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 Successful IIH Tips

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IIHAmatuerAdvice
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PostSubject: Successful IIH Tips   Thu Mar 09, 2017 7:23 pm

so I've been living with IIH for over 5 years and from my experience with the condition, I've learned the following things
this is a report detailing some of the pitfalls and challenges of the difficulty that is Intracranial Hypertension.
Some of the greater learning curves are: Dieting and managing physical and mental limitations.
If you have IIH you know that there are a variety of foods and things such as coffee and cigarrettes you can't enjoy much less appreciate.

Here is a list of things to keep very seldom and generally avoid: 

Vitamin A:  Still not sure how this creates more production but it does
seem to affect pressure, If I take something high in vitamin a, no doubt it is a noticable difference.  for example almond milk.
almond milk or anything with added vitamin a does leave me with more CSF to drain out during the day.  Even though this is the case I
still eat kale, spinach, papaya, and melon. healthy. yes. but for this condition its not doing me any favors.
So if you really want to keep your head levels comfortable, keep this minimal.

Sugar and Carbs: is probably your biggest challenge to resist when it comes to IIH.  It is costly to improvement just
with a single bite to say a chocolate chip cookie, or a sugar rich soda, or even a bite from a baked potatoe.  The more sugar, or carbs
the more CSF production, its that simple.  not much in the way of really going into detail.  Have dessert and not only will your general state
of wellbeing go down in hours but you will also be creating a habit for sugar.  It is addictive.  more sugar, the more cravings for it.
same thing for carbs.  What I do is create a food diet that is without bread, and generally make the attempt to stay clear of potatoes
yes.  Its hard not to eat a potatoe.  to think that theres mashed potatoes with gravy.
or a baked potatoe. I'll stop right there since I don't want to tempt anyone.  but its hard to give up.  probably more difficult then sweets for most.

Sex:  ... very much so. apparently having an orgasm makes for more of a headache than say a cookie, potatoe or a cigarrette so take your pick.  Obviously not sex.
    this condition wouldn't be so bad if it didn't have this curve ball to throw at us but it does.  Uhm don't have much to say on the subject.
but being a guy.  Its best not to get into the habit, its just simply not on the menu for us who have IIH.  In the case of IIH, freedom isn't free so be patient.
Caffeine and cigarrettes: both increase pressure by CSF production.  best to stick to green tea.

Milk and Cheese:  If your a fan of milk or cheese, or ice cream, or anything dairy related. then this will be a challenge to get rid of out of your diet. but its
not too bad without it. your skin and your weight will improve.  the way milk and dairy tends to affect the viscocity of CSF.  Makes it thick and phlemy
so its not condusive to drainage or keeping your sinuses and head clear.  Really slows the rate at which your head gets better.
salt:  salt has a similar effect on IIH as milk and dairy it makes CSF dense and travels slower through the body.  So low salt equals improvement.
.........
a Note on the Lymphatic System
Now on to the lymphatic system.  If you hadn't had the chance to read up on the lymphatic system its the bloodstreams cleaning system and runs throughtout
the entire body.  It acts as a sewage system as i've read in other sources online and generally made up of a similar density as CSF. Not sure if its the same
material all together but it maybe the same stuff. So theres lots of it and with IIH, your body doesn't move all of the CSF aswell as the lymph (lymphatic fluid).
Notice that when you start to feel a period of extended drainage your hands, your knees, and your back begin to act up and you may feel strange and sometimes uncomfortable sensations.
This is due to the pressure of the lymphatic system.  Note that the lymphatic system is also found within and around bones.  This explains why theres pressure pain.
This effects the nerves in and around the body when the lymphatic body is moved around.  So this explains alot of the odd congestion you may be hearing.
Next I feel that I should mention excercise
this is for general improvement.  Whether its to help the rate of flow of your CSF. this is key. 


On to medications.  so If you hadn't already been notified you have to be careful about what natural supplements and culinary spices you ingest while taking medications.
this goes beyond the IIh but medicine in general. keep natural and man made supplication seperate.
For topamax specificly it is imparative to avoid Turmeric.  It has given me herniated discs throughout my neck and back.  That only resolved itself with time and effort. 
Took many trials and error to keep from making the same mistake of consuming something from a restaurant or something I had purchased with turmeric.
 So check the labels and if your not certain best to abstain.

IIH is all about self control abstinence, and discipline.  Due to the freedoms and simple pleasures like any other ailment can limit in one's enjoyment on life, with IIH
 it is important to find acceptance, strength, self control, and if you don't have emotional support in your life, also very important especially when taking topamax . Like most things better to understand earlier than later.
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PostSubject: Re: Successful IIH Tips   Fri Mar 10, 2017 6:02 pm

Thanks for sharing your experience. It looks like you've learned a lot and identified your triggers, so well done! I do think it's important to remember that everyone responds a little differently to IIH and treatments, so not everything listed will apply to everyone with IIH. For instance..

-Food is a definite trigger for me, the less processed foods the better. However, I do find that caffeine helps at times if I'm not drinking it routinely. I also do well with Turmeric for my arthritis and haven't noticed any changes with my symptoms. Although it's a natural blood thinner, so would make sense. They have also done studies regarding Vitamin A and found that some people with IIH have higher levels, but again, it doesn't seem to be consistent with everyone.

-I unfortunately also have the "exercise intolerance" portion of this disease, so activity is very minimal for me. I've learned my limitations over the years, but it's definitely trial and error. Also, depends on the day. I've found that to be true for anything that increases my heart rate or causes me to strain, like sex.  Remember that anything from sinus problems to using the restroom can increase your intracranial pressure, so you do need to be mindful.

I keep a symptom log and encourage everyone to try it, especially when struggling or trying to identify triggers. There's an example in the Useful Guides and Printout section of this site(http://www.ihaveiih.com/t59-i-have-iih-symptom-log), but I encourage you to personalize it with food, medication, sleep, activity, weather or whatever seems to affect you. If you're interested in food triggers, I suggest the elimination diet. I like this link because it's pretty comprehensive and has audio file available for people with poor vision (http://www.precisionnutrition.com/elimination-diet).

For me it's all a matter of balance..I do more when having a good day and rest when I need it. Although, sometimes a night out with friends and yummy food is well worth the "hangover" of temporary symptoms.

Any other members have a list of triggers or limitations? If so, please share!
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PostSubject: Re: Successful IIH Tips   Sat Apr 15, 2017 6:30 pm

So with medicines like Diamox and Topamax.  They're no joke.


Topamax, is riddled with curve balls from food contraindications to unpredictable effects on one's state, emotionally.


To think its a migraine, anti seizure, bipolar, PTSD, and forgot the word
wait..  carbonic anhydrase inhibitor.  theres no doubt that you will need some
diet adjustments and so with Diamox. 


Both of these are heavy on the body. 


So here is my approved diet for such meds


Beets.  add them to your meals.  It can be anything from a pasta to an omellette,  It will improve your overall ph levels, not at all contradicated for any medication and is good for circulatory and kidney health.


Eggs.  A good source of protein low in phosphorous.  These meds are heavy enough on your gut and kidneys.  A diet high in phosphorous can increase the load on your kidneys. 
I would avoid pumpkin seeds and go easy on the garbonzo beans as these are very high in phosphorous.

Eggs are also low in carbs and make for a good alternative in most meals
to stop your appetite if you have carb cravings.


These spices from my experience have no effect on Topamax:
So I would recommend these to be safe.
Cayenne and other hot peppers, oregano, parsley, bay leaf, lemon peel, rosemary, cinnamon,  pepper and cumin.
 
 
Don't venture into alternative medicine while on Topamax or other pharmacueticals.


once again I will mention the reaction I've had to turmeric.  It herniated my spine and caused for near paralyses.  Mustard and many other canned and preprepared foods have turmeric.  Pickles, and canned jalapeno's also have turmeric. Also note that curcumin is another name for Turmeric.  Mustard seed might also play a part but I don't know since mustard and curry have both these ingredients.



Also very helpful is blueberries and eggplant.


apple cider vinegar and amino acid based salt alternative also make a great alternative to salt.  sometime a simple lemon, but I have found that a combination of the herbs specificly dry bay leaf can give enough flavor that salt is not required to enjoy a meal.


Last edited by IIHAmatuerAdvice on Sun Apr 16, 2017 1:01 pm; edited 3 times in total (Reason for editing : minor edit)
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PostSubject: Re: Successful IIH Tips   Sun Apr 16, 2017 4:13 am

eggs give me brain fog which is my ICP symptom.  might not work for everyone.  I don't know if this is making my brain swell due to an increase in ammonia or sulfur, but I can't have eggs straight.  it might just be the way I metabolize eggs.
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PostSubject: Re: Successful IIH Tips   Sun Apr 16, 2017 12:54 pm

When I meant Eggs its suppose to be eaten with other things, and as a alternative to meat.
Also not to be analytical but your brain doesn't swell, it only increases in CSF pressure. 
Just thinking about it is uncomfortable.  lol? no
But thanks for the feedback. 

If your buying cheap eggs from the store you might want to try organic or high grade free range eggs.

If your getting twice the amount of eggs for the same price of one carton of high quality organic eggs. 
think of the difference in quality.  As the eggs are very different.  One spoils faster and is prone to bacterial contamination the other last longer and is higher in nutrition.  Also low quality eggs are a reason for bad burps and bad gas.  So that could be the reason.
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PostSubject: Re: Successful IIH Tips   Mon Apr 17, 2017 6:38 am

I am a doctor and a biochemist.  metabolism of eggs leads to production of sulfur and ammonia, which in a normal person is easily metabolized before it causes issues.  This is purely a result of the metabolism of the amino acids in the protein in the eggs; the type of amino acids in that protein is not going to be different just because an egg is organic.  if it was different, it wouldn't be an egg.  ammonia can lead to brain edema: this is how people with liver failure die.  ICP can go up from an increase in the volume of blood, CSF, or brain parenchyma.  this is the Monro-Kelli Doctrine.  Pressure is intimately related to Volume according to the equation PV=nRT, hence of course if pressure has gone up it is due to an increase in volume from one of the 3 compartments within the skull.
Alperin showed that in obese women with IIH they have decreased jugular venous drainage and an increase in grey matter volume = brain edema.  Other medical papers have discussed the role of brain swelling in IIH.  if the typical radiological appearance of the brain in IIH shows slit ventricles, then clearly the brain has swollen.
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PostSubject: Re: Successful IIH Tips   Mon Apr 17, 2017 3:18 pm

well thankyou for letting me know that eggs can produce a high ammonia content.
Its never been an issue since I normally eat it without salt and in combination with the herbs I mention so minus carbs, and the blood thinning qualities of the herbs it makes for a decent meal.

Maybe its the addition of the herbs I add that seem to adjust the effect in those gases since a lot of what I add does fight gas.  But thanks didn't know that.


For me its carbs and dairy that really break into my progress with weening down the plateau towards relief.

thanks for the post.  I usually eat a raw egg when I'm trying to cut down on salt and carbs
but I can see that we really must respond differently

Brain edema.  It seems to me that CSF production might actually cause some of it to be absorbed by the brain itself as more CSF is pumped and it has no where to go.  CSF seems to go where ever it can
since its normal routes have been made inoperable.

trying to sound smart I know.  But well thanks for letting me know your a practically a scientist.
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PostSubject: Re: Successful IIH Tips   Mon Apr 17, 2017 7:21 pm

I do think it's important to remember that no matter our backgrounds or experiences we just offer advice for support here and try not to speak in facts or offer medical advice.

Unfortunately, everyone's system works differently depending on a number of factors. I was diagnosed in 1999 and have been involved with this forum for several years. My neuro-ophthalmologist has told me that I've been exposed to "everything" associated with IIH , but that's just based on his experience as a practitioner. I still hear new things all the time. Members have different symptoms and are effected by different things. We even respond differently to treatments, which is one reason IIH is so difficult to diagnose and treat.

Also, remember that a lot of people diagnosed with IIH just have one episode or find a treatment that works for them. We tend to hear from people that are looking for information because newly diagnosed or still struggling themselves, so it makes IIH seem that much worse. I personally was unable to work for a few years between initial diagnosis with remission and treatment of resurgence, but have been able to work full time since 2005 and have a full social life. It hasn't been perfect, but I feel the best I ever have now..I'm here because I do struggle at times and understand that not everyone is so lucky!

My success really falls back to my initial diagnostician that told me I know my body better than anyone, so keep moving on until I find someone that hears me. Every time that I have started to feel bad and symptoms increased, I'd go back to the surgeon and we'd do a revision. Eventually, he started to doubt my symptoms, so I moved onto someone else. I finally arrived at the Cleveland Clinic and found that the tests the other surgeons were using had been outdated. The clinic hadn't used them for my overdraining issue in 7 years! Now, it took a couple years in between the original surgeon and the clinic, but I was on the road to recovery once I found someone that heard me. I still have to adapt different things in my life. For instance, I have learned to stay home if it's storming because I will have more symptoms. Anything that changes pressure will effect your IIH..sinus, allergy, weather, strain..I know Deb has a technical term for this, but I can never remember..lol. It is a new normal and may not be what I planned for my life, but it IS possible to have a full and happy life with IIH.
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PostSubject: Re: Successful IIH Tips   Tue Apr 18, 2017 2:19 am

do you mean barometric pressure?  if that goes down (when it's storming, or at altitude) then ICP goes up.
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PostSubject: Re: Successful IIH Tips   Thu Apr 20, 2017 8:12 pm

I was referring to the term for "strain", I always want to say vascular but I know that's not right..lol.
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PostSubject: Re: Successful IIH Tips   Sun Apr 23, 2017 12:17 am

I wanna say its lymphatic overflow
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PostSubject: Re: Successful IIH Tips   Sun Apr 23, 2017 12:56 am

do you mean, the means by which a change in blood pressure will be translated into ICP, when we are stressed?  in normal people, cerebral autoregulation is supposed to prevent this.  but in us, I think our blood brain barriers are faulty and so BP can affect ICP.  I work hard to keep my BP normalized so that I don't get affected by this.  I can't think of a single word to explain this phenomenon.

definitely I think lymphatics are involved in our issues, and I think this has been and continues to be under-recognized in IIH.  up to 50% of CSF may drain out of the skull via lymphatics that travel along the cranial nerves.  if ICP goes up and the arachnoid granulations are overwhelmed, how does the excess CSF get out?  this is how the optic nerves get swollen.  I think the neuros are ignoring the fact that obviously the other cranial nerves get swollen too, and this must explain some of the sensory problems that we are prone to, the auditory and vestibular issues, the sensitivity to smell.
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PostSubject: Re: Successful IIH Tips   Mon Apr 24, 2017 7:49 pm

Nope, just a term for type of strain that increases ICP. Deb, you mention it all the time and I can never remember. It's not important, just have to laugh at my brain some times.
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PostSubject: Re: Successful IIH Tips   Mon Apr 24, 2017 9:28 pm

oh, Valsalva, you must mean!
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PostSubject: Re: Successful IIH Tips   Tue Apr 25, 2017 9:12 pm

YES, Eureka! LOL..I am writing it down right now. Thanks, Deb!
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