I am so sorry she is going through this as well. My doctor was surprised with me as well because I am normal height/weight. Lately, I have been receiving calls from lawyers because they are tying hormones to this condition ( their focus has been various birth control pills), however, hormones are now a focus. I wish more doctors/research was going on for this condition because it can be so debilitating.

Heather, it's likely that you also have sleep apnea complicating your IIH, at that weight. for both problems, at that weight, it might be recommended for you to have gastric bypass. I suspect that weight loss would make a huge difference in your case. I am on beta blockers also (propranolol is a beta blocker) and I have been able to lose weight regardless. the beta blocker seems to reduce ICP spikes that translate from blood pressure spikes, and it helps my IIH in that way. so stopping the beta blocker may not make that much difference and you may have more symptoms without it. treating your sleep apnea is more likely to help.

So she went in yesterday for another lumbar puncture. After 5 weeks on the Diamox the pressure has decreased some. It was initially 51 and this time it was 33. The Neuro seemed pretty happy. He wants to see her back in 2 months and do another lumbar puncture to see if it is in the normal range by then. She has another appt with the OpthoNeuro next week to check the swollen optic nerves. Another field vision test I would guess. Still so much about this IIH that I don't understand. I have been doing so much reading the pat the month trying to figure out how or why this happened. Seems to me like her DRs really dont care why it happened but just trying to get it in check. They have all said they have never seen someone at 19, 5'10, and 125 pounds not on birth control, not taking any medications or vitamin supplements, no other visible causes with this condition. Kinda has me floored. I would still love to hear from more people on this.
Thank you

it does make you think there must be a secondary cause they are missing. how can they keep up with it if they don't treat the cause? has she been tested for autoimmune disease? Lyme disease?

I would be really sick at a pressure of 33. mine was 23 at diagnosis. now I'm 14 and it's such a relief. so I don't know if I would be complacent right now. make sure her vision is improving. I would consider ONSF.

I feel the same way. There is more to it some way. Regardless of weight. I have been loosing weight and still have more to go, but still the rapid onset, when I have been a heavier girl my whole life, doesn't make any sense. & if weight was a true factor, a lot more people would have the disease. I think the cause is more in depth. I have been researching a lot... I feel our hormones play a huge factor in it. A lot of women with iih have other medical diagnoses (endo, pcos...etc) that doctors can't definitively compare to iih. But all relative to hormone issues, just as much as if you were to take birth control it would affect your hormones as well. which we know has been linked to causing some pseudotumor lawsuits. I agree that there should be a bigger scientific approach to the disease. There is a lot of foundations out there who are doing clinical trials and research, but not very much has been discovered. Ohio University for example is doing a Genetic Study, but ONLY to paitents who have multiple family members with pseudotumor cerebri.. I personally haven't heard of that before.

You may want to look into: TOS (Thoracic Outlet Syndrome) and get the Trigger Point Therapy Work Book for your daughter. I cant emphasize this enough, it took me 20 years to figure this out for myself, doctors never did. And I had my eyesight improve almost immediately!
Basically it comes from shortened chest muscles plus elongated back muscles (too stretched out cause of tight chest muscles) which block a plexus of nerves/arteries going to the head. Often there is no pain. Causes a HOST of problems that are often strange, it is sometimes hard to put them all together. Regular yoga will cure it. Yoga poses to expand the chest and lengthen the chest muscles (combined with trigger point massage therapy when there is pain) triangle pose especially, helps to cure this.

Most people have shortened chest muscles from too much time in front of the computer.

Yoga has to be soothing, stretching type with deep breathing - not like western exercise where you *force* it. You cannot force a muscle to lengthen, you will only make it worse that way. Its a slow gradual process of learning to listen and take it easy on the body - NOT about stretching further each time! Its about getting rid of the pain, lengthening the muscle, breathing deeply, relaxing into the stretch, NOT about going further or doing more... its very contrary to what we are taught about making progress.. Anyway, yoga is for the whole body. You can focus more on chest poses BUT you have to stretch the whole body or it does not work.

Learning about trigger points and muscles of the body from studying trigger points helped me the most, but it literally took 10 years of practice to begin to understand referred pain. But the quick review is: Think of a marionette puppet, if you pull a string, the whole puppet body is effected, not just 1 tiny part of the puppet. That's how muscles are too - but western medicine tends to isolate it to 1 muscle or 1 thing, which never works and when it does, not for long.

Hi Linzdad. I'm new to the group and a mom of a 16-year-old dancer (very fit and muscular) diagnosed with Psuedotumor Cerebri in February this year. We tried Diamox too, and she had every single side effect listed.... even kidney stones. She was only on it for 2 months, but she could barely get out of bed during that time. The kidney stones did it for me. We titrated off and had a lumbar puncture done this month. Her pressure is still high but down. The neurologist requested we give Diamox another try but at a much lower dose and only at night so that most of the side effects may not be as strong. She started 125 mg per night on July 5. We plan to up it to 250 mg on August 5. She's very lethargic and her muscles ache but nothing like she was when she took 1500mg throughout the day. The nerve tingling and ear ringing have not been a problem this time either. She's been invited to dance with professional dancers later this month and is very stressed at how much muscle tone she's lost within such a short time but is determined to do it. As for vision, my daughter had little to no peripheral vision in February with several blind spots. In June, the field test showed great improvement! She still has blurry vision and dizziness, but things are improving visually. The ophthalmologist claimed her young age and early diagnosis helped with the dramatic improvement. I wish your daughter the best and hope her vision has improved. Please let us know if you find any additional/alternative treatment. I agree that this Diamox is such a harsh drug.

Hi Im a 19 year old girl and I just finished my 1st year of college. I was perfectly healthy and didnt have any allergies, no family history with this and ive never even broken a bone, etc. A week before June I went to get my merena iud out because it bothered me for awhile, which I only had in for over a year and then switched over to the nexplanon arm implant. About 2 weeks after getting that in I started to get the headaches and everything went downhill from there. I started to get severe headaches that wouldnt gove me any relief unless i was asleep, i was sensitive to the light to the point where id get sick, and my vision started to progressively get worse and worse to the point where I couldnt drive! I ended up getting my nexplanon out about almost a month after getting it in because doctors thought that could be the cause. I was in an out of hospitals and then I finally got admitted to a hospital where i spent 5 days at and had 2 painful lumbar punctures. They told me my spinal fluid pressure was 55 when it should have been in the 10-15 range. Then my neurologist and optimologist referred me to the mayo clinic to a neuro optomologist who studies people with pseudotumor cerebri. I also had my third lumbar punture there also. Then thats when he finally diagnosed me with pseudotumor cerebri. He said this is the most severe case he's ever seen! Its been about 3 weeks since I had surgery to put a shunt in me to drain my extra spinal fluid so my swollen optical nerves decrease in size to help my eyesight. He also has me on 4000 mg of diamox a day, but hopefully for not too long because its such a high dose and ive had weird symptoms! But other than that my headaches are gone ☺️ and my vision had gotten soo much better that I can drive again ☺️ and my stitches are almost all healed up:)

@jujugirl11 - I'm so sorry you've gone through this and hope you continue improving! Something I found with the extremity tingling (if you're having that with diamox), take a strong dose of vitamin C. Either OJ or the C vitamin. The first time my daughter took diamox, she had terrible tingling. The C would actually help within 20 minutes. Now, she's on a lower dose of diamox and takes one dose of C a day and has prevented the tingles. Her ear ringing is better too.

Linzdad, I'm sorry to hear about your daughter. I want to share my story with you and hope it brings you and your daughter encouragement. I was diagnosed with Pseudotumor Cerebri/IIH 32 years ago. Yes, I'm 51 now. I was 19 yrs old and had completed my 1st year of college when I started experiencing the bad headaches, feeling faint, nauseous, stiff neck and shoulders and double vision. I went to the hospital multiple times only to be given pain meds. This continued for weeks until I was so ill I could barely keep my balance to walk. I was finally admitted into the hospital. Given my symptoms, I was subjected to many tests to narrow down a diagnosis. I was finally given a spinal tap and was told that my opening pressure was 3X higher than normal. After hey removed some of the fluid, I lost consciousness and ended up in ICU for 3 days. I was not expected to live. Back then research was really getting started about this condition. I did not fit the criteria for IIH. I was placed on Diamox and was finally able to be released after 30 days in the hospital. About 6 mos after my release I was referred to the Iowa City University Hospital. I would travel there many times for a few years. There I was under the care of a Neuro Ophthalmologist (James J Corbett, MD ) who has researched and has written about Pseudotumor Cerebri. I was included in one of his case studies given that it was unknown as to why I had IIH. He has practiced at several hospitals and Universities and he continues with other Dr's to research/writing about Pseudotumor Cerebri/IIH. I was under his care for 3-4 yrs. Once released from his care he had me discontinue Diamox. I felt good, no symptoms, and my vision went back to 20/20. Every now and then I have "floaters" in my peripheral but nothing major. I still don't know what triggered this 32 yrs ago but I have routine eye exams every 2 yrs and have had NO symptoms of IIH until recently. I was rear ended in a car accident 5 mos ago in which I sustained whiplash and a concussion. I had an eye exam that showed pressure on my optic nerves. Given my IIH history, I had an MRI and a spinal tap. My opening pressure was 23 and (not normal but not high) I was placed on Diamox 500mg 2X a day for 3 mos. My vision has improved and my opening spinal pressure is now 17. I feel good! Head trauma can cause IIH. I hope everyone with IIH is aware of this. I send best wishes, hope and healing to everyone of you out there suffering with IIH. Eat healthy. Please watch your sodium and vitamin A intake. Don't give up and be strong!

Afternoon,
I myself was diagnosed last week on Thursday (after two minor panic attacks of Brain Tumors). Mine started with distorted blotchy vision for around 3 weeks, which came with being dizzy (I already have bad eyesight, so wasn't too fussed) I'm not skinny, but I am a med build, in AUS I'm like 70kg.

So far, I'm loosing weight rather fast since taking Diamox - I am now 67kg (5 days) Very thirsty all the time, tired, upset tummy and tingled hands. From reading posts this seems to be kind of normal. I am 27 yrs old, rather active - go gym each afternoon and eat relatively healthy.

Anyone else going through this, any tips? I'm new to this and only just dealing with it. We were planning babies, but Nuro told us we now should wait, as Diamox is a D3 drug and can cause defects in babies. How fast do people tend to show recovery? I am hoping for 3 month signs of better with a 6 mnths aim to be off the meds - just not sure if this is realistic. Then again, uncommon condition and appears we all tend to react differently to the drug and the condition alone.

Hi my daughter was diagnosed with this condition at 15. She too was fit and healthy but several things raise my suspicions. She returned from America with Glandular Fever, then the headaches began intermittently. At 15 she had an allergic reaction to the pill and a severe fall. The headaches and all the symptoms of IIH began in earnest.
she suffered through all the neurological medicines, MRIs Cat scans etc. lay in a dark room and wanted to kill herself because of the pain.
She gained 35 kilos and spent her time hallucinating and crying, (Not a good time)
However to cut a long story short, she found cannabis which she smokes in a bong, and takes the rick simpson oil The cannabis has a substance called anadeamide which forces the cerebral spinal fluid out of her brain, (not sure how it works exactly) Cannabis is also used in America to treat Glaucoma a similar condition with pressure in the eye.
An ophthalmological surgeon measured her optic nerve swelling over a two year period and noted that cannabis was the only drug that reduced the swelling and the pressure (a surprise to him, but he just wanted my daughter to be pain free)

Let me save you some much time, Most Gp's have no idea about this disease, there is no cure and no known cause. I suspect the levongistrol in the birth pill. In the states there are 1000's of actions against Bayer the manufacturer of the Mirena (main ingredient levonigistral synthetic hormone.) which has caused IIH in all of these cases.
We have been to every form of natural practitioner, specific physiotherapy was helpful for the back and neck pain, chiropractor (waste of time) acupuncture (moderately helpful, but didn't directly impact on the cerebral spinal pressure) Cranial Osteopath (sort of, but not really) Massage therapy, chinese herbs, colour therapy, bowen therapy, dorn therapy, counselling, psychologist. Natural healers, psychic healer. As you can imagine I was desperate and dragged my daughter to all of these different people looking for an answer. And we got none, but paid a heap of money.
We tried Octreotide (because some woman had some success injecting herself with this hormone to help with the pressures. ) the needle wouldn't go into my daughters stomach after the third time, that told us something.
We have investigated shunts and our research tells us these aren't incredibly successful and as a last resort we contemplated have stents put in the transverse sinus until a neurologist assured us this wouldn't stop the pain.
She has had innumerable spinal taps, and these only work short term, causing scaring around the spinal cord, not a good long term option and my daughter got a rebound headache, so these are definitely out.

The cannabis smoke and oil keep the disease under control. but it comes with its own sets of problems. Too much and it can causes vomiting and loss of appetite, It drops her blood pressure so low that sometimes she struggles to get out of bed. she has been on this drug for 4 and one half years but this drug is the reason she is alive. If you would like any more specific information you can contact me at annaw@xtra.co.nz. I am happy to help and tell you what we have learned over the last 5 years.
One last thing when the pressure is really bad, she rubs the Rick simpson oil on her gums, (quicker access to the blood stream) and this helps in an emergency.
God bless and I hope this helps.

Hi. I'm Cath. I use to be very active within this group.
I m so sorry to hear of your daughters diagnoses . It's hard being a mom some days.
When I was first sick and going thru all the tests I kept asking my Neuro,could it be this or that. Didn't want to hear I had IIH. She said
" in the absence of any images from scans ( Cat and MRI) and an opening pressure higher than 20 ,one can only conclude its IIH"
Which means, it is. You need to know this as you move forward to helping your lovely daughter with the new life she is about to start.
I wish there was a nicer way to say it.

I have been sick for 10 yrs plus. I have non- prograble vp shunt- no revisions.
I had almost lost all my vision but a lot has come back. No peripheral .
Still have daily headaches. Have Papillodema in both eyes which tend to wax and wan! Adverage opening pressure is 34- still.
I have learned a lot on my travels and maybe can help.
I tend to answer direct questions better. As many as you like tho!
I hope I can make this illness a bit clearer for you and your daughter. If I don't get locked out again. Cath.

Here is our latest updates. For the past few months my daughter has had several MRI/MRV, lumbar punctures, blood tests you name it she's done it. The last lumbar puncture was down from 51 to 33. Her neurologist referred her out to a Optho/Neuro specialist at UC Irvine Health Gavin Herbert Eye Institute. The field vision tests there confirmed that in her right eye she does have some blind spots and peripheral vision is gone. Her left eye still had swelling on the optic nerve so the specialist upped her diamox from 1500 to 2000. He also had her do another MRV with contrast on a high resolution machine so he could rule out anything in the veins with the high quality images. That came back perfect. After 3 weeks she had a follow up and the swelling was gone completely. This is good news however he told her that the lost vision in the right eye is probably not coming back. : ( Very bad news. We have a follow-up appt in a month to test everything again. He said if everything is still good the plan of action would be to stay on the 2000 mg diamox for a year then slowly ween off it and keep monitoring things.

Her college basketball season starts up in a few weeks. She is determined to do everything she can to play. The big thing is for her to really watch her potassium levels. Diamox is a bad drug for stripping the stuff you need. She drinks plenty of gatoraid to keep it up. Time will tell when the demanding 3-4 hour practices start back up. I hope she is able to put back on some weight. Since starting the Diamox she has lost 10 pounds. Doesn't sound like a lot but for a girl who was only 133 to start with going down to 123 is a big loss. Thank you to everyone for their help and support. It is amazing reading everyone's story in this tiny little world of IIH. We don't know of anyone else in our extended circle of family or friends who have even heard of IIH.

Hi there, a few things:

Anemia is linked to IIH and there are lots of published case studies showing that if you resolve the anemia, IIH may be cured. Women become anemic easily so have her blood tested!

Diamox has several effects that can make you feel terrible. One, you can become dehydrated. Two, you can become low on potassium. Three, you can become alkaline - your blood Co2 has to be above 22 to feel good on Diamox.

SO, get her tested for electrolytes and Co2 and anemia. Eat bananas. Drink more water.

If you google "Diamox baking soda" you will find info on how to raise blood co2. I've been on Diamox twice and the first time, I didn't know this and suffered terribly. Now I take 1/4 tsp twice a day in water and feel so much better.

I only just learned about the anemia connection today when I found out I am extremely anemic.

Hope she gets relief.