u/Hotsun2023

I don't know where to start so I'll jump right in. I've been chronically ill for about 20 years and recently had surgery that has exacerbated my symptoms. While I do not have what is traditionally considered a "terminal illness" I'm currently in a really bad spot where I'm losing a lot of weight and having difficulty eating due to uncontrolled symptoms. I'm trying my best to stabilize myself so that I can take the steps needed to qualify for MAID. One of those is getting into hospice.

I thought I was feeling a bit better today but I'm realizing that it may simply have been a medication masking my symptoms. I may need to move faster than I previously thought and I'm now looking into hospice care. I'm only 41 and, while I knew I would not live to an old age, I did not imagine that things would unravel so quickly that I may not even be able to make these decisions. Fortunately I do not have children but I live alone and have not had much contact with my parents for the last few months. They currently have company from out of town and I'm still recovering from surgery. I do have a caregiver providing part-time in home care.

I guess I need some tips on how to expedite this process. Since I don't have a "terminal illness" I'm not sure how difficult it's going to be to possibly get into hospice care. It also takes months to get in to see my primary care doctor (who I saw a few weeks ago before my symptoms skyrocketed) and I'm worried I will be much worse in a very short time. I'm sorry if my thoughts are a bit scattered and disorganized but I don't know what to do. I guess I'm just looking to be pointed in the right direction.

I recently had surgery and my histamine (MCAS?) issues have gone through the roof. They have been gradually worsening for years now and I knew I'd eventually get to the point where I'd have very few things left to eat. I believe I am finally at that point.

While I still have some hope that my symptoms may plateau when I'm fully healed I know that has not been the case in the past. A round of antibiotics can worsen my HI and I never regain the foods/supplements I've lost.

Out of curiosity, I remembered a young woman who was similar to me. Her name was Jake Picker and she had MCAS from Bartonellosis. I made the mistake of googling her and found out she had passed. Apparently she qualified for the MAID program in CA. I wasn't aware that MCAS was a qualifying condition. I was under the impression that it was only for terminal cancers.

I don't know who her doctors were or how she was able to qualify for the program but I believe it's in my best interest to begin the process now. I am currently trying to get in to see a doctor that is knowledgeable about MCAS but I doubt there is much they can do for me. I had a really good integrative physician years ago that basically predicted all of this and we had a falling out due to her frustration that she could not help.

If anyone has any information or can point me in the right direction I would greatly appreciate it.

I know there's a lot of conversation here about "root cause" and needing to find and treat it to overcome histamine intolerance. While I do believe there is a "triggering event" (SIBO, Lyme, COVID, etc) I don't think there is a root cause for everyone. If there were, we wouldn't see so many people in here looking for answers.

I've had some of the best doctors and seen numerous specialists. I've done any and every type of crazy treatment you can imagine. I've treated multiple infections, mold, candida, you name it. I even had surgery recently (to remove Endo, which has been linked to HI). I have only gotten worse. I even developed HI while on a strong medication that stabilizes mast cells.

I'm currently coming off a flare (I've started to react more to things I hadn't reacted to before my surgery) and it seems like no matter what I eliminate, something else will suddenly start to bother me. I'm already extremely underweight and very concerned about what will happen to me.

It's very tiring to hear about "root cause". For many of us, I don't think it exists. Our immune system and inflammation has gone haywire and, until science finds a way to fix that, we can only treat the symptoms.

So I've been trying to get a flare up under control but it's been challenging. Today I started feeling better but I had some ground turkey and it may or may not have made my stomach issues worse. In the morning when I wake up before eating I take a 40mg Pepcid. At night yesterday I took a Benadryl + melatonin and slept the best I had in two weeks.

Tonight I felt like symptoms were kicking up again so I added a 20mg pepcid to the Benadryl and melatonin combo (keep in mind I had taken a 40mg Pepcid in the morning). I'm now wide awake with heart palpitations, some dizziness and head pressure but my stomach feels pretty good lol. I don't think I'm going to sleep which is a big problem.

I wonder if I overdid it. I'm very underweight so maybe it was too much for me? The Dr that prescribed the pepcid had actually told me to take 2/day (80mg) but it had made me feel sick (nauseous) so I would take 1 as needed and then switched to the 20mg because I tolerated it better. Maybe I shouldn't have taken it with the Benadryl? Anyone had this issue?

I'm assuming a histamine dump lasts longer depending on the quantity of high histamine foods that was eaten. For example, one small Chomps turkey stick will flare me for 24 hrs. So if I eat multiple the flare will likely be more intense and a longer duration?

I recently ate a bunch of stuff that had vinegar in it as well as some dark chocolate (things I previously didn't react strongly to) and I'm going on about one week of flaring. I'm trying to manage with Pepcid and Benadryl but I've never flared up this badly. It was about three days of eating high histamine foods, not in large quantities, but pretty consistently. How long with this flaring last?

I'm currently 7WPO from hysterectomy + Endo surgery and I think my histamine intolerance has gone through the roof. About a week ago I ate several things I had previously tolerated (some had vinegar) and I've been getting progressively worsening symptoms even though I've now eliminated all high histamine foods. I'm on Pepcid for the time being and it helps but seems to be less effective each day.

I'm having a lot of nausea and dyspepsia (acid reflux) as well as a pounding heartbeat and some sleep issues. I know these symptoms can also be hormonal (I would have been on my period this week) and I'm wondering if that's what's behind the flare. Eliminating food doesn't seem to cut it right now even though it helped a lot before. I know healing from surgery can also cause a lot of inflammatory issues involving mast cells so I'm wondering if this is just part of the healing process. I am currently taking some supplements but can't take too many due to the histamine issues.

Anyone else had surgery and felt like this?