Doctors

[Knellie]

   I'm sorry, I just need to vent, so you don't have to reply to this post. Today I went to and ENT to discuss a possible CSF leak. I have had headaches for about three years, and on top of that all of my POTS symptoms. I recently started getting a metallic taste in my mouth and drainage through my nose. I have pressure headaches and the pressure goes up when I exercise or bend over. When I bend over I can't breathe through my nose very well and the ringing in my ears gets so loud that I can't hear very well. My eyesight has been getting way worse and my vision gets blurry when I exercise. I had heard from many people that CSF leaks can mimic POTS and someone on this forum even sent me a video of a doctor from Stanford talking about it. I went to the ENT today and he literally told me that I had a runny nose. Ya, thanks a lot genius. I am glad you went to medical school to label people "runny noses" and then give them nasal spray. I could tell that he thought I was making stuff up and just pulling random crap off of the internet. I can't fathom why someone who is supposed to be educated would literally think that I would waste my time and money to go around and make up symptoms. I am so tired of people telling me I'm crazy. Oh yes, because when I am on the couch barely able to move and crying from an awful migraine that is killing me while I still have to do school work and take care of life I am making it up for attention. I have no idea what to do because I don't have any doctor to go to who believes me. All the good POTS doctors in my state are booked wayyyyyy out or won't take new patients. And, I can't just go to another state because I don't have the money to pay for a stay like that and insurance won't cover it. I just wish that someone would listen. What am I supposed to do now? Thank you for reading this if you made it this far. I am just so frustrated😣

[CallieAndToby]

Yea I hear you. My ears have been itching for about 10 years and I saw so many ENT's in the past and they would look in them and just say they didn't see anything. They put me on antibiotics and ear drops but that never helped but now I'm wondering, why not a biopsy or why not consider fungal or yeast? Now I've got MRSA and sores in my ears and the itching is unbearable....... Can't believe he said "runny nose" to you, I feel like they get out of med school and they are content knowing basic basic stuff but when it comes to complexity I have yet to find a doctor that wants to look outside of the box and actually do some research and I feel like patients like you and I that are beyond sick are left to do research.  Anyhow, I don't know if me venting was helpful at all but I understand and feel your frustration and I'm so very sorry. I have the headaches, ringing in ears, and my jaw keeps popping as well........ 

[Knellie]

@CallieAndToby22 - Ouch! That sounds so painful! I'm so sorry. Thank you for answering, its nice to know that I am not the only one who feels this way.

[Pistol]

@Knellie - I am sooo sorry that happened to you! Yes, there are too many ignorant docs out there! I also had to read up on my symptoms and actually diagnosed myself with HPOTS before I got to the specialist ( he confirmed it though, after 5 cardiologists gave me a pat on the head and smiled at me ). Our medical community needs to come out of the caves and realize that they do not have the sole lease on knowledge! If a patient shows up and has done the homework and has legitimate symptoms, but has the audacity to suggest - or ask about - a diagnosis that correlates with these symptoms ... how dare they ! I have found it much more likely that a doc gets his rear-end hurt over this than that he would take us serious. 

Just get another opinion. The next doc may be better at treating patients! Also - you can always ask your PCP to write a referral letter that directly asks the ENT ( or neurologist or whoever he refers you to ) to rule out CSF leaks based on your symptoms. That way the doc may take you more serious. 

Again - I am so sorry!

[Knellie]

@Pistol - Thanks for your reply! I didn't know you could ask your doctor to do that. Any tips on how to bring it up to my doctor? 

[Pistol]

@Knellie - assuming you have a PCP you can go to him/her, explain your symptoms and what you have found out about CSF leaks, and how your symptoms are in line with CSF leaks. Then ask him/her to refer you to a specialist that can diagnose this condition. He then will send a referral request along with a letter requesting to rule out or diagnose CSF leak. Especially after telling your PCP about the bad experience with the ENT he/she might sympathize. Referrals to specialists are the responsibility of PCP's, so it should not eb something you have to fight over. 

[cmep37]

@Knellie I think a lot of us have been where you are - I have left many appointments with so called "experts" in tears because they just wouldn't listen to what I was telling them.  One particular highlight was the Cambridge-educated cardiologist who spoke to me for 5 minutes and told me I didn't want to work because I was too lazy (I had specifically said how much I missed my job) and therefore my mind was creating these physical symptoms!   Keep persevering - you will eventually find someone who will believe you.  I would get myself on a list to see a good POTS doctor in your state, what seems like ages on the waiting list will pass and at least they will have had some experience of treating patients like you.  

[CallieAndToby]

On 6/3/2021 at 8:37 AM, cmep37 said:

@Knellie I think a lot of us have been where you are - I have left many appointments with so called "experts" in tears because they just wouldn't listen to what I was telling them.  One particular highlight was the Cambridge-educated cardiologist who spoke to me for 5 minutes and told me I didn't want to work because I was too lazy (I had specifically said how much I missed my job) and therefore my mind was creating these physical symptoms!   Keep persevering - you will eventually find someone who will believe you.  I would get myself on a list to see a good POTS doctor in your state, what seems like ages on the waiting list will pass and at least they will have had some experience of treating patients like you.  

Ouch! That's a horrible thing to say to a patient. I once had a doctor tell me if I got a "boyfriend" I would be happier and okay, lol. This was years ago but I was too sick to do anything so.... 

[cmep37]

Yes exactly, the thing that bugs me most now is not that he siad it but that I was so shocked I said nothing back!  You just don't expect to be insulted like that do you?  I really wish they'd stop and think how they'd feel if someone said that to them but they seem to think their medical degree is a licence to be rude!

[Guest KiminOrlando]

I was told to quit my job and get married. It is just a thing bad doctors do instead of admitting that they don't know what is wrong with us. Keep searching. 

[Pistol]

3 hours ago, KiminOrlando said:

I was told to quit my job and get married.

What the 😖😱😧!!!!

[GasconAlex]

Skull based CSF leaks are tricky. If your nose leaks on both sides then it is much more likely it is not a leak. Leaks also tend to leak more in certain positions and less in others. There's some testing of the fluid that can show a leak but it is difficult. If a CT scan shows damage then the chances of a leak go way up. MRI's are not so good at detecting bone damage so are often secondary. There is a fbook group for skull based CSF leaks.

Most ent's will not have experience with this. You need a skull base surgery (nose) to be able to do anything. (The skull base surgery also has an ear branch which uses entirely different surgery to get at the skull base) A general ENT would probably need to refer you to a good specialist. I doubt that a general doctor would know exactly who to contact in your area as it is highly specialised (could be wrong but my rhino surgeon, oto surgeon and neuroto surgeon all wanted referrals from a general ENT before accepting appointments)

Some people with leaks do get fixed but skull base surgery is often fairly tricky. I've had several surgeries to fix leaks in the ear and in the nose but still leak. 

 

[Guest KiminOrlando]

1 hour ago, GasconAlex said:

Leaks also tend to leak more in certain positions and less in others.

So when my nose runs like someone turned on a water faucet when I bend over, is that CSF or normal?

[GasconAlex]

More likely to be a leak. According to my doctor. It should also be clear and like water. If you wipe it off with a paper hankie it should dry leaving no trace. You can have liquid build up for other reasons but CSF is more likely to form pockets. 

My otosurgeon did a quick endoscopic look at my sinuses said one sided fluid pocket with no clear source and passed my off to a rhino-surgeon with the prescription for the CT scan and MRI.

When my leak is worse my POTS is worse. But there's always a low level drip.

 

[CDNPortGrl]

I’m not sure if this helps you out or not but I’m a recent POTS ‘victim’. Prior to May 6, my heart performed as it should. Leading up to that dreaded moment in my life, I had vestibular migraines, a runny nose, the beginning of Maniere’s Disease, facial electrical flashing sensations, etc. The doctor prescribed a nasal spray for the sinuses which didn’t do anything since that wasn’t my issue. I actually had to do my own ‘self diagnosis’ as doctors are notorious for being clueless and all the ones I’ve seen are no exception. In my situation, I had a constant mildly sore neck and after a bike ride, my world changed. I came across something called Craniocervical instability. At the time I didn’t know if I had it or not, but just in case, I put on a cervical collar and literally within days, the migraines, nasal stuffiness, ear plugging, etc. all vanished. I’m not implying that this is what you’re dealing with but in the small chance that your nose is dripping due to spinal damage (and misfiring nerve signals), it might be worth looking into...I am sorry you’re contending with so many ignorant doctors though. I was diagnosed in the ER with POTS and the cardiologist I’m presently dealing with stated that it’s highly unlikely as it’s so ‘rare’. Yeah, ok...that’s a medical diagnosis right? Lol Sounds a lot more like a misguided opinion. I dread his song and dance for months or years.

[Pistol]

@CDNPortGrl - how are they planning on treating your CSF leak? Do you think fixing it will stop your POTS symptoms? 

8 minutes ago, CDNPortGrl said:

I was diagnosed in the ER with POTS and the cardiologist I’m presently dealing with stated that it’s highly unlikely as it’s so ‘rare’.

Well - POTS is not rare, it is just underdiagnosed. When I first became severely symptomatic ( I had compensated for the symptoms for years, unaware that there was something wrong with me other than "Stress" ) no doctor at the hospital where I worked had ever heard of it. Now it gets diagnosed frequently, and I hear of more and more people in the community either being diagnosed with it or knowing someone who was diagnosed with it. Most docs don;t understand that there are so many different causes for POTS, CSF leaks being one of them, that they simply shut it in a drawer with the treatment being salt, water, compression and beta blocker. 

I hope they will help you determine if the CSF leak is the culprit in your case - the symptoms you describe sound highly suspicious of a leak!!!!!

[CDNPortGrl]

It’s scary that this is the circumstance. Our lives are literally in their hands so for them to be unaware of how common this is, is greatly concerning. Hopefully COVID long haulers help drive research into this ailment and a cure. I struggle to think this is permanent..I will definitely look into the CSF leak though. Thanks!!

[CDNPortGrl]

Wow, you are onto something. This is what I had when I gave birth in 2016. I didn’t realize what the acronym stood for. They patched my spine with blood but perhaps it somehow opened up again...or a new leak formed..

[Pistol]

@CDNPortGrlSound like a good possibility! That alone should give a doctor enough reason to investigate the possibility!!!!

[Guest KiminOrlando]

Wait... craniocervical instability causes csf leaks and a runny nose? I have craniocervical instability and declined to have surgery. Nobody said anything about a csf leak. 

[CJ65]

On 6/7/2021 at 4:08 AM, CDNPortGrl said:

Wow, you are onto something. This is what I had when I gave birth in 2016. I didn’t realize what the acronym stood for. They patched my spine with blood but perhaps it somehow opened up again...or a new leak formed..

@CDNPortGrl when you had the blood patch was it because you had terrible headache after spinal anesthesia? In my limited experience being around post partum women with blood patches (I’m NICU nurse), it seems like that type of leak reoccurrence would cause pain. Is that correct? 

[CDNPortGrl]

KiminOrlando, to my knowledge, Craniocervical Instability only increases your chances of a leak if you have Ehlers-Danlos Syndrome. It's associated with Spontaneous CSF leaks. So you would need to know if this is what caused your instability. Also, as scary as the surgery is, I gather it can get rid of the POTS, from the online testimonies I read..if that's too scary, try Prolozone therapy perhaps. You might end up being one of the lucky ones to escape this...

Yes in 2016 I knew exactly what I had - the well known head splitting - worst headache of your life while standing, situation. Because it followed a specific event and was clearly a leak, I was treated right away without tests. This time around if I have a leak, it's a Spontaneous one and will be extremely hard to pinpoint..the more I learn about this, the less likely it seems to be the old tear. 

[CDNPortGrl]

Very sorry CJ65, I didn't properly answer your question. Correct, it was a spinal anesthesia for an epidural. I don't recall feeling the pain in the spine as child delivery trumped everything pain wise, but 24 hours later, it was very much a head issue and I don't recall the spine hurting. 

[Pistol]

One of my sisters had a Lumbar puncture once and developed the horrendous spinal headache afterwards. She was bedridden for weeks, and since then she has POTS, including tachycardia and hypertension when standing. I always wondered if the spinal headache could have something to do with the HPOTS, or it was triggered from the prolonged bed rest? HPOTS runs in females of 3 generations in my family ( mother, sisters, nieces ), so either event could have triggered it. 

[CJ65]

On 6/8/2021 at 8:11 AM, CDNPortGrl said:

Very sorry CJ65, I didn't properly answer your question. Correct, it was a spinal anesthesia for an epidural. I don't recall feeling the pain in the spine as child delivery trumped everything pain wise, but 24 hours later, it was very much a head issue and I don't recall the spine hurting. 

Hi @CDNPortGrl I should have clarified that the post spinal pain is all headache, caused by leaking csf from the puncture site. When the normal pressure bathing the brain in csf drops = wicked headache. It’s not supposed to happen  with epidurals but sometimes it does.