Chronic headache from CPAP (maybe Diethylene Glycol related)

@janehooten Hello Jane, and welcome to Connect. Dealing with constant headaches sounds pretty tough. I'm glad you have consulted a neurologist and neurosurgeon and that was a wise choice since brain cancer can cause severe headaches. There will be others reading your post, and I wanted to cover other possibilities even though your doctors should have ruled it out. A couple things I could think of would be physical issues involving your neck and cervical spine. If there is a muscle spasm that changes the cervical curvature, or rotates or shifts vertebra, it pulls on the muscles that attach the skull to the neck and can be quite painful. Physical therapy may be able to help if it is a physical cause. I am a cervical spine surgery patient and this has been my experience.

Is is possible that the physical pressure from your CPAP machine is causing your headaches? The skull is jointed and the sutures can actually get shifted and that can cause headaches. A physical therapist who does cranio-sacral work can help with that or perhaps a better fitting mask.

It is good to pay attention to scientific literature, but understand that it needs interpretation by a medical expert who understands it because it may not apply to your situation. Solvents that are soluble through the skin are typically liquids, for example nail polish remover (acetone). I won't use nail polish for that reason because some solvent is absorbed, and some evaporates in the air and causes inhaled exposure and can enter the blood stream through the lungs. I found this link about diethylene glycol poisoning that explains cases of poisoning by ingestion, and absorption through damaged broken skin giving easy access to the blood stream of the DEG liquid. According to the link DEG is used in cosmetics that would be applied to the skin.
https://calpoison.org/news/diethylene-glycol-poisoning
"Diethylene glycol (DEG) is a clear, colorless, odorless liquid with a sweet taste, and is an excellent solvent for water-insoluble chemicals and drugs. DEG is used as a component of multiple different products including antifreeze preparations, cosmetics, lubricants, brake fluids, wallpaper strippers, heating/cooling fuel and as a plasticizer. "

" Dermal absorption has been reported through damaged skin involving a large surface area. In 1985, 5 patients being treated for burns in Spain developed renal failure and died from contaminated topical silver sulfadiazine ointment."

I don't understand the chemistry of how this compound may be bound into solid foam padding of your CPAP machine, but you should not be exposed to liquid DEG. From what I read, DEG helps to dissolve compounds that are not water soluble and may be acting like a binder in the mixture to manufacture the foam. You can always ask the manufacturer because every product has a material safety data sheet that will specify safety issues. In comparison, rubbing alcohol is poisonous if ingested, but is commonly used by your doctor to sterilize your skin before an injection. If it was spread over a large area, on broken skin or a long exposure soaking in it, perhaps it would be toxic under those circumstances.

Has any one tested you for Lyme disease? That also has symptoms of chronic headaches and brain fog. The Western Blot test for Lyme disease is not very accurate and can miss diagnosing Lyme Disease with false negative results. The doctors who are the experts at treating Lyme are in the ILADS group. https://www.ilads.org/ The Igenex lab has more accurate tests. https://igenex.com/ Lyme disease also can affect the heart.

This post on Connect has a lot of information about heart disease that may be helpful in explaining different heart pathologies.
https://connect.mayoclinic.org/comment/699347/
Have you had a consult with a cardiologist? There can be other reasons for an enlarged heart. It should be evaluated and monitored and I hope you are doing that.

Do you have high blood pressure? If you do, that can affect both the heart and the kidneys. An automatic blood pressure cuff is a good investment to keep track of your day to day blood pressure when you are at home and relaxed. A lot of patients, myself included, can get nervous at medical appointments and that raises blood pressure. Your doctor would not know what your normal BP is unless you take measurements and supply the information.

Have you consulted a nephrologist? Sometimes kidney disease is treated with special diets. The reason that high blood pressure affects the kidneys is that filtration of the blood at the capillary level happens in the kidneys. The capillaries are the smallest blood vessels you have and the walls are one cell thick that can be easily damaged by high pressure.

I am hoping that your doctors have made some suggestions to follow up on your health concerns. You may have to become your own advocate until you get to a resolution and a care plan that will address your needs. I know this is a lot of things to check into, so where will you begin?

Thank you very much for your informative reply. You seem to be quite knowledgeable on the subject. I do see a cardiologist and a nephrologist, and do follow their recommendations. I was treated by a Physical Therapist who uses gentle touch therapy, but without any success. I was also tested for Lymes and Covid which were both negative. I do not have hypertension. I have read up on possible causes of my issues which have all been ruled out. Thank you for your info, I will do more research.