Benign Intracranial Hypertension Please Help :(
 

Hey guys I will try and keep this as short as possible.

Well, for the past 8 months I have had anxious like symptoms and then began to experience visual disturbances accomponied with chronic head aches. I then went to hospital after a Optomologist found that I had swollen optic nerves in both eyes and then was diagnosed with Benign Intractracnial Hypertension which is when pressure in the head builds up giving chronic head aches and visual discturbances but doctors still do not know what cause it although 90% of all woman who get it are over weight to obese and I weigh 100 Kilos when I should be 54 for my height so what I am wanting to know if any of you know something about this or have gone through or are going through this is,

- If I am to lose weight, will the pressure then become normal again and go away,
- Could my anxiety (which I seemed to have developed before the BIH symptoms began) be related or be connected to Bening Intracranial Hypertension,
- If medications, random Lumbar Punctures and weight loss do not take this away, then what other avenues do I have besides surgery as I do not like the chances of the surgary coming out successful

Thanks for the help guys and just for reading this I am actually thankful that I have gotten this as this is my body letting me know that I am not healthy and there is no doubt that I need to get healthy again and lose weight. I have put my body through so much and I myself deserve better so I totally accept what is happening to me and now I am ready to go through the healing process and would like to know how I could thanks!

have they considered Arnold Chiari malformation?

Hi there!

OMG I have been diagnosed with exactly the same thing! Benign Intracranial Hypertension.

I haven't really noticed many symptoms yet - I just noticed a few blotchy spots in my right eye mainly but I put that down to being tired. I get headaches and stuff which pain killers don't really do anything for, but I thought what they hey - it's been 5 years, why not get my eye checked out!

I went to my optom - there was some concern there he says. So he refers me to the Eye specialist who finds that my optic nerves are definitely swollen. He gives me some reasoning for this but the only one I heard was TUMOR! And I'm only 25!!!

From here he refers me to get a MRI scan, then it turns into a CT scan first then maybe MRI. Then it's changed again - a CT scan, then a LUMBER PUNCTURE! Holy crap!

I'm pleased to say I had an MRI done about a month ago and it's not a tumor! So I have been diagnosed with Benign Intracranial Hypertension.

They have to take a Lumbar punture to measure the pressure to see if that's definitely the cause. My first 5 lumbar punctures failed :( I had a horrible headache for days but I put that down to incompetence of the New Zealand Health System. I go back for hopefully a successful one on Tuesday....

IF this is the case, I've been told weight loss healps (i'm 90kgs and should be about 65 for my height) which makes me the perfect specimen for benign intracranial hypertension! go figure. My doc is going to put me on weight loss, and then to reduce the CSF (cerebrial spinal fluid) accumulating around my brain to relieve the optic nerve swelling that could eventually lead to blindness, there is the option of drugs or a shunt being surgically installed in my neck to ask as a pump to push excess fluid out of the brain!

God that was a marathon writing that - but I hope that helps you and any one that could help me out as well with any information they have that would be so appreciated! As to be honest - I'm not keen about lumbar punture number 6 on Tuesday :( :( :(

oh and i have heard many successful surgeries as well! so no need to worry about that as I think I would rather have the surgery than go blind! I haven't heard a bad story yet - but i'm gonna keep delving into the internet :)

and sorry i meant my doc was going to put me on weight loss PILLS and that i would eventually go blind IF if pressure on my optic nerves isn't corrected :)

some drugs cause this...
 

The most common cause is the tetracycline family.
Minocycline used long term for acne may cause this, and is the most common, I think.

Also excess intake of Vit A, the retinol form. (often a treatment by dermatologists for acne--but not as common now compared to a few years ago).

Here is an article about it:
http://www.nlm.nih.gov/medlineplus/e...cle/000351.htm

I have seen people use the Diamox (acetazolamide) or Lasix
(furosemide) for mild to moderate cases.

Yes there are many causes of it and that apparently is one, that my neurologist pointed out but I have never been treated in this way for acne so that's definitely not why I have BIH.

I have searched and put it down to the weight, being a female in the correct age group, I guess being a rare disease some people are susceptible to it and when the weight is put on, then it just affects or shows BIH a hell of a lot more. We all know weight gain causes all kinds of problems in different people.

Kinda makes me wish I was still going to the gym instead of giving it up only 3 years ago...

But then hindsight is beautiful isn't it? lol.

I'm just glad I got the lesser of two evils - tumor or BIH.

hey everyone thanks for the comments and yes I do understand as I am around the same weight as you but I should be 54 which im obviously SO not but I am experiencing head ache like migraines visual disturbances and I had an MRI and CT Scan which were all clear so yes it is BIH so I am going to lose weight no matter what as I put it all on so fast as a year ago I was basically annorexic from not eating and working out 3 hours a day (I have a eating disorder kind of well did anyway) then when I started eating again I put on weight sooo much REAL fast so yes with weight loss and follow up lumbar puncters this will all go away :) but yes I know what you mean about the NZ Health System, I come from NZ and when I was 10 I had a blood clot in my brain which caused Intracranial Hypertension so I know alll about all of this stuff I have never just had IH with out any reason before so im scared this time lol but I believe the NZ System is better well where I lived anyone but PLEASE keep in contact that would be awesome and yes weight loss plus LP's now and then and making sure you stay on your meds and this will all go away but its important to keep active and still live your life :) so thats what Im doing right now and I know once I lose all this weight in a couple of weeks this will all be gone

Hi wondering if weather and particularly atmospheric pressure or pending wind storms cause it to act up. Also would craneal sacrial (sp?) massage therapy help?

Hey guys havnt been on here for a while well I have come out of the hospital for a month now I have had a repeat lumbar puncture and the opening pressure was 30cm's instead of 38 which it was when I first was presented to the hospital. I have been put on Diamox which is going fine they told me to take 2, 4 times a day but that was causing so much trouble for me such as bad pins and needles to the point where I would wake up at night, my taste buds were going crazy and I was sooo sensitive to heat. I have chosen to lower it to 1, 3-4 times a day instead and are going fine with only a little thingling now and then which doesn't disrupt me. My eye site has improved, I may only get a fast heart rate once every 3 weeks now, still have migraines nearly everyday constantly but don't no where near as bad as a normal head ache which is awesome. And I no loner hear the ringing in my ear or feel pressure in my head, maybe every week I may feel pressure in my head only once. So, everything is healing this is so awesome and I have realized that this has all happened because I was 100Kilos and only 19 Years Old and my height is only 5 foot 5. So, I am thankful in a way that this has happened as I have now changed my lifestyle and eating sooo healthy and losing weight. I will begin working out as well with an aim to atleast lose a kilo a week to 2 kilos a week over 5 months will take me down to 54 Kilos which is a perfect bikini body for me so I am so happy. How is everyone else going?

p.s Whoever has this and is over weight then I am telling you it is deffinately because of the weight what happens is the weight or fat pushes on the abdominal and in a way squishes the circulation of the blood and the heart circulation connects to the brain and then the CSF builds up in your head lol sorry I am trying to explain it and that is the best I can so that is why you may as an obese or overweight person with this dis-ease, experience fast heart rates, pulsating sound in the ear, pressure in the head, feeling of hot flushes, dizziness, pulpatations, tingling in the body somewhere, head aches, visual disturbances and more as the squashing and tensing of the blood flowing through your body causes the dizziness and heart to race to get blood flowing around to the body and causes sweaty palms and more and the pressure in the head caused by this builds up and causes the head aches, pressure, pulsating sounds in the ear and then presses on the optic nerve in the eye so I hope this helps! I may not be correct with what I am saying exactly but I hope you can catch my drift!

Hey thanks for the reply. I was just wondering would you or anyone else know if any one has fully recovered from this or if you or any one else is recovering and getting better. I have only had this for 8 months and already since my first follow up LP I have noticed that my eye sight has improved very much, I no longer have ringing in my ear and I no longer have pulsating pressure in my head when I stand up or basically do anything. Although I am still having tiny migraines now and then with this weird feeling of blood pumping hard through out my body especially my head and still have pins and needles in my arms now and then and hands. Do you ever get the feeling of blood pumping hard through out your body or head? or do you ever get pins and needles now and then OR are you having what I have been having where the head aches are ALWAYS on one side of the head and the ringing is always just on ONE side of the head and the pressure feels worse on one side of the head?

i do not agree im male and have had the condition for 6 years when it was spotted first i had no weight at all now i am abit over weight but my papiladema is not as bad as it was when it was first spoted ok my presure is at 50 but i would say im completly oppisite as my condtion is not as bad since i put some weight on

I get this pressure in my head for no clear reason, but it feels like my head is going to explode. There is not always pain with the pressure. Many times this happen when I stand up and start to walk. I have to stop walking and wait for several minutes for it to pass. I have also experiencing blurred vision but somtimes its only blurry spots. I had a spinal tap a year and a half ago (they were testing for MS) I do remember that they said my opening pressure was fine. Is there any one test for this?

I was diagnosed with Intercranial Hypertension, also called Psuedo Tumor Cerebri in the spring of 99. No one really knows why someone gets PTC. Different doctors have different theories for why someone develops PTC. The cause of my PTC is thought to be the genetic blood clotting disorder I have. I had a great many problems with getting the right meds to treat the PTC. The "normal" course of treatment is Diamox and sometimes a combination of other meds. My treatment is Lasix, Vivactil and Zanaflex at night. Rain, thunderstorms and heat does affect the headaches. I live in North Ga. USA and we have had alot of violent thunderstorms this year and they do a number on me.

Do a web search for the Intercranial Hypertension Research Foundation. They have alot of helpful information. I don't have enough post to post the link.

Let me know if there is anything else that I can help with. I know this disease can be a royal pain.:)

Stephanie

Intercranial Hypertension & corticosteroids
 

I see these posts are pretty old, but if anyone is still watching this thread, I can't help but wonder how many Dxed w/ Intercranial Hypertension have been on, or been treated with corticosteroids? Other medications?

Looking at what you are taking, or have been given, may just help you avoid a shunt.

BTW, Glycerol taken orally can reduce intracranial pressure. I have to wonder why the jump to such a radical, invasive treatment w/out trying something far less radical 1st? It IS syrupy & not exactly pleasant, but you can get used to it rather quickly, take it in your drinks (vitamin Water & Propel don't taste too horribly bad with it.)

I have to wonder about everything from OTC cortisone creme to Medrol, Kenalog & other corticosteroids as being a possible cause???

VERY curious!