I completely sympathize with what you are going through.
I also thought about doing gymnastics because I feel more normal when I move a lot. I forced my self to go running everyday for about 6 months because I have a running background. Although the running probably gave me a boost in neurotransmitters, it still didnāt fix much in the long term and I argue that I probably was triggering my head pressure a bit. I was tired a lot and I think my body was spending too much time healing from my workouts instead of healing my brain. I now find that walking is much more helpful because the vascular changes are much less. I can now walk 5-10 miles per day, with very minimal head pressure. Dizziness (rocking and floatiness) is still there but its quite minor.
In the beginning I was very adamant about āpowering throughā, hoping that some minor lifestyle changes such as diet and relaxation techniques and time would just heal everything. It didnāt really work out that way. In the end, I had to make pretty drastic lifestyle changes and take medication (Verapamil). For me, it was critical to take time off work when trying medications. Itās already miserable to go to work and be dizzy, but to have weird effects from the drugs on top of that was too much. Its all too easy to say the medication wasnāt the right one. When you give yourself permission to be a vegetable at home, it can be easier to accept the side effects of medications. It can also be harder in some ways because you have a lot of idle time to thinkā¦
My main advice is to focus on getting rid of the head pressure / aches, even if it makes you change your life drastically. Do anything and everything that helps! And start small with things and give them a week to see changes. Even CoQ10 increased my head pressure for a bit, but I could tell there was a benefit in how I felt so I stuck with it. Always try the lowest possible dose of a medication or supplement. I think people often fail on meds because they donāt start low enough. I always try to start at 1/10 the dose the doctor prescribes. If I notice a slight benefit over the course of a week, then I know Iām on the right track and its just a matter of titrating up.
Diet is tough to change, but I couldnāt deny that it has an effect. Iāve tested it soooo many times. Can I get away with a cup of coffee? Sometimes, yes, but it depends on all the other triggers during the day like stress. The problem is if I get away with it once, I think āsee,
coffee is fine!ā Weeks go by and I find myself with awful head pressure. Then I quit coffee for a few days and feel a lot better. So Iāve just learned to ditch all those things and just eat a really plain and boring diet (low tyramine). How can I be happy with such a restrictive diet? Well over the course of weeks it reduces my head pressure significantly, so yeah that makes me kind of happy (-: I also think of all the people in this world that are just happy to eat anythingā¦
Anyways, sorry for the long post, but anything you can do to slow down your life and take care of yourself would be helpful. Find the small things that help and let those lead you down the path to recovery. Be wary of activities that seem OK or maybe even helpful but might be triggering you long term (running for me). Keep trying meds at low doses to see if they may be beneficial. Recovery is mostly a psychological feat I think. Its so hard having an injury in the very place that is in charge of making decisions to fix the injury. (-:
I personally have never been so humbled in life. I never ever thought I could go through so much suffering and feel so helpless. It feels like the end of life but its not. Iām positive you will make it through eventually. Iām getting there myself I think.