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 Update. Some good. Some bad

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MarkyMark
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PostSubject: Update. Some good. Some bad   Sun Mar 17, 2013 12:06 am

So its been sice october of last year since my diagnosis, and i thought i would give an update and hopefully stimulate some discussion.

When i was first diagnosed, i became very depressed. As i have mentioned before, my symptoms started in my eyes, with crazy scary visual changes, many of which are with me to this day. As the symptoms progressed, i became more reclusive, i began pushing everyone away, and i essentially became a recluse, living in the outside world only as much as i had to before returning to my dark room and bed where i could shut out the horror for a night. My days consisted of going to work, coming home, eating, and going directly to bed, usually befor 9. My eyes became difficult to move, sore, hot, and continually bloodshot. As time passed, i got a lot of ear pressure, headaches associated with my eyes, and nausea, also associtated with my eyes. My first lp showed a pressure between 32 and 36 (not sure why it was a range). I was put on 500mg of diamox twice a day.

So... For a long time, i just survived. Every day, i would hit a wall; some days the wall was later than others. But i rarely got much past noon without being totally fatigued. My eyes were a nightmare. The world was ugly. All the sparkles and smoke and dark spots made me detest a clear blue sky or a blank white wall. I have to admit i thought about death on a daily basis. I always felt that, given a choice, i would choose a real tumor over the pseudotumor. At least with a tumor you can fight it; you win and you recover or you lose and you die. With ptc, it was just pain and misery and no hope.

My decision to fight came after a very dark encounter with myself and some divine intervention. The reult was that i changed everything i could think of that might influence the disease.

1. I stopped all caffeine. With diamox sodas were out anyway. I started drinking filtered water with organic lemon juice.
2. Because i was 90 percent sure that levaquin triggered my ptc, i started eatimng organic, no antibiotics or hormones. I have continued eating fresh vegetables and fruits. I avoid plastic comtainers and cans as much as i can.
3. For the diamox, i drink orange juice, eat broccoli, and lots of bananas.
4. I got a sleep study. My sleep doc turned out to be one of the best docs i have ever had. He understood ptc and was very optimistic about the treatment of sleep apnea helping my icp. I have been using a bipap machine for the last month and a half.
5. I sleep as much as i can. I dont watch a lot of tv except on the weekends.
6. I have started doing cardio again. 30 minutes a day.
7. Steam room and sauna seem to help if i limiit them to 10 minutes
8. I simply refuse to let stress control me. I know that stress and arguing cause symptoms to get worse.
9. I stopped drinking alcohol.
10. I avoid sugar and have gone low low salt.
11. I take a few supplements. Vitamin c 500 mg every other day. Fish oil. Vitamin d 2000iu a day.


I have slowly started feeling more human but there are still bad days. I feel like i am beginning to claw my way back into life. I listened to my ipod last week. I had stopped listening to music last november. I am going on a trip tomorrow. Since my diagnosis i had not been further away from home than my job, save one trip across state to see a neuro ophthalmologist.

The good news is that my hormones have come back into balance somewhat and my eyes have started feeling a little freer than before. White walls sparkle less. The sky is not as ugly. I know the iih is still there but i can actually joke with people now. Its been a long slow process. This disease has taken so much from me. But i just want to believe it can get better. Talking with people on the forum and a couple of very special people with whom i correspond via email has helped me learn about this condition, given me a path forward, and has given me an emotional lift i cannot describe.

So what helps? I know the low salt and sugar has improved my symptoms. Eating healthier is just the way to go. Exercise has given me a push and a good feeling in general. My eyes have made the most improvement since starting the bipap. Also i think my sleep has been better.

What doesnt work? Alcohol is bad and makes my head really do bad things. I avoided so many different foods for various periods of time. There are some trigger foods, but i cant say that there are any foods that carry a big positive punch. That said, keeping a symptom journal and food journal has helped me identify the bad foods.

Results from the supplements are inconclusive.

Sooooo.... That brings me to the second round of tests....done in mid january.


The mri and blood work were fine as expected. My lp showed a pressure of 21. I was still on diamox and my eyes definitely freed up after the lp so it confirmed the high icp diagnosis.

So here i am. There is more, but this is a start. Hopefully the good days will comtinue to outnumber the bad. Really, i just wanted to see if people had opinions or comments about any of this. Feel free to ask questions, no matter how personal.
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Wylee
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PostSubject: Re: Update. Some good. Some bad   Sun Mar 17, 2013 4:47 am

Mark, you are a champ! And we are in your corner. Cheering you on, rejoicing in your victories, feeling you pain. You do so well with words. Maybe an article........??
I think so many of us don't pay attention to the hints our body's are trying to give us, but you did. You took the time (and energy) to figure out possible triggers and possible solutions. I applaud your tenacity. I hope your improvements continue.
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Sophiasmom
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PostSubject: Re: Update. Some good. Some bad   Sun Mar 17, 2013 4:50 pm

[You must be registered and logged in to see this image.][You must be registered and logged in to see this image.] WOOHOO!!!
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medmisfit
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PostSubject: Re: Update. Some good. Some bad   Tue Mar 19, 2013 7:34 pm

Your story sounds very familiar..I'm so glad you've been able to identify some triggers and move forward..an inspiration to us all!!!
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pennyroyal
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PostSubject: Re: Update. Some good. Some bad   Sat Mar 23, 2013 5:26 pm

Wow, that's one hell of a journey. Your diet and lifestyle changes certainly make me think.
I wonder how many IIH sufferers have a less than ideal diet? Lets face it its not a condition that makes you feel like spending an hour or so preparing a meal. I do tend to eat fresh veg but often the main part of a meal is something that can be thrown in the oven so I can nap while its cooking.
Maybe organic is a small change that would be easy to make and a move in the right direction. It would be interesting to know if any others have tried making changes and the degree of success.
Thanks for your story Markeymark and I hope your health continues to improve
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Heidi
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PostSubject: Re: Update. Some good. Some bad   Sat Mar 23, 2013 5:36 pm

Mark I'm so pleased for you, you've come such a long way! hug Well done you and I know other members will read this and maybe try some of the things you've done. That's how we pass it forward in the IIH community.
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DMajorly
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PostSubject: Re: Update. Some good. Some bad   Sun May 19, 2013 1:21 am

congratulations on getting yourself to a better place!! Smile its so hard to do when your in survival mode and just getting through the day sounds impossible... let alone eating and sleeping well. I would like to know how you are letting go of your stress? I know stress is a very big factor for me and im sure for most people. stress just makes my head pound more and makes everything worse. I try so hard to let things roll off me, but just knowing that I wish I could do more or that I should be doing more makes me stressed, I get anxiety attacks especially in the morning when i feel like hell and im wondering how im going to get the show on the road and work all day long... I usually sit with a cool glass of water and talk myself into getting dressed. I had my VP shunt placed about 2 weeks ago so I hope im going to be stronger now and I have had less head pain already... Due to go back to work soon, and I would really like to know what work for you? I guess I feel like a weakend person since all of this and I lost my ability to relieve my stress! I seem to soak it all in even in my sleep. ugggh!! I do think the vitamin d really helps the mood, its helped me some, i live in oregon and am low in it to begin with so im going to be better about taking that!!
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MarkyMark
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PostSubject: Re: Update. Some good. Some bad   Mon May 20, 2013 6:21 pm

Thank you, but realize that I am still struggling with this crappy disease. my post was just to outline what I was trying to do. My vision is still absolutely whacked out, I am very fatigued, and my eyes are often stiff and sore, which leads to a headache, nausea, and a general feeling of sickness. I wish I could say I have a good way of dealing with stress, but I really don't. I do recommend picking an activity that you used to do but can't anymore, and maybe scaling it down to something reasonable. Just going through the motions gives me comfort sometimes. Also, I used to hate facebook; but now I use it as a kind of therapy. I can't travel or do much physical activity, but I can post those things on my page and interact with friends who can do the activities. It's sad, but at least makes me feel like I am still alive. And I really get a lot of solace from interacting with everyone on the forums and reading their experiences. You have to be careful not to make it a limiting activity, but it helps knowing that we are not alone.
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Heidi
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PostSubject: Re: Update. Some good. Some bad   Mon May 20, 2013 8:16 pm

Try a cold cloth on your eyes and forehead when they're stuff and sore, because it really helps soothe them, I swear by it myself and have done for years. You might have noticed that you have headaches brought on with barometric pressure when the weather is particularly horrible, even activity. We seem to be more susceptable to these kind of migraines, and they can make you feel like your pressure is high.

Before I lost my depth perception and peripheral vision, I was a big drawer, which really helped relieve the stress, now I find myself playing Hidden Object Games, which I have to admit have helped with it, and also my memory. So it's a kind of twofer. I'm not saying Hidden Object Games are for everyone, but I got my sister who also has IIH, and was diagnosed 2 years ago, playing them, and she says it has helped her focus and memory quite a bit.

I have one day a week where I meet my Mother and we have lunch and a stroll around the shops, (often with lots of sitting down), but I feel human and normal on that day. So try and set yourself a day to meet friends for lunch or something gentle but fun. It can be once a week, once every 2 weeks or once a month, but try and make a day that's for you and them.

I know socialising is the hard part, because there are things you're limited to, but look into things that you think you'd all enjoy doing together, but aren't going to leave you sitting on the sidelines exhausted and in pain.

Any activity you do needs to be built up step by step and by trial and error, but it's is achieveable. It's the getting there that is the thing I know. Have a read of our Partners helpful booklets Getting Active and Fatigue and neurological conditions
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PostSubject: Re: Update. Some good. Some bad   Tue May 21, 2013 9:30 pm

Very strong and you are not to let the illness take 100% of your life which is very inspiring!Wish you the very best!
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ameliab
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PostSubject: Re: Update. Some good. Some bad   Sun May 26, 2013 4:08 am

Mark, it seems as though you have really done a ton to help yourself and identify areas in your life that you could change to make things better! The symptom journal is a really good idea! I have printed that out from this website and plan to start using it and possibly take it with me to my next neuro-ophthalmology appointment. I completely understand how depressing this disease can be. Many times you just want to curl up in a ball and hide in the dark from the rest of the world. And yet, we have to be our own best health care advocate! Because, how is there any other way of things possibly improving?! Keep up the good work, we are all fighting this by your side!
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