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 newly diagnosed and freaked out

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kimdemoor

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PostSubject: newly diagnosed and freaked out   Mon Mar 20, 2017 1:35 am

hi, my name is kim and i have a recent dx of iih. i had a lp a week ago tomorrow and the opening pressure was 50. last monday i was started on diamox 1000mg daily.  told to avoid vitamin A and work on loosing some weight. tomorrow i will find out how much vision damage has been done. i currently have very blurry vision and optic never swell in my right eye. i had a ct scan and will be having a mrv this friday. i am still processing all that is going on. this was found when i went to america's best to have my eyes checked for glasses because i was have terrible awful headaches and blurred vision, this was on a saturday and i seen an eye specialist the following tuesday, my pcp on wednesday and the neurologist and ct scan on thursday and the lp the following week. they moved very fast. can someone give me some tips on what foods to avoid? or any other tips on how to live this new normal? my husband is not very supportive and that causes me added stress.  


thank you for your time  thank you
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medmisfit
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PostSubject: 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!

Take care,
Julie
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Sophiasmom
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PostSubject: 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.

Deb
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Sophiasmom
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PostSubject: 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.
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PostSubject: 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.
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kimdemoor

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PostSubject: Re: newly diagnosed and freaked out   Sun Apr 02, 2017 3:21 am

Thank you so much for the responses. They a big help. I will be looking at the different tabs on this site. My headaches are slightly better, about a 3 on the pain scale. Some days worse than others. My appetite is gone. Some days I have to force myself to eat. Must be the diamox. It seems that I am tired a lot. I feel very drained. I often find myself taking a nap after work a few days out of the week. Had a field vision test. My right blind spot has increased significantly and the swelling of the optic nerve has not decreased at all since the lp at the beginning of march. Waiting on the mrv results. Noticing some difficulties with driving, it's like my judgement of distance is off. Go for my mrv results on April 13. Definitely looking into gluten free, have wanting to do that for digestive reasons anyway. Thank you for the support and encouragement
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medmisfit
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PostSubject: Re: newly diagnosed and freaked out   Mon Apr 03, 2017 3:35 pm

The Diamox can be very draining. Make sure someone is checking your blood work routinely b/c you can lose potassium and iron w/ it, which also causes cramping and other issues. I'm sorry to hear your vision hasn't gotten better either. I think depth perception is a struggle for most of us, but pay attention to your surroundings. In the beginning I had huge holes in my peripheral vision and cars would disappear at a certain point, so I rode w/ a co-worker until we got it straightened out. Hopefully they'll make a plan once they have results from MRV b/c doesn't seem like the Diamox is helping that much.

Keep us posted!
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kimdemoor

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PostSubject: Re: newly diagnosed and freaked out   Fri Aug 04, 2017 2:24 am

HI there, I am checking in with an update, I am two week post VP shunt. It was decided that a shunt was needed because headaches where getting worse and field vision testing was also getting worse along with swelling of the optic nerve and the second spinal tap had produced a second pressure of a 49, the spinal tap  the month before was a 50. I also was having extremely bad blurry and double vision. While the double vision is gone, I still have double vision but have been able to wear my glasses again which are helping, where before they would make my vision worse. I am having an extremely hard time with motion/light and have a lot of nausea. I have medication for the nausea which helps. Too much time on the computer, or scrolling on my phone, flashing light or fast movement makes  it worse. I was in the hospital for 5 days. On day 2, I started having 'trumors' / 'shakes' on my left side, mainly my left hand, while I would hold something. I would need to use my right hand to steady my cell phone from shaking. Then my head started to shake as well. They put me on zonegran. The neurologist they called into consult ordered the meds and said that i need further testing but i need to heal first. but he is treating me for simple seizures.  I see my  regular neurologist on Tuesday (in 5 days) and will speak to her about this) I still have the shaking , although not of my head, but on my left arm/hand and not as bad as before i started the meds. I did not have this before the shunt was put in.  I seem to have an increased amount of anxiety, especially at night. I cannot sleep at night. I get an overwhelming feeling of dread and fear that I am going to die while I am sleeping. This is so strange to me because before surgery I was really calm and really didn't have too many fears . I have a strong faith in Jesus Christ and am secure and have no fear of death but this anxiety at dark/night time is so different then I have ever experienced before.  I do have a diagnoses of clinical depression and am on an anti depressdant. I am not depressed. I am going to call my pastor and speak to him but I am wondering if anyone else has had any type of similar experience. Thanks for any input
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PostSubject: Re: newly diagnosed and freaked out   Fri Aug 04, 2017 3:03 am

I am so sorry about these problems since the shunt.  I hope it saves your vision and that your ICP comes down to normal.  I would definitely talk to the neurologist about all of it.  if it is that temporally related to the shunt it must be something to do with it.  although fear of sleeping is something that people with sleep apnea can develop.  I've seen it be subconscious in a lot of people, they just stay up late and resist going to bed.  and sleep apnea can cause IIH, and it gets worse after age 40, so it's something to consider.  how has your husband been lately?  any nicer?
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PostSubject: Re: newly diagnosed and freaked out   Tue Aug 08, 2017 9:14 pm

Ugh, I'm sorry to hear it! I had seizures after my LP shunt was placed, but they said it was caused by losing too much CSF too quickly and were able to treat it with caffeine IVs..at least it improved my symptoms. I wonder if some of it is due to inflammation from surgery, but would definitely start making a list of concerns to discuss with your neurologist.

As far as the fear with sleep, it's understandable. You're dealing with a lot of unknowns right now and anxiety can manifest from depression (and vice versa), especially if you've ever experienced anxiety or panic attacks. It also could be a side effect of the new medications. Definitely worth mentioning!

I hope your symptoms continue to improve as you heal, but keep us posted!
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