My husband has been having troubles of late. All his life he has had various physical ailments of an odd nature starting with spinal meningitis as an infant to allergies to cortisone and nylon to weird to large cystic zits that cover his body to recurring infections of various organs and stones etc. etc. We are not talking about all in his mind type illness, but rather real, visible illnesses confirmed by doctors. We have joked that his medical records should have zebra stickers on it. He is allergic to most antibiotics and more than once I have had to prevent him from taking prescribed antibiotics because the doctor did not look at his medical history close enough.
Late this winter, he had an upper respiratory infection that resulted in a sinus infection and then he was having trouble sleeping. Normal enough so far, but when he continued to have difficulty breathing, the docs thought he had asthma. After eliminating several possibilities including congestive heart failure*, the they discovered that acid reflux was causing lung injury, which was causing him to not breathe well and that was why he was having trouble sleeping. He began to get photophobia, another symptom of severe chronic sleep deprivation.
The docs said that he needed to stop all caffeine, get more sleep. He did. His acid reflux got better, he could breathe, but the photophobia got worse. He continued to have trouble sleeping, and then he got an odd headache. Not the caffeine withdrawal headache. He had pain in the neck, temples, and behind his eyes with no muscle tension and no pressure as in a sinus headache. He began to get hostile, aggressive even, presumably from lack of sleep. He was having trouble controlling his temper, and finally broke down and had a Dew. Lo and behold, headache got better. He felt like himself again. He was still tired, but could now deal with things better. After some discussion with a doctor that our doc recommended, he is tentatively diagnosed with low CSF pressure dating back to his meningitis. Low brain pressure to go with his low blood pressure. Caffeine is the answer. Along with a lot of fluids. More research is being done. We need to find a caffeine delivery method that is non-caloric and doesn’t upset his tummy. Any ideas for a good caffeine delivery method?
*Despite being very overweight his heart is very healthy. He does have low blood pressure, but the stress test was unable to stress anything but his gluteus maximus.
What about something like WaterJoe if it’s available in your area? It would cover the need for additional fluids as well, since it’s caffeinated water.
We are trying caffeine first because he has used it for years and it doesn’t do anything worse than tear up his stomach. He reacts badly to many drugs, so we avoid new ones when possible.
Make sure he eats before he has any No Doze though, it can cause stomach upset in some if the stomach is empty. It does with me. It wouldn’t be “extra” calories if he had a dose with a meal though. Is coffee with something like Nutra Sweet out of the question?
I’d look for some caffeine pills with no unnecessary ingredients. Ask your local pharmacist, he/she can be quite helpful with OTC medications as well as filling your prescriptions.
I hope this helps. I never knew that caffeine has such an influence on CSF production. Now I am curious if this is something to be concerned about regarding my youngest son (he has hydrocephalus).
Yeah, the more I think about it, the more I think maybe you should get his doctor in on this. Too much caffiene isn’t a good thing either, so you might need his advice as to how much to take. Also, I thought just a goodly amount of caffiene could cause stomach upset. To clarify, I thought it was the caffiene itself, not the other ingredients in the No Dose, causing my upset stomach. This was backed up a bit when I drank a Water Joe’s with no food in my stomach. Just want to make sure you are aware that food might be needed no matter what kind of caffiene delivery you use. It might just be me, and he’ll have no trouble, but best to be aware and take precautions at first. Good luck.
His doctor is in on this as you say. She thinks that we should try to see what caffeine does and look to see if treating his acid reflux is easier than finding a drug that will do what the caffiene does with out other side effects. He is to try two weeks of finding a caffiene delivery mechanism and adjust the dose while she does more research on his condition.
I had low brain pressure for ten days after an operation (also associated with having had meningitis). However, I was told that, after 10 days, your body produces enough spinal fluid to reduce the headaches associated with low brain pressure - is it that he will never produce enough by himself? I didn’t eat very much during those 10 days as I was violently ill if I moved an inch but I did drink tons and tons of water as I was told that this helps the body to make the spinal fluid.
I would imagine there are some OTC caffeine pills he could take - however, doesn’t caffeine itself upse the body? I know that if I have very strong coffee, I’ll be ill for hours afterwards.
There apparenly some people that never fully recover from a lumbar puncture gone wrong, especially after having spinal meningitis as an infant.
He has been a heavy caffiene user for years, back into child hood. He also has had stomach upset for years. Until he was recently ordered to stop the caffiene, he never realized the problem. He chalked up the headache and grumpiness to caffeine withdrawal and treated it by having more caffiene. This time it was evident when the withdrawal symptoms faded and left this mess.
He is taking the caffeine pills on a schedule and coffee after meals. He forgot to take the caffeine before bed and woke up in the middle of the night with a headache. He got up and took a caffeine pill and when that kicked in got back to sleep.
The big difference I noticed is his personality. He doesn’t seem the same person without the caffeine.
He often has had urinary tract problems, including stones. He tends to drink a lot of fluids to help prevent infections and stones. He is trying to drink a lot of water now to help with this. He also eats a great deal of salt.
Is coffee with something like Nutra Sweet out of the question?
Good luck.