He couldn't leave the house for months because of his explosive GI system issues (how's that for a euphemism?
)
Most
excellently euphemistic, and
thank you.
Then eventually he went through another black time, but with horrendous panic attacks that were happening 10, 12, 20 times a day and he felt like he was going to die each time (which I mentioned on your other thread).
I had these too. Like your husband, they were constant (I went to the ER twice because I was sure that
this time I
was actually dying) rolling in one on top of the other like waves in a windstorm, except for when they just didn't stop at all, including an episode that lasted for 19 hours straight before I gave up and went to the ER. It's terrifying and relentless and you really think your body, heart, chest are going to give out, and sometimes it's so bad that you actually hope they will. There's no way to describe them adequately.
Just in case, for future reference, what finally helped me, and helped other stuff as well, was taking 50 mg of magnesium glycinate (glycinate is the most bioavailable form of mag that doesn't cause intestinal distress, sticking to the euphemisms here) every hour. Sometimes, when the panic attacks were really bad, I'd take it every 30-45 mins, with no ill effects. It kicked in pretty quickly, a matter of a couple of weeks during which time there were flickerings of improvement, but that was followed by palpable improvement, gradual but persistent.
I did other things as well, including reconfiguring my diet til, like your husband, I was down to about 4 things I knew wouldn't cause reactions. I added more potassium in a half-hearted way til I read a post by
@Mary and increased it a few months ago, adding 1/4 tspn of Ceylon cinnamon (all the rest have huuuuge amounts of coumarin in them so not a good choice for steady dosing) when I read a study that indicated that cinnamon had an inhibitory effect on glutamate/NMDA triggered reactions. I also added 1/8 tspn of sea salt to soothe the adrenal gllands. That also helped.
If you think more info might be helpful, let me know and I'll go back thru notes for more specifics.
But the first major change was brought about by the steady, all-day small doses of magnesium, and then the potassium/salt/cinnamon electrolyte drink first thing in the AM.
Hoping you won't be need this info, but as I said, just in case .....
The way we cope with the really bad times is to focus every gram of energy we have on reading, researching, trying different things. I know this doesn't work for everyone,
I approach this total biatch of an illness in the same way, and for the same reasons, and it's the only other thing that works for me: it gives me a sense of progress and control and reduces the helpless, hopelessness of this. And it frequently yields extremely good information. It was an obscure Asian study that I found on
Hindawi that gave me the info re cinnamon and I wouldn't have found it without desperate, deep, dedicated research in every second that I have even partial brain function.
Now, when I find something interesting I can share it here, and feel that more than my own interests are being served. Sometimes, when I've been POTSing or PEMing badly and don't have much of a brain, the offerings are pretty thin, but I post 'em anyway, cause who knows what will help whom?
It's really saved my sanity. And possibly my life. One of the many miracles of this site.
So you're right ..... you've got to keep punching thru the pain and the confusion and the brain fog and all the little side-dishes that come with that, because there's a small miracle out there somewhere that's going to make a very
big difference, or lead to something else that makes another big difference. And you never know where you're going to find it.
For me, it's really important to keep myself focused on something other than always on how crappy he or I feel (which is not always easy or possible) and to also acknowledge and vent about it periodically. I think venting is really important
I used to underestimate the value of a good wheeze. Not any more. Being able to share the vent with the generous, supportive, understanding members here has made a huuuuge difference. Another one of this site's little miracles.
So keep reading, keep researching, keep experimenting, vent when you need to, and keep moving forward, even when it hurts.
