CSF presents "Idiopathic Intracranial Hypertension (IIH): Advances in Treatment" - Dr. Imran Chaudry
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- Опубликовано: 25 май 2017
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Dr. Imran Chaudry talks about the different methods that doctors currently have to treat idiopathic intracranial hypertension (IIH), how those treatments have advanced and how far they still have to go. For patients who are beginning to lose the ability to see, advancing treatments for this condition is critical to quality of life. This condition is most commonly found in women with BMIs at 25 and up (obesity), but it can affect people with normal to low BMIs, as well. This lecture was given at the May 5, 2017 Charleston, SC CSF Chapter meeting.
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My mom was diagnosed in 2003 with idiopathic intracranial hypertension following several surgeries including Optic Nerve Sheath Fenestration. Her headaches have permanently gone but her vision loss still exists today. Other than the vision loss, she is perfectly active person but her day to day life has become miserable due to vision loss. This video gives me hope that she may see the world again (She can recognize bright light and shadows sometimes). Anything anyone can share with me I would so appreciate.
Thank you so much, I have started the process of evalution and next week eye exam followed by an mri. Really helpful for understanding IIH.
A brilliant presentation with very clear understanding of everything from diagnosis to the treatment and management Thanks dr. Imran chohdry
"If the patient is having these symptoms, who would they go to first?" I saw 3 internal medicine providers, a handful of emergency room doctors, 5 neurologists of various specialties, an ophthalmologist, neuropthamologist, ENT, and a geneticist. No one could tell me what was wrong with me. I finally went to see a neurologist to see if my Chiari was the cause. He said my Chiari wasn't bad enough to be the cause and that he was so sorry, but he couldn't help me either. His PA suggested it may be pseudotumor cerebri. I'm now waiting to get in to get an LP. I have been searching for answers and suffering with debilitating symptoms including vision loss for 7 years. I hope I am finally on the right track.
Did you have double vision
@@bhupendrasingharora6183 Yes. The LP showed no pseudotumor cerebri. Still no answers.
I love this presentation! For folks with compressed internal jugular vein at C1 issues (which seems to be so often overlooked) and the higher pressure issues it causes, I have to wonder if the fact that continual higher pressure can prevent the blood vessels from ever relaxing, and thereby defeat the operation of the Glymphatic system, which relies on the blood vessels to contract at times, so it can remove larger debris like beta amyloid clusters and hyperphosphorylated tau tangles, the markers of Alzheimers, instead those larger debris pieces can then wind up causing the giant arachnoid granulations at the Superior Sagittal Sinus area, this having huge implications for neurological disorders like Alzheimers, Parkinsons and other issues. I think your wonderful talk provided a nice background for a lot of folks to understand IIH.
Many Thanks!
This is the one I have with the jugular compression and I’m struggling to find any help near me, I have serious papilledema & I’m losing my vision, headaches 24/7, and several other symptoms & I’m so scared
@@harmony331000 If you have your MRI images then carotid sheath compression is easy to see with the internal jugular vein slices, finding a good neuro / interventional radiologist to review and document any such venous obstructions could be useful for you, it's not something that is normally reviewed otherwise, in my experience.
@@harmony331000did you find anything
I got this diagnoses Monday I already have double vision when looking to the left in one eye
Extremely informative!
Suffering from iih for years; medication has been very helpful but I'm still experiencing the headaches and feelings of pressure from time to time. I was diagnosed in early 2017 after the symptoms (which I'd had my entire life) had suddenly become unbearable and new ones started emerging. Sometimes it feels so hopeless - will I ever be pain-free? Will I ever know a life without dizziness and nausea and headaches? I'm glad that information is out there about this ailment. Really hoping for more treatment options!!
I know that this is a controversial subject, but Ozone therapy has helped me a lot. In theory, it provides more oxygen to the brain. It is well studied in Europe, and China. However, in the United States, it is heavily scrutinized.
@@Notacarrot2 Hi seen your comment.
Could I go to my doctor (Neurologist) for the ozone therapy?
And also do you experience a voice or your thoughts being very loud?
I have this. Was given a shunt there’s NO MORE HEADACHES OR PAIN but I did lose my vision😞😞
And it did cause bad thoughts , ringing, and noises were loud
Went in to get my annual vision check and my optometrist said I had Papilledema. He referred me to an neurologist to get and MRI and find out what’s causing my Papilledema. I have a feeling it’s IIH because I’m overweight and have all the general symptoms. 😞
call.me.marina same here. Very scared of my upcoming MRI. But I will give all of my worry to God. Did you ever find out what was your problem?
I’m going through the same
Do you have or know of current stenting trials accepting new patients?
Thank you for the video. I suffer from IIH and got my diagnos a couple of months back. Because I have IIH I suffer from a terrible headache sometimes and I only take paracetamol for it. Sometimes it works and sometimes not. I do not take any other medication for the headache and do not plan to because of side effects. To others who suffer from this disease, how do you deal with the headache? For me it almost always disappears after a 30 minute rest lying down. But I can not always lie down when I have the headache because I have work to do and does not want to stop living my life just because I have rare neurological disease. One way for met to deal with the disease is to make videos about it and be completely about it to family, friends and workmates. I recently started vlogging about it on RUclips and it is a great tool for me to deal with this disease.
Is normal pressure iih possible?
What do you do for treatment of the ICP that is due to jugular vein compression from cervical spine deformations?? This is my problem…the CSF can’t get out of my head and I have terrible papilledema and daily excruciating headaches with significant visual disturbances and I’ve been waiting over 3 months for the LP call, nobody around me is familiar with this and I’m struggling to find anyone that knows or will get on it and I’m going blind! I’m in Alberta Canada and everyone that is good at dealing with this is in USA, any suggestions would be greatly appreciated 😻✌️
My mom is also suffering from IIH doctor said that take the dose diamox 1000mg per day but no result find and also my mother vision loss
Can nasal cranial release help with this issue?
I wonder if the obesity is caused by hypertension, and the IIH doesn't get diagnosed until the patient is worse and gained weight from the central nervous system not working well. I have had these symptoms for decades, with eyeglasses being incorrect after eye doctor visits and dismissed.
Exactly
Yes...i have found that in studies the intracranial pressure can squash the pituitary and this affects metabolism i think.I have a benign tumour and my mri findings included empty sella.At around the same time i gained a lot of weight despite no changes to my diet or exercise levels.There's definately a connection i think.🤔
Very informative. I'm a 48 year old male about 150lbs, never had one single symptom except being diagnosed with papellidema on a routine eye exam. Topomax for 3 months did not work so they are going to prescribe Diamox. I'm hearing the side affects are pretty bad so I'm nervous about being on 500mgs of Diamox per day.
Albert Aguilera hey, sorry to hear that topomax hasn’t worked for you. My dosage of diamox was 3 tablets a day and I haven’t had any major problems (fortunately). At the beginning it made my belly ache but it went away after my body got used to it. Hope it’s gonna be the same for you
Alessia Ginevra so far so good, no side affects other than not being able to taste Soda or Beer ☹️ but other than that it’s the exact same as Topomax. Hopefully being on Diamox will reverse my Papellidema otherwise I guess surgery is the next step. 🙏🏽🙏🏽🙏🏽🙏🏽
Albert Aguilera wishing you all the best
Ever looked for the stomach? Cause if the spinal fluids brings the nutrients - maybe the eye lacks nutrients? Maybe the stomach doesnt work properly to deliver the nutrients -> so the concentration is low for what nutrients the eye nerves need. So the body pushes more to comprehend the low nutrient concentration.
VItamin C,A,B2 - OPC - Carnosine - that*s what i would take if i had that
PhilBo they say vitamin a increased CSF :(
38 Old Male here that was diagnosed with this in 2014 with a elevated tap at 38. Before that initially they thought I had MS. Well I don't get headaches. I dont get blurred vision. My eyes are fine. Been down that road. The only symptom I get is dizziness. Which is unbearable. Was I miss diagnosed? Could that just be my one symptom and that's it? I'm at a loss and dont know where to go. It's not vertigo it feels like I'm going to pass out and I did collapse once. It's a floating fainting sensation. Any feedback would be helpful. Thanks in advance.
Matteus that’s exactly how my pseudo is aswell it’s very frustrating and scary I feel for u
My main complaint was dizziness and pressure behind my eyes.
@@raquiely how do you recover?
Did you find a cause?
Hi Matteus! I am recently diagnosed with IIH during eye check up. I do not have other symptoms. Woozy feeling is the only concern. I feel the same as if I will fall. What treatments you undergone? Hope you are fully recovered!
Can hypertension meds cause IIH?
Hi, I have severe central tinnitus and have been suffering with tension headaches for almost 2 yrs constantly to varying degrees. The ENT department told me that they are tension headaches due to the tinnitus. I do occasionally get pulsatile tinnitus in my left ear. When the headaches are severe it becomes impossible to keep my eyes open and have to lie down on the bed. I'm only just beginning to get help with this. which is mostly my fault. My eyes have become worse and I'm always frowning. Does this sound like IIT?
There are IIH Facebook groups. Maybe ask your question to them. There may be someone in your area that can recommend a doctor to you. It’s sometimes hard to get a diagnosis.
Hi, thanks for your response, I've just had to change my G.P because of his dismissive attitude, anyway I have a new G.P now and she's booked me in to see Neurology dept.
Hi +Noidear72... I'm sorry you're having such terrible symptoms and that you've been dismissed by some physicians. The best first step is always to find a doctor that can serve as a strong advocate for your care. A good place to start is to visit our website and look at the members of our medical board (SEA Board). If any are in your area, it may be worth contacting them for advice, particularly if they're nearby. If you have further questions, feel free to email us at info@csfinfo.org. -Kaitlyn, CSF
@@noidear7216 I had to do the same thing. My old nuero told me I'm not sick,but just diagnosed me with Hydrocephalus,but I'm not sick. I looked at him, and said if I'm not sick,why am I here. I agree these doctors have an I don't care attitude and just want to shove meds on you.
Do you see a neurologist at all? You might ask for a lumbar puncture. My daughter has suffered the most excruciating headaches for the past 7 years! We saw many doctors, neurologists (some good a few awful ones). To cut a very long story short my daughter presented none of the usual markers for IH. Her constant headaches were diagnosed as chronic migraine but no medicines for migraine touched sides for her. We were on a trial list for Aimovig which was going to be very expensive in South Africa (worth every cent if it worked), just to rule out the remote possibility she had her first lumbar puncture last week. Her spinal pressure was very high. Some fluid was drained off and her diagnosis was swiftly changed from chronic migraine to Intercranial Hypertension. She is now on diuretics but it can take 3 weeks to feel the full benefit and I pray there is one. What I am saying is that she did not have the visual disturbances, the whooshing in her ears or tinnitus. Even her headaches were often on one side and then they would shift to the other. The only 2 symptoms she showed were those of worsening and constant headache and a very stiff neck. So please even if they look in your eye and see nothing ask for a lumbar puncture and or to be put on a course of diuretics.
I am looking for some help I have pseudo tumors I have lost 80percent of my vision and on my 3rd shunt replacement! Really need to know who specializes in this area!
Shenette Simpson Have you found help?
Can you please guide me what to do because my sister is suffering from IIH and her vision is completed loss???
Please help me
Is your sister eyesight is improved?