_{IIH - is it a weight problem or neurological disease?
IIH- Weight vs Neurological?}

Do you think that IIH is being portrayed as an illness only overweight and obese people get? Do you think that there will be a stigma attached to IIH, if it is seen this way, and therefore will lead to discussions about where the tax payers money is going, especially in the current climate that we are being told there are far more obese and overweight people now than 10-20 years ago?

Will IIH be seen as a condition that you yourself are responsible for, and that others will form the opinion that "all you need to do is lose weight". Could there be a danger of an IIH'er being seen as a drain on medical resources, and if the general consensus becomes it is a weight issue, what will that mean in terms of Disability and Employers views on your condition.

We'd love to hear your views.

I already see that happening, IIh is being linked very strongly with over-weight women, although 1 in 7 are not in this group. Every single time I go see any doctor for anything, I am reminded that if I will just lose another 10-20 my symptoms will magically go away. I believe they push this theory (1 in 3 actually do go in remission) because this is all they have. That is the only "cure" they have came up with in 120 years since the term was coined psuedo tumor cerebri back in 1890. A lot of the articles you read, do say that IIh is almost caused because of obesity. However I have found more recent studies on the subject that refute this fact. It is being closer linked to smalling of the vessels in your brain and your absorption of csf. I believe this disease already has a stygma in the medical field and if this disease gets more common and still no answers, I fear it will come across to the general public as such. But what I don't think people realize is type 2 diabetes patients have an over 80 percent chance of going off all meds by diet and exercise alone. To say that it is our fault I believe is kind of harsh, I do not see them saying the same to diabetics and many other food related diseases. I hope for more empathy from the general population, please note on Robby do you hear me on you tube. This was made by a woman who wanting to give awareness to IIH, the comments there after may shock you. So your answer would lie in some of the careless and harmful comments. And mind you this was a preteen at best and even he is not safe from the critisim. We now live in a blame game society and I hope you all have the strength to look aside the comments and uneducated beliefs.

I totally agree with you and you have raised very valid and important points. My own IH trigger has already been linked to my hormones, and up until being put on a lot of medication and steroids, was well within the weight for my height. Although I am lucky that my Neurologists and Neurosurgeon have been able to link my IH to a definite cause, there are many of us out there still waiting to have their links confirmed, which could be unrelated to weight.

Not many people realise that physical exertion and exercise make the IH worse, and aggravate it, to the extent we aren't able to be as mobile as someone without this condition, and that even if we lived on lettuce leaves and other low fat low calorie food, the weight would still go on because the exercise needed to burn these calories isn't possible.

There are IH support groups out there that are promoting weight loss to raise awareness, but I feel it is merely giving people the impression that IH is a weight problem, whereby dieting can help it go away. No matter the diet pill, or so called wonder drug, if you can't maintain the weight you have lost, the illness is still able to return, which then leads to, what exactly is the reason for it obviously being present in the first place, that something like weight, tetracyclines, hormones etc can set it off!

I completely agree that unfortunately, IIH is being portrayed more and more as a weight issue rather than a legitimate neurological condition. :roll:

One of my first times on the ward, I met another IIH sufferer. I didn't know too much about the condition then, but she told me the doctors had a solution for her IIH, they had proposed giving her a gastric band! At the time this didn't mean too much to me, but once I learnt more about IIH, symptoms and treatments, I was quite appalled that the doctors suggestion to her was a gastric band. :shock:

However being overweight myself, I have decided to lose a lot of weight, and keep you all updated and informed as to whether it actually affects my condition in any way. I would be interested to see if it does. I am already aware that bad eyesight has been linked to obesity. :idea:

In all honesty though, I had a frank discussion with my neurologist and he said there has not been enough research done and not a lot is known about IIH, so they throw 'weight' in there as being a cause, as apparently 6 out of 7 IIH sufferers are overweight. But my neurosurgeon openly admitted that as intracranial hypertension is idiopathic, they are throwing out many 'possible causes' for the illness from lifestyle to obesity to everything else.

Hopefully one day, more research can be done and the true facts regarding how you become susceptible to IIH are found, we can only hope. This is a very interesting poll! :Good Luck

:flower:

Unfortunately it seems to be the case - but given that 65% of the world population is obese (WHO statistics of 2008) why is it still a rare disease?

think this is a cop out from medical professionals - too hard basket, your obese, lose weight and all will be ok....how many do we know that have lost weight and still suffer IH, Im 45 and not obese (im a size 12/14)- Ive also been told that Im too old to have IH as it targets young females. i got diagnosed a year ago!

we need to raise more awareness and change the mindset that being overweight is the cause......after all it is idiopathic rite?

Exactly so why has it been stated on one site that it is caused by obesity especially in the UK! We can well do without statements like that

when I was back at A + E on Thursday two docs and a different neuro consultant(cause my own was on hols) said to me " its very unusual for someone with a slim build to have this condition" I get that alot and said maybe its not the obesity factor that causes the condition that it has to be something else. He said " yes we are looking into that" But they can never give me a straight answer!! This is very annoying. I agree with the comments above if 60% of the population are obese now they just blame most medical conditions on it but don't seen to be looking into the fact that it is not the case for everyone and just say " your the one we can't explain"!!!

i totally agree that people assume this disease is related to weight. My neuro said to me that its probably because I am overweight that I have this disease and i should apply for a gastric band. I came home rather upset to say the least.

Bonnie

I have lost 2 stone since being diagnosed ( and put it back on and taken it back off) but now down to 16 stone and still have more to go but my neuro surgeon said and I quote ' I would not need my shunt if I lost another 4 stone' !!!

Just reading through these comments infuriates me! I have been told that they follow BMI to determine obesity, which is completely unrealistic. I joined a program at a local heart health center & they have a machine that breaks down your hard (bones, muscle, etc) & soft (fat) body mass. I am supposed to weigh around 115lbs, but my hard mass alone was145lbs. The physiologist said it's all completely subjective..by the way, they consider anything over 20lbs beyond BMI overweight..& if you're wearing double digits, you'd be told to lose weight. Crazy!

At the IHRF Conference they talked about a hormone or something regarding retinol intake that they're linking to some people with IIH. Apparently it lowers retinol levels, which increases obesity & makes it impossible to lose weight. I wish my memory was better, so I had specifics. I know funding is limited so they're just touching on possibilities, but I think they'll eventually make their case.

I know in my case I struggled with 15-20lbs until IIH hit me head on. I gained 100lbs over diagnosis & treatment process that I haven't been able to lose even when I'm limited to fruits, vegetables, & lean meats. Weight may bring on IIH in some, but it causes the weight gain in others..then there's the population of sufferers that never have any issue with weight at all. I personally feel it's like every other symptom of IIH & varies person to person, but obesity is the fad health concern of the time, so that's where they lay the focus. Plus it takes the control/feeling of helplessness out of practitioners hands & lays it back on the patient.

Saying that IIH is caused by obesity at a time when 8/10 people are obese is like saying the world is flat "but we are looking into it..."

i have only just been told i have this condition and the lady doc said to me it was because i was obese i nearly died i new i wasn't a size 0 any more lol far from it but she made me feel like i was the size of a house so the lovely nurse who seen how upset i was by it all took me and got my height and weight for my bmi and checked it on the chart and i was in the green so to me she just automatically seen a woman mid 30s and went straight for the obese card just because i had big pjs on because i was in a bed does not meen what was underneath was big
do you think it is just that there is not enough known about the condition and the younger docs r just like little robots saying what they have just read out of a book not really interested in it as its not really one of the more interesting cases in neurology

Hello,

IIH is more of a neurological disorder rather than weight. If it was a weight disorder every obese person would have it and it would not be so rare.[color=red] I have lost of 30 lbs and i still have the disease with more headache than when i was heavier. [/color]The drs are so quick to say lose weight but what about the young kids with this that are the appropriate weight. They don't realy know alot aout this diease so they are guessing and as with any disease they say lose weight. I have a friend that has had diabetes since 1st grade and she is 123 lbs and they still tell her lose weight. They need to try and understand that it is outdated research and that your weigt has nothing to do with it. If that was the case I would be having less headaches as my doctor promised..its bunch of bull. since whn does your weight have anything to do with the amount of csf your produce. We produce the same amount as any other person the difference is our ventricles are small or they don't move the fluid quick enough.

All to often doctors use the copout you are to big just lose weight and all your ails will go away. They seem to pull out the weight card when they do not have an answer. When I was first diagnosed I was not over weight and was in good shape. I unfortunatly have gained 60lbs over the last 21 years and am now overweight. My neuro linked mine to head injuries Ive had over the years, Artilary blasts and a run in with a drunk driver. I do not know if there is any truth to that but its all they had to blame it on.
Robert
oops just realized I voted wrong the correct answer is yes

I am on the I dont know line.

my neuro has been nice so far about my weight has I have an under active thyriod has well has having pos which both make losing weigh extremely difficult so even though my doc talked about losing weight with me he was very nice about it I dont know if this is because he knows how hard it is with my other illness or if because he believes being overweight doesnt cause IIH.

But I am happy because I have been able to lose weight a stone so far. i actually put it down to the meds they put me on cause I cant stop running to the loo and also my face is looking less spotty probly had to many bad toxins and these tablets are getting rid of them.

emma

i was very slim when i first got dignosed, i had been attacked my nuro dr said it was from head trauma but when ever i have to go to hospitail for LP and get seen by any tom dick or harry they tell me its coz i am obbese and i need to lose wait. YES i am heavier now than when i was dignosed 10 yrs ago. these docs do my head in AHH

When my symptoms started I was 17 and weighed 100 pounds. I just recently was diagnosed, but I had the symptoms since age 17. Once the head pain got too great working out was not an option any more. Any time I did work out it made my head throb horribly bad. I don't think being overweight causes this. I think it is more likely that you become overweight BECAUSE of this.

every time I have seen a health professional in relation to IIH I'm weighed and they ask me about my diet and what I am doing to lose weight. I was even told I could probably be bumped up a list for a gastric bypass/band, so yes I do think they focus on this as a weight issue rather than neurological.

Ive always thought of myself as voluptuous im quite tall and i have a rough build, all the women in my family are built this way. When i was diagnosed my BMI was 25, i liked the way i looked and never saw myself as "overweight" or "fat". When i was admitted to the hospital, in the process of being diagnosed, the docs did a bunch of tests because they didn't think i had IIH because i was a healthy weight. Then after i was diagnosed my doc told me to lose some weight and my condition might improve well i got out of the hospital and with everything going on i lost a lot of weight and surprise surprise im worse.. haha!! anyway at my last doc visit i heard some of the other docs talk about me and they called me "the skinny girl with IIH". And theyre neurologists. So they clearly think its a weight issue, because theyre now treating me like the exception, its really upsetting.

(old post I know, I just love this place)

I think it is, even though I havent had much experience with it so far, from personal experience and these stories alone it seems to be stigmatized.

For example, I was telling my father, he said I wasn't 'that big', which, for my family they'll tell you the damn truth.
The lady in the ambulance, said she wouldn't call me fat either.
My mother thinks im a bit chunky but not huge.
My partner sees me as a little chunky too but not massive.
A heap of nurses when hearing why I was in A+E said I wasn't big either, plus the dude checking my blood said my blood wasn't fatty at all and I must eat healthy! (He showed me how to see the fat in the vials of blood it was SUPER cool.)

Ive never had health problems due to my weight or diet, my stamina is fine and I have good strength. The worst thing I have is asthma and that's a childhood thing.

When I was first diagnosed I was told it was because I was 'bigger'.
Then in A+E they had the head of the hospital/neuro unit come down and see me and I heard him say to the students studying me "Weight management is a very crucial part of the treatment."

If it is weight related I can and will happily accept it, but I'd love to see some facts rather then speculation.

But when I saw my GP he said to me "It may or may not help, there is no guarantee that weight loss will stop it, they don't know WHY it happens, hence the name."
So, I guess even in doctors communities no one can agree.

But, I dont know how they expect you to feel better when you beat yourself up everyday for causing yourself this, if that is the case.
If it was that bad, WHY ISNT THERE ANY WARNINGS?
They say all these things happen when being overweight but PTC/IIH is never mentioned!

I think there are a lot of misconceptions about IIH, including the weight issue.  I think it is the weight misconception that leads to thin people not getting diagnosed.  they get diagnosed with migraines instead.  this is why people are always surprised when they actually find a thin person with IIH.  it's not that it's uncommon to be thin with IIH, it's that it's uncommon that the IIH is found in a thin person BECAUSE of the misconception.

IIH is a neurological issue that can be influenced by being overweight.  being overweight can cause many different problems, and IIH is just one of them.
obesity can influence the development of OSA, hypertension, heart disease, diabetes, PCOS, IIH, hypercholesterolemia, etc.  the thing though, is that all of those things are independently related to OSA alone.  and you can have all of those things when you are thin, too.

do they place too much emphasis on weight?  maybe, maybe not.  it certainly doesn't help.  the problem is in assuming that the obesity is causing the problem.  there is some suggestion that obesity follows a diagnosis of IIH, or of OSA, as if it is a result of becoming ill.  still, we should try to lose the weight.  but we shouldn't be made to feel that we caused our own illness.

Well said Deb!!

I think, after reading a few studies, that weightloss will really work for obese people with IIH.

Obesity is the cause of many life threatening conditions, and through the board, weightloss is suggested to obese people as the solution that will have the most benefits. The fact that meds exists that make it possible to deal with a condition instead of losing weight makes it easier to say 'oh great I'll just drink this and not lose weight'. In the case of high cholesterol, there might be a lot of improvement, but it might not work at all. The same goes for high blood pressure, heart conditions, etc.

Obesity might not be the cause of IIH, it certainly isn't the cause of my high cholesterol or my brother's high blood pressure. Still losing weight will probably improve my cholesterol count and alleviate my IIH symptoms.

People can be judgemental. Just ignore them. I am technically overweight, but I dont feel that overweight. Most of my friends who had two children look like I do. I'm the only one suffering from IIH though.

I think doctors should focus even more on weightloss, refer people to dieticians and even recommend drastic diets. In the one study they brought peoples calorie intake down to 460 a day. This gastric bypass is a bit extreme though, there has to be a lot of things to try before you get there..

well, I have met many people who can't seem to lose weight no matter what they do.  I think if one's life or vision is at risk from obesity, then gastric bypass is warranted.  

weight loss can really make a big difference in so many issues.  I lost 20 lb this year, and went from being in constant back pain, to only occasional issues.  I'd like to lose 20 more lb.  this doesn't even seem like that much, compared to some people.  but for me the weight was pretty toxic, my HgbA1C was going up, and after losing just 20 lb it's down to just being elevated by 0.1.  for those who have struggled with weight, the key for me was eliminating sugar entirely.  this includes sugar as rapidly formed by breakdown of foods like bread, pasta and other grains and starches.  rice also must be minimized.

I've read a bit on the ketogenic diet. Sounds like a thing to try. Anyway I dont want to go off topic too much.