Head feels like it will explode daily. Severe cognitive difficulties

My husband has been having very similar symptoms for 2 years now and it’s getting worse. His is on the left side of his head and they see “nothing”. He’s been turned down by Mayo Clinic for help 3-4 times with the latest being the MN facility. We live in Florida and were willing to travel out there 😞 Shands finally told us last week he has (CAA) Cerebral Amyloid Angiopathy. At least there’s a name for it. No cure for him. They typically use an auto-immune suppressant but after age 65 they won’t it’s too risky if he gets sick. You’re young fight for your health!! I’m so disappointed, but we move forward and live each day the best we can.

As far as I can remember, I haven't considered a possible thyroid issue. As for seeing neurologists, I saw one today who proclaimed that this was solely a mental problem and that I needed to get on with life. No matter how hard I push through my symptoms, I never feel any better, so I really don't believe what the neurologist told me. I've already seen 2 different therapists multiple times with no success and have been on multiple antidepressants. I just don't understand how this can solely be a mind thing. Doctors tell me to try and push through these symptoms and achieve goals like other humans do but it is such a strain that it's not worth it. I don't feel any self-satisfaction from achieving anything... all I feel is my head feeling like it will explode.

Hello. The headaches do not go away when I lay down, but I do feel the need to lay down a lot in order to tolerate the pain and pressure. The headaches are the worst later in the day (typically in the evening). I am out of breath when I exercise and I cannot push through the headaches if the exercise is intense. I do walk from time to time which makes the headache harder to tolerate. I don't have a lot of pressure in my life that would act as stressors. I am primarily concerned with my health as of right now.

This is my second post on this subject. I wanted to share some more details on the matter to see if I can get anymore direction/advice.For over a year, I have been dealing with constant head pressure in the back of my head. Sometimes my head aches along with the pressure, and my eyes frequently ache as well, thus weakening my vision. With these head issues come extreme cognitive setbacks. I feel like I have forgotten much of the past, and I can hardly think because I have to try and think through pain and this sludgy head pressure. My head feels like it will explode 24/7. In addition to head/brain symptoms are digestive issues, on-and-off anxiety with no rhyme or reason to it, breathlessness when I talk, and achy limbs. Another thing about the head pressure situation is that it just feels like I can't emotionally connect with anything (like depersonalization maybe?). It doesn't feel like I have the capacity to feel any joy whatsoever. I never experience a complete sense of relief or relaxation. In other words, life is hell and I cannot enjoy it. I can't really get out and do much either thanks to the extreme head symptoms. All in all, life is a huge mental struggle where I am fighting for the will to keep going. I WILL keep going, but it's impossible to ignore the hell I am currently dealing with.I have fallen on my back while wearing a drum once about 3 years ago. Other than that, no injuries. I have plans to see a neurology department somewhat near me (if they get back with me). I have already seen 2 neurologists who weren't of any help. Muscle relaxants, antidepressants, pain killers/migraine medication, and numerous supplements have already been tried and were little to no use. I have seen numerous other doctors (functional medicine, PCP, ENT, etc.) along with 2 ER visits and haven't gotten anywhere. A supine MRI of my brain showed no abnormalities either.I am just fearful of my life. I haven't considered a spinal leak issue yet, although I don't get any relief when I lay down. I could also consider pursuing a cardiologist for blood flow to the brain issues, but I don't really know where to go from here. I just wish my poor brain function (lack of emotions, poor memory, weaker vision) made sense. I don't know if there's anything else that could be contributing to my symptoms?

Hello there,
I have been experiencing something kind of similar. I just came across your post in trying to find answers. I think I figured out what it was for me, I’m praying this helps you. Have you looked into whether your ears are clogged/plugged? It might feel like they’re not if you’re really used to it or you may just not notice it. It all has to do with the eustachian tubes which affect the pressure in your ears which can cause WAY more symptoms than what is listed online.

Please please look into it. Ears often look more normal than they are too.

healthline.com
/health/ear-barotrauma

healthline.com
/health/why-does-my-ear-feel-clogged

This is my second post on this subject. I wanted to share some more details on the matter to see if I can get anymore direction/advice.For over a year, I have been dealing with constant head pressure in the back of my head. Sometimes my head aches along with the pressure, and my eyes frequently ache as well, thus weakening my vision. With these head issues come extreme cognitive setbacks. I feel like I have forgotten much of the past, and I can hardly think because I have to try and think through pain and this sludgy head pressure. My head feels like it will explode 24/7. In addition to head/brain symptoms are digestive issues, on-and-off anxiety with no rhyme or reason to it, breathlessness when I talk, and achy limbs. Another thing about the head pressure situation is that it just feels like I can't emotionally connect with anything (like depersonalization maybe?). It doesn't feel like I have the capacity to feel any joy whatsoever. I never experience a complete sense of relief or relaxation. In other words, life is hell and I cannot enjoy it. I can't really get out and do much either thanks to the extreme head symptoms. All in all, life is a huge mental struggle where I am fighting for the will to keep going. I WILL keep going, but it's impossible to ignore the hell I am currently dealing with.I have fallen on my back while wearing a drum once about 3 years ago. Other than that, no injuries. I have plans to see a neurology department somewhat near me (if they get back with me). I have already seen 2 neurologists who weren't of any help. Muscle relaxants, antidepressants, pain killers/migraine medication, and numerous supplements have already been tried and were little to no use. I have seen numerous other doctors (functional medicine, PCP, ENT, etc.) along with 2 ER visits and haven't gotten anywhere. A supine MRI of my brain showed no abnormalities either.I am just fearful of my life. I haven't considered a spinal leak issue yet, although I don't get any relief when I lay down. I could also consider pursuing a cardiologist for blood flow to the brain issues, but I don't really know where to go from here. I just wish my poor brain function (lack of emotions, poor memory, weaker vision) made sense. I don't know if there's anything else that could be contributing to my symptoms?

I made this account to say I have many of the exact symptoms as you. Depersonalization, constant head pressure emanating from the back of the head, medicines being useless, cognitive difficulties, nothing showing up on MRI, memories fading away, etc.

However, I don’t have a couple of your symptoms. I don’t have breathlessness when I talk or achy limbs. My limbs instead feel like they’re distant, not really numb but less sensitive than before.

School used to be so easy for me, but now it’s a living nightmare. It doesn’t help that I also have ADHD. I find myself only able to focus on my head issue. I’ve spiraled into a deep depression and I don’t know how long I can keep going.

The only thing that helps is getting massages. It seems to calm the pressure down a little. There was one time I got a painful massage (note, the massage didn’t include the head, only the spine up to base of skull), woke up the next morning feeling normal for 3 hours. It was beautiful. I didn’t realize how depersonalized this issue made me feel.

The fact that the massage helped and didn’t include the head makes me think it’s a spinal issue, possibly CCI. Another thing to note is that my issue started soon after I got a phone, so my issue could be due to my head hanging low (but remember, correlation does not mean causation). Maybe try getting a deep massage and see if it helps.

I don’t think CSF leak could be it, as most brain MRIs can tell that. Also, All my blood tests turned out normal, so I don’t think it’s a serum-based deficiency.

If you find anything out about your issue, please let me know. I think I’m struggling with the same issue, and even an ounce of relief would be amazing.

Hello @matthew9324 and welcome to Connect. As I read your post, I see that you have thought about this problem and have tried to come up with an answer on your own. I'm glad that you had some relief with the massage.

You do not mention how long you have had these symptoms. Has it been a long time? Also, have you consulted with any doctors yet?

I look forward to hearing from you again. Will you continue to post as you look for answers?

Thank you for responding. It means a lot. Being able to talk to someone who actually listens really helps.

The symptoms started out as occasional brain fog around a year ago. It was odd, as I could sometimes tell the brain fog came from the back of my head. Eventually, the brain fog became constant. I thought my ADHD meds stopped working, so I started keeping track of those.

This summer the symptoms advanced, now the back of my head often feels under pressure with the constant brain fog. Then I knew there was no way this was my meds (since I wasn’t taking them during summer).

I have only been able to talk to my doctor once about the issue, as he retired. He believed it to be depression. I believe the issue caused that, but that it’s separate from my issue. I’ve started therapy around a week ago.

I’ve talked with a nurse practitioner three times. They order multiple blood tests and refer me to different people (neurologist, hematologist, and a rheumatologist for some reason).

I have been to a neurologist twice. They tell me it’s just migraines. The meds they give me don’t work. Nurse practitioner agrees it’s just migraines. I feel my opinion + symptoms is disregarded by both.

I’ve gotten several blood tests checking for possible headache causes. Magnesium, testosterone, vitamin B, vitamin D, Iron, thyroid, and a couple others I can’t recall. My brain MRI comes up negative.

I tried a chiropractor, but I only went for a couple meetings since I’m rather skeptical of chiropractors. No change in my symptoms.

Next thing I plan on trying is occipital nerve blocks from the neurologist. Since my symptoms seem to come from the back of the head, it could be some weird case of Occipital Neuralgia (weird in that it isn’t painful, only feels like pressure). I’ve talked with someone online who has ON and ADHD. Just like me, they experienced brain fog first and thought their medication stopped working before they got any other symptoms. Also, they could tell their brain fog came from the back of the head too.

If the nerve blocks work, I’ll consider further steps. If they don’t work, I might try to get imaging of my cervical spine and, if any issues are spotted, get them solved through physical therapy or other means.

Thank you. I will try to give updates as best I can.