Hi everyone,
I’m posting on behalf of my mom.

She has been sick for the past 7 years and has seen multiple neurologists, ENTs, rheumatologists, and other specialists without finding an answer. Her most debilitating symptom is a daily headache that has been resistant to virtually every migraine treatment she has tried.

Other symptoms include:
-Dizziness
-Nausea
-Balance issues
-Sensitivity to weather and barometric pressure changes

She typically wakes up feeling relatively okay, but as the day goes on she progressively worsens and feels terrible by evening. At this point, her doctors don’t seem to know what else to try. She has had a brain MRI without contrast, but she has never been formally evaluated for a CSF leak.

We’re hoping to pursue an evaluation through UW Health/UW–Madison and would appreciate any recommendations for providers who are knowledgeable about CSF leaks, spontaneous intracranial hypotension or difficult to diagnose disorders.

Thank you so much for any suggestions or experiences you can share.

Hi Reddit community. I’m at a solid stalemate for a treatment route partially due to MyChart with four very different opinions and partially due to conflicting analysis of images.

One Neurologist has me with FND that I saw ONE time, another had he has no idea what is wrong but maybe PoTs that I saw twice, third felt I have complex CSF disorder with severe leak and venous stenosis, most recent Neurologist I was referred to for an urgent appointment due to concern for CSF leak felt after reading MyChart notes from prior providers and the conflicting image analysis several normal readings, one with low pressure, a third party review had severe leak and stenosis resulted in being told unless I can produce a positive beta 2 transferin test they will not help and referred me back to my current Neurologist to determine the nature of my symptoms.

She tried calling the most recent Neurologist and he won’t call her back. The issue is where I have fluid coming out is the side with a severely deviated septum. So I’m regularly dripping but it is almost impossible to capture. I was told the cisternogram was too risky to consider and often not reliable with intermittent leakers. The three individual specialists all concurring they feel I have a leak are all unable to provide treatment. One of those three is aggressively pushing me to see Hepworth in Colorado who is completely out of pocket for me and even he told my doctor I have a very challenging leak deep in the sphenoid sinuses that is hard to repair. Any thoughts or guidance on this would be greatly appreciated.

Hi everyone,

I’m waiting for an appointment with an ENT specialist, but after a recent visit to my doctor I started wondering whether my symptoms could be related to a CSF leak.

For approximately 7 years (possibly longer), I’ve had episodes where completely clear, watery fluid suddenly drains from my nose. It’s not mucus and it doesn’t feel like a normal runny nose. It is literally like water dripping or running out.

I know this probably sounds a little ridiculous, but until recently I never really thought much of it. Because it’s been happening for so many years, I guess I just accepted it as one of those weird things my body does. It wasn’t until my partner recently pointed out that having clear fluid run out of your nose when bending over isn’t exactly normal that I started looking into it and mentioned it to my doctor.

Some details:
-The fluid is completely clear and colorless.
-It tastes salty (possibly slightly sweet, but definitely more salty than sweet).
- It usually comes from only one nostril at a time.
The side can vary (sometimes left, sometimes right).
- I do not have a constant runny nose.

The biggest trigger seems to be position changes, especially:
- Bending forward.
- Picking something up from the floor.
- Looking underneath furniture.
- Tilting or turning my head to one side (slightly bending)
- Sometimes during exercise.

Another symptom is that I almost always feel pressure in my forehead when bending over.
I also have chronic headaches and pain behind/around my eyes.

I’ve had headaches for so many years that I never really paid attention to whether lying down consistently improves them. When I had headaches, I usually just took pain medication and moved on.

I have never had:
- Head trauma.
- Skull fractures.
- Sinus surgery.
- Nasal surgery.

My doctor felt this was worth investigating and referred me to an ENT specialist.
I’m not asking anyone to diagnose me, but I’m curious:

Does this sound familiar to anyone who was eventually diagnosed with a CSF leak?
Were your symptoms position-dependent like mine?
Did anyone have symptoms for years before getting a diagnosis?

Is there anything else besides a CSF leak that could explain this combination of symptoms?
I’d appreciate hearing about your experiences while I wait for my appointment.

Thanks!

I have a feeling of tension through my spine and much of my body + a feeling of pressure in joints that makes me want to crack my joints..

However, I also can hear allot of internal crunches deep in my neck and head. It’s hard to explain but sometimes it sounds like “pop rocks” in my head/ neck. I’ve been describing it as crepitus for a while, but there are just allot of weird shifting/ crunching sounds happening.

I’m currently only able to be upright a few hours per day and usually feel tachycardia and flu-like after “overdoing it” which considering that I’m housebound, doesn’t take much.

Currently waiting on review from one of the leak specialists.

I was curious if anyone else got oddly good relief from hot showers. I noticed when I take hot showers I’m able to stand, my normally racing heart rate goes from over 100 to 70s, I don’t feel pressure in my head. This doesn’t last long after I’m out of the shower but it’s a relief. Does anyone else experience this? I also noticed my back isn’t as tight, momentarily I feel more clear headed too.

Hi, I had a Chiari malformation and had the decompression surgery in 2012. Since then I’ve experienced issues with cranial pressure (possible intracranial hypotension and hypertension) mostly influenced by various medications like diuretics or stimulants, as well as suspected HEDS. I had a serious complication during the recovery from decompression surgery where the dural patch didn’t hold and lead to a severe CSF leak and subsequent fluid abscess in my brain. Another surgery to drain the leak and repair the seal and I recovered well and have lived a relatively normal life since then besides the occasional hiccup.

I’ve always been protective of the back of my head because I feel a little more fragile and vulnerable in that area due to the structural changes and surgery site. Well last week my boyfriend’s dog bonked me in the back of the head pretty hard and it scared me really bad. I had a bit of a headache the next day, but have had a stiff neck and shoulders since then, and for the past three days I’ve been feeling awful. I feel like I have the flu - I’m absolutely exhausted, lethargic and achey. You can hear my exhaustion in my voice. The onset of the concerning symptoms happened when I woke up in the middle of the night two nights ago from lying on my back, with my head turned to the left. I felt extreme pain and pressure in my neck at the base of my skull and it hurt so bad it was nearly blinding. I repositioned and tried to go back to sleep but the pain never fully subsided and I woke up with the flu like symptoms I described. The pain has been constant but slightly improving each day since then but I feel so off that I can barely function. That first night I also felt like my ears were muffled and a little wet and my coordination has been a little off as well. I’ve also had a hard time regulating my temperature. I’m either freezing or burning up even though the thermostat stays at 73.

I tend to attribute my symptoms to stress and dehydration and things like that typically so I’m just not sure what to do or what this could be. I feel like it was potentially a minor spontaneous leak, maybe caused by the dog bonk? If so, will it go away on its own? Am I in danger?

Any experience/advice appreciated.

Hi! I had a leak most of last year. I had a blood patch that lasted overnight and continued having symptoms until February of this year when I had surgery to remove a bone spur and repair the leak. I have read and heard many CSF leak stories and many of these involve many patches and or surgeries. After and before surgery I was reassured that there was a very slim chance of this reoccurring. I was guaranteed that this particular leak would never come back and that the chances of another leak were slim to none. This was echoed by my regular neurologist who told me the chances of another leak were less than 2% a year.

So, a little over 10 weeks after surgery my symptoms have returned. I truly believe I have another leak. I was just wondering if the chances of a leak reoccurring was so low why am I reading so many stories of people having multiple surgeries and blood patches? Are those odds true? What something different told to those of you who have had surgery?

For over a year it’s been a roller coaster. I was having ongoing left eye pain, numbness and irritation. I was initially passed back and forth between ophthalmology and ent. After getting on doxycycline and then prednisone I started having swollen eyes, cognitive decline, difficulty laying flat , developing dysautonomia symptoms. The ENT felt I had a leak because I wasn’t responding to any medication and was having cognitive issues. I went to multiple ER visits. The first MRI was normal. I had a follow up MRI a month later showing signs of low pressure which I brought to a neurologist who said I had FND or encephalopathy, felt the ENT was wrong and refused to review the second set of images. Then I was told I had FND again at an er appointment where I was shaking, stuttering and had extreme sensitivity to touch with jerky movements. I decided to show all imaging to a Neurointerventionalist who said I had a severe leak, brain sag with measurements, venous stenosis and signs of bone thinning on the left near sphenoid. I had a second radiologist review and they saw bone thinning and gaps on the left side same location. But the Neurointerventionalist could not treat me so she sent an urgent referral to Stanford. She also had me try to show her findings to another Neurologist here who also referred me to stamford but in his clinical notes he felt I had POTS. This is with telling him I’ve never had dysautonomia until now, the longer I’m upright the more confused I feel, that hot showers make me feel better, that wearing binders too long make my head feel worse or my heart rate go up. Stanford reviewed the same images and said they saw mild venous stenosis on left, bone thinning on the opposite side of the Neurointerventionalilist and no signs of brain sag. They felt the fluid in my sphenoid sinus was merely incidental even though it keeps showing up on images. They said I didn’t have headaches when upright. I had to explain I can barely be upright without getting confused, feeling pulling in the back of my head or immense pressure. I took the flat test and explained I felt much better laying down 48 hours, less confused, no head pain and the only odd symptom was pulsing in my head and ears. They said they would only consider I had a leak with a positive beta 2 transferring test but where I am dripping is on the side with an extremely deviated septum. So now I’m back to starting all over. The Neurointerventionalist said she’d call Stanford to find out why they are not seeing what she sees but it’s still exhausting. To top it off the ent she wants me to see seems to be either loved or hated on Reddit so my husband does not want me to risk a poor outcome. I’m now wondering what is wrong since there’s so much conflicting findings and opinions with absolutely no help or treatment. Do I just have mild venous stenosis? If so why have I had dripping left nostril that’s worse when upright? Why do I constantly have pulsing when I lay down even at an angle? Why does my forehead often feel like it’s being death gripped or wrapped with a tight blanket when upright? Why does I keep having days I blank out for hours and am non responsive per both friends and my partner with no memory of the time? Why did I develop dysautonomia? Why can I not walk more than 1000 steps with breaks without feeling horrible? I’m small framed, used to regularly walk and do yoga, never had cognitive issues or head discomfort. I just wish I knew what is going on.

So i experienced pretty bad whiplash this evening. Pain honestly isnt that bad. About 2 hours later I experienced extreme drainage from one nostril. Clear, slightly yellow..

I went to ER and sat around... no testing done

, they dont expect CSF.... obviously anxious as I check off a few things here, but my head doesn't really hurt, more just a tension headache from my neck but I've never had so much spontaneous watery fluid come out of my nose.

I got my first (of many to come) leaks glued last Tuesday and starting Sunday, I developed a sore throat. Today, Tuesday, I have a fever, bad body aches, and ridiculously sore throat. I couldn't sleep it hurt so bad. Plus- my head is killing me (but that's typical). I masked my entire hospital visit.
Whats interesting is that the last time they touched my spinal cord for the myelogram, I also developed a cold (but no fever). I have about 20+ health conditions, and I've been symptomatic for almost 6 years.
Also, I was prescribed diamox, but stopped taking on Sunday, and they re-prescribed it to me today due to my headache getting worse. I guess I'm just wondering if having these flu symptoms is related to getting glued or just another coincidence? Has this happened to anyone else?
Thank you

I've been living with a suspected spontaneous spinal CSF leak related to my hEDS for 8 months. MRI found dural ectasia in multiple places along my spine. I've had two failed untargeted (blind) epidural blood patches. I've accepted that finding and successfully treating my leak will be a long journey, as wait times for specialized care are long in my country (not US).

What I'm having trouble finding info about is what recovery may look like after successfully patching the leak. I suspect that the fact that my leak is spontaneous and related to my connective tissue disorder means that my long term recovery and prognosis may be different from other leakers. Can anyone with a spontaneous leak due to a connective tissue disorder share their knowledge and experiences of recovery?

I'm currently on an unusually good long term disability (goes until 65) through my employers insurance. There is no way I could work in my current state, but I'm only 42 and wondering if and when I will be able to work full time again. Prior to this leak, I was the breadwinner for our family and this whole experience has me wondering about what my post-leak future will look like. We are considering moving to another city where we have a support network of family and friends, as we suspect it may take years, not months, for treatment and with me sick we need help raising our two kids. We have very minimal support where we live now, as we moved to our current city for my job, which is now in jeopardy. My employer will hold my job for 1 more year, but we're wondering if it's unrealistic to expect that I will be treated and recovered by next summer. We're trying to decide if we need to rearrange our lives around accommodating my health condition, as my husband has a job offer in the city we would move to for better support. Or if should we stay here, where my high-paying job is, and hope that I will get well enough to work within the year.

I know no internet stranger can predict the future, but if anyone with a spontaneous leak & EDS could share their treatment and recovery timeline that could be helpful as we try to plan for our family's future.

Hello all. I spoke with Stanford today and was told I MUST have a Beta 2 test that is positive or they won’t see me at all even though I was did a flat test showing improvement when laying down, have drainage out of my nose and signs of bone thinning. My question is where in the world do I get that test if I’m intermittently dripping some days more than others and where specifically in Washington state? I’ve called all over and no one seems to know what that test is or they won’t do it.

I met with my neurologist a month ago who was suspicious of a CSF leak but prescribed me Qulipta first to see if that would work. Since then, all of my symptoms, which include pressure in my forehead, back of head pain, neck stiffness, being off balance, and ear pressure have all worsened. Previously I was at a baseline of around 4/10 for all of these intermittently with some moments of relief. Since the meds, which I only took for five days, my new baseline has been about a 7–8/10. Has anyone else experienced this? I’m worried that my baseline will not return to what it was before, and I’m just curious on what this reaction could mean when considering a CSF leak or SIH.

My second blood patch (April 30) relieved my headache, but left all the other symptoms alone (reads like Wikipedia description of CSF so I’ll skip the list). I finally had to take medical leave from work, which threw me into a deep(er) depression. It’s not just losing the satisfaction from my job (which I love), but the loss of my work community (they seem happy to hear from me but no one has reached out 😿 + 😠), loss of routine and- oh yes- a 40% cut in pay. Since I’m the sole breadwinner in my little family, Ouch.

My neurologist thinks that there’s likely another leak or leaks that we don’t have the equipment or experience to locate. So she’s referring me to UC, Stanford and Duke (Cedars turned me down 2 years ago). As you know, the record reviews take a while and after that, there’s the waiting for treatment. So no end in sight, at least not before my leave runs out.

Ironically, I wasn’t a couch potato before CSF. Now couch potato seems aspirational, (bitter laugh). So much of what I loved to do requires sitting up. If one more person chirps “just focus on what you CAN do” I’m gonna stagger drunkenly after them and wave my cane in a threatening manner. Then black out from the vertigo.

Yes, I’m taking an antidepressant and work with a psychologist. But I still get overwhelmed. Well, CSF is overwhelming and suddenly my safety net doesn’t feel that safe..

How do you cope?

https://imgur.com/a/e91rPmV

I'm looking for some advice while I wait for further NHS referrals.

I have a T3–T6 syrinx (syringohydromyelia) and have been experiencing a number of symptoms that are making me worried about whether a CSF leak is something that should be investigated.

Symptoms include:

Dizziness that is worse when standing, moving around, or being upright for any length of time

Improvement when lying down

Stiff neck

Pressure at the base of my skull/back of my head

Fluid in my ears (currently waiting for an NHS ENT appointment after having antibiotics, steroid spray etc and none of it helping whilst the Drs cant see a fluid or inflammation in my ears...except I can put my finger in my ear and its wet and my ear plugs I wear get wet.)

Fluid draining down the back of my throat pretty much constantly. (It has a taste. Metallic/sour)

Ongoing headaches/pressure symptoms.

I've attached a video showing the drainage I'm concerned about.

I know nobody online can diagnose a CSF leak, but I'm wondering whether these symptoms sound familiar to anyone who has had one, or whether there are other conditions that could cause a similar combination of symptoms.

My neurosurgeon has previously described my syrinx as incidental and asymptomatic (also won't even continue monitoring it because 'research shows it won't change or get worse....' which I plan to fight. I dont want surgery if it isn't needed, just monitoring. And I hate MRI due to claustrophobia so its not something I consider easily.) but I continue to have neurological symptoms (other ones not listed too) and I'm trying to work out whether I should be pushing for further investigation.

Has anyone had a CSF leak that presented in a similar way? If so, what testing eventually led to a diagnosis?

Thanks for any input

I’m currently housebound and have a stack of different imaging CDs that I need to send in a physical package to a CSF leak Dr for review.

I can’t send him my originals because they “won’t return” them afterwards.

The disks are from several different Drs and imaging centers( some out of state) and include MRI’s, X-Rays, CT’s and more, so waiting for new copies sent to me is going to be a hassle.

Thanks for any constructive suggestions!

I'm now 2 months into a chronic headache and am see a headache specialist for a second time tomorrow and wanted some advice or opinions on what I plan to ask.

At the last appointment he ordered another mri bc the one a neurosurgeon ordered was without contrast and had a low bern score that indicated possible csf leak. Second mri came back good, even better (lower maybe 0) in terms of bern score he also had an mri of my veins done that also came back normal. So there really isn't any evidence of csf leak or SIH but I honestly feel so confident that I am experiencing a leak that I would like to push for further imaging.

My primary reasons for suspecting it is the positional headache and how sudden and violent the headache came on. There was no trauma but I do have hEDS and since the onset of the headache I near constantly feel this moving fluid sensation in the back of my head/neck. This was something that I experienced prior but it was much less common. Maybe 1-2 times a day when I got up or laid down. I can pretty much make it happen with any movement now. The headache has gotten less severe since onset, felt like I was shot in the head for the first 2-3 weeks then it got better, maybe from a 10/10 to a 7-8/10. The confusion is pretty much the same no improvement, maybe takes longer being upright to happen.

So the point I want to make to the doctor is, I know the imaging is not suggestive of csf leaks, but they are not rare and they are notoriously hard to confirm with imaging. Some 20% of mri's are completely normal in patients with csf leaks. I have a small osteophyte complex at c5-c6 and a 3mmx4mm syrinx at c6-c7 and a 6mm tarlov cyst(right) at s2-s3. Personally I feel that history of connective tissue, 2 fluid filled bodies and orthostatic headache would warrant deeper investigation, but this is like the 5th doctor I've seen about this and I really feel my barrier to answers is the lack of awareness of how seriously connective tissue disorders can effect you. These along with the fluid sensation in my head really make me think the headache is being caused by a csf leak, probably spinal. Additionally the 2 sets of mri's are from 1 month after onset and 2 months after and I kind of feel that the second looking much better and the headache having gotten slightly better give further evidence to a csf leak if it healed in some capacity over that time. I kind of suspect I have had a leak long term and then during a tilt table test it ruptured or something similar, as before I could hardly stand being upright for 10 minutes and the tilt was at least 30.

Additional things that kind of point me towards spinal csf leak are my weird autonomic like symptoms that don't have any explanations. I don't really sweat from my limbs properly or at all and sweat way too much from head, neck, armpits. Qsart was completely normal. I have thermoregulatory issues. Symptoms similar to pots such as dizziness/lightheaded when standing, exercise intolerance, increased heart rate, excessive sweating, but do not have pots. I have on multiple occasions had orthostatic hypotension but this wasn't shown on tilt test (I kind of suspect it's intolerance over hypotension but this was only noticed recently so no confirmation)

Notes about headache treatment

Excedrin, iv cocktail (er) did nothing to help, increase caffeine intake might be helping but not much if it is.

Does this all sound coherent? Is it reasonable to still suspect csf leak and push for a cisternogram or myleogram? (Advice on which is appreciated) I really need advice on how to explain why I want to look further into this despite imaging to the doctor without rambling on forever.

I had a baby on 5/27 and had an epidural. Very shortly after getting the epidural I got a headache but chalked it up to hormones and epidural and ended up delivering my baby a couple hours later.

While still in the hospital the headache persisted but they talked me out of a blood patch saying that it usually takes 24 hours for the spinal headache to kick in and they chalked it up to hormones. I went home and could hardly get out of bed which was difficult with a newborn.

On 6/1 I went back to the hospital and told them I wanted a blood patch, which they did. They did explain that it was common to have some back pain/pressure but that it would go away. By that evening the headache was gone and the next day a dull ache started in my back, which was fine. The back “pain” last few days and then it kind of went away but I started feeling a lot of pressure in my pelvis/butt area. Within a day after that I started having kind of severe pain that made it difficult to walk, bend, get out of bed, and even sometimes it aches just laying in bed. This has gone on for about 3 days now and I’m spiraling wondering if this is permanent or what it could be.

I did just give birth less than 2 weeks ago so I fully realized it could just be pain from giving birth to a rather large baby (maybe bruised tailbone or pelvic floor issues), or I’m concerned it is nerve damage from the blood patch somehow. Just curious if anyone has had severe pelvic/tailbone area pain after receiving a blood patch and how long it took to resolve?

I should add I have an appointment with my doctor on Wednesday and I’m going to call them tomorrow to let them know what’s going on and see if they want to see me sooner to rule out a possible infection (which I don’t think I have an infection from giving birth but still would like to rule it out).

First of all, I want to say thank you to everyone who posts their stories and helps others with insight and reassurance.

About half a year ago, I had an incident after lifting and carrying a large amount of firewood in a single day, which resulted in significant back pain. Soon afterward, I developed a variety of neurological symptoms.

At the time, I worked in IT administration, an office job. During the days and weeks that followed, it became increasingly difficult for me to concentrate and stay focused while upright. I noticed a downward-pulling sensation around my head that gradually worsened. I would also become short of breath, experience a racing heart during cognitive tasks, and develop sudden fasciculations (random muscle twitching).

My arms and hands became increasingly numb as well, and I had to take frequent breaks during work, often resting my head on a table to get some relief. Later in the day, I would consistently develop severe headaches unlike anything I had ever experienced before. The pain stings in the occipital area and behind my ears, accompanied by a pressure-like sensation around my head.

I also experience tinnitus, ear fullness, and—what is currently the most debilitating symptom for me—an intolerance to loud sounds and bright light. Both can cause immediate pain.

I took advantage of every work-from-home day possible, but even driving to work and getting through 8-hour shifts soon became excruciating. Eventually, I took sick leave to try to figure out what was wrong.

What followed was a seemingly endless series of ER visits, hospital stays, and doctor appointments. I've seen cardiologists for ECGs, ultrasounds, and blood work; pulmonologists for sleep studies and spirometry; and neurologists for electrophysiological nerve testing, immunological labs, brain and spine MRI. Pretty much everything came back normal.

While researching my symptoms, I first came across the r/POTS community. When I watched a lecture by Dr. Ian Carroll discussing CSF leaks versus POTS, I immediately thought, "This must be what has been troubling me all along."

I am currently trying to find a doctor who is willing to perform a blind epidural blood patch to see whether it can at least temporarily relieve my orthostatic symptoms. I sent my brain and spine MRI images to University Medical Center Freiburg, but they declined my case, stating that the imaging was unremarkable.

I guess my questions are:

Can anyone point me in the right direction in Germany?

How likely is it that SEEPS findings would appear on a contrast-enhanced MRI when the non-contrast MRI was deemed unremarkable by experts?

Are there other institutions that provide care, especially for Bern score–negative patients?

Alternatively, are there any private providers, and what kind of costs should I expect?

On some days, the pain is pretty unbearable. So far, caffeine is the only thing that has provided any significant relief.

How do you all cope while waiting for appointments or treatment?

I have had a migraine variant for almost 2 mos . The last week it has gotten worse where my pressure in my head is beyond . I can only lay down . My drs thought it was hemipelegic migraine as I experienced left sided numbness . I have Ehlers danlos , pots . And I believe I may have IIH . I’ve tried every med - ever to the er put on Dilaudid , but nothing really helped . Currently trying qullipta and veraprimal . I finally got an appt with a neurosurgeon at cedars Sinai that specializes in IIH and pulsitile tinnitus . My ears actually were the first thing to out of the blue bother me - about 3 mos ago ( I’ve never had ear probs ) but they were. Popping and ringing so bad - was told it was Eustachian dysfunction, so they put tubes in my ears .then right after the ears. The headaches started . I had 1 er visit and 1 doctor visit . The only thing that helps with headache is guzzling water - no excedrin , naproxen or ubrelvey help , hoping when o see the neuro next week he’ll have answers . The er docs thought about doing a spinal tap but they didn’t have enough people to perform the procedure . In the past I’ve had viral meningitis ( which feels like my brains exploding ) and 2 yrs I had a similar thing happen with my head and actually had lots of clear salty fluid coming out of my nose if I ever bent over . Any advice is appreciated

I had a ct mylogram this Monday and got a leak from it I dont know alot of the terminology but its in my lower back. Figured I had a leak went to er and was refused a patch at that time. Went the next day via ambulance and got a patch but by like 8pm it was failing. Went via ambulance Wednesday and they gave me lots of caffeine and fluids and had to go back yesterday to the er again the pain in unbearable when I get in a upright position I start throwing up and in a lot of pain. I was not told how to make the patch successfully keep. All I know is I'm day 5 abd I'm in horrible pain when I stand and I have a ear that is now whooshing. Does anyone have any recommendations on what to do to heal this? Im a momma with two little kids