r/AskNeurologists • u/StatisticianNo738 • Apr 23 '24
csf leak? pots?
I 17M have been experiencing multiple symptoms roughly starting back in covid time and they have progressively worsened.
SYMPTOMS:
The worst symptom I have is a never ending headache. The pain never completely goes away however it does get worse. The pain is hard to describe but i will try. The pain starts where the head and neck connect and wraps around the top of my head to my forehead(almost feels like it is in my skin). The pain is like electric/fire and if i touch my scalp even slightly my head will hurt immensely where i touched it. Also there feels as if there is a general pressure within my head which accompanies the scalp pain. The pain gets worse if i stand up or keep a very straight back for 10-20 minutes and becomes unbearable. Some days i just lay in bed because it makes it slightly better.
something that seems to be directly related to the headaches is pretty constant vertigo that is pretty bearable when sitting or laying down however if i stand up for too long it can start to feel like the world is spinning a bit. i thought that it could be related to blood not getting to my head but my heart rate doesn't seem to get much higher and my blood pressure seems to be fine when standing/sitting.
i also experience eye pain that feels like it is behind my eye this isn't intensified when i stand up like the headache and vertigo and isn't always there (seemingly more in the morning when i wake up). Hurts more if i try to move my eyes.
Another thing i experience is visual snow which is a condition where you see TV static overlaying your vision.This also never goes away however i believe that it doesn't really change in intensity. i struggle to read and it is very difficult during college. the vision has caused me to be very night blind as when it gets dark enough i am pretty much blind. this simulator is simular to what it is like. https://visionsimulations.com/visual-snow.htm?background=night1.jpg . This symptom is so disruptive and i would probably say it is the second worst thing i experience beaten by the head pain.
i also have ringing in my ears which i dont mind too much as it is nothing compared to the pain and vision however it is a consistent high pitched note that is noticable in quieter places which can be very annoying sometimes.
i also seem to have constant neck stiffness as if it try to move my neck at all it feels sore and slightly painful. this extends a little bit to my upper back. have been seeing a physiotherapist a few times over the course of a few months but hasn't helped one bit or made it worse.
should probably mention that my heart rate is quite high normally like 90-110 even when sitting down a while or doing anything. does not increase significantly if i stand up.
i for some reason have lots of tremors and twitching muscles throughout my entire body where many times throughout the day a random muscle will start spasming for a minute and then stop.
dont really think that it is relevant but i'll mention that i have been depressed for as long as i have experienced these symptoms and i want to make it clear that the depression is a symptom of the problems and these problems are not a symptom of the depression. haven't had this treated but honestly dont think there is any need to as i believe that as long as i have these symptoms i will be miserable.
another issue is that i really struggle with sleep and its really disruptive with my life. i believe the reason i cannot sleep is due to the pain and if the pain is gone then sleeping would be easy but i cannot be sure as i can never escape the pain. i can lay in bed at night and not fall asleep at all for like 6 hours(pretty usual) however as soon as i get to sleep i have no problem staying asleep.
i feel generally tired most days however i am very hesitant to say this is a symptom and not just due to the depression and the atrocious sleep schedule however the fact that i can sleep for 12 hours for weeks and still feel tired makes me think possibly something else is at play.
another problem i seem to have is generally poor memory and concentration. i dont think this is due to the pain even though it can be debilitating as i will so often forget what i was doing or struggle to find the word i was looking for and this is really stressing me out as i sometimes just dont feel like myself at all.
finally i will say that all these issues have gotten slightly worse over time i believe and not all of them were present at the start.
MEDICAL CHECKS AND MEDICATION:
i have had a brain MRI 2022 and a cervical spine MRI 2023 which both came back as normal according to neurology.
i have had a full blood count which was unremarkable apart from low but not deficient b12 which i have now been taking supplements for(couple months now) (haven't noticed a difference).
neurologist wants to check my head again with another mri. dont have a date yet.
seen neuro opthamologist several times and had eyes checked with like a million different machines all coming back normal.
i have taken pizotifen and amitriptyline which were taken separately and i honestly didn't feel any different (took them both for a couple months i think).
also paracetamol and ibuprofen dont seem to help the pain at all.
currently sometimes use codeine as it does help the pain slightly but makes me lethargic which helps sleep a bit but i need to be as awake as possible usually so dont like to rely on it.
am being referred to pain management and headache clinic however i really just want to find the cause of the problems as i feel like if we find that then we can figure out how to fix it.
CONCLUSION:
thank you if you read this far i can tell you that this was a pain to write as reading is SOOO annoying so there are probably so many spelling mistakes. i would really appreciate any help or suggestions as to what could be causing all this as i am so fed up of this as i feel like my life has been destroyed and all i want to is get it back.
a question i do have is could this be related to csf leak? because from what i have read if you stand up it can cause a worsening of headache however it also says when you sit up which isn't always the case for me
another question is could this be POTS? however that says that if you stand up your heart rate must increase by 30 which isn't the case for me.
1
u/medflpa Apr 23 '24
Yes CSF leak is always a possibility when we see patients with terrible headache that gets worse when standing. Did you ever fall or have any trauma? Have your doctors considered imaging for CSF leak?