Worsening Symptoms After Unexplained Anaphylaxis

[Estel]

I wrote about some of this in my introductory post, but I'm really struggling and would appreciate some help from the wider community.

My symptoms started in 2010. As far as I know, the only inciting incident was a panic attack. No viral or bacterial infection. No injury. No surgery.

A combination of antidepressants and ADHD medication kept me mild enough to have a reasonably good life until 2021.

Early that year, I started getting hives that over the course of about a week spread to my entire body. I also had a great deal of swelling in my face and decided to go to the hospital.

While in the ER, I went into anaphylactic shock. Basically, my BP cratered, and I momentarily passed out.

I was admitted to the hospital for 5 days. They did extensive testing but didn’t find anything. The cause is still a mystery. Aside from pressure (i.e. from tight clothes) we haven’t been able to identify any triggers.

The hives still recur fairly regularly but are under control with antihistamines.

Since 2021, however, my symptoms have gotten progressively worse.

In addition to fatigue and gut issues, those symptoms have always been primarily cognitive/sensory: memory/concentration issues, light and noise sensitivity, word recall.

These have all increased in frequency/severity to the point of making it impossible for me to continue working on my PhD.

Since a big crash in October, I have also had some new symptoms including vision disturbances, dizziness, tingling in my legs, headaches, spaciness, and greatly increased brain fog.

My energy baseline is also quite a bit lower.

In general, I just feel like I’m slowly fading away. I used to be fairly vibrant, sharp, quick-witted, if a bit easily tired. Now I just feel dull, slow, absent.

I’m trying to look for ways to get better, including on PR. But I haven’t been able to find anyone with a similar experience and I don’t have the scientific literacy for a great deal of the information here.

I do have an ND whose helping me navigate potential supplements.

Any suggestions on where else to go from here?

I’m seeing a neurologist in a couple of weeks to ask about things like CCI and cerebral blood flow. Is there anything else you think I should ask about?

Any general tips on how to approach going to specialists?

I’ve tried to keep this short, but please feel free to ask me anything that you think might be relevant.

I’m really at a loss and would greatly appreciate any help.

 

[Florida Guy]

I suspect the lack of immediate response is mostly due to the complexity of the symptoms you are experiencing. We are all looking for solutions to our own mix of symptoms and everyone seems to be a little bit different in that regard and also different in what things help. There is a thread by hip with recovery stories and what they used to make themselves better. There are lots of individual posts too.

I'd suggest picking a symptom and doing a little search for threads on that subject and trying things that worked for someone else. Thats what I'm doing, most thing you try will probably not work as well as they did for someone else but it may work or help a little. Just keep plugging away and trying things that might help. If I get a good nights sleep I feel much better the next day so just fixing that would go a long way toward improvement

The main thing is to pace yourself and not do more activities in any one day that will push you over your energy limit and cause pem or worse yet, a long crash. Eating good food, taking vitamins and minerals, trying to get enough sleep, this will help maintain your health while you try things that might improve you.

We don't know if you have me/cfs or some related condition that causes these problems. Pushing yourself to do things will bring a crash and bad crashes will make you worse. I had a bad crash end of last year, it was from back to back storms and flooding of the house and being forced to go out and do things but until then I was stable and did not get worse.

 

[Estel]

Thanks for your response @Florida Guy

I do have a ME/CFS diagnosis. Though that doesn't preclude something else being wrong, of course.

I realize that posing the problem in the way that I did assumes a connection that may not actually be there, but the correlation is suggestive.

I'm already pretty good about the basics including eating and sleeping well and pacing. My PEM is, admittedly, a little difficult to predict, but I do my best.

I've also started some supplements for mitochondria and cognitive support based on advice from my ND and this forum.

One of my main issues is brain fog, though, so navigating the forums is a bit difficult. Hence the general request for help.

 

[kushami]

I’m afraid I don’t know much about it, but I imagine MCAS might be suggested as something to investigate. Perhaps you have already considered it.

It also sounds as though you might be experiencing low blood flow to the brain.

 

[andyguitar]

Since a big crash in October, I have also had some new symptoms including vision disturbances, dizziness, tingling in my legs, headaches, spaciness, and greatly increased brain fog.

My energy baseline is also quite a bit lower.

After a crash it is normal for symptoms to get worse.

I’m seeing a neurologist in a couple of weeks to ask about things like CCI and cerebral blood flow. Is there anything else you think I should ask about?

Ask for a Tilt Table test.

 

[Estel]

@kushami I was lucky enough to have my serum tryptase tested while I was in hospital and the numbers did support an MCAS diagnosis. But my allergist said that getting an official diagnosis would be difficult and that it would make no difference to my treatment in any case.

@andyguitar I know it's normal for symptoms to get worse after a crash but I've never had a crash that severe. Nor have I ever had new symptoms after a crash or taken more than a few days to recover. I will ask about the tilt table test, though. Thanks.

 

[kushami]

Hmm, are you sure that having an MCAS diagnosis would not make any difference to treatment? As I said, I’m no expert in that area, but I would double check that.

This website might be helpful, but perhaps you have already seen it.
https://www.mastattack.org/

 

[Estel]

Hmm, are you sure that having an MCAS diagnosis would not make any difference to treatment? As I said, I’m no expert in that area, but I would double check that.

I believe she meant it in the sense that the treatment wouldn't change on the medication side of things. That is, she would still offer me antihistamines and (if that didn't work) biologics.

I have looked into MCAS before, but because of the lack of obvious triggers I got the sense that I would be fairly atypical. I know a lot of people can only eat a very limited number of foods and can't be exposed to a variety of chemicals, but that has never really been the case for me. I do better on a gluten free diet, but that's it. With two minor, very common exceptions, I have also never reacted to any drugs or supplements.

But maybe I'm wrong on that being atypical. I haven't encountered that site yet, so I'll have another look. Thanks.

 

[Wayne]

I have also had some new symptoms including vision disturbances, dizziness, tingling in my legs, headaches, spaciness, and greatly increased brain fog.

I’m seeing a neurologist in a couple of weeks to ask about things like CCI and cerebral blood flow. Is there anything else you think I should ask about?

Hi @Estel -- It seems many of the symptoms you experience are similar to symptoms of Superior Semicircular Canal Dehiscence (SSCD). SSCD is a condition where they may be a hole in this canal (in the inner ear) that normally receives sound coming through the ear drum, and is responsible for balance.

When there is a hole in this canal, or when the bone between it and the brain has "thinned", that whole delicate vestibular system is thrown off. This can also create eye disturbances, as there is constant communication going on between the eyes and the vestibular system.

I think there's a good likelihood I have this, and have a CT scan for my inner ears this coming Wednesday. Many of the symptoms you have could also be a result of CCI, so I think you're on the right track with that. I would also discuss with the neurologist the possibility some of your symptoms could be the result of a cerebral spinal fluid (CSF) leak. It's something I'm also looking at.

I myself am extremely affected by loud or sudden noises, and when "hit" with one, have gone into a state of trembling or shakiness that I've come to believe may be a form of anaphylactic shock. Your mentioning your anaphylactic shock experience made me wonder is it could be something similar to what I'm experiencing.

Anyway, just thought I'd share some of this in case it might be helpful. I could post some links I've bookmarked if you wanted to follow up on it. The Caring Clinic has a number of good YouTube videos that goes into detail on things like CCI, SSCD, and much more. I think the main guy there is Hauser, or something like that. Very knowledgeable.

Good luck, and take care!

 

[Estel]

Thanks @Wayne I've never even heard of SSCD before.

I also have pretty extreme reactions to sudden noises, but nothing like anaphylaxis. That sounds terrifying! For me it's just a pretty extreme startle response that takes a little while to go away. My sister has started saying "bang, bang, bang coming" whenever she's about to bang something out in sink or whack a spoon on the side of a pot to avoid it.

My anaphylaxis, on the other hand, was weirdly slow. It took about a week for my symptoms to develop enough to go to the hospital and almost another to get them to calm down.

I would appreciate any information you have on hand and on the outcome of your CT scan, if you're willing.

Good luck on Wednesday.

 

[Wayne]

I would appreciate any information you have on hand

Hi @Estel -- Below is a couple of links that you might find interesting. This guy strikes me as really knowing his stuff, and speaks my language when it comes to possibly explaining the myriad variety of health issues I've experienced since a serious head injury/whiplash at age 15. Since you also have many of these issues, I think some of the information he shares could be helpful.

Cerebrospinal fluid leaks and ligamentous cervical instability​

Semicircular Canal Dehiscence & Cervical Spine Instability​

 

[Estel]

Thanks so much @Wayne