to ensure it doesn't get worse. Another reason why it was believed that I had IIH. Did the lumbar puncture today and opening pressure was completely normal.
None of my migraine meds have worked thus far to alleviate the pain. I do quarterly botox injections, take a triptan or Nurtec as rescue migraine meds, and have been prescribed daily topamax. All of these had previously worked for my migraines. Even the anti nausea meds don't help (zofran, meclizine, and reglan). I've taken NSAIDs to help with the pain, but after a few times of them not helping, I stopped trying and don't bother taking anything stronger. My ophthalmologist's office told me to go to the ER to rule out any serious conditions and the MRI with contrast was clear, but they saw slightly elevated ALT/AST levels (which I've never had previously) and my CRP was at an all-time high of 20.
My rheumatologist is in the loop. I literally just saw him in early Jan and told him I felt fine. Now this happens out of the blue.
submitted by AccomplishedBit5533 to lupus [link] [comments]


2024.02.14 09:16 DeoSitGloria Looking for advice. Feeling lost.

26/M.Don't know anyone in my extended family. My mother does have a history of thyroid issues, up to a culmination of thyroid cancer. I no longer have insurance (working on that) and the last amount of information I have regarding labs was from a rheumatologist that tested me for ANA antabodies that came back positive, a very (low?) titer of 1:40 I think it was, and a few other tests I can pull up if needed. Never got to follow up because of insurance.
Symptoms are below
---Anxiety, shakes, terrible depression.
Insomnia is very strong. When I do sleep, I never get enough regardless of how long I do sleep.Visual snow.
To preface, I have a huge background in bodybuilding and fitness. I'm a 6'4, 195lb man whos roughly maintaining (and even starting to gain a bit) on 1500 calories a day. I can no longer lose weight but gain very easily despite calories being extremely low. Because of this, I'm eating the bare minimum everyday just so I don't gain weight but the tradeoff is I'm actively getting weaker and losing strength. Exercise also seems to make issues such as brainfog and mental clarity significantly worse.
I'm active, but limited due to fatigue and crushing brain fog and vertigo/dizziness that is progressively getting worse. Stamina is also suffering heavily. Gassed out and winded much easier now and getting to the point of feeling like passing out consistently if I push too hard.
Constantly feel detached and "floaty." Like I'm not in my body. I struggle to explain this one. Like my body is a mech and I'm just piloting it. I used to actively write for my voiceover profession, now I can hardly forge sentences and my focus is gone. Photosensitivity is very rough.
Used to love the cold, now I do what I can to avoid it. Generally feel worse whenever I'm in the cold.
Hair coming out more. Areas of my skin are dry and almost scalely/rough. Muscle loss or just generally weaker.
ED.
Stress exacerbates these symptoms immensely.---
Does this sound like it could possibly be a thyroid issue or anything else anyone may be familiar with? I don't know who else to ask or where to go. I'm working on getting insurance so I can see an internist, just need to get my insurance first.
All my labs are from about 2022 I believe, I can pull them up if needed. My old doctor in the past did try to see if SSRI's or SNRI's would help.Looking for any insight or possible advice. Every year it gets worse and I'm truly feeling at my breaking point lately. Anything helps. Thank you.
EDIT: Labs from september of 2022. TSH 1.271 ulU/mL - Reference: 0.550 ulU/mL - 4.780 ulU/mL T4 Free 1.43 ng/dl - Reference: 0.89 ng/dl - 1.76 ng/dl T3 total 0.76 ng/dl - Reference: 0.60ng/dl - 1.80 ng/dl T3 Reverse 23 ngl/dl - Reference: 8-25 qT3 Uptake 40% - Reference: 22-35 I don't know which antabodies are which, so I'm going to leave this here as well; ANA Screen, IFA POSITIVE Complement Component C3C 83mg/dL - Reference: 82-185 Complement Component C4C 14mg/dL - Reference 15-53 Thyroid Peroxidase Ab 1 IU/mL - Reference: < 9 IU/mL ANA Titer 1:40 titer ANA Pattern Nuclear, Speckled
submitted by DeoSitGloria to Hypothyroidism [link] [comments]


2024.02.11 19:26 Medrugby19 Help with understanding stacking

Help with understanding stacking
Does this mean that they might rate my PTSD and TBI symptoms separately based on this note in my C&P?
submitted by Medrugby19 to VeteransBenefits [link] [comments]


2024.02.09 08:00 Sgt_Leppard New Epilepsy Warning

New Epilepsy Warning
So the most recent update of the game now contains an epilepsy warning that displays on launch. Maybe it's just me, but outside of a temporary glitch from ages ago, I have not known this game to display any potentially epilepsy-inducing behaviour. Am I missing something here or...?
Edited to add the warning screen that appears -- nobody reads that fast
https://preview.redd.it/wmzqg938kihc1.png?width=856&format=png&auto=webp&s=802a98241530bdd257314288ebc2f050c868ec72
submitted by Sgt_Leppard to SongPop2 [link] [comments]


2024.02.09 01:56 CherryBlossomBundle I don’t know if I have partial seizures or VM or both

My neuros have been horrible and kind of quacky and I’m asking for a new referral so very little help there.
I was on lamictal for 10 years post concussion and also tripeptal. Finally learned they caused very bad side effects and tapered. Figured the concussion had mostly healed.
I didn’t put it together I’d had symptoms before that were always said to be panic attacks.
So I get episodes where I get either a sinking feeling or stomach flips like I’m on a roller coaster, or extreme anxiety, or like I’m falling. And a sensation like I’m actually floating out of my body and floating around the room. And vertigo if I’m in a building by windows high up I feel like I’m floating out of my body and falling out the window.
I have unsteady gait and clumsiness in general and then I am very photosensitive and actually have muscle jerks when exposed to strobe lights. Spinning fans or flashing lights make me feel weird. A lot of nausea and falling feeling and this feeling that I’m wrapped in cotton or marshmallows. I remember this happened the first time when I was 10.
It got worse around 25 and I also couldn’t speak during these episodes and then I’d have short term amnesia and not know where I was or who people were for a second. Then I’d snap back.
I also would feel like I was having flashbacks or Deja Vu or even perceiving the future. Or this moment would feel exactly like a prior moment like it suddenly had the “vibe” of 1993.
Hit head in 2012 and lamictal and trileptal kinda controlled all this for 10 years and I was like okay. But dangerous side effects eventually forced me off and it came back worse than ever.
Now I also in addition to the above have worsening dizziness and anxiety, I get left side paralysis on my face where it droops down (not a stroke though we went to the er the first time)
I also get phantom smells. Burning or metallic / blood.
And my left side goes numb a lot.
Migraine recuse medicines i tried was sumatriptan and all it did was make me feel like I was having a heart attack.
I do have a POTS diagnosis and am seeing a rheumatologist as well.
SSRIs greatly help the anxiety aspect of these symptoms but they tend to make some of the physical symptoms worse.
Anyway a couple EEGs revealed some unusual spikes on my right temporal lobe. My neuros are really lame and keep swinging between unclear significance and maybe the meds are placebo and “suspicious for epilepsy let’s see how you respond to meds” but then going back the next meeting to denying I had any seizures because of the eeg … even after saying over and over again that the eeg does not pick up all seizures activity especially focal seizures.
So yeah I do respond to AEDs. I actually respond really well to Topamax symptoms wise which makes me wonder bc it’s both for migraines and seizures. But I can’t be on it bc I could become pregnant and I hate the brain fog.
These episodes all greatly reduce with AEDs combined with SSRIs it’s just a matter of side fx.
I don’t know how to approach my next neurologist. I can’t work with someone who may randomly cut off care if they decide I didn’t “pass” my eeg or whatever and they only treat epilepsy. So I feel like I need to see someone who knows about migraines and epilepsy to help me figure it out.
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2024.02.07 18:28 Standard_of_Care Concussion

Immediate and transient loss of consciousness accompanied by a brief period of amnesia following a blow to the head.
A functional manifestation of mild traumatic brain injury.
Can have physical, cognitive, and psychological implications in both short and long-term.
Defined as a clinical syndrome of biomechanically induced alteration of brain function typically affecting memory and orientation, which may involve loss of consciousness.
Results in a neurometabolic cascade that causes the brain to be more sensitive to stress and further injury until it is fully recovered.
Can occur after motor vehicle accidents, sports related injuries, falls, or assaults.
Gross structural changes are often not apparent on non-functional brain imaging.
Acute changes in brain physiology can occur after concussion and include alterations in cerebral blood flow, cerebral blood flow autoregulation, cerebral metabolism, neurotransmitter release, neurotransmitter receptors expression, blood brain barrier integrity, and expression of inflammatory cytokines.
These changes in brain physiology account for headache, lethargy, memory impairments, sleep disturbances, and psychiatric symptoms ref2242ed to as post concussive syndrome.
Affects about 50 persons per 100,000 population annually in the U.S.
Mildest form refers to momentary sensation of being dazed without a loss of consciousness.
A complex pathophysiological process induced by external traumatic forces and capable of producing long-term functional disturbance.
A cerebral concussion is generally defined as a brief, temporary int2242uption of neurologic function following head trauma; it can occur with or without loss of consciousness.
Patients appear dazed initially and may stare blankly for several seconds or minutes.
Associated often with headache, dizziness or vertigo. that may last for a few minutes or several hours.
Post-traumatic amnesia(PTA) and confusion are often present with more severe concussions, and duration of these processes are directly proportional to the severity of the injury.
Loss of consciousness may accompany more severe concussions.
As many as 300,000 sports-related concussions are diagnosed each year in the United States, but that underestimates the true incidence.
The CDC estimates 1.6 million to 3.8 million sport related concussions Re sustained in the US each year across all competitive sports and recreational activities.
More than the 62,000 concussions occur annually at the high school level.
Contact sports such as football, hockey, rugby, and soccer have the highest incidence of concussion, but athletes across all sports are at risk.
The greatest risk factor for a concussion is a history of concussion, which increases an athletes likelihood of repeated concussion by 2-5.8 times.
It is estimated that approximately one in 30 youth league football players, one in 14 high school football players and one in 20 collegiate football players sustain a concussion each year.
Many concussive injuries are not recognized.
4 of 5 professional football players with concussion are unaware that they had suffered this injury.
Symptoms are largely subjective, and recognition often relies on individual or family reports.
Headache and dizziness of the most common post concussion symptoms.
Clinical symptoms of acute concussion may be somatic, cognitive, or emotional in nature and may include loss of consciousness, amnesia, slow reaction time, confusion, disinhibition or headaches.
About 10% of patients with concussion manifest significant clinical symptomatology.
Many patients outwardly appear normally, but still experience substantial sequelae internally.
Neurologic examinations and mental status evaluations frequently failed to detect findings that often characterize concussion.
Symptoms may last several hours to several weeks, however the potential of chronic symptoms may not present for several years, making it difficult to link those symptoms with the sentinel event.
McGill Concussion Protocol enables evaluation the severity of a CNS injury and to gauge the progress of recovery.
Some patients may be ataxic immediately after the injury.
There are generally no focal neurologic deficits associated with concussion.
CT scans of the brain are normal; however, small petechial hemorrhages are seen on MRI in a few patients with mild traumatic brain injury.
Chronic traumatic encephalopathy has been attributed to repetitive concussions.
The signs and symptoms of concussion may be confused injuries to the vestibular system of the inner ear or to other head and neck structures.
The initial complaints of poor concentration, forgetfulness, and sleep-wake disturbances are usually caused by neural injuries.
Anxiety, mood disorders, and irritability may result and be attributable to neuronal injury, but they may also be caused by pain from other injuries or psychological factors.
Severity of concussions:
Grade 1. This is the mildest and most common form of concussion.
Grade I is the most difficult to recognize.
Defined by transient confusion without loss of consciousness.
If post traumatic amnesia occurs, it lasts for less than 30 minutes.
Grade 2.
Moderate concussion with loss of consciousness with complete recovery in less than 5 minutes.
Transient confusion that lasts more than 15 minutes, and post traumatic amnesia that lasts more than 30 minutes.
Grade 3.
Severe concussion with any loss of consciousness, whether brief or prolonged of more than 5 minutes, and/or post traumatic amnesia that lasts more than 24 hours.
The McGill Grading System subdivides mild concussions into 3 classes.
A Grade 1a concussion involves no post traumatic amnesia and only seconds of confusion.
A Grade 1b concussion features post traumatic amnesia and/or confusion that resolves within 15 minutes.
A Grade 1c concussion is characterized by postconcussion syndrome or confusion that does not resolve in 15 minutes.
Features of concussion include: stare, confusion, inability to focus, disorientation of time, space or direction, dizziness, vertigo, headaches, slurred speech, impaired coordination, emotional lability, impaired memory, delayed verbal and motor responses, and any level of loss of consciousness and nausea of vomiting.
Following concussion patients may experience headaches, light-headedness, poor attention and concentration abilities, impaired memory, fatigue biliary, irritability, frustration, depression, anxiety, tinnitus, noise sensitivity, light sensitivity, and sleep disturbance.
All patients should be assessed medically and not return to physical exertion if signs or symptoms persist.
Follow-up examinations of concussed patients are required.
The treatment of concussion is standardized for each grade or level of injury.
Grade 1. If asymptomatic 15 to 20 minutes later and there is completely normal neurologic assessment return to the event is allowed.
If the patient has a second Grade 1 concussion in the same event, they should not resume play that day, but may return if asymptomatic for 1 week at rest and during exertion.
If 3 Grade 1 concussions occur in the same event, the patient is disallowed from play for the season.
Second-impact syndrome refers to a second or third concussion that can cause severe neurologic injury or death.
Second-impact syndrome is a likely process if subsequent concussions occur during the post-concussive period.
Grade 2 concussion patients should be stopped from further participation of the event, and the patient requires frequent on-site evaluations to check for signs of evolving neurologic changes..
Grade 2 concussed patients must be re examined the next day.
Grade 2 concussed patients can return to activities if asymptomatic, and with a normal neurologic evaluation after 1 week.
CT or MRI should be performed if headache or other symptoms worsen or persist longer than 1 week.
If a second Grade 2 concussion occurs, defer return to play until he has been symptom-free at rest and with exertion for at least 2 weeks.
If there is any abnormality on CT scanning or MRI consistent with brain swelling, contusion, or other intracranial pathology further activity is prohibited.
Grade 3. The patient requires a complete neurologic evaluation, including appropriate neuroimaging procedures. Neuro imaging studies include: CT of brain in most cases, although MRI can be obtained if more details are needed in evaluation.
Normal imaging studies in grade 3 injury the patient may return to the sport after 1 week if the LOC was brief and he is completely asymptomatic.
After a prolonged LOC, the athlete should be disallowed from play until asymptomatic for 2 weeks at rest and with exertion.
If two Grade 3 concussions occur, the athlete should not play until at least 1 month has passed with no symptoms.
Any abnormal findings on CT or MRI should discourage future competition.
Patients with post concussion syndrome may experience headache, dizziness, difficulty in concentration, impaired memory, variable amnesia, depression, apathy, and anxiety.
In the first few days after a concussion, deficits in arousal are often present.
Impairments in sleep-wake cycles and attention are more long-lasting.
Results in disturbances in new learning, attention, and speed of information processing.
Cognitive deficits that can be documented with neuropsychological tests within 24 hours of the injury.
Rapid return to preconcussion performance level is often observed 5 to 10 days after concussion, even in patients still symptomatic.
More complex mental functions may be abnormal for 7-10 days, but these deficits generally resolve during the next several weeks to months.
In patients with a brief loss of consciousness, and posttraumatic amnesia of less than 1 hour recover usually occurs within 6 to 12 weeks.
In patients with loss of consciousness longer than 10 minutes and/or duration of post traumatic amnesia for more than 4 to 6 hours may require months or even years to return to normal, and some may never do so.
By 3 months after concussion neurologic recovery is usually substantial.
After 3 months after concussion only a small number of patients still have limitations.
Patients who recover are susceptible to occasional impairment during periods of increased physiologic or psychological stress.
Most patients with a mild to moderate concussion become asymptomatic within a few minutes or days.
Approximately 10% to 15% of patient with a mild to moderate concussion have symptoms that persist for more than 1 year.
Even with mild concussion frequent postconcussive symptoms may persist for 3 months and include:headache, forgetfulness, poor memory, fatigue, irritability, easy to be angered, dizziness and poor concentration.
It is the mild end of the traumatic brain injury continuum.
Highest rates in young children.
Majority of concussions among 5-14 year olds related to sports and bicycle related accidents.
In adults falls and auto accidents are most common causes.
The direct cause is a rapid acceleration-deceleration at the time of a blow to the head, jarring of the brain inside the skull and stretching the neurons so that they temporarily are impaired.
Stretching and shearing of axons causes a pathological release of neurotransmitters which leads to ion level fluctuations.
Such fluctuations in ion levels cannot be seen on brain imaging.
Results in a rapid onset and neuro physiologic and neurologic dysfunction that usually resolves spontaneously over a short period of time.
Symptoms include headache, confusion, amnesia, altered level of consciousness, nausea and vomiting, mood swings, ringing in the ears, impaired speech, balance, coordination, judgment, difficulty with concentration, learning, difficulty sleeping, blurred vision, photosensitivity, phonosensitivity, slower reaction times, insomnia, emotional liability, irritability. or depression, and drowsiness.
Severity related to the length of amnesia and unconsciousness.
Extent of amnesia correlates with duration of loss of consciousness and severity of head trauma.
Amnesia can be anterograde with inability to retain new information and retrograde extending usually moments or rarely to longer periods of time.
Anterograde memory loss tends to be briefer than retrograde amnesia, but both improve over a period of hours or less.
Does not cause loss of autobiographical information or confabulation.
Brief loss of consciousness results from rotational forces exerted at junction of upper midbrain and thalamus causing transient disruption of reticular neuron function that maintains alertness.
Multiple concussions over months result in cumulative neuropsychologic deficits.
Attention at site of injury includes keeping the airway clear, seeing that the neck is stable or if it requires immobilization and then transport to an emergency department for evaluation.
Clinical evaluation of an individual’s alertness, orientation, memory, and neurologic status is performed immediately.
Diagnostic imaging such as CT scan of the brain or MRI of the brain to exclude skull fractures, brain swelling or bleeding may be done after initial evaluation.
Postconcussion evaluation is repeated until symptoms resolve.
Sports related concussive injury is generally related to functional or metabolic changes rather than structural dysfunction since neuroimaging results are usually normal.
Most patients improve rapidly, while 10 to 20% of patients with sports related concussions may remain symptomatic, particularly children and adults.
Among collegiate football athletes there is a inverse relationship of concussion and years of football played with hippocampal volume.
Concussion causes prolonged disruptive cognitive performance in college athletes.
The accumulation of subconcessive hits across a high school football season inversely correlates with behavioral and neuroimaging measures of working memory performance.
Patients involved in trauma may also have other injuries such as fractures, intra-abdominal injuries and can cause hypotension, hypoxemia, anemia, and hyperglycemia.

https://standardofcare.com/concussion/
submitted by Standard_of_Care to u/Standard_of_Care [link] [comments]


2024.01.04 19:40 TBS182 This happens when i try to start Tetris Effect! Help!

This happens when i try to start Tetris Effect! Help! submitted by TBS182 to SteamDeck [link] [comments]


2024.01.04 05:30 Strange-Pepper380 Anyone else get so nauseous they have to stop playing?

I can't even get past the first section before I have to stop playing because I feel dizzy and nauseous like the world is spinning. I'm not sure what's causing this. Turning down some of the visuals helps a bit but I think the main issue is the top down movement system. I really want to play the game but I can't at this point without quitting after every small section due to the nausea. I'm also photosensitive but I don't believe I've seen any flashing yet. Are there any mods or settings I can change that could help alleviate this?
submitted by Strange-Pepper380 to BaldursGate3 [link] [comments]


http://rodzice.org/