newly diagnosed and freaked out
|Subject: Re: newly diagnosed and freaked out Mon Mar 20, 2017 3:17 pm|| |
Hi Kim, Welcome to the forum! I'm glad they've worked so quickly to address your headaches and vision loss..that's really not typical.
Unfortunately, IIH seems to effect everyone a little differently, so it's a lot of trial and error. Processed foods seem to effect me the most, so I try to eat a lot of fresh and raw foods. I also function better as a vegetarian, but it varies for everyone. We encourage members to be as healthy as possible, but understand that it's not always easy. I suggest trying the elimination diet and keep a symptom log to see if you can identify any triggers. You can find some examples in the Living With IIH section under Useful Booklets and Guides. There are also guides for talking to people about IIH that may be beneficial for a discussion with your family and friends.
I think most members have had someone in their life that didn't seem to understand. We don't often "look sick", so that makes it difficult for a lot of people. The medical profession has also been trained to identify weight as main contributing factor, which puts responsibility back on us. Weight loss can help some people, but part of the reason they tell you to avoid Vitamin A is because some people with IIH have a surplus which effects metabolism. Some members have no issue with weight, others gained weight after diagnosis. Again, it really just varies.
I know that it can be overwhelming, so take a look at the site and let us know if you have any questions or concerns. We'll do our best to help you through it!
|Subject: Re: newly diagnosed and freaked out Wed Mar 22, 2017 2:42 am|| |
hi Kim, I'm so sorry you are going through this. we have all been there, unfortunately. people don't have very much empathy, something you find out when you get sick. and with invisible illnesses, sometimes they accuse us of malingering. I have lost family members over this, and it's really fouled up my life on many levels, because of people who I thought loved me who didn't believe me. now I'm raising two kids with no family support, because of it. there's a booklet put out by the invisible disabilities association, called "But you LOOK good!" that might help your husband.
in terms of food, I would avoid all processed food, anything with seasonings and artificial sweeteners. like most salad dressings, sauces, packaged things like rice a roni. don't drink sodas or use Nutrasweet. stick to fruits and vegetables, natural foods. when I was very sick, I couldn't eat animal protein or I would feel so ill it was like trying to wake up from general anesthesia. it might be worth stopping meats to see if it makes a difference for you. I still can't eat eggs. it might just be what my body does with them. a very important thing that seems to make a difference for many of us, is gluten. gluten appears to be able to weaken the blood brain barrier, and this would cause brain swelling. I would definitely recommend going gluten free. it might take a week or so before you could tell the difference. I'm sure they told you to avoid salt: too much salt will contribute to brain swelling. vitamin A can cause swelling too.
right now I have to avoid sugar because if I start eating it again, I have pain all over my body. I don't know if this has anything to do with IIH but it's something you could try.
there are many people on these boards who will swear to the natural eating idea, who will insist it played a huge role in their recovery.
it's important to get to normal weight, but it doesn't always make a difference for some of us. it didn't for me.
try not to cry. crying is a Valsalva and when I was ill crying would give me an instant ice pick headache and I would be sick for 24 hours. a Valsalva is anything that is like grunting, like coughing, straining, even shouting, and it increases ICP. lifting weights can do it, and working out can do it if you are not careful. many of us when very ill are exercise intolerant. stick to walking or yoga, low impact and keep breathing.
|Subject: Re: newly diagnosed and freaked out Wed Mar 22, 2017 2:45 am|| |
the problem with the processed foods etc is the salt and the MSG that is invariably present. this masquerades as other ingredients like "natural flavors". avoid this like the plague.
|Subject: Re: newly diagnosed and freaked out Wed Mar 22, 2017 7:43 pm|| |
Hey kim, let me start by saying that this condition makes people aware that their family are not very patient. You will have to be even though this condition doesn't do anything for your patience to improve for the most part.
But it doesn't mean you have to be stubborn. When I first had the condition it was at its worse. With time and proper guidance, things got better but I still found that family isn't very supportive to hear that their family has a physical difficulty, You will find its a general burden due to selfishness that they're stuck with someone who has a problem rather than be able to persue a perfect problem free life, but it goes to show peoples maturity level. Best thing is to try not to get angry. It really breaks down communication quickly. On the other hand, You'll find out if your husband actually wants to listen to you, and understand that this isn't stubbing your toe on the kitchen door or something.
Its one of the most debilitating conditions that permeates almost every facete of a persons life. If theres no one there to care for that person or believe its bad as the person says it is. Due to a list of symptoms that I won't go into right now, I'd just be preaching to the quire.
I've heard many stories like yours where even when diagnosed family members are not supportive of what should be considered a serious debilitating condition.
If your husband can't understand why your freaking out. That's him, and the doctor needs to explain to him that he would be freaking out. any one would. If you can try to stay in touch with others with the condition. I hope support groups start sprouting for this condition in cities, its definitely needed.
Also it should be understood that people are not very nice. Use your better judgement and take care of yourself. Good thing your on Diamox. They put me on Topomax and the doctor being a medical trained professional didn't let me know that the med would have me lose my emotional stability along with many other problems. Its in one of my posts.
|Subject: Re: newly diagnosed and freaked out || |
newly diagnosed and freaked out
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