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  1. #1
    cori93437's Avatar
    cori93437 is offline Senior Member
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    PB and chronic illness...

    38 yr old female... (Some hormonal issues: skipped and VERY light periods)...
    Medically retired from USAF, student (but was unable to get any online classes for my degree program this semester... so doing NOTHING but hanging out at home)

    Back story...
    Initial chronic illness: injured right lower leg in the USAF in 1997, things got weird and I was diagnosed with RSD/CRPS (basically brain wiring gets f*d up and sends out pain/distress signals constantly without cause/reason) in 1998. The RSD/CRPS spread during 1998 to include the ENTIRE right side of my body. Finally, in 1999 i was approved for, and had installed, a Spinal Cord Neurostimulator. Life saver! Good pain relief and I could leave the opiates (which I've always hated) behind. There have been issues where I needed revisions and have had to go back to the opiates in the interim years unfortunately, and my level of activity id still reduced as I do not have total pain control from the SCS. Soo... yeah, that along with SAD means my weight has crept UP.

    Recent: (5'9", 235lbs)
    End of July 2011... (this is that last time I drove)
    Very tired, having mild headaches almost constant, experiencing confusion, weakness, and disorientation when standing. Progressed to loss of muscle coordination ans muscle weakness, and impaired speech with constant mild headaches and surges of intense headache.
    I saw my GP twice during this period. Was checked for anemia (which I sometimes have a problem with) and other things. Blood work indicated all within range... Cholesterol and all that, BP(my BP is generally pretty low 115/65 range), HR, iron, ect.
    August 9th, 2011... after a simple/slow walk around the grocery during which I had increased confusion/disorientation/loss of coordination and speech impairment... upon returning home headache increased, nausea, things got "far away" and I lost the ability to speak completely.... and off to the ER where I was in and out of consciousness.
    All tests indicated no stroke or tumor, but it was about 12 hours before I could speak or move my arms and legs. Was held for observation about 24 hours and sent home.
    After that I regained movement of arms and legs but could go back into the "zoned" out state pretty easily. Lights and noises were a problem. I never regained perfect speech and it was impaired to some varying degree everyday. Went through three doctors who were either clueless or decided in a 10-15 min interview that I had a "psychological problem". Made an appointment with the Mayo clinic and spent the week before Christmas being very thoroughly poked and prodded... and got a diagnosis!

    So... I have PTC, pseudotumor cerebri (aka idiopathic intracranial hypertension), which means that I either make too much cerebrospinal fluid or that my body doesn't recycle it properly, or both. High intracranial pressure is bad. It presses on the brain and nerves causing disruptions, and can cause permanent eye damage including blindness.
    This condition is primarily found in obese women, though obesity doesn't seem to be the primary catalyst for the disease since it is not found in anywhere near the numbers in the obese male population (ie. some researchers believe that there is a hormonal component that promotes BOTH the PTC and the obesity). So, of course I need to shed some lbs. Losing weight (to a normal BMI), however has not been shown to be a very effect treatment since it only lowers the pressure in about 15% of cases.

    Anyway... I'm on a medication called Diamox (not a great med, but the ONLY effective med for my issue) to reduce the pressure and so far it is helping some, my speech is MUCH better... though not 100% everyday. There are some interaction issues so I can no longer consume baking soda, and a low sodium diet is recommended to prevent fluid retention (which could increase the pressure). Low salt means no packaged foods, no baking soda means no baked goods... the med also makes anything carbonated taste metallic like licking a 9v battery... blech!
    I see these as positive changes in my diet, and the decision to comply has been VERY easy. Losing all your independence does that... did I mention I haven't been able to drive since July! Yeah. Grrrrr.

    I found the PB book after reading an article by Taubes the other day. And I agree with it, it seems like a logical extension of the limits I already have in place. I'm still reading it, but have started to make changes.

    What I was wondering is if anyone has any input on PB and my situation (low salt, hormones, possibility that there is inflammation at play causing this disease, the fact that I haven't exercised AT ALL in months and will have to start out VERY slow... like maybe walking one block because I can fall and hurt myself).
    Ideally I'd like to see remission and stop taking the med, but I do realize that may not be possible. Regardless I want some degree of HEALTH back in my life.
    Current weight: 228

    Ugh... long isn't it.
    Last edited by cori93437; 01-13-2012 at 02:54 AM.

  2. #2
    cori93437's Avatar
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    Really (36 views, 0 replies)... I know it's long but I could totally use a little help here.

  3. #3
    GoLisaGo's Avatar
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    I started a journal called "From Sick to Fit", and joined in the Success Stories in the making. One year ago December I weighed 208 lbs, was hypertensive, hypothyroid, nonalcoholic fatty liver disease, anemic, migraines, IBS, and so on and so forth. A train wreck really. I stopped eating all processed foods, no grains, no added sugar, no legumes, limited dairy. Fresh fish, poultry, beef, veggies and fruit, also butter, cream, coconut oil. I lost nearly 40 lbs, and my health is awesome these days! I still have a way to go to become optimal, but I know this primal lifestyle is the ticket.

    I think if you adopt a strict paleo template for eating, try it for at least 30 days, you will notice some big improvements. After years of eating poorly, it may take a long time to become optimal. But, I firmly believe that hormones can come back into balance, pain lessens, and amazing changes happen if you stick with it. Also, because you have neuro issues, you might want to check out Dr. Jack Kruse's information. He posts here as Digital Surgeon, and he is a NeuroSurgeon. He lost a ton of weight going Paleo and has good information for people who seem to have a lot of health issues. You can google him or find him on this forum under the Leptin Reset "monster" thread.

    You've made a good start by going primal, and reaching out. Keep with it, and you will reap the benefits. It will get better.

  4. #4
    alg2435's Avatar
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    I wish I could help...but I really don't know much past the basics. I do however, know that some serious diseases/illnesses can be cured with the diet, as spoken about in this video Minding Your Mitochondria: Dr. Terry Wahls Cured Her Worsening Multiple Sclerosis with Diet -- Health & Wellness -- Sott.net
    Making adventure out of this thing called life

  5. #5
    missblue's Avatar
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    I have also had great improvements by going primal and it has really helped me with my hormone
    issues. I was having the classic peri-menopause hot flashes, red-face, sweating stuff like crazy last
    year and that has gone way entirely.

    Please check out "Primal Body Primal Mind" and read the hormone sections--really helpful background info
    about how easy it is for things to get out of alignment and how what we eat can help reset things.

    I wish you a speedy recovery and good luck on your journey!

  6. #6
    paleo-bunny's Avatar
    paleo-bunny is offline Senior Member
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    Bit risky offering advice/encouragement when you have a disease I know so little about... but PB seems to be great at reducing inflammation, so if your disease is inflammatory that should help.

    Also, my b.p averages around 110/65 and I know that low salt doesn't sit well with low b.p. I managed to raise my b.p. to 120/80 after getting my mercury fillings replaced (my b.p. initially rose and I lost weight). But now, 33 lbs lighter, it's back down to 110/65 - it could be partly stored mercury/oestrogen released from fat stores as I burn fat. I'm trying to eat more magnesium too as I'm exercising a lot I am probably sweating out quite a bit. I'm eating more salt but that's not making much difference.

    I'm wondering whether histamine dysregulation could be a factor in your condition as it can contribute to excess fluid in various tissues. Symptoms (besides allergic ones) include water retention, low b.p., dizziness, sleepiness after exercise, warm hands and feet, and redness at the extremities, esp. ears, hands and feet. It's something I have, plus I have high intraocular pressure (borderline normal) due to inherited glaucoma. Seems to be histamine related. But this is high pressure in the eyeball rather than within the ocular nerve.

    I've found a low-histamine diet has helped me (PB is mostly fresh foods which tend to be lower in histamine with some exceptions). So this is maybe something to ask your doctors, or do some research yourself on whether histamine could be a factor in your condition. Don't expect doctors to know everything there is to know unless they are very specialised.
    Last edited by paleo-bunny; 01-13-2012 at 08:00 AM. Reason: typo
    F 5 ft 3. HW: 196 lbs. Primal SW (May 2011): 182 lbs (42% BF)... W June '12: 160 lbs (29% BF) (UK size 12, US size 8). GW: ~24% BF - have ditched the scales til I fit into a pair of UK size 10 bootcut jeans. Currently aligning towards 'The Perfect Health Diet' having swapped some fat for potatoes.

  7. #7
    Go Tribe's Avatar
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    I would suggest contacting Dr. Kruse directly - he is a neurosurgeon and most of your issues are neurological in nature...
    Started 9/15/11 at 323 pounds
    2/16/13 at 241 pounds
    Goal is 223 pounds or less

  8. #8
    Shijin13's Avatar
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    Quote Originally Posted by Go Tribe View Post
    I would suggest contacting Dr. Kruse directly - he is a neurosurgeon and most of your issues are neurological in nature...
    +1 to that... Dr K has a unique perspective - on primal/paleo wol - here's his blog on his own experience Living An Optimized Life: The Dr. Jack Kruse Story - Jack Kruse
    And since you've got a little free time - you can catch up on all his blogs & read the MONSTER LR thread... btw if you post in the MONSTER LR thread - he logs on and posts replies as Digital Surgeon - he doesn't give out medical advice but he participates in the conversation...
    While some here on the board love him and some hate him - he's coming from a genuine interest in helping ppl find their health
    Why not kick things off w/a whole 30 and see what changes or you could jump in feet first with Kruse's leptin reset. Either way focus on what you can do - not what you can't. If your only exercise is out to the mail box and back take it. you've been on a long journey already...going 100% primal/paleo will definitely help you - as to how I can't say... everyone here on the board is their own N=1...so ymmv!
    The most depraved type of human being is the man without a purpose. ~ Ayn Rand
    What's your purpose? Mine is Optimal Health.

    Converted to PB November 2010
    SW 190lb
    Leptin Reset Redux (1Sep 2011) SW 170lbs
    25 Sep 2011 160lbs
    1 Dec 2011 158lbs!
    GW ~135lbs
    5'3"
    Mother of 2, and wife to a kick ass husband...trying to contain chaos and havoc on a daily basis

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  9. #9
    cori93437's Avatar
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    Thanks for the responses and suggestions everyone... I'm reading, and reading, and reading...
    And doing just basic PB in the mean time. Medication interactions and other dietary restrictions (lactose intolerance) cut out most non-PB foods anyway, so I decided to go ahead and delete yeast leavened breads and pasta myself and that cuts it all out. Just looking for a route that I can heal with, and I can be comfortable with.

    Right now I struggle a lot with not wanting to eat much at all due to lack of appetite/mild nausea. So that BAB plan sounds extremely intimidating and just honestly painful. Just seeing food on commercials (mostly SAD foods I admit... there is a Taco Bell commercial that I can't even watch because it makes my mouth water in that pre-vomit way) makes me feel nauseous these days.

  10. #10
    jammies's Avatar
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    Quote Originally Posted by paleo-bunny View Post
    Bit risky offering advice/encouragement when you have a disease I know so little about... but PB seems to be great at reducing inflammation, so if your disease is inflammatory that should help.

    Also, my b.p averages around 110/65 and I know that low salt doesn't sit well with low b.p. I managed to raise my b.p. to 120/80 after getting my mercury fillings replaced (my b.p. initially rose and I lost weight). But now, 33 lbs lighter, it's back down to 110/65 - it could be partly stored mercury/oestrogen released from fat stores as I burn fat. I'm trying to eat more magnesium too as I'm exercising a lot I am probably sweating out quite a bit. I'm eating more salt but that's not making much difference.

    I'm wondering whether histamine dysregulation could be a factor in your condition as it can contribute to excess fluid in various tissues. Symptoms (besides allergic ones) include water retention, low b.p., dizziness, sleepiness after exercise, warm hands and feet, and redness at the extremities, esp. ears, hands and feet. It's something I have, plus I have high intraocular pressure (borderline normal) due to inherited glaucoma. Seems to be histamine related. But this is high pressure in the eyeball rather than within the ocular nerve.

    I've found a low-histamine diet has helped me (PB is mostly fresh foods which tend to be lower in histamine with some exceptions). So this is maybe something to ask your doctors, or do some research yourself on whether histamine could be a factor in your condition. Don't expect doctors to know everything there is to know unless they are very specialised.
    Why are you trying to raise your blood pressure? 110 over 65 is perfect.

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