IIH/Pseudotumor Cerebri

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funkyou2
funkyou2 Posts: 1
in Fitness and Exercise
I was diagnosed with IIH (or pseudotumor cerebri) within the last few months. I have been on Diamox for about two months and am finally settling in with the not so pleasant side effects that it brings and finding it easier to be more active. My question is, does anyone else with IIH have trouble with workouts triggering headaches? If so, is there a routine that you have found that isn't so triggering?

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  • shonovo
    shonovo Posts: 104
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    i was also diagnosed recently and found that heavy workouts give me headaches as well... i find right now the only workout that works for me without triggering headaches is walking... i hope it will improve over time.. feel free to friend me.. i am always looking for a pseudotumor cerebri support group, since not many people know what it is...
  • starfish0317
    starfish0317 Posts: 5 Member
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    Hello-
    First time writing. I just searched Pseudotumor Cerebri on the message board hoping to find something and found your post! Excited and sad at the same time. I just returned from a three week visit in NY where I was diagnosed with PTC to three flights of stairs at my VA apartment...Just getting up those stairs caused me a lot of issues. I used to walk for at least 45 minutes without huffing and puffing and now I go about 10 and my husband tells me I'm breathing heavy. Just started my Diamox about 2.5 weeks ago and am on 2000mg as of this Thursday... any suggestions?
  • cherryblossombabe
    cherryblossombabe Posts: 113 Member
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    Hey, I know this thread is kinda old but I just searched IIH and found this! ???? I was diagnosed in Jan 2014. On Diamox and having regular Lumbar Punctures to help keep the pressure down.. I too have found that working out isn't so easy anymore! The only thing I can do is use the stationary bike or treadmill, 30 mins tops. Seems to be not to bad when I keep sitting up and not move my head and back around alot lol if that makes sense?.. I have lost 22lbs since march. Need to lose 79lbs all in to be within my healthy BMI. All my weight loss is down to controlling calories as I class my activity as sedentary, I eat 1,200 calories a day and track it on MFP, I try do excerise as and when I can, even just doing leg raises whilst lying in bed.. It all counts! My diary is open so feel free to have a nosey ???? hope y'all are doing ok xx
  • jackieorf9
    jackieorf9 Posts: 3
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    I was diagnosed with IIH 08/2014 and had surgery for a VP shunt 01/20/15 since the meds were not controlling my symptoms at all. I was doing really well at first after surgery, now having some issues. I'm worried I may have a shunt infection, however I am pushing through everything and I still went to workout with my kids. I just did a lazy stroll on the treadmill for 25 min. My kids were so excited after surgery when my headaches were gone, they were hoping to have their mom back. I was hoping they would too and I will be dammed if they won't! I go back to see my neurosurgeon and we will figure this out and I will get onto my exercises. Dr's keep telling us to lose weight, they don't understand how difficult it is when you're in as much pain as we are. If they could only live in our shoes for 1 week, I bet they would find a better treatment!

    Ok, now that I'm done venting, after my surgery since I couldn't exercise yet I went on a diet program through the chiropractor's office my mom works at. It's called Shape reClaimed. It's a type of HCG diet, however it is not available to the general public, you have to get it through a licensed chiropractor. I lost 26lbs and 4 inches around my waist in 4 weeks with just diet alone. And I even cheated a few times! Shhhh, just don't tell my mom LOL! It's not for everyone, but it worked good for me, I'm going to do another round to lose more now that I am healed enough to exercise, I am hopeful that I am not having complications with my shunt and don't need anything drastic and can continue on my exercise path. I am always welcome to others who have IIH and want to share stories on what has worked or didn't, feel free to friend me. :smiley:
  • Lunasash
    Lunasash Posts: 40 Member
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    Hi everyone! I am a ICU nurse who was diagnosed by one of the resident physicians (after being misdiagnosed with vertigo for 12 years). I have been started on diamox since this last Friday. I have been pulling the medical research on IIH and am trying to find a way to control my symptoms and now medication side effects so I can go back to work.
    From the research I have read, it is recommended to lose 5 to 10% of body weight then hold a stable weight and take diamox. The problem with lumbar punctures is that the CSF regenerates very quickly (0.3mL per minute) so in about 30 minutes you can be at a higher pressure again. The good side it that there is symptom relief. They did a lumbar puncture on me and tried about 15 times before they got it... these are doctors I know and work with daily..... I do not recommend them (Except the last person who got it with 1 try).

    I am sure everyone is aware, but avoid any birth control pills for now.... they are horrible and seem to be what triggered my IIH 12 years ago.

    The doc who diagnosed my said to start exercise very easy walking and increase to running because that will control our symptoms the best... I don't know how long this will take me considering every time I take the diamox, I need to go take a 4 hour nap.... I went from being an insomniac to being a sloth.... :)

    If anyone wants the research links, just send me a message and I can get them to you, or I can try to post them later. There are some new research groups taking on this disease since it was officially added to the rare disease registry (They get more grants). The most research is in stenting of the veins instead of a VP shunt.
  • KirstyJK1980
    KirstyJK1980 Posts: 42 Member
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    Hi all, I was diagnosed with IIH in 2011, I lost 4 & 1/2 stone as the Drs suggested but it didn't help, I've since gained 2 stone since I had my gallbladder removed last May. Now I'm finding it even harder to lose the weight. I had stent surgery in February this year but unfortunately it hasn't resolved my IIH. Feel free to add me as a friend
  • brittanycarolfi
    brittanycarolfi Posts: 3 Member
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    Hi everyone! :) I was diagnosed with IIH and have been suffering through the headaches. The doctors say we have to lose weight yet most exercise makes my head hurt worse. So I have joined here to help keep track of what I'm eating and on good days hopefully I can do some type of workout. Feel free to add me as a friend :)
  • von075
    von075 Posts: 3 Member
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    Hi Brittany! I also have IIH/PTC and my doc suggested aggressive weight loss. My insurance covers visits with a nutritionist and she recommended that I try strength training instead of cardio. This really helps me and I can stop whenever I start to feel dizzy.

    Anyway, Stick in there! We will make it out on the other side happier and healthier!! Good luck!

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