Intracranial Hypertension Patient Q&A

[@riderbandrocks2012]

I found out I had IIH within the past year and it scared the hell out of me I'm so glad to know I'm not alone

[@HealingWithRachael]

You definitely aren't alone!

[@tiahardwick9563]

You’re not alone... medications aren’t working for me now so my next step maybe surgery. It’s been almost 3 years now since my diagnosis.

[@veronicareynolds372]

@@tiahardwick9563 Sorry you're going through this. I'm not sure if I have this. Does drinking coffee help?

[@AudreyWilliams-w3p]

I was dx in july.

[@Alitouch]

I just found out I have it also

[@MR-lc4wb]

I was diagnosed with IIH some years ago, I had started a diet and began to eat lots of veggies. My vision became super blurry, I could hear my whooshing heartbeat and the headaches were horrible. When it got worse and I started having neon and shaky vision I went for an eye exam (thinking it was eye issues) and was told my optic nerves were swollen and was referred to an ophthalmologist. When he examined me he sent me straight to the ER with documents and my eye xrays explaining I had papilledema. I got a spinal tap that was painful but immediately effective! The pain, pressure, vision issues all went away. After days in the hospital as they ruled out tumors or underlying conditions I was told I have IIH. The neurologist put me on a series of diuretics that made me feel horrible and some even gave me allergies but he did advise that I lose weight and avoid foods that have too much vitamin A, he said it increased the amount of spinal fluid. I didn't take the diuretics for long since they made me feel horrible and I opted not to go for surgery. It took a while and I had to do a lot of follow ups and get another spinal tap but thank God that the symptoms stopped. I still watch my vitamin A and sodium intake since I notice slight vision issues if I'm not careful. Everyone has a different experience since we are all different, so please don't take this as medical advice, what worked for others definitely didn't work for me. Please take care and don't lose faith, you are not alone in this and always remember that God has a purpose for everything that happens in our lives :)

[@KHUSHSABESTIEN]

How much time it took you to get recovered as I am also suffering...

[@KHUSHSABESTIEN]

How much time it took you to get recovered as I am also suffering...

[@MR-lc4wb]

@@KHUSHSABESTIEN Sadly it hasn't gone away, but for me, when I'm careful on keeping my weight down and managing my intake of vitamin A my symptoms are minimal. Speak with your doctor to make sure what I am doing won't have a negative impact on you. God bless!

[@masonhausmann6935]

How did u get your symptoms to stop

[@MR-lc4wb]

@@masonhausmann6935 Well, they don't completely go away. I was first diagnosed in 2013 and have had to get 3 spinal taps since then. They have been maybe 3 years apart and I cannot tell exactly what caused them. Since diagnosis I've been careful to see what foods trigger my headaches- sometimes eating too many greens or when I've drank too much water (over 5 glasses a day), sometimes high sodium intake triggers my symptoms. This year I've had other health issues that gave me horrible headaches and extremely high pressure in my head. I had to go in for a spinal tap and my neurologist currently has me on Trokendi. I've been on it for some months but am hoping to get my other health issues in order so I can leave this medication soon. Talk to your doctor if you're also going through this and God bless you and give you strength because sometimes it can be very difficult to cope with all this.

[@SeaCinemas]

This is literally hours of research and good/bad doctors appointment experience in 14 minutes!

[@HealingWithRachael]

I am glad it was helpful!! :)

[@Sara-world]

Couldn't agree more.

[@ellaudeozo6817]

I went for a routine eye appointment as I had had blurred vision, had a emergency referral to my eye hospital as My optician suspected papilledema, I was in the hospital for 4 days getting multiple lumper punctures ( 2 failed ) The pressure in my head was 40 they managed to drain to 20, I’m glad I saw this video, due to covid I was in hospital alone thinking the worst case (brain tumour) turns out I have IIH with grade 1 papilledema, I was sent home with nothing but a low sodium diet, the spinal tap really helped ( hurt like hell) but onwards and upwards! ❤️

[@Psychiatry.321]

did your vision back to normally or at least the blurred vision gone. i hope you are healthy

[@ellaudeozo6817]

@@Psychiatry.321 hi, I went from grade 1 to a grade 4 in 2 months, so I’m now on diamox, my vision is comprised, so I wear glasses now! My pressure has stayed low for awhile but because it was so high for so long I have damage to my eyes x

[@Psychiatry.321]

@@ellaudeozo6817 God bless I hope you recover soon or at least Once you feel stable seek advices from eye doctor to do a LASIK procedure to back to normal.

[@bekah7145]

This is the exact same thing that happened to me last July, it was scary being in the hospital alone due to covid. Ever since I’ve had the two lumber punctures I’ve had palpitations and shortness of breath when standing or changing positions, I’ve been on acetazolamide ever since. Still have symptoms and PT in my ear too.

[@jenaemyers9399]

WOW!! I am blown away that they didn't immediately start you on meds to keep your pressure down to prevent your condition from worsening, if not possibly even improving it. My starting condition is about the same as your starting condition (my pressure was less though) and my doctors immediately started treating me. I routinely (monthly) see a neurologist and an optho-neurologist that track my symptoms/progress. I am new in my diagnosis but the urgency in which my doctors took action surprises me that your doctors did not give you the same consideration. My neurologist said IIH is just barely below a neurological emergency.

[@katiemcilwaine51]

I was diagnosed with this last week, i was in hospital and was so shocked to know

[@puny5417]

Me room scary. I’m Trying to learn more about it.

[@hanieletsantos3687]

Hi how are you doing? May i ask what are your symptoms?

[@katiemcilwaine51]

@@hanieletsantos3687 well after all this time ive had around 80 lumbar puncture attempts. about 20 successful and am still in and out of hospital with symptoms as i find the acetazolomide ( the chalky type available in northern ireland) impossible to take

[@SilenceInTheBliss]

You're a really good communicator...very engaging and intelligent. I could see you -- easily -- as a doctor.

[@HealingWithRachael]

Thank you so much!

[@TheTwtebrd]

I agree ❤

[@destinyashbaugh8863]

I just recently got diagnosed with intracranial hypertension, I had went to get my eyes examined for new glasses, and they found swelling on my optic nerve in my right eye. I had always had really bad headache, and started having seizures my sophomore year of high school. And they could never figure out why. I just recently went in to get my first spinal tap, and that was Monday and my pressure was 430. After that, yesterday my doctor scheduled an emergency blood patch, and I’m now home recovering. I still have a slight headache, and I’m worried I’ll have to go back for another blood patch... but all we can do is hope and pray! I love watching your video they are so helpful!

[@HealingWithRachael]

Destiny, I'm so sorry to hear you have intracranial hypertension, but I'm glad you finally have an answer. I hope they are able to find a treatment that will help your symptoms!

[@destinyashbaugh8863]

I read your story originally on the internet, and found your KZbin. Did you still have a very very very light headache after your first blood patch?

[@El_Superhombre_Blanco]

Did you have intracranial hypertension or intracranial hypotension? I only thought they gave blood patches for intracranial hypotension. How are you doing now?

[@Sara-world]

@@El_Superhombre_Blanco I thought they only did patches for intracranial hypotension as well. Based on my headache and pressure feeling I'm thinking I have cranial hypertension.

[@isabellacampusano1499]

Only a few minutes into your video and I started to cry. I was recently diagnosed with IIH back in December and still can’t believe I have it. I am a single mom and thought that with this new information this would shorten my life and time with my son. The doctor who told me I had IIH didn’t even take the time to explain to me what this meant and honestly didn’t even know that it existed. I’m glad that I came across your video because I still don’t know how to wrap my head around all of this. Thank you for doing this video ♥️

[@veronicareynolds372]

I hope you're doing better. I am not sure if I have this but my symptoms are worst when upright. Does drinking coffee help? Is it worse lying down or upright?

[@jenaemyers9399]

Same here

[@carlees.8343]

Scared me too and I feared leaving my kids motherless 😢

[@EC-yd9yv]

🌺🙏✨

[@mphomalepe7049]

Hey dear how are you now

[@azimlikz3431]

I am 19 years old. I am not overweight . I am so thin .I have papilledema . I am so scared 🙁 . I have one lumbar puncture . Your video feels me good.😌 I feel I am not alone . Thank u 🌸

[@AudreyWilliams-w3p]

Thanks for sharing! Prayers for your continuing healing.

[@xsublimexgirl]

I have been to doctors for IIH for over a year now and read everything I can about it, but this video has taught me way more than either doctors or articles! Thank you for sharing.

[@SirNancelot]

I got diagnosed last spring. After my lumbar puncture, I felt so much relief. When they started me on Diamox, honestly, I felt like I got my life back! Mine is secondary to systemic lupus. Thanks for making these videos! It took me six months to get a diagnosis even with initial papilledema. More awareness is needed! 💕

[@HealingWithRachael]

I definitely agree it needs more awareness! I'm glad they found out about what was going on and that the diamox helps. Wishing you the best in your journey

[@ohrainydays7714]

I just turned 17 and I was diagnosed with IIH last year. It’s very scary but I’m glad I’m not alone!

[@HealingWithRachael]

You definitely aren't alone! ❤️️

[@mettejensen8653]

The biggest game changer for my intracranial hypertension and pressure was hands down hyigh dosages of B12 both frequent injections and methylcobalamin with high dosages of methylfolate and enough potassium both from foods, electrolyte powder and potassium citrate. I also have CCI issues and a neck stenosis

[@YahyaMarei]

My headaches were gentle, comes once every couple of days. For the past 2 months, I was powerless to handle it anymore . I believed maybe my eye prescription. The doctor informed me the right eye nerves is abnormal and it appears that there is something pressure the nerves. I did Ct scan, as I can not do MRI. they spotted out the IIH problem. Presently, I am waiting for the specialist to advise me the next move. Kinda, glad it is not Cancer although a bit down to deal with this matter. I pray to all full recovery.

[@ronixtrixieflame9236]

I recently got diagnosed with IIH on December 14 and I am 5 days in to my new medication and I am getting information as much as I can about it . you sharing your story helps a lot to under standing on what IIH is Thank you

[@sylviahill7652]

1st…well done! You have covered so much with clarity. This video has assisted me with making a decision about treatment options…thank you! Remain well!

[@cwal9349]

I was diagnosed back in the late 90's. They didn't know much and I read everything I could find. What I've noticed with this condition is that lemon elevates the pressure and I've gone up and down with my weight. With the weight loss. I did feel relief and could drink more than 1 glass of lemonade. Thats been my journey! This young lady explains well! Chiropractics helped tremendously at the base of my skull. I dont remember the medical term but wherever the cerebral fluid empties could be "clogged" because of "a kink". Please look into it for yourself. I am not a doctor. Just sharing some of what I know from my journey.

[@mettejensen8653]

lemon does nothing bad to my pressure

[@andidejager3898]

I was diagnosed with migraines for 7 years and 5 days ago I had a spinal tap just to tick all the boxes before paying for aimovig and it turns out I have intracranial hypertension. I'm shook.

[@HealingWithRachael]

I'm glad to hear you finally have an answer. Wishing you the best with treatment!

[@micheleketchum3701]

I’m actually looking this up for a cousin. I just wanted to say I am so sorry that you are going through this. Just try to find the joy in every day. I just want to say God bless you

[@HealingWithRachael]

Thank you for your kind message, Michele! That's very thoughtful of you to do some research for your cousin. Wishing you and your cousin all the best! :)

[@AStupidLittleHead]

Thanks for explaining these issues in such a down to earth way. I've been having some of these symptoms but have not been diagnosed yet.

[@HealingWithRachael]

Good luck with everything, Ed!

[@amandakilborn6221]

Thank you for sharing your story. I recently got diagnosed with IIH a little over a week ago and it’s a scary experience. I work at a bank so I had to just go on short term disability because it was so hard to function.

[@Mani-period]

I’m crying bc I really, literally thought I was going to DIE! I’m ok now but this was so scary to experience full blown. I experienced numbness and tingling in my hands and feet and all the other symptoms. I sat in the dark and cried 90% of the time. I lost vision in my eye and had to wear a patch, I also had to stop driving for about two months bc I couldn’t see well AT ALL LOL. I wouldn’t wish this in anyone. I’m working on losing weight now. Good luck y’all!

[@Brittany-gl3us]

I'm going threw the same thing how are you feeling now?

[@InopVirtualPilot]

I had a shunt fitted just over a month ago. I really was scared before the surgery but found it to be nothing to worry about. I had the pressure changed yesterday as I kept having headaches and now I feel better and now able to get on the floor and play with my children! Hopefully it stays that way now. It amazes me what they are capable of doing now. Glad you are ok, great video. Take care, from the UK

[@InopVirtualPilot]

@@chasehenson2176 so far so good, still having checkups often, something was mentioned about the pressure needs raising slightly. I think it's just finding the happy medium with a little trial and error 😂 Cannot fault the team at NHS QE Birmingham, absolutely amazing support

[@InopVirtualPilot]

@@chasehenson2176 yes I have papilloedema, only in one eye strangely. They diagnosed me to have IIH. Before surgery, I managed to hemorrhage the blood vessels in the back of the eye and was left with spider like shapes in my vision. Only meds I take are blood pressure pills, seems to have rocketed up recently But other than that I don't need meds for the shunt.

[@moominmcbeans9210]

A very informative and direct Q&A. You know more than the nurses who were treating me in hospital. My neurologist is clueless but then again being in England the NHS is over stretched. I didn't even know venus sinus was a thing until you mentioned it so thank you!

[@HealingWithRachael]

I'm glad to hear it was helpful! It's unfortunate how little awareness there is about IH among doctors. Hopefully that will change one day! Good luck with your journey

[@mettejensen8653]

I have never had a spinal tap and also don't want to- too risky! I just KNOW, I have this problem, and that is good enough for me

[@TyasAlfisa]

thanks for the sharing Rachel. i'm on the medication, after got DSA on June, i was diagnosed with IIH and sigmoid sinus diverticulum after 1 year figuring it out starting from ENT from one hospital to other hospitals. now been 2 months with topiramate with the right neuro doctor

[@TheTwtebrd]

I believe I got this from the #2 moderna covid vaccine. Tried to deal with it for 3 months and recently went to hospital and ct scan done and put on a regimen of steroids. Now have to see eye doc and also get an mri in Nov. Worst thing I have ever experienced. Hope my comment won't be pulled just wanted to thank you for the really informative video. 🥰

[@FocusedOnTheVibe]

Thank you so much for the information. I was recently diagnosed with Intracranial hypertension, papilledema and I have been wondering what that swooshing sound in my ear. I finally have the medical term to ask my physician about. I have had this swooshing in my ear for many years. Thank you for sharing

[@Americangirlsp75]

I was just sent to the ER by my regular doctor for urgent lumbar puncture…it was a failed one sadly but was able to get pressure taking, they were supposed to take 31ml of spinal fluid but only got 2ml 🤷‍♀️..but I was diagnosed with IIH and just waiting to be seen by a neurologist, but let me say, I found your video extremely informative!!! Thank you for sharing 🥰

[@hollypink5330]

Just got diagnosed yesterday! Very scary xo

[@olenachernykh8269]

My husband has the same problem and symptoms, but for the second year we cannot find how to do the operation. Glad you managed to heal.

[@allendabold5611]

thank you so much for your information Rachel.I am 58 years old and suffered from this since childhood you've given me a lot of information and a good direction to solve this problem thank you very much

[@ksid4067]

I'm 15 years old and I have IIH also, but it was very confusing for doctors because I am not overweight and I am so young, thankfully my 1500mg of Diamox is helping a lot and I have had no seizures. I've only had one lumbar puncture and things are going well! I hope you're doing well!

[@HealingWithRachael]

I'm so glad to hear the diamox is helping you!

[@ksid4067]

@@HealingWithRachael Thankyou! Hopefully, it's only up from here. I hope you are well.

[@Vaishnavi-ot6br]

same! Is your vision back to normal now??

[@hebahalabhoul9848]

Thank you so much for the video.. Made it clear fo me.. From 🇰🇼 with love.

[@denisetyner877]

Thank you for your information on IIH I just found out I have IIH and have been referred to an neurologist and I have never heard of this until now I'm glad I saw this video.

[@HealingWithRachael]

Best of luck with everything, Denise! :)

[@rachelguyah1511]

Fellow Rachel here, so relieved to see your journey. It echoes mine. Seeking formal Dx for hypermobile Ehlers Danlos but I fit most criteria anyways. I have HX of passing out and suicidal migraines at high altitudes. My neck is crazy hypermobile. It scared even the xray tech. I'm now seeking dx for intracranial hypertension ... Harder than I realized. Sigh.

[@sara21ram]

I was diagnosed in 2008. Good information. Nice knowing I'm not alone 😊

[@HealingWithRachael]

You definitely are not alone!

[@Hufflebear]

Have had daily "migraine" for 7 years. Mayo clinic says my mri/mra fit having iih. I just went for a spinal tap at a local hospital as and they forgot to get my pressure...so now I have to get another one very frustrating. This was a good video thank you

[@HananIbrahim-cb3wb]

How are u now

[@TrueCrimePsychic]

I live with this... I have severe anemia, overweight and neck injuries from the military that it can be secondary to... I do have pappalidema which is how I found out in 2019

[@tinker608]

I just had my first spinal tap... I told the doctors for 6 years that I wasn't feeling well and they ran test after test that came back normal. But then the symptoms worse and that's how we found IIH. They say it's because of my weight, but I believe it's because of the head injuries I received 6 years ago. Which is when all my symptoms started.

[@lisacrumley4979]

I have IIH as well and it took them many years to get the diagnosis. I also have Adhesive Arachnoiditis along with Traverse Stenosis and a Daft fistula. My neurosurgeon believes my AA is the cause for IH. More things need to be done. I have no paps as well. My teenage daughter has severe migraines is at high risk for this disease they told me. Thank you so much for sharing your video💛

[@HealingWithRachael]

Wishing you all the best on your journey, LIsa! 💚

[@garryarganis5801]

i started having headaches and migraines when i was around 20 whatever test i did didnt show anything one day i find out about it on a normal eyes check up i had on my doctor i really feel it gets worst and worst as the years go by i cant bend over, look up, walk downhills or uphills i cant even walk like a normal person more than 200 feet before i get migraine there is literally 0 physical activities whatsoever if i sit and wanna look behind me i have to stand and turn my entire body, the only thing that stops the pain is if i step into the water and just sit there standing without doing anything, no swimming just stand in water. and the water must be cold not warm. i have also an issue with my kidneys and i cant take a more "heavy" medication treatment even if i could i dont know if i would plus i have hearing loss 30 % R ear 70 % L ear and the pressure shuts down my "good" ear thus not hearing anything for like a month before it comes back to its normal . i read about a girl who had level 1 diabetes and went on and on, on how her life changed having to deal with a chronic disease, well , she knows shit :) on to more regular issues i have diabetes and blood pressure both passed to me from my parents, my mother have half the issues i have and my father the other half and they made me to have everything :) thanks for making this video and all the other related videos sorry for the story of my life , with covid and all that shit i had to type it somewhere and u drew the shortest straw.

[@amalelmardi8613]

I was diagnosed last week with IIH which scared the hell out of me, I was given medication and I’m scheduled to get a spinal this week. I hope everything works fine

[@mphomalepe7049]

Hey how are you now

[@Digiphex]

Did you have pain down your armpits and inner arms?

[@sonnenblume777]

I also have IIH... I know it scince September 2022. Thank you for your Videos! (Sorry, my english isnt so good, im from germany)

[@maryamsiddiqa]

Bless you!

[@kaitimusprime]

Glad I’m not alone with this. I also have IH & Papilledema and have been trying to cut down on carbs since they store water. Found out about this a couple of years ago. I also hear the awful wooshing sound in my right ear almost all the damn time. Ugh.

[@Vaishnavi-ot6br]

kaitimus prime yeah my doctor asked me about the sound in my ears,it’s one of the symptoms

[@gabrielantunezjr5994]

Kaitimus, how are you doing? Did Papilledema cause vision issues ?

[@TeddyCrochet]

I also have EDS and am fused at C1-C2. Looking back now, I'm pretty sure my childhood neurologist missed IIH (well, and all the others over the years) but the Topamax i've been on for 22 years has been a bandaid for treating my pressure issues. My symptoms aligned with all of the "typical" IIH findings. My problem now is that we are pretty sure I have a CSF leak. Probably a result of the IIH, or EDS. So now, i'm likely in low pressure. I leak clear fluid from my nose daily. I find my IV infusions help some (when i stay hydrated), and i'm going to find out about getting off Topamax now that I know it's been affecting my pressure all this time! It's just honestly overwhelming thinking about all of it because as you know, nothing is ever simple. With Covid i've been avoiding traveling but if i want to get to the bottom of this i'll have to get back to my neurosurgeon and see what my options are. Sorry to ramble on but curious to know- have you heard of others, especially EDS'ers, or yourself had issues with the back and forth business with high and low pressure as well as CSF leaks in correlation to IIH? Thanks

[@HealingWithRachael]

It is definitely possible to go back and forth between high and low pressure. That makes it really complicated to treat. I am going to be starting prolotherapy/neck curve correction at Caring Medical this week, and my doctor believes that high pressure is often causes by cervical instability and can be resolved with these treatments. I'm very hopeful about it and will be sharing my experience there here on KZbin. I hope you find relief and answers! Wishing you the best in your journey!

[@Sara-world]

@@HealingWithRachael do you think the prolotherapy helped with your intracranial hypertension or the Stent surgery you had?

[@hannahbolli9917]

Such a good awareness video Rachael! 💚💙

[@HealingWithRachael]

Thank you Hannah 💚💙

[@cassidyclaybrook1032]

I came across this video in my recommendations. You may not see this comment but I also have Idiopathic Intracranial Hypertension. I was diagnosed in January 2018 by means of an eye exam. I had papilledema but the doctor told me that I had a brain tumor. Obviously I got a second opinion and had the lumbar puncture. My opening pressure was 34. The lumbar puncture was horrendous and it took about 90 minutes for the doctor to drain off the excess fluid. I had suffered with horrible headaches for years. However, in December 2017, I had lower lumbar surgery to remove several spinal discs that were beginning to fuse together. I nearly died during the surgery. A week after the surgery, my IIH symptoms presented. I had the whooshing in the ears in time to my heart beat, I described this as hearing my heart beating in my ears constantly, and I was so dizzy and had a lot of neck pain. My parents and I were never able to determine whether the surgery and the presentation of symptoms were related but I think that they were. I currently take Diamox in an effort to control the disease. My doctor wanted to do a stent surgery on me but I refused at the time due to how unwell I was. In recent years, I suspect that I have Ehlers Danlos Syndrome as well. My spine surgeon told me that I had overly flexible joints when he was doing a neurological exam on me before surgery. I also have chronic tachycardia, which didn't present itself until after surgery. It is such a relief to know that I am not alone with this disease. When I tell people what I have, most have never heard of it and think that I am crazy or making this disease up. I have had doctors tell me that my disease is just headaches. It is so much more than just headaches. It is having a reduced quality of life because moving around too much makes you feel horrible.

[@HealingWithRachael]

You definitely aren't alone. ❤️️ Sending love and wishing you the best in your journey!

[@kristinwallace6551]

I have pretty much all of these symptoms but I don't know if its due to CCI, possible Chiari (haven't had a EDS aware NS look at my MRIs and my dad had Chiari that was missed by 4 NS, also haven't had an upright MRI.) I also am getting my tethered cord surgery soon so we don't know if these headaches are caused by that either. The problem with EDS is that we have so many co conditions that its hard to tell what symptoms are from what! Great informative video!

[@GewoonelsJustels]

I had a brain pressure of 40 without any headaches (this should be beyween 5 and 15). This caused me to lose most of my eyesight in both eyes in the span of 2 1/2 weeks. The neurologists here in Amsterdam had never seen such a thing. Now, 3 years later I am still trying to come to terms with it all. The loss of my eyesight is unfortunately permanent..

[@aliciatorres1642]

About a month ago I went to a ophthalmologist just to get my vision checked. They asked to dilate my eyes and they seen that both my optic nerves were swollen. I got a MRI and had no brain tumor, so the ophthalmologist diagnosed me with IIH and so did 2 neurologists. I get a spinal tap tomorrow and I’m really nervous.

[@alikajones1109]

How was the spinal tap ?

[@jessicaowens4411]

Hi Alicia, currently going through the same exact thing. Wondering how everything went?

[@PlainAndChelsea]

How are you doing now?

[@Stellersyd]

Wow another spoonie as I live and breathe.. I was 14 when diagnosed

[@anastasiastacey6836]

This video is super informative helps ease my anxiety.. I was told I had bilateral papilleodema at my yearly eye check up, however you spell it. I’m also 4 months pregnant and just had my MRI/MRV today, hopefully get some good news. Thank you 🙏

[@mphomalepe7049]

How are you now

[@anastasiastacey6836]

@@mphomalepe7049 I’m doing 100% better. I had an LP shortly after I did that comment and opening pressure was 39 drained some fluid during my last pregnancy. Currently pregnant again and have had zero issues. I did have stenosis in my valves on my Mrv show up but other than that it was fine. Still suffer from head aches and migraines but maintaining a healthy diet and staying hydrated helps. Exercising too. On no medication

[@pinkglitter122]

I just found out I have this condition ;( thank you for your video!! I am not overweight lol Inhave struggled for alot of years of migraines and the past 6 months woww it was crazy .

[@HealingWithRachael]

Best of luck with your new diagnosis, you aren't alone!

[@virginiadebva4311]

Thank you this is so helpful

[@triciamacias1448]

I have iih found out about gone go on for 3 years ditto happy that I am not alone

[@HealingWithRachael]

You definitely aren’t alone!

[@nicoledelprete4835]

Great video, I live with PTC since 2016 and you explaines very well all the situation.

[@HealingWithRachael]

Thank you! Wishing you the best 💙💚

[@muhamedtouray1653]

I was diagnosed 3 years ago I don’t pretty much have the symptoms anymore. But my vision is getting worse and diamox is really taking a toll on me. I am fatigued all the time. I have never had a spinal tap. They just went by the swelling of my optic nerve

[@username11368]

What's your diamond dose?

[@muhamedtouray1653]

@@username11368 2000mg

[@anneg8319]

Perhaps that should read 200mg? 500mg is what I take. It will not work well if your bloodwork Co2 is under 21. Spinal taps for EDS should be only as very very last resort because that area may not heal well and can leave a leak.

[@IsadellaEstelPolanco]

I just got home from the hospital after being admitted for days and I was diagnosed with this. Today I had the lumbar spine tap. Not a pleasant experience. But I had a lot of these symptoms which is why I went to the ER. I have and still get numbness in my hands and at first they thought it was MS. But when I saw the Neurologist he told me that he thinks is this condition. My pressure was a 29.

[@teresaraisanen284]

Cervical instability is one cause of Intracranial hypertension

[@phoebejohnston931]

I have IIH and unfortunately I’ve lost peripheral vision on both sides this condition sucks we need a cure 😞

[@HealingWithRachael]

I’m so sorry to hear that! I 100% agree we need a cure.

[@savitritakle1046]

Hi even j have gone through surgery 1year ago.. lost peripheral vision but still have haze in my eyes do you also face this now..

[@miabbu]

How are you now?

[@mphomalepe7049]

How are you now

[@jeanettespiteri7180]

Hi, thanks for sharing so much of what you have learnt through your challenging journey. I suspect I have IIH alongside occipital neuralgia but in the UK I am getting very little support so I really need to fight my case with my GP. They tell me it's just a migraine, would you have any pointers that highlight the difference between the 2 types of pain? thanks!

[@HealingWithRachael]

Hi Jeanette! I'm sorry to hear you're struggling with those symptoms. Migraines and IH definitely have *many* cross-over symptoms, so it can be difficult to tell the difference. Some things that increase intracranial pressure are coughing, laughing, bending over, straining, laying down, etc. If your symptoms/pain worsen with that, then maybe IH would be worth looking into. I hope you find answers and help! ♥️

[@Sara-world]

@@HealingWithRachael on my tilt table test I started having a non epileptic seizure like attack on the way back down laying flat. I'm thinking I've had pots with Intracranial hypertension this whole time. I'm one of the lucky ones that gets these seizure like attacks and it's sucking the soul out of me not having concrete answers. So grateful for your channel guiding us to find answers.

[@reggiedodson3353]

There's a doctor down in Florida and the treatment is called Prolotherapy

[@James_David]

So descriptive of my symptoms and I’m a skinny young male. Have IH and don’t have papiladema. Was misdiagnosed because they only used eye measurements to check for IH. Thanks for the vid.

[@HealingWithRachael]

Wishing you the best!

[@mettejensen8653]

I have never used medicine for getting rid of fluid. Only supplements: Dandelion root , polyporus (very good), potassium citrate, bromelain, serrapeptase

[@mphomalepe7049]

How are u now

[@johngoos9585]

You need to become a Doctor! Well done!

[@HealingWithRachael]

Thank you!

[@allielessard4658]

I also found out that I have IIH a couple months back around June. Any tips on losing weight would be greatly appreciated!!!😊thank you

[@bekah7145]

Intermittent fasting is good for weight loss, all the best

[@tomithytries]

Thank you so much for making this video! After covid I have had horrible issues like this and I may be getting closer to what’s going on. Thank you!

[@Franchon8]

Thank you.

[@rachelellebaker]

I love this video so much!! You did such a great job explaining the condition, and it’s great to see others who struggle with this condition share their experiences 💛 (Also, love your name lol)

[@HealingWithRachael]

Thank you so much Rachel!! You have an awesome name too 😉

[@TrueCrimePsychic]

I've seen outsole out there who have been able to reverse this so fingers crossed for us all

[@scnager1]

Ultrasound of the optic nerve is another way to diagnose it. If the diameter is greater than 5 mm, you have intercranial hypertension.

[@offensive_name6123]

I think I've got this Im going to get checked

[@JayWalker-s5h]

I am a man and I have this. I think more man do have this but doctors say it is migraines. With my journey I have found that many doctors just don’t know about . I went on a cruise and past out and they sent me to the er that is part of the University of Texas med school and me telling them about having it and they kept saying it’s low. I figured out they talking about my blood pressure.

[@Carolina_girl86]

I was told I have IIH, but that’s not what it is. This what I’m dealing with came from ending an anxiety medication I was on to abruptly in June 2022. Mine isn’t even a headache, it’s chronic intense pressure and pulsating on my brain. I was 154 lbs when this first started and am now 235 from barely being able to sit up the past 19 months to do any type of exercise.

[@taraspiritwhisperer]

I was diagnosed yesterday my sister has had it for 25 years. I have had pulse tinnitus for years. Extremely bad headaches at the base of my head for years I wake up with them. I have find the only thing that helps the headaches is aspirin. I thought because it thins my blood. Big hugs

[@loveKG26]

I had the worst headaches after the first 7 years of milder ones and seizures mainly in my sleep. After the first 7 years it got worse pressure built up and I got dizzy and had worsening headaches. I almost died I think with my ventricles being so large compared to my brain is how the DR explained it. That was after like 3 years after the pressure and dizziness came. The steroids helped give me some good years with my son. Now I can’t sleep I wake choking and have drop seizures with my family ignorant to all main points and serious points related to such.

[@natanyarosee]

I have both papilledema and EDS

[@GRRRRAAAAAAHHHH]

I’m 14 and just got diagnosed

[@janiebabin9693]

I got diagnosed in January. I was wondering, on a scale of 1-10 how painful was the spinal tap? And did you feel pain or did you mostly feel pressure?

[@HealingWithRachael]

Hi Janie! For me, I'd say maybe about a 5 for the pain of the actual spinal tap. I've had 6 of them. If you get someone good, the actual spinal tap shouldn't be too bad at all! I've ended up with CSF leaks after a few of my spinal taps and that has been much worse than the actual procedure itself. I'd recommend making sure they're using CT guidance for the LP and laying down as long as possible after to try to prevent a CSF leak. Good luck, you've got this!

[@JupiterLatte]

It depends. I got mine done in the ER when I got my diagnosis, but mine was a disaster. They had to feel by hand, the first guy tried a couple times and wound up getting a more experienced doctor to help, but he couldn't get it either. It was mostly jolting pain down my hip when they hit a nerve and a little pressure/pain in the back of my stomach for some reason? They kept trying but I had to ask them to stop because it hurt too much HOWEVER when they referred me to the neurologist for a PROPER lumbar puncture, they said they have a machine to help locate the exact spot. It has a high performance rate, it's one and done, easy and efficient. They tried so hard to reassure me, but honestly I'm never letting anyone stick a needle in my spine again lol

[@mrsjnick]

I just had a spinal tap done to help with diagnosis. My doc recommended getting it done in a radiology dept, rather than by a neurologist since the radiologists can use extra tools to be more accurate (and less painful). I just had it done that way and the procedure itself was pretty painless - just some weird feeling pressure. Unfortunately, my body doesn’t seem to be healing up as quickly as expected, so I’m having these awful spinal headaches due to most likely a CSF leak afterward. I’ll be going back for a blood patch to close it up.

[@veronicareynolds372]

@@mrsjnick I been having high pressure headaches. They're worst when I'm upright. Could this lumbar puncture make things worst for me?

[@reggiedodson3353]

From most research a lot of times it could be in your cervical spine. The ligaments your neck they have a lot of information about this causing intracranial hypertension!

[@abbymulvey6226]

I just turned 18 and was diagnosed with this a week ago, your video has calmed me down and brought me so much comfort. I have been freaking out. I have been suffering for almost 5 years now and am just glad to finally have a diagnosis.

[@HealingWithRachael]

Wishing you all the best, Abby! You certainly aren't alone in this! ♥️

[@mphomalepe7049]

How are you now

[@Mushwomb.mp3]

Hi just wondering what your symptoms were and what your headaches felt like & if they were relieved by standing up or laying down??

[@tirevama2196]

I was diagnosed about four month ago and at the beginning I didn’t take it seriously until I realised how dangerous it is like they were looking after me so well and just a day after realising I had it, I did the lumbar puncture.

[@laurasands9987]

I was diagnosed with IIH and never had headaches but I did have tinnitus and vision problems. They were astounded after the lumbar puncture/spinal tap to see how much excess fluid I was tolerating without headaches. It actually just scared me more because now I don’t have an “early warning system” if I can’t make an appointment

[@laurasands9987]

Susan M. Strayer That sounds awful to have to insist on a CT scan. I hope the Diamox helps and you have minimal side effects. I was very lucky that I had a doctor that had seen it once before so he referred me to a neurologist and asked me to get my eyes checked out to rule out any eye problems. My optic nerves were so swollen the optometrist sent me straight to the emergency room. Try and stay positive and do what you can ❤️

[@Vaishnavi-ot6br]

@@laurasands9987 how are your eyes now and did u have any symptoms like tiny little flashing lights while suddenly moving your sight, black shadows or floaters in your eye ?? Pls do reply

[@laurasands9987]

I can’t really remember the little details of my vision problems but by the time I was diagnosed my peripheral vision was pretty much gone.

[@Vaishnavi-ot6br]

@@laurasands9987 is your vision back to normal now?? And how long did it take to get your vision better

[@laurasands9987]

a random weirdo My vision improved immediately after the lumbar puncture but I might have done permanent damage to the optic nerves, that’s yet to be determined.

[@melaniemartinez3700]

Hi there, thanks so much for this video! I just got diagnosed recently and this video was really helpful and informative. Wondering if you’d recommend your doctor in NY and if you could share their info! Thanks so much!!

[@alyshasarah]

I went to specsavers last week to get tested to get contacts and they did an eye health check and found that my optic nerve was raised in my right eye, and booked me to see an eye specialist urgently, which i’m going to that appointment tomrorow, I’ve read up on this IIH and found your video, and I literally get all these symptoms, I’ve had headaches for years and bad vision for about 3 years now which has gotten worse and recent ringing and whooshing in my right ear. I am positive I have this, but will go to this specialist appointment tomorrow and see what they find. I’m very anxious

[@PlainAndChelsea]

How are you now? I hope all is well!

[@sinfullyblondie]

very smart Young lady and i have Pseudotumor for 35* Years and i have had 37 Shunts 28 lP Shunts and 9 Vp Shunts.. I had them take mine out and i was fine for 7 years but it is back.. and i Pray You do not have to go thru that. do You have Low Laying Tonsils as well ? or a Arachnoid cyst. God Bless You Sweetheart.

[@HananIbrahim-cb3wb]

How are u now

[@XLCheerleadersXL555]

I just got diagnosed with this by my eye doctor after being told by multiple drs I just had “migraines” Monday I go see my DR and I’m so so nervous I know nothing about it but just want my pain to go away.

[@mphomalepe7049]

How are you now

[@shawnaspenst1678]

Love your information! I swear I just seen you in Pendleton, OR! Lol..you have a twin with the same voice🤣😂

[@darkbluematter1753]

Mayo...they missed my POTS and ineffective esophageal motility. Both of which have progressed significantly now. A rheumatologist recently told me I should go to Mayo to investigate the cause of my dysautonomia. I just wanted to cry. Thanks for this video. I'm going to show it to my mom who has some symptoms of IIH including pulsatile tinnitus, chronic headaches and an empty sella. Doctors don't want to do a spinal tap on her either. So frustrating...

[@HealingWithRachael]

I’m sorry to hear that 😢 I hope you both find answers and help soon!

[@horanbenjamin]

My wife has been diagnosed for a while now her mother had it as well and had a shunt it didn't work then she had a stint and it seems to have worked fairly well hopfully my wife can lose some weight and that will help but it is hard as her meds are crap and she gets head ache after exercise thanks for sharing your story

[@HealingWithRachael]

I'm really sorry to hear your wife is struggling with intracranial hypertension too. It is a tough journey! She isn't alone. Wishing your family the best through it all :)

[@natanyarosee]

I’m 20 and got this at 19 and diagnosed at 20. My bmi is considered overweight, but my weight is average for my height. I tried diamox and lasix but I’m still losing vision so I’m getting a VP shunt soon.

[@HananIbrahim-cb3wb]

How are u now

[@playlistaccount]

Hey, I had this come out of nowhere 10 days ago and it was sudden and most intense when it came on, it has been a constant milder pain now for those last 10 days but still incredibly annoying and uncomfortable. My right eyelid has been mildly spasming exactly around the same time too. I have read opticians can spot this. I also have high blood pressure in general and believe it has taken a toll on my cardiopulmonary areas as well. Does your relate to any other symptoms possibly pointing toward a generalised illness/systemic disorder? Thank you

[@cooperfreckles]

Do you know what the stent is made of? I am very allergic to almost every metal so was just wondering if I go the stent route?

[@blessedthebest8972]

A cause of intracranial hypertension is low iron levels. You could be severely anemic n doctors know they should check your iron before giving medications. Google it bc it's not discussed on KZbin.

[@loriza75]

Do you know if IIH is linked to Hypothyroidism?