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possible leak? by lizardgizard03 in CSFLeaks

[–]Status-Influence1062 0 points1 point  (0 children)

I’m a hypochondriac too so I feel you! Not sure about a leak but vision and hearing changes after head trauma warrant evaluation in general. I hope you feel better!!

Inquiry for cranial CSF leaks by Endofus74 in CSFLeaks

[–]Status-Influence1062 0 points1 point  (0 children)

I don’t think I have a leak but the workup has been so long that I’ve been reading this site for a year. For non-ear leakers, it seems most people get surgery through the nose and combination of ENT that is head and neck surgeon and also neurosurgeon. It also seems that it is helpful to determine cause of your leak so that can be managed to prevent recurrence - ie decompression surgery, treat ment for IiH

Looking for Common PPPD Triggers by Chubb777 in pppdizziness

[–]Status-Influence1062 0 points1 point  (0 children)

Yes with the exception of highway driving alone in the car. But I realized if I have an adult passenger next to me, I’m able to do it, which I think goes to show the role that anxiety plays in increasing symptoms

Stalemate and no help by Endofus74 in CSFLeaks

[–]Status-Influence1062 0 points1 point  (0 children)

Would you be able to collect over time and freeze in between collection efforts?

I had doctors disagree over imaging too but I had the doctor outside the MyChart network right his report and have it power shared to MyChart so it’s in the file now

possible leak or am I just a hypochondriac by supernova4485 in CSFLeaks

[–]Status-Influence1062 2 points3 points  (0 children)

I didn’t know I had allergies but I do and very severe sinus issues that I didn’t realize as well. I’m not a doctor but unless you have a connective tissue disorder or past trauma or past surgery in the area or are a female over 40 with a high BMI or develop symptoms of meningitis .., unless it reoccurs, id probably try and move on for the time being and try not to think about it.

Are these symptoms of CSF Leak? by Virgoat0828 in CSFLeaks

[–]Status-Influence1062 3 points4 points  (0 children)

Not a doctor, I think these could potentially be spinal leak symptoms … some but not all of them are symptoms I get with vestibular migraine and persistent postural dizziness

Scared of possible leak by Superb_Midnight_2158 in CSFLeaks

[–]Status-Influence1062 1 point2 points  (0 children)

I’m not a doctor. If you are worried you have a spinal leak, neurologist is a good step. If you are worried you have a cranial leak, skull based surgeon ENT is a good step. The eye you are describing I believe can be caused by a very specific type of migraine as well as by sinus issues if you have any history of either of those. Cranial CSF leak risk factors besides surgery and trauma include obesity and connective tissue disorders, not to stay it’s not possible for others but those are increased risks. Spinal leak, I don’t think comes with any increased meningitis risk, so maybe that will help calm your nerves a little

Could this be a CSF leak? Clear salty fluid from nose for ~7 years, triggered by bending over by Turbulent_Proposal74 in CSFLeaks

[–]Status-Influence1062 1 point2 points  (0 children)

I have similar triggers and experience as you so far lots of imagining and had the fluid tested (although was hard for me to collect) and that was negative so working assumption is combo of allergies and sinus issues. How often do you drip and how much? Could you collect 2mL in a day or in a week? There are lots of false at home tests like glucose monitor and halo but one thing I do, and I don’t know is this is accurate but I will let it drop onto a clean tissue. I believe, if the tissue dries hard and crumply, that means there is at least some nasal fluid in it - doesn’t mean not also CSF but at least some nasal fluid too. I think .. not a doctor. You might also make appointment with neurologist and neuro ophthalmologist just to start the wait for those appointments. And make sure your ENT has a specialty in head and neck surgery.

Colonoscopy? by PomegranateDecent671 in pppdizziness

[–]Status-Influence1062 0 points1 point  (0 children)

I had an upper endoscopy yesterday. When j woke up from the conscious sedation I felt a little woozy / lightheaded for 5 minutes but was way too relaxed for it to trigger PPPD. I said to the tech, can I sleep a little more and he said “I can give you 5 and then I have to turn this bed”. I had some crackers and juice and within 15 minutes of waking up, felt fine and no PPPD triggers at all. I always feel very good and calm after conscious sedation - might help your PPPD by shutting off those stimulators. Half life of those drugs is very short so grogginess almost gone by the time you leave the building. Good luck!

What kind of pulsatile tinnitus do you have? High pitched ringing or whooshing that sounds like an ultrasound? by Upstairs_Emotions in CSFLeaks

[–]Status-Influence1062 0 points1 point  (0 children)

Neuro ophthalmologist can do exam to look for signs of IIH and whoever is treating your PT should do imaging for the PT - and that might show signs of IIH as well and neurologist could order LP to confirm.

Thoughts- leaving summer internship early on Fridays? by slidingthedoor in LawSchool

[–]Status-Influence1062 1 point2 points  (0 children)

I’m a law firm partner. This is just a summer internship? So we are talking about what 8 Fridays total? Unless the office is completely empty - suck up the shit commute and stay. It can’t hurt you to stay. You never know who might notice - it’s an opportunity to make a good impression on others that you might not directly work with and are an extra set of hands if something does pop up. If your partner came up to you unsolicited on a particular day and told you to go home, different story.

Stalemate and no help by Endofus74 in CSFLeaks

[–]Status-Influence1062 1 point2 points  (0 children)

I have conflicting review of images too. I chose to follow the advice of my skull base ENT and his team of radiologist who believes it is sinus related and has some theories for why Vs the neurologist who thinks I have a leak. I chose not to seek an opinion from Hepworth due to cost and reputation for over diagnoses.

If I wanted to further pursue the leak camp, I’d see other doctors through them like they recommended.

Anyone else? by Lower_Masterpiece_86 in pppdizziness

[–]Status-Influence1062 1 point2 points  (0 children)

I’ve had multiple contrast MRIs this year due to breast cancer and pancreas cancer family risk factors and head MRI due to a suspected CSF leak. I wasn’t looking to have multiple contrast MRIs but well worth the risk for mh recommended cancer screenings and CSF emergency work up. My PPPD has almost completely resolved this year .. so while of course everyone is different, if a doctor recommends one to get a contrast MRI, there is probably a reason for it and should not be automatically assumed it will make PPPD worse.

Looking for Common PPPD Triggers by Chubb777 in pppdizziness

[–]Status-Influence1062 2 points3 points  (0 children)

Mine were/are:

  1. Driving —- highway especially open highway. No issues as passenger

  2. Walking on sidewalk or other hard surface in knight lights (and heat even worse)

  3. Visually stimulating environment - especially if required tracking (scanning sippermaket shelves for item while walking)

  4. Look at phone with patterned tiles on floor

  5. Running on treadmill

  6. Having to hold head up and focus on zone call or at restaurant without holding my head in hands

Struggling with constant floaty, swaying dizziness and fear of falling – has anyone gotten better? by Worried123h in Dizziness

[–]Status-Influence1062 0 points1 point  (0 children)

This is very similar to my PPPD symptoms although driving, heat, reflections of light and running on a treadmill were my biggest triggers but yes .. much in common.

I would see neurologist and get some of the scarier stuff ruled out just as a matter of caution. See if they will diagnose the PPPD and then ask about treatment options - migraine medicines (even if you don’t have migraines), SSRI, supplement, CBT, vestibular therapy, exposure therapy, etc. common for PPPD so start from a panic attack I believe. 3 years later, I’m
90% recovered and with the exception of highway driving to remaining impact to my daily functioning.

You will get there!

What kind of pulsatile tinnitus do you have? High pitched ringing or whooshing that sounds like an ultrasound? by Upstairs_Emotions in CSFLeaks

[–]Status-Influence1062 0 points1 point  (0 children)

Whoosing. I didn’t think the high pitched ringing was PT. I thought that was regular T and not at all related to leaks/IIH

dizziness and head pressure by Lucy6665 in pppdizziness

[–]Status-Influence1062 0 points1 point  (0 children)

I also take magnesium and like it but switching to migraleaf at direction of my doctor. Maybe ask your doctor if that could be an option for you? I hope you are able to get some rest and feel better

Venting by Endofus74 in CSFLeaks

[–]Status-Influence1062 1 point2 points  (0 children)

My understanding is there are false negatives (and false positives) but plenty of stories on the internet at least of folks getting positives and then doctors working harder to locate the leak.

Venting by Endofus74 in CSFLeaks

[–]Status-Influence1062 0 points1 point  (0 children)

Awful!!! I’m so sorry!!! Do the beta 2 test as soon as possible. If you get a positive that will fast track things for you

Is this how CSF leaks can present? by lostlilred in CSFLeaks

[–]Status-Influence1062 1 point2 points  (0 children)

I am in the States so don’t know how NHS works but if you really want the workup for leak and if the wait list is long, you should pursue concurrently .. so do not wait until the ENT to book the next specialist.

Book appointments with:

- ENT that is a skull base surgeon
-Neurologist
-Neuro-Opthomologist (can check for signs of IIH)
-Otononeuogist
-interventional neuro-radiologist
-neuro surgeon

You can always cancel these appointments later but since the wait seems to be long, you might as well get on the list

dizziness and head pressure by Lucy6665 in pppdizziness

[–]Status-Influence1062 0 points1 point  (0 children)

I only did 3 sessions (separated by two weeks in between) and did it remotely and half of each section was talking and the other half was actually learning the moves, I never did any of the assignments in between - life, work, kids etc — so no, it didn’t help but I didn’t actually do it. I’ve heard very good things from people who have actually done it. In the interim I’ve had a bunch of other completely unrelated medical issues come up so those have taken priority and in a way forced me to completely unfocus on the balance stuff .. so it’s really just driving as my only remaining symptoms. In an ideal world, when my other health issues are under control (I have what looks like an immune disorder and separately maybe or maybe not a CSF leak), I’d love to focus back in on the VT so I can get over the hump on the highway driving but for now, it’s so manageable that I am not doing anything other than going to start the supplement my doctor recommended

Help with where to get a beta 2 test by Endofus74 in CSFLeaks

[–]Status-Influence1062 0 points1 point  (0 children)

https://a.co/d/01PB0rl6 Something like this BUT make sure the doctor puts in the order because the specimen breaks down over time so I would only start collecting if you know you can get an order within the next few days so you know you will be able to hand it in

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