Відео

So many of us are getting secondary health conditions (like strokes & heart attacks) or taking our lives because our pain isn’t being adequately treated anymore. As if fighting our illnesses isn’t enough we have to fight to stay alive only sleeping every 3rd day & eating every 5th day. I got adequate pain relief recently on hospice but only for 3 months & was able to eat & sleep every day- they dropped me. I know - mark my words I am gonna die very soon. 😢😢😢😢😢😢😢😢😢😢😢😢😢😢😢

I just had a LP for iih i hope that then end of my symptoms

I’m a male in my early 30’s I’ve just been diagnosed with it, I had an LP to relieve the pressure, my reading was 25.5ml just wonder how much pressure other ppl had?

So happy to know it’s others out their suffering with the same condition as me.

What Facebook group are you on I am new to this.

i've had a headache every day for 11 months (behind the eyes and on the right side) and i had my first lumbar puncture yesterday (pretty painful) so hopefully it gives some sort of results. thanks for sharing your experience. wish you all the best

Thank so much for videos thought I was the only 1 with these symptoms sometimes its quite bad

Hi I've been diagnosed with IIH 5months ago had 6lumber punches since that time. Seems like pressure coming sooner back. I'm on Acelazulamide 250mg thrice a day dont seems like its helping. Did tablets help you

I identify so much with you, I have also been diagnosed a few months ago, I am hopeful that soon I will improve. Do you still have the pulsatile tinnutus in your hear? I have that symptom and I despair a little.

Hi there hope you are doing fine by now and I too had lumbar puncture and my starting pressure is 23 and also I have early papeledima so neurosurgeon suggested diamox and topmirate for 2 months. Wheni searched in internet usage of diamox creates problem in kidney functioning is it true. Did u use diamox to control eye pressure. Thank you for your video and sharing ur experience.

Thankyou soo much for creating videos in regards to this. I feel somewhat better knowing there is other people out there like me with this condition. I just got diagnosed with this condition recently and I am 22. Its very challenging trying to deal with and i'm just trying to accept this all in because I found out about this recently after a Cat scan. Thanks a ton for sharing your journey.

Hi there. I know this video is old. I just had a lumbar puncture yesterday, and I have a headache do you have any advice? And the doctor says the headache shit last for more than two days afterwards, what do you think about that?

Hey I'm a new subscriber can you make videos on diet plans and how you lost weight and update about iih please

Sending you prayers! I have IH too and its awful yet by the strength and grace of the Lord we can endure! peacewithGod.net We were created to know God in a personal way-to have a relationship with Him, through His Son, Jesus Christ! Harvest.org/know-God/

O really love d story 👍👍 ua-cam.com/video/YQ0el6707NQ/v-deo.html

Do others get puffy eye lids with fluid built up under the eye lid?

Thank you for the last comment. I am in the same boat, I just got diagnosed but have no symptoms at all. I didn’t even know there was a problem until they did a routine eye exam and they saw the swelling behind my optic nerves. I am not waiting for an appointment with a neurologist. Thank you for making these videos

I love your positive video!!!! Im struggling with a high pressure migraine time with IIH. Its very new to me. Ive only had my neuro call me with the reaults and start me on topamax but ive been suffering with chronic mugraines with 9 years trying to get them sorted with no relief.

Hi I’m a new subscriber and was wondering if you’d make a new updated video on your condition living with IIH and how are you currently, what’s changed, etc?

Glad to see you back! Really hope you’re keeping well ❤️

I got diagnosed on Monday and got a lumbar a few hours ago and i really hope it will help because they were able to take 10ml of spinal fluid.

Does anyone get sick and have tremors also women who suffer do you get sicker around your period time and weird motion feelings in your head

Mam plz help me i have also diseases the IIH i cant control that moment plz tell somethink about this

I experienced the same thing check out my video

Ihave IIH to..and Ihave L.p.shunt sinse11months ago...Iam better now

I recently got diagnose with this condition. Im scared and overwhelmed. Like you said every doctor I have seen have said something abought my weight. On Wednesday i will be going to the neurologist and im just doing research ever since i found out I had this.

Im happy that im not alone with IIH , all doctor told me that I dont have a medical cure , coz no meds are working for me , even pain killers and I was losing memory ,hearing and my vision , I got a surgry but after my surgry I got worst , I shifted to herble medical they hope to cure me coz right know Im on herbl meds I stopped every thing coz I volunteered to test this path of medication so hopefully if this works, I can help all people the same have the same sickness that I got and girl if you want anyone to talk to ill be thier for you hope your going well you can email me any time you want (heba.alheba@hotmail.com) god bless you .

Hi. I don't know if you still check your UA-cam messages. But how are you feeling now? Is everything still ok? I probably have intracranial hypertension too. I still have some tests on August 7th (MRI, lombar puncture). I'm afraid of surgery. It's the last thing that I want. So I hope they will put me on medication, and that they will solve the problems. I'm also scared about this lombar punction I'm gonna have... I hate needles. Can you give me the names of all the medicines that actually helped you? I want to preserve my eyes. I don't want to go blind lol. Sorry for the mistakes I'm French.

I did one and it hurt so bad if I have to do it again I rather be asleep. I’m 5 days post and my head still hurts and I don’t get it. No medication is working.

I was diagnosed a few weeks ago. I haven’t had many symptoms. I’ve had little coloured dots at the bottom of my eyes but that’s it. I suffer from extreme anxiety and I’m completely panicking about this! It’s really good to know it’s common and people are fighting and winning this constantly!

No drugs have helped me. :(

I'm so happy to hear that you're feeling better!!! I had a lumbar puncture last Thursday; I hadn't had one since 2017. My pressure was 48. The anesthesiologist took it down to 21. I feel like a new woman. No pain in my head at all! It had been so bad for so long.,. I was depressed, having some bad thoughts now and then... And was trying the Aimovig shots. HORRIBLE side effects and they don't help IIH migraines. So when he called it at 48, I felt like I had won something! I knew the headaches would be fine for at least 6 months. Now if I can just wait another 2 months for the side effects of the Aimovig to wear off, I'll be great. You are so right about being your own advocate. If one doctor won't listen, see another. I'm sorry it took you so long to get sorted. Now that it's done, I hope you feel great for a long time. Nobody should have to live with this pain.

Hi... I was diagnosed 5 years ago (approximately... I lose track of time Lol) with IIH. My gp had been recommending a lumbar puncture for several years, but I was afraid. I finally agreed, and when they did it, my pressure was 58. The procedure was almost painless, and the relief was immediate. I had another done a year later and it was in the high 20s, which confirmed my diagnosis of IIH. That one was also easy. A year later, I had one that was very painful and not much help. That was in 2017. Last week, I had another one; the migraines were just unbearable. This one was different. I was lightly sedated, brought into a procedure room, and it just seemed to be a more serious thing than the others. I was thrilled that my pressure was 48, and they brought it down to 21. I haven't had a single headache of any kind since then. I was so afraid that it would just be in the 20s, and that I'd have to live with the headaches forever. I know that every case is different, but how often do you get lumbar punctures to relieve the pressure? I worry about getting too many, but I don't want to go with a shunt.

Hi! Did this drug reduce the tinnitus as well? Thanks!

Is everything still well?

Happy to hear that..

I am glad you say they can do under sedation. Im supposed to have a lumbar puncture but cant as i have allergies to local anaesthetic. My neurologist who i dont trust hasnt mentioned using sedation. He wants to do it with no anaesthetic via xray. Im so scared i will flinch and him hit my nerves. Will insist on sedation next i see him😀

I'm so sorry you've been getting the run-around by your doctors. My advice is to go back and *make* them listen to you. You are going to have to be your own advocate, and you're going to have to fight to make yourself heard. Don't let them push you to the side just because you're more difficult to treat than a sinus infection. As for your meds, I've been taking Topirimate/Topamax every day since my diagnosis 2.5 years ago. I take 100mg am and pm. It held tremendously. The general consensus is that I'll have to take it for the rest of my life, unless I have kidney problems, which has happened before with it. I just got off for a while, then got back on when the migraines got too bad. It does cause weight loss; I've lost 40 pounds. (I'm also chronically ill) In America, we call Topamax "The Supermodel Drug" because it makes you skinny and stupid. Lol If you find yourself losing words, feeling foggy in the head, or leaving your car keys in the fridge, it's the Topamax. But taken daily, if you find your headaches better or gone, it's the Topamax. Fair trade, I think. I can't take Naproxin; it tears my stomach up. And I've never heard of the third drug you named, so, sorry, no help there. I'll be thinking of you... Sending good thoughts from all the way over here...

I just got discharged today and now i take 1000mg of diamox a day and have had two lumbar punctures in the past few months but this last time the pressure persisted and so did the blurred vision so they put me on another 5 medications. I have permanent vision damage and my parents refuse to allow me to get a shunt which i want to just get it out of the way ( i may be 15 but i know what the fuck i feel in my body) i have to do a hospital home bound school program and i’m home now and still in extreme pain.

Hi I have Iih for about a year now (took then ages as you say to diagnose me) and have been taking diamox for the last 3 month's but haven't seen an improvement and have been struggling with headaches and eye pain every day. Thanks so much for the advice I am going to ask about this medicine. Can I just ask what dose of diamox was you taking in conjunction with nortriptallin? Nothing seems to be working for me right now.

I got diagnosed with IIH on July 2018, it’s quite new to me but very painful.

Hi, just been diagnosed with iih too, had my first LP Monday and I had to be sedated, has no one offered you diazepam etc before procedures? Maybe ask if you do need one x

I have a note from my neurologist for when something happens again because he said chances that I have build up to 55 again so I have a hospital note that sends me directly to a lumber punch

I got diagnosed in August I live in South Africa and the doctors caught mine early I follow a diet and I have Azomid that I take 2 times a day and a lumber punch sucks and I am 16 and it's just stressful because every time I get a headache or any symptoms that are normal things that people could experience I stress and hope I'm okay

I was just diagnosed with this and lemme tell ya, cannabis is a life saver here. It’s the best pain relief for it. My doctors told me it was fine so thought I’d share.

Can you spell the name of that new prescription you was on?

I was thinking about this headache you were getting after the procedure, do you know how much fluid they took from you?

You lost your eye sight for 10 seconds? Did you just see all black or all white? Or just blurred shapes?

Really happy to see a new video from you! It’s great news that you’re so well and not having to take any medication. I’m so happy for you. I’m having my lumbar puncture tomorrow afternoon :( at this point I’m glad, because the blindspots in my eyes are ruining life for me. That and the pain. It’s interesting that you were nearly turned away from A & E. They sent me home as well, and as you said GPs know nothing about this condition. I had to pay to see a private GP in the end. He saw the papilloedema in my eyes right away and within three days I saw a Neuro-ophthalmologist. It still feels like it’s taken forever. I would definitely urge anyone who thinks they might have this condition to push until they do get some help from the doctors. Thanks again for the update. Long may you remain symptom-free!

i’ve actually just been diagnosed with this a couple of days ago. my symptoms started out with a headache. the pain spread all down my back and arms to the point where i could barely move and i was throwing up on a daily basis from the pain. i actually couldn’t keep any food down. i went to my doctor and she said everything looked good a few weeks ago, so she sent me to a neurologist, which i couldn’t get into until this past tuesday. once i got to the neurologist she looked at my mri results and said they were fairly unremarkable and was getting ready to give me a recommendation for a neurosurgeon since she didn’t know what was wrong, but decided to do a quick physical exam. she moved her finger side to side and told me to follow it with my eyes, and my left eye was paralyzed and couldn’t look to the left. she then looked at my optic nerves and sent me to be admitted to the hospital immediately. they figured out quickly that it was iih. i had to have a lumbar puncture with opening pressure done. the normal pressure should be anywhere from 10-20. mine was 55. even the doctors were shocked. they said it should give me relief from my symptoms for a few weeks at least, but within a few hours of having the lp the fluid had already built back up and my symptoms were even worse than before. they’ve now put me on diamox and recommended that i lose quite a bit of weight. hopefully the diamox will work, but there’s a pretty strong chance that it won’t because my fluid builds so fast and i have such an extreme version of this condition. i suppose i’ll just have to wait and see if it works!