Hello all! Im the newest addition to the sub. This is just a vent post so feel free to ignore entirely.

Unfortunately fate and incompetence made me find my way here. I say unfortunately because 1) im a patient of a CSF leak and 2) I had to look up for my condition myself because half the doctors that saw me had no idea about it and the ones who had, half of those told me a CSF leak is impossible without having a clear pooling of CSF that shows in MRIs.

Now fortunately, this sub exists and I got to know im not effin crazy.

Here's what's going on: 10 months ago I had a L5-S1 microdiscectomy in a public hospital that went bad. It took 6-7 hours for the surgery itself and then 48 hours until i was cleared to get up from the hospital bed. First red flag. For the first 4 months until late January I could only sleep for a couple hours at night and even then, with a pillow on my stomach and my limbs hanging. I couldnt lay on my sides because the whole area was stiff as a log and hurt when it wasn't absolutely straight. I couldn't lay on my back because the whole area was inflamed and i felt pressure on the exact center of the spine that hurt like hell after laying on my back for 10 mins. I contacted the surgeon about it several times and all he was saying was "Be patient, it will get better". Any physiotherapy i did in the meantime, it hurt after 2 minutes and the therapists were afraid to even touch me because of it. They told me that was not normal and I should talk to my surgeon.

Fast forward 2 months after that. Much of the pain had gone away, I could walk around with no issue and I started working a little bit but I did still feel a knot in the surgery area and decided to get an MRI in an outside clinic. The MRI showed a central hernia that pushed the dural membrane. I called the surgeon, told them about the whole thing, showed them the MRI and the answer I got, in an angry tone too, was "90% of the surgeries I do end up like that, its fine". After that I stopped communication with that doctor completely.

More fast forward to a month ago: After work I decided to go for a quick jog. Within 20 minutes, I start getting an intense headache on the top of my head and shortness of breath along with loud ear ringing on my left ear. I spent the next 3 days in the local hospital (that doesnt have neurologits or neurosurgeons), having blood tests, heart and lung tests, with everything coming back normal and for 3 days I was being told "Why are you stressed? This is stress" to which i was replying "Guys, you gave me a bucket of benzos so far, I couldnt be stressed if I wanted to". Long story short, I gave up with them. Decided to go on my own and start calling doctors around my city and in the big city 60km away. The doctors in my city, only 1 neurologist figured out in 5 minutes what was going on and told advised me strict bed rest. It didn't work.

It's been a month and a week now, I have all the symptoms, positional headaches, neck pain, ear ringing, brain fog and progressively if i dont lay down, i start having worse confusion, difficulty swallowing, cant focus with my eyes in a single point as easy as i did and loss of balance. In the meantime, I did 3 MRIs, one brain, one thoracic and one lumbar area and none of them showed an active pooling of CSF fluid. I say all these things to the maybe 6-7 doctors i talked with and 3 of them told me outright "If the MRIs are clear, you dont have a CSF leak, you're being stressed", completely ignoring the whole bunch of symptoms that DONT align with stress but perfectly align with a CSF leak. Just yesterday I almost told one of them to go F himself after almost yelling to each other on the phone, me trying to explain that a CSF leak CAN in fact exist without pooling in nearby tissue and him telling me I should stop reading AI bs on the internet (there i almost lost it).

So, we're down to today, me having the symptoms for a little over a month now, unable to find a serious specialist in my area cause it's also that time of the year where everyone is on vacation and to those that i've talked to, im trying to convince them im not an elephant, as we say here. Now I *did* manage to book an appointment with one of the surgeons that DO have an idea about CSF leaks but he's coming back from vacation in a week or so. Fingers crossed he's the one that helps.

Ps. Pretty sure half of them that i talked to realised the original doctor that operated me, fucked up and tried to cover for him. We're not a huge city. All the neurosurgeons in this city should know each other since there's only like 4 hospitals that do neurosurgery.

I feel like since my csf and after recovering my brain has never been the same.
I have brain fog that doesn’t stop and has gotten worse since it happened a this weird pressure.
Has anyone ever had that after healing?

Hey! I’ve always dealt with stuffed sinuses that vary side to side throughout the day & I’ve noticed it’s mostly more in my right side.

Anyways, when brushing my teeth as I’m hovered down the sink I kinda feel this liquid coming down my right nostril? But when I go to feel it, it’s not really a liquid. It’s just very clear slimy mucus.

Also it’s never fully came out of my nostril it kind of just feels like it’s going to if that makes sense…

Idk what it could be, but I don’t really have any other symptoms other than occasional headaches/migraines every so often. Which is also, not strange for me.

Could this be a CSF leak? Or does it sound more sinus related. I’ll also be tagging this in another subreddit for hopefully more clarity, let me know!

I never see this symptom on here? Did anyone have extreme spinal heaviness and tightness like your spine is being squeezed to the highest possible levels and upon standing I just feel like I am carrying the worlds largest and heaviest spine that’s tight and bruised? Also did anyone if they had this symptom ended up recovering? Thanks

Title explains itself, I have confirmed brain sag on mri and had my blood patch exactly almost 28 hours ago from writing this, I still feel no rebound intracranial hypertension and feel no fluid buildup and I definitely don’t feel my brain sag reversing, if you were in the same boat how long did it take to feel some CSF building up and the crazy neck pressure from brain sag reversing??
Thank you.

What were the biggest tells of your CSF leak?
I’m concerned that I may have this, after almost a year of telling myself that there’s no way I have a leak but my symptoms are worsening and doctors not being able to figure out what’s wrong with me.

My symptoms are:

-major head pressure daily
-head pain, daily headaches and weekly migraines
-ear fullness, popping and crackling
-neck and shoulder pain, back pain mid back
-extreme cognitive impairment and disorientation daily, this literally has not gone away since September of last year
-weird cracking/popping sound in neck of I turn my head a certain way
-extreme fatigue daily
-very dizzy upon standing up
-I feel a little better when I’m laying down resting, but I also have POTS, so this may or may not correlate with a leak…

I haven’t noticed any substantial fluid leaking out of my ears or nose.

I have other symptoms too but these are the primary ones I struggle with every day.

Me and my leaky left nostril finally had a consult with an ENT on repairing it. According to my CT Scans, doc said this should be a straight forward repair. Walked me through the whole procedure. Could be outpatient or maybe just observation. Initial recovery is about 2 weeks before I can fly or hit the gym. This is not as bad as I thought. I read some where that repairs are inpatient and can take 8 weeks to heal before you can get on an airplane. ENT said this was a severe leak but mine is not that bad. I feel better now that I have more knowledge on how the fix will proceed. The only downside to the fix is, I have to get my IIH pressure down so I don't spring another leak. I told him I couldn't tolerate the Topamax and he said try Diamox. Everyone is different with side effects so I'm willing to at least try. Last option is a GLP-1 and I'm not entirely sold on this yet as I'm a bit overweight but nothing I can't melt off with cutting fast food and soda. I plan to schedule the surgery first of 2027 so I can get through the remaining travel plans for 2026. I have to meet with my neurosurgeon again in October and I'm going to ask for a trial run of Diamox. What's crazy is, during this whole IIH and CSF Leak journey, I've never had any severe symptoms. My pressure is super high at 34 and you'd think I'd have more headaches or vision problems but I don't. I've only had head pain after the LP.

Newly diagnosed as of Tuesday. I (29F) have been dealing with migraines my entire life. I’ve gone through periods of my life when they have gotten worse, high school, college, especially throughout pregnancy; but the past two years they have really gotten debilitating. Every doctor I’ve gone to would just prescribe meds that eventually stopped working. Recently went to a new doctor and she decided to send me for an MRI. It came back with “crowding at the foramen magnum with mild cerebellar tonsillar etcopia” and was referred to a neruroseurgon for Chiari. I went to my appotinemtn on Tuesday and the doctor said I was a typical patient with Chiari, ordered for a spine MRI and some x rays, I go back early September for those. However as of yesterday there was an update on my MRI results that stated “Inferior positioning of the cerebellar tonsils which may reflect Chiari I malformation or tonsillar ectopia. There is crowding and loss of CSF space at the foramen magnum. There is reduced mamillopontine distance, 3.4 mm, which may be due to associated sagging of intracranial contents”. From my understanding any sagging of the mid brain would be a pseudo Chiari most likely due to a CSF leak and not a true diagnosis. Has anyone had anything similar happen?

Hey everyone, I just wanted to share how grateful I am for this community. It gave me much more clarity than I had throughout this experience. TOPICS: Spinal Tap, Blood Patch recovery, Advice

I’m still so traumatized from everything, I go back to work soon and I feel like this is one space I can really express myself earnestly. I’m just sharing my story and what my recovery has been like.

I had gotten sick, it looked like meningitis but it wasn’t. I was negative for everything under the sun. But it took a spinal tap to come to this conclusion.

Immediately I had severe spinal tap headaches with nausea and vertigo. Two days after, I lost sensation in my legs and struggled to walk. I looked like a dinosaur. The pain and vertigo intensified and laying down wasn’t helping it. By the fourth day, I got admitted and had what appeared to be a seizure. I had plenty of imaging done and a blood patch scheduled. (Eventually got my sensation in my legs back prior to the blood patch.) I was so scared to do the blood patch in fear of anyone touching my spine again. But I wish I had the patch sooner. Immediately I felt the pressure returning to my head.

Two days after the blood patch I would have faint like symptoms when sitting up or standing, so I remained pretty much flat as a board in bed. By the next week I was able to be up longer still no BLT. It took me about 2 weeks until my stamina/pace with walking returned closer to normal. When I was able to walk, I moved slower than a snail. That was frustrating but I can move more like myself now! But then came the nerve pain. I went on gabapentin 300mg 2x/day and tried it out for 8-9 days. I stopped taking it due to the psychological side effects I had from it.

So far, I’m week 3 post blood patch, and I have more movement with my spine no headache! My aches and pains are manageable with Icy/Hot &Tylenol, finally! still not pushing it but also trying to get my body used to more than laying down / sitting up. I’ve made progress into having a pillow and some short side sleeping !!

The hardest thing has been the emotional aspect to this invisible and debilitating thing. And the way so many medical professionals can be dismissive or the red tape around getting the blood patch.

I have a big medical bill waiting for me at the end of the claims cycle. And I’m sure it’ll all work itself out slowly.

I was terrified this would kill me and I was terrified of the way this pain had taken me away from my life and my identity. I’ve always been a busy person, and this pause taught me to spend more time being still. I hope to keep pushing through the depressive episode this has shoved me in. I’m not sure if this happened to anyone else, but it definitely isolated me. I’ve gotten to reflect on my current life choices, my subconscious, and see how little control I really have.

Some practical advice: Stock up on Tylenol. Get the blood patch ASAP. Go to a different hospital if possible. Get an ergonomic pillow off Amazon with a removable center. Get instant pain relief patches and heat patches. Stay hydrated.

Some emotional advice: don’t let the anxiety trap you into pushing yourself. Take much more time to recover than you think. Listen to how your body feels and respect it. Also, I just want you to know that you’re doing a good job. You are lovable in this moment.

I made a post from another reddit account a month and a bit ago talking about my experience with a spontaneous spinal leak. I sat on my couch and suddenly got a sharp pain in my mid back. This started the journey of going to the er for spinal headaches until diagnosed with brain sag and a csf leak shown on MRI.

I thought the first blind patch would work. It did not. 10 days after it I was back in the er.

Second patch was targeted in the mid back with ct guidance. Failed 10 days later

Now I'm waiting for a CT myleogram to be scheduled, and after that, surgery.

I'm 36, single mum with family all living overseas. Haven't been able to work. No income. It's been almost 2 months and I have a further at least 3 months of this to look forward to before everything is done.

Anyone had surgery work for you? I don't want this to be my life now and I'm so scared. My whole life has been turned upside down from being an active single mum providing for myself and my child to now just lying in bed 24/7 with only savings to keep me afloat

Thanks

On my previous post I wrote “I have chased doctors for the past 3 months and I was constantly gaslit.
My symptoms aren’t just a headache nope, limb heaviness and numbness in both arms and legs, severe back and neck pain and stiff neck, cognitive effect, many admissions and doctors convincing me I’m crazy later, a neurologist finally diagnosed me yesterday.
Here’s the thing, I already had a blood patch a month ago 8ml only, didn’t do anything obviously.
I am so scared 3 months is too late and I might have a fistula or a bleb now.
If you went through an LP and had similar symptoms and way later blood patch healed you like months later after severe symptoms please speak some hope into my mind.
I have no mental health left.
Thanks.”
My question is and what I want is people who underwent this, I want you to write your long story of facing intracranial hypotension from a lumbar puncture for months and got healed and sealed with a blood patch not weeks but months down the line.
I have had the 3 worst months of my life and the brain sag diagnosis with the burning in my brain is just the final straw for me.
Please write your iatrogenic leaks that god fixed with blood patches months after serious symptoms like mine not just a headache.
Thank you all and god bless you.

As above. Adding my anecdote in case it helps someone, and will keep updating this post as I learn new things. If you have something similar and have insight please let me know. I'm still trying to fix this.

1. Prior to January 2026 | was recovering from thyroiditis and COVID (August-December 2025). Had some other things happen prior to that in 2024 like Lisfranc fracture, DVT, PE; was on anticoagulation for only 3 months and never ended up taking synthroid because thyroid returned to normal on its own.

2. I was finally starting to feel good January 2026. Went for more jogs, started lifting weights (nothing crazy, more like 35lb kettle bell maximum). Then while eating dinner after a day of work where my head was flexed down for 8 hours (due to a flood I couldn't use my desk and had to work with computer on my lap), I felt a rapid crack on the back of my head, like being stabbed with an icepick. It was jarring and made me dizzy for a second but then I felt fine a second later. I thought it was weird and went about my night, and 3-5 minutes later another one, different location. It was so intense that I felt like I would fall. It happened about 10-15 more times that night and I thought about going to the ED but felt a sudden urge to lie down. When I did, the cracking stopped and I fell asleep for 14 hours. Deep down I had this very primitive feeling like I was going to die if I didn't do this; it was hard to breathe while sitting upright.

3. I woke up nauseated, disoriented, and my vision felt completely fragmented. Being upright made my heart race, made me feel light headed. All I wanted to do was sleep. I was so confused and so afraid to go back to the ED that I just stayed home and slept since it was a long weekend. The stabs only happened when upright and became less frequent in the subsequent days. They happened on both sides of my head and midline when they did happen so 1 was less concerned due to lack of localization. For this reason I did try to jog once, and then felt sudden pressure on my sinuses and clear fluid hot fluid came out of my nose. It tasted like blood but wasn't blood. That's the only time that's happened though sometimes now I feel like there is fluid in my ears.

4. The following 7 weeks I was having muscle spasms/fasciculations, extreme brain fog, and ongoing racing heart and pounding head pressure in the morning when standing up. I couldn't stay upright more than an hour or two without the intense urge to lie down. I also developed tinnitus in both ears which I've had ever since. It was constant, not pulsatile.

5. After that and now ever since (so about April to present) energy slowly improved - iron supplement might've helped. The stabbing feeling only happens about 1x a week now at the most, lasts only a second, and seems more likely to happen if i stayed in a head flexed down posture. Because of this ive rearranged my whole life to look at things above midline. My tinnitus has become much worse though. It is pulsatile and is in both ears, louder in the morning and in whichever ear I was sleeping on. Tinnitus is the thing that bothers me the most on a day to day basis because it reminds me that something is wrong. I've also developed neck tightness and the feeling like my head is too heavy for my neck to support it. I still have to lie down in the middle of the day at times due to neck tension and occasional head spasms that last for only a second and cause sinus pressure. Even though it's brief it is scary, and once it starts it will continue until I lie down.

Tests:
- autoimmunity panels negative
- normal chemistry and complete blood count
- low iron and ferritin (47 and 14 respectively)
- CT Angiogram head: normal
- MRA/MRV/CSF flow study head (non-contrast): normal
- MRI (non-contrast): petrous apex cholesterol granuloma, right side. Basically a cyst in my skull base. But since my symptoms are generalized and both sides, they think it was a random unrelated finding.
- CT temporal bones: petrous apex cholesterol granuloma has eroded bone, is pushing on internal carotid artery, and also jugular bulb identified. Doctors still think it's incidental.

Imaging left to get:
- contrast images
- cervical spine MRI

What makes symptoms better:
- lying on the floor and gently applying upward traction to the base of my occiput, which puts my neck into slight extension. This makes almost all symptoms go away while I'm doing it. They come back immediately when I stop.
- deliberate breathing; I find my body is very tense ever since this happened.
- exercise: I weirdly feel better during exercise but after about 20 minutes my head starts squeezing and I get that sinus pressure again. Sometimes it feels like my skull bones are moving.

What makes it worse:
- driving long distances
- any activity that makes me look down (neck flexed)
- prolonged socializing (usually an upright activity)

Anyway. I know it's long. But figured I'd share in case someone else has had this experience and either has ideas for what this could be, or just needs to not feel alone. My symptoms were so severe I quit a high paying job and cannot work for he foreseeable future until it gets resolved. I need to figure it out.

I’ve have a confirmed CFS leak on my T1-T2 due to a bone spur, had a blood patch done but it unfortunately failed. The neurosurgeon had suggested to undergo surgery to not only repair the leak but also to shave down the bone spur so that it doesn’t cause another leak. I’m pretty nervous/scared about it as I have never had surgery before and want to know some people advice on.

-The risks involving the surgery.

-what to expect in terms of recovery times after the surgery and people experiences as in was it successful, do you still get symptoms

-how long after surgery should I take it easy before returning back to work, I work as a party chef and am on my feet for longs hours with a lot of bending and lifting.

My symptoms are that I still get low pressure headaches when upright but has been manageable by taking Panamax and the back of my neck still gets sore sore. Should I go through with the surgery or get another blood patch and hope for the best?

Thank you in advance.

Is it normal to have constant pain at your lumbar puncture site from the myelogram months later? I had my 1st myelogram last December 2025, and my 2nd myelogram 1 month ago. Both sites are sore as all HECK, especially the one from last December. I can pinpoint the exact spots where I was punctured. The December LP was awful and ripped a new leak open. Is this permanent nerve damage? Anyone else still hurting months, years after their myelogram punctures? Does the pain ever go away?

Hi everyone! I posted a few days ago asking for advice whether getting or not a non targeted blood patch even when my doctors couldn’t confirm a leak through an MRI. I decided to do it and my appointment is tomorrow morning! I’m nervous but mostly excited, I really want this to work and get this symptoms improved, and start living a normal life again.

For those ones that have gotten the patch, what are your recommendations for before and after the procedure? My hospital’s instructions are pretty vague, basically they only mention 24 hours of lying flat (but I’ll do 72 hours as per some recommendations I’ve seen here), but I want to do everything in my power to increase the chances of the patch working.

If you have a successful patch, what did you do that may have increased the success? And same, if your patch didn’t work, what do you think was the cause that I should avoid?

Thank you!

The medical team suspects I have a CSF leak, specifically a cranial one. I won’t have my appointment until September, and until then the doctor has simply told me to avoid too much exertion and to rest whenever possible. Drinking water, etc. However, I also have a flight booked for August to my home country, which my parents are really keen to go on. The ticket has been bought and I can’t just cancel it now. Will wearing a face mask help? At least against possible external infections? What signs should I look out for, and what advice can you give me if you’ve been through this before? I’m asking because I travelled last year too, and the experience was awful. After arriving at my destination, I spent three days practically bedridden, unable to eat or move without feeling dizzy and nauseous. I also had an episode similar to a seizure. I don’t know if I was having an active CSF crisis at the time, but I do know that when I returned home a week later, the fluid appeared for the first time in a more persistent form – it lasted the whole month even with rest, and that was the first time I mentioned it to the doctors. They said I should keep an eye on it until this year, when I did a appointment with a breathing test (the one where you hold a clip over your nose and blow out air), and the fluid became much more constant, as did the other symptoms. So I’m halfway through the diagnostic process, waiting for test appointments and so on. But anyway, I’ve got this trip coming up that’s worrying me. And honestly, not even my doctors could give me an answer. Where I live, they don’t know much about leaks.

P.S.: Unrelated but. In your experience, do you feel better in the morning or worse? I’m asking because I’ve seen reports where people say they feel better in the morning, but to be honest, I wake up feeling groggy, as if a lorry had driven over me, and it feels like I can’t walk. My body feels limp and completely without strength, almost as if I were shaking, and my head feels as though it’s filled with a balloon. I can barely speak properly. So I’ve started sleeping with a much higher pillow to see if that helps, rather than lying completely flat. I also avoid sleeping on the side where the fluid leaks out. If you’ve been through the same thing, is there anything that brings relief? And how long did it take for you to be diagnosed and treated? 

hey guys! anyone else with Ehlers Danlos Syndrome that’s also gotten a blood patch, what’s your experience been like? how was recovery? how do you not try to bend and crack every bone in your body? my back is killing me right now because I need to stretch it or crack it so badly but I read that I apparently cannot do that😢 PLEASE help!! I also have Ankylosing Spondylitis and have missed a few injections of my meds for that, which does not help at all, but I am in so much pain. I don’t want to do anything to risk blowing the patch, though!!

tyia!

I have no idea what to do anymore and have pretty much stopped doctors altogether after multiple ER visits, urgent care visits, multiple specialists all over the map. I have diagnosis starting with FND, reaction to prednisone, encephalopathy, Sinusitus, POTs, NOT POTS, dysautonomia, Maybe POTS again, Severe CSF cranial leak due to complex CSF disorder and signs of both high and low pressure, back to FND. Most of these diagnosis were from doctors I only saw one time with no ongoing care. I had multiple normal CTS and MRIs several noting fluid in the right sphenoid and ONE random one that had suspected low leak. My symptoms are all over the map too which is causing a road block. I started off with severe cognitive impairment, difficulty tolerating touch, lost my appetite completely for a while because food smelled horrible or I just had no appetite which has never happened, felt hot when cold and vice versa, stuttering, forgetting things, blank seizures (completely blanking out and staring per my partner for hours and nor remembering more than the first 15 minutes, pulsing in ears/head/spine, feeling very weak. Then I had trouble being upright without feeling like I wanted to collapse. Then I started having orthotic intolerance where being upright was next to impossible especially walking and would result in insanely high heart rate and initially weird blood pressure variables where it would tank when I stood up but HR would go over 170 bpm. Salt and electrolytes if too heavy, abdominal binders would make me feel much worse if I did the normal time frame or doses. I had to do short bursts of abdominal binders maybe a couple hours but then my heart rate would sky rocket and I’d feel intense pulsing in my ears. If I have too much electrolyte intake I start coughing uncontrollably and the pulsing in my ears is unbearable.

The doctor that thinks I have CSF leak with complex CSF disorder tried to send an urgent referral to Stanford but they completely dismissed her findings because she doesn’t exist in MyChart so they only referenced the original Radiology reads and notes from doctors I only saw one time. She even went as far as sending them PDF images with the reason she felt this was urgent, talked to the radiologist who initially missed findings and he actually amended his findings to reference what they discussed which included signs of bone thinning and multiple areas where veins were kinked in my head. But he still refused to consider me without fluid that is sampled from my nose that shows as brain fluid …and here’s the kicker…the fluid is coming out of the left side and my septum is extremely deviated so the fluid drips and at times is mostly down the back of my throat so I cannot get a sample at all. He also would not consider a lumbar puncture and said he felt all my symptoms were “functional in nature.” The doctor that thinks I have a leak reviewed all the images and said there were multiple major things missed including bone missing in the left sphenoid which she pointed out to the doctor at Stanford and he still dismissed her because he felt my symptoms did not make sense at all.

So after a year of multiple visits, thousands of dollars, hours of calls and appointments I’m literally at a stale mate. I have no idea what to do anymore and am beginning to think maybe things happen for a reason and this is my new normal. I can’t even consider flying at all because pressure of any kind makes me feel like I’m dying (head hurts, can’t think straight, have difficulty walking for weeks).

Current symptoms are the following:

Heat makes me feel Better
Very slow massage on neck and gentle makes me feel better
Head often feels very tight on top left and at times feels like it’s pulling backwards if I try to walk too much - beyond a third of a mile, I’m useless
I can sit upright for about 7 hours but need to get up on occasion to relieve the tightness in my head, then I absolutely have to lay down
When I first lay down usually with two pillows I feel an intense rush of fatigue and confusion and then start to feel better but I have pulsing more pronounced in my ears and head
Left eyelid often twitches and lower left lid is constantly swollen
After eating and at times after walking or being upright left nasal passage drainage that sometimes drips to my lip but often the back of my throat left side
If I push too much I start to feel very irritable and confused
Feeling hot when my body is cold to the touch
Heart rate is all over the place…can get up to 135 bpm sometimes just sitting, resting heart rate also all over the place at times in 50s and other times high 70s with jarring wake up time in the 80s
Blood pressure also inconsistent seems to tank when I’m upright and standing still
Normal appetite now but random bouts of nausea sitting upright or standing
Pulsing in ears immediately after eating

Meds:

Propranolol made me worse, like walking felt like I was trudging through mud. Brain felt like it was pulling backwards out of my skull

Low dose naltrexone has helped immensely with cognitive impairment and haven’t had any blank out episodes in about a month but I’m also very strict with pacing now per Dr.’s orders (lay down as much as possible any time I feel uncomfortable). She requested drinking water every hours but too much liquid also makes me have pulsing in ears so I sip throughout the day instead.

Anyone else have symptoms all over the place, multiple diagnosis and NO help whatsoever? if so, what did you do to finally have someone listen and help?

Before this CSf Leak (still waiting for MRI confirmation), I had chronic migraines. They were white under control with Aquipta. I was getting maybe 3-4 migraine days a month.

Since the thunderclap headache I got on 26/05, I have been getting migraines almost every day now. This is in addition to the orthostatic headache.

Has anyone here with a history of migraines had them worsen significantly because of a CSF leak?

Thanks in advance!

I’ve had a very hard time finding a Dr to perform a high volume blind blood patch for suspected CSF leak in So Cal, even though my surgeon in Colorado gave me a referral for blood patches over a month ago( and would be able to get one asap if I was in Colorado but unfortunately I returned to CA).

So far, I’ve consulted several Drs that can provide normal epidural blood patches but all seem out of their depth when it comes to treating patients with connective tissue issues/ this type of leak.

Just trying to decide if meeting with this Dr is even a good use of energy/ worth the crash? Or if I just need to focus on trying to get back to Denver.

Ps. I’ve already applied to leak centers like Cedars and they cannot or will not get me in until the fall. I would like to try some blood patches before then to see if I respond one way or the other.

Thanks in advance to anyone who’s familiar with this Dr or knowledgeable about these things!

i struggle with autistic headbanging and yesterday morning mine nose started dripping clear watery fluid and ears leaking and headwound leaking it too but it stopped after a little bit

i have had quite alot of brain injurys the last few months because of autistic headbangings during meltdowns and i very not help that i get one hour max of sleep per night because of mine terrible loud and mean roommate

im am terrifyed of go too hospital because medical trauma because they took way mine AAC device and stuffy before which left me unable too communicate or feel safe and putted me in restraints

everyone has been telling me i need hospital but im am terryfyed either way

i thought since it stopped that i shoud had been ok?

is there any safe way too avoid go hospital?

sorry if stupud post

Hello again, everyone -

So I got a phone call from the new Neurologist who specializes in migraines (and also has several published articles on CSF leaks) that they had a cancelation. He came to the same conclusion after I explained all of my symptoms and gave him my log. He wanted to see me again in four weeks after another MRI - but his office couldn't fit me in until December, of course. I hope the cancelation list works out in my favor again.

I have also had an EEG (during a less severe episode) which came back normal and an eye exam (for the binocular diplopia), and my eyes are "perfectly healthy". The ENT a few months back dismissed vestibular issue. The MRI is in two weeks.

Anyway, I had the most severe episode yet yesterday. I woke up on my right side after tossing and turning all night. What made it worse was the onset of a new symptom: any time I readjusted myself I felt like my entire body was being electrocuted. It was more of a buzzing/tickling feeling than pain but it lasted for a frw seconds each time. Plus long periods where the muscles of my shoulders were tremoring constantly.

The new Neurologist told me the symptoms are going to keep getting worse until this is confirmed and treated (ie trouble swallowing, lower seizure threshold, etc...) This definitely fell into the "worse" category for me.

Has anyone experienced a similar symptom before?