Aud E

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About Aud E

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  1. Can anyone recommend household cleaning products that effectively clean but do not aggravate dermatitis or autoimmune issues? I know that their are a ton of organic or green products, but many do not clean effectively. I seem to be allergic to most things with fragrances. If there are products you use to clean at home which do not aggravate your health issues, please share.
  2. Aud E

    Hot head (literally)

    Thank you Pistol. I should clarify that it wasn't so much a cure but losing the weight abated the problem for many years. I am having autoimmune-related weight gain now despite eating a clinically clean diet. Heavier than I have been my whole life, the intracranial hypertension has not returned (verified with spinal taps) other than intermittent mild headaches and blurred vision. The most disabling challenge is if I use my hands or arms away from my body for more than a few minutes, my trapezius area swells up and I even get hazy vision. There is some sort of complex happening whether related to cerebral spinal flow, vascular.... My neurologists here feel something more is going on than just thoracic outlet syndrome to that area. I am going to make the financial investment to go to the Cleveland Clinic this fall (scheduled and waiting). We also do not know what is causing small fiber neuropathy and intermittent sinus tachycardia/sporadic blood pressure. It's frustrating but am dusting off, licking wounds and heading back in again to try and find answers. I will share anything we discover. I wish only the best for you too.
  3. Aud E

    Hot head (literally)

    Sorry for the delayed reply. I started getting headaches around the temples, nose ridge, and top front half of my skull, low-grade fevers and hallows arounds lights. An internist found my optic nerve pulsing (when they peer inside your eyes with a scope). I was referred to a UCLA neurologist. He did a spinal tap and my opening pressure was so high that I spurted spinal fluid out of the gauge and across the room. He had never seen that in 12 years of practice. I had already been having acute chronic insomnia by this point as well. The neurologist thought that my being overweight by 40 pounds at that time was causing me to produce too much testosterone (both men and women apparently produce both testosterone and estrogren). He told me I needed to lose 40 pounds immediately and to keep it off for the rest of my life. After losing this weight through exercise, and his prescription of vitamin k, and an anti-diuretic, I was considered in remission simply through eye exam.
  4. Aud E

    Hot head (literally)

    Thank you for that. I will see what I can find....Never Bet Against Occam – The Book by Dr. Afrin? I will check it out. Thank you. It is odd steaming windows when it's summer and there isn't humidity conditions that could explain it and when your area in the car has steamed windows and no one else's does. Thanks again for the book tip.
  5. Aud E

    Hot head (literally)

    I just learned about something called called compensatory hyperhidrosis during this video Overview of Autonomic Disorders by Dr. Brent Goodman. It's 26 minutes long and explains a lot. Overview of Autonomic Dysfunction
  6. Aud E

    Hot head (literally)

    Thanks for your reply. What type of junk did they find in your spine, like osteoarthritic deterioration/disc disease or stenosis? I have areas of these as well and wonder how much this disrupts flow of CSF or blood. In my first tilt table test, they did a cranial doppler and found 20% less blood flow to my brain when upright so again could friction, or the circulation trying to push through, generate heat? I was also told this was dysautonomia but can't find research about generating heat from the head specifically, although everything mentions trouble regulating body temperature in general. I am having resting tachycardia where they suspect POTs and have a longer upcoming tilt table test. Again, thanks for sharing that I am not alone in the "river or nothing". I too get night sweats and eventually hope to see a hormone specialist.
  7. I had intracranial hypertension when I was 26. I am now 46 and have a lot of heat coming from my head. It can happen spontaneously at rest or worsen with activity. I fog the car windows only on my side of the car during any weather. My last spinal tap showed normal opening pressure. I have light and sound sensitivity. I failed the sweat tests during the tilt table but when eating or conversing, sweat will just start running down the sides of the neck from my head. Sweat also appears above the upper lip and at the base of my skull. The heat is so intense that someone jumped back out of the car after walking because I was like a furnace. Does anyone else have this problem and if so, what diagnosis were you given? Is there a doctor anywhere in the US who helped by knowing what this is? Also a brain MRI showed hypoplastic appearance of the pituitary in case you are a medical professional. I get slight headaches namely around the upper crown of the skull and around the nose bridge, tear ducts and temples. Thanks for any input.
  8. OK thank you for the hydration tip.
  9. Thank you both for the info. I also have small fiber neuropathy (possibly ganglionopathy) as well as psoriatic arthritis, psoriasis and enthesitis. The psoriatic arthritis medication Otezla increased neuropathy pain so the next step is biologics. I am glad to hear that the IVIg helped the neuropathy at least. I have confirmation of autonomic neuropathy affecting the cardio system, gastro, temperature regulation/sweating, (have chronic insomnia) plus I have trouble with holding my breath and shallow breathing complicated by EDS hypermobile form. The first tilt table test would be repeated to confirm or rule out POTs, so I posed the question of whether a dysautonomia center next might be able to flesh out whether the underlying causes are viral, autoimmune, or genetic for a more encompassing treatment approach. The first POTs test was solely 10 minutes long and was 3 heartbeats shy of a POTs diagnosis. No matter where I go will involve hotel stay at this point and maxed out out-of-pockets for the year. But if it could improve quality of life...? I have also had benign intracranial hypertension in the past. From reading, it seems one benefit of Mayo clinic is that they test on multiple fronts at once. I just don't know how much more info there is to gain other than the underlying basis and possibly more advanced treatment protocols. Clb75, did you tolerate the IVIg well? One thing I feel to hearing is that quality of life has not greatly improved for many despite all the data and diagnoses so it's unclear whether the science just isn't there yet and to hold out on all the spending till there are further breakthroughs. Thanks again.
  10. The most current discussion string I could find on this question is from around 2013. In current experiences (2017-2018), which dysautonomia center in the US offers the most thorough testing and most advanced treatment? Has anyone had dysautonomia, small fiber neuropathy and an autoimmune condition where IVIg or plasma exchange was more beneficial than use of biologics?