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 Alternative Treatment Options?

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iihgoaway

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PostSubject: Alternative Treatment Options?    Wed Aug 02, 2017 2:08 pm

Thinking of alternative options to this condition and wanted to know if anyone has had success with acupuncture, homeopathy or craniosacral therapy?
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Sophiasmom
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PostSubject: Re: Alternative Treatment Options?    Wed Aug 02, 2017 5:06 pm

going gluten free makes a difference.  there is some evidence that gluten can make the blood brain barrier leaky.  in my family we get "brain fog" from eating it and that is my major ICP symptom.

my mother and my son get a lot of relief from osteopathic adjustments.  you have to find an osteopath that does the adjustments full time.  go to cranialacademy.org and search in your area, choose one that does it 100%.  my son says that it feels like he does after an LP, after an adjustment.  I think they must be improving CSF drainage somehow.  this is similar to craniosacral but much more sophisticated.

I tried homeopathy - nothing.

it's very important to eat a natural foods diet and avoid preservatives and seasonings that can cause problems, MSG and anything that might be MSG like "natural flavors".  no artificial anything.  take a good quality multivitamin, purified fish oil and magnesium supplementation.  when I first started having symptoms I had relief for awhile with these supplements.  but no vitamin A.  only beta carotene.  also make sure you are not vitamin D deficient and supplement to get levels normal.  most people are deficient nowadays and it's not clear why.
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medmisfit
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PostSubject: Re: Alternative Treatment Options?    Wed Aug 02, 2017 6:22 pm

It seems to vary from member to member.

As far as diet, I find I do best when eating a vegetarian diet that's mostly fresh fruits and vegetables (at least 80%). I also find caffeine helpful, but have Chiari Malformation and think it helps those migraines or low pressure headaches from spinal tap, overdraining, etc. I always suggest an elimination diet to figure out if you have any triggers.

I have found some symptom relief from Bach Flower Essences and just starting cell/tissue salts, but I'm pretty sensitive in general so the energy-based treatments work best for me.

I also find massage, reiki, and acupuncture helpful. It's usually short term, but my specialists have said it's beneficial even if you just get relief during the treatment. They all also agree that cranial sacral therapy is a bad idea, but I think that's because I have a shunt which gives me an open system. Other members have noted benefit with it. I would look through the Alternative & Holistic Therapy posts in the Living with IIH section ([You must be registered and logged in to see this link.]) for more specific information.

I would say all of it helps with my symptoms, but the downside is cost because insurance doesn't cover any of it.
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iihgoaway

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PostSubject: Re: Alternative Treatment Options?    Fri Aug 04, 2017 4:33 pm

Thanks for the feedback.  I am on a paleo autoimmune diet which is incredibly restrictive but has helped me to drop 17 pounds.  I am trying to continue working on the diet but wanted to try lymphatic drainage as well.  I have tried homeopathy but it does not see to work for me either as Sophiasmom pointed out.  I am going to a massage therapist tomorrow who does craniosacral and lymphatic drainage and will let you know how that went.  Still bent on moving back up north where my symptoms were less and more manageable.  :(
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Sophiasmom
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PostSubject: Re: Alternative Treatment Options?    Sat Aug 05, 2017 7:30 am

something that the neuros don't seem to think about:
up to 50% of CSF drains out of the skull NOT just via arachnoid granulations but via lymphatic drainage along the cranial nerves.  I think this explains many of the sensory symptoms that are common in IIH, which the neuros pay no attention to.  but it speaks to the benefit of anything that could be done to increase lymphatic drainage.  when I was very ill exercise was nearly impossible.  once I felt better, however, exercise made me feel much better when I had a mild relapse.  just 5 minutes of brisk exercise could clear my brain fog.  my mother who has all the same symptoms but refuses to have an LP for diagnosis, swears by a machine called a Lymphstar that she uses to make her lymph flow.
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