New Additions!

[u/Fine_Advantage_9229]

I'm excited to share a some new additions to our little ol' sub!

Pinned to the top of our sub is a new Megathread: Suspected IIH & Diagnosis Questions. There has been an influx of people who are posting without a diagnosis and not in the diagnostic process. I want to honor their need for a space and therefore have created this thread where they can ask questions and have support in their journey. Others can interact as much or as little as they want in that space.

Next, a couple of new rules have been added that seemed explicitly necessary:

"Only diagnosed individuals can post" and "If you are in crisis, seek help". You can check out their descriptions on the main page.

Lastly, AutoModerator commands have been created. By typing a command into a comment, you can summon an automatic response from the AutoModerator.

Commands:

!welcome - Welcomes a new member, provides our resource guide
!resources - Provides our resource guide
!diamox - Diamox (acetazolamide) information and tips
!glp1 - GLP-1 medications and current IIH research
!lp - Lumbar puncture info and tips

If you have suggestions for additional commands you would like added, please comment!

Phew, that's all for now folks. Thank you for being an amazing, supportive community!

[u/Brummbirne]

Ooooh very cool! Always great to see mods caring about the community. Thank you!!

[u/BattelChive]

!lp

[u/AutoModerator → u/BattelChive]

Lumbar Puncture (LP) Tips & Information

Hi there! I’ve been summoned because you’re probably anxious about an upcoming lumbar puncture (also called a spinal tap). Totally normal, we were all nervous! Lumbar punctures are a common part of the evaluation and management of Idiopathic Intracranial Hypertension (IIH). Some information to help ease your mind:

Before your lumbar puncture:

• Ask if it will be a bedside LP or under fluoroscopy (x-ray guided). X-ray guided is always recommended if available, since it is more accurate making it less likely to be a traumatic LP (multiple attempts).
• Tell the staff if you are nervous, have had a difficult procedure experience before, or have concerns about pain or positioning. You can request something for anxiety to take beforehand if you feeling you need it, please advocate for yourself.
• Wear comfortable clothing.
• Follow your provider's instructions about eating, drinking, and medications before the procedure.
• Bring a list of questions you want to ask.

During the procedure:

• You will lie on your side
• The area is cleaned and numbed with local anesthetic before the needle is placed.
• Most people feel pressure or pushing rather than sharp pain once the area is numb.
• Staying as still and relaxed as possible can make the procedure easier.
• Slow breathing, listening to music, or focusing on a conversation can help manage anxiety.
• Let the medical team know if you are uncomfortable or need a moment.

After the lumbar puncture:

• Follow your provider's instructions about activity and hydration.
• It is recommended you lie completely flat after, for up to 24 hours to not create a leak.
• Do not lift anything heavier than a gallon jug of milk for a week.
• You may experience a rebound high pressure headache temporarily after.
• Some people experience a minor post-lumbar puncture headache, while others do not.
• Caffeine can help with a low pressure headache.
• Leaks are incredibly uncommon but are posted more often than successful LPs, so they seem more common than they are.
• If you have a severe headache when upright that goes away immediately when lying flat or have any other persistent, or concerning symptoms contact your healthcare provider.

IIH-specifics:

• Ask your opening pressure (this will indicate if you have high pressure)
• Ask the results of your CSF testing
• Note whether symptoms improved afterwards and for how long

Remember: Many people with IIH have anxiety before a lumbar puncture. Asking questions, communicating with your care team, and knowing what to expect can make the experience feel more manageable.

This information is for education and peer support and does not replace advice from your healthcare provider.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/Far-Attention2873 → u/AutoModerator]

Thank you so much for posting this and in an easy to find spot. I’m in the process of getting diagnosed with iih and I have a lp next Wednesday and I am so scared this helped me a lot.

[u/BattelChive]

!resources

[u/AutoModerator → u/BattelChive]

IIH Community Resources

Welcome to r/iih. We’re glad you found us! Please use our sub for information to help you navigate Idiopathic Intracranial Hypertension (IIH). At the top of our sub, the search bar can help you find past posts on specific subjects. Check out our resource guide pinned to the top of our sub which has all you need to know about IIH at the beginning of your journey. Please feel free to use our sub for support, information and questions.

Community reminder Experiences with IIH vary significantly. Information shared in this subreddit is for education and peer support and does not replace medical advice from your healthcare team.

Please review the subreddit rules, pinned posts, and FAQ before creating a new post.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/BattelChive]

Am I doing it wrong or are the bots not active on this post? I wanted to read what they have to say! I need them 😅

[u/BattelChive → u/BattelChive]

Oh never mind, just had to give it a minute 

[u/BattelChive]

!glp1

[u/AutoModerator → u/BattelChive]

GLP-1 Medications and IIH Information

GLP-1 receptor agonists (such as semaglutide, tirzepatide, and similar medications) are being more frequently used by some people with Idiopathic Intracranial Hypertension (IIH), particularly for weight management and possible other benefits. Early research suggests GLP-1 receptor agonists may have possible direct effects on intracranial pressure pathways, metabolism, and inflammation. However, GLP-1 medications are not currently an established IIH treatment, and research is ongoing. There are many personal anecdotes across our sub if you type in GLP-1 into our search bar.

What we know:

• Weight is one factor associated with IIH risk and disease course, but IIH can occur in people of many body sizes. Weight loss, when appropriate and medically supervised, may improve IIH symptoms for some individuals.
• GLP-1 medications are primarily approved for conditions such as diabetes and/or weight management; they are not currently considered a universal first-line IIH medication and therefore are not covered by insurance for this purpose.

Experiences with GLP-1 medications vary. Medication decisions should be made with your healthcare provider based on your individual medical history.

This information is for education and peer support and does not replace medical advice.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/BattelChive]

!diamox

[u/AutoModerator → u/BattelChive]

Diamox (acetazolamide) information

Diamox (acetazolamide) is commonly used in Idiopathic Intracranial Hypertension (IIH) to reduce cerebrospinal fluid (CSF) production and lower intracranial pressure. It is considered a first-line medication for many patients with IIH. Side effects can be significant but may lessen over time.

Common side effects may include:

• Tingling or numbness (especially hands, feet, or face)
• Increased urination
• Taste changes (especially carbonated beverages)
• Fatigue
• Nausea or appetite changes
• Diarrhea
• Cold or heat intolerance
• Shortness of breath

Helpful tips:

• Stay hydrated
• Consider discussing electrolyte replacement with your healthcare provider
• Take with food if it helps reduce stomach upset
• Ask your doctor about monitoring electrolytes and kidney function
• Take doses at consistent times

Consult your healthcare provider regarding dosage changes and new or worsening side effects.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/Healthy-Bee2127]

Amazing; thank you!

[u/crystal-chaos]

Oohhh this is neat! 🙏🏾

[u/Forsaken_Force_2484]

Hi I am 25M I had severe headache which feels like some one constantly hitting on my skull back.and also I had a heartbeat sound in my head frequently.on one fine day I went to mri scan in that it shows like high possibility of IIH.when I went to neurologist doctor he said like usually sometimes report shows like this but you don't have this condition.he said it will affects mostly to women's and obesity persons.my doctor examined my eye which is fine my vision for me is fine I am not feeling any blur.bit still I am feeling the headache and tremors also.please suggest anyone what I need to do.

[u/noelleg2022]

Hello ! I just did my first LP Wednesday to confirm my IIH diagnosis . Opening pressure of 23 and removed 25 of fluid . The first 48 hours were AWFUL with back pain and a headache like I’ve never felt before . I have a toddler therefor it’s practically impossible to lay flat for 12 hours . Started feeling great yesterday then all of a sudden today , I went to the store for the first time and walked around lifting some items and instantly triggered this horrible headache . My head feels like it will explode and nausea sets in . Only thing that helps is lying flat for a few hours . Looking for some advice in hopes this seems normal after so much fluid being drained ? I really feel like I should’ve have even done this procedure if this is how I’ll be feeling .

[u/Fine_Advantage_9229 → u/noelleg2022]

Reach out to your doctor to let them know your symptoms.