Hot head (literally)

[Aud E]

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.

[WinterSown]

I sweat on and off,  sometimes with night sweats too. It's rivers or nothing, especially at the base of my skull where it seems to puddle rather than trickle down. It starts with a 'heat bloom' and then I get dewy to drippy. I haven't had a spinal tap but did just have several scans and tests of my neck and head and all they found was enough garbage in my cervical vertebra to get me into PT. For now they attribute the sweating to dysautonomia. I have less problems if I make an effort to eat lots of fruits and veggies that are rich in electrolytes. 

[Aud E]

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.

[WinterSown]

I sometimes get Drop Attacks when I turn to the right and look upwards so this was a pursuit to end them. I have a mixed bag of vertebrae problems, some can pinch a few nerves. PT has helped a lot--I didn't realize how much my neck hurt. I have a lot more mobility and better overall perfusion but it didn't reduce any of the dysautonomia symptoms. I doubt I'll have Leslie Caron's neck when I'm done but I look great in anything with shoulder holes. So there's that. 

[Aud E]

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

[Weary]

Not sure if this will be relevent to what your asking about head specifically, but your saying it actually fogged the car made me think of it. in the last case study of the mast cell book (towards the end, maybe even the last chapter) by affin or whatever his name is, he discussed having a patient who apparently had visible steam coming off of him. that lead affin to search the literature and see what might generate heat to such a large degree. I don't think his answers are particularly correct, but if you like ready everyting even remotely related, you might enjoy having a look at that.

I would think pituatary issues could sure mimim autonomic dysfunction by the way.

[Aud E]

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.

[Weary]

hi. yes, that's the book. the chapter is called something like one last case study. it may even be the very last chapter. how did u know you had intercranial hypertension btw?

[Aud E]

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. 

[Pistol]

@Aud E thank you so much for updating us!!! I am happy that you found not only an answer to your symptoms but also a cure - way to go loosing the weight!! I wish only the best for you!

[Aud E]

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.