Knopfloch: Treatment for hypersensitivity reactions following mast cell flares and abrupt Cymbalta withdrawal?

[Knopfloch]

Hello. I have experienced extreme hypersensitivity to medications, supplements, and foods (almost everything) since the end of 2021. This was precipated by the trialing of two mast cell activation syndrome medications -- cromolyn sodium and xolair -- and abrupt discontinuation of cymbalta. (I had been diagnosed with a histamine intolerance and appeared to improve upon the cromolyn, before ultimately flaring too severely on it to continue. I was only ever stable on it at extremely low doses, but this stability did not seem to last.) Upon introducing the cromolyn sodium, I noticed some increased sensitivity to medication, that ultimately worsened once I tapered off of it. Then, following an injection of 75 mg of xolair at the end of October 21, I lost my tolerance to all medications and supplements. For a while, I retained oral liquid famotidine, but I eventually lost this too. Then, as the xolair wore off, I started reacting to more and more foods, eventually reacting to everything. 

 

Directly after the xolair injection, I began reacting to the 60 mg of cymbalta that I had been taking for several years. I abruptly discontinued the cymbalta because the reactions were so severe.

 

Now I wonder if my hypersensitivity reactions were worsened by the discontinuation of the cymbalta. My immunologist believes that my current symptoms/reactivity are nervous system-mediated, but she does not know how to treat them. She has suggested that medication to calm the nervous system/nerves, such as a benzo, gabapentin, or tricyclic antidepressant, might play a role in treatment, but she is unsure. I am obviously wary of using medication to stabilize, and I react in some form to everything I try. 

 

Has anyone found anything to help manage or treat the hypersensitivity reactions? I struggle to eat, and my symptoms without medication are truly awful. Is the suggestion of using a medication to treat hypersensitivity unreasonable? (I cannot tolerate any mast cell medications or antihistamines.) 

[ChessieCat]

Hello and welcome to SA,

 

We need to know more about your drug history.  Please follow these instructions and create your drug signature:

 

Instructions:  Withdrawal History Signature

 

Once we have more details about drugs, particularly when and how you stopped Cymbalta we will hopefully be better able to assess your situation.

 

This is your own Introduction topic which is the best place to ask questions specific to your own situation and journal your progress.  This will keep your history in one place and mean you won't need to repeat your story.

[ChessieCat]

 

Thank you for creating your drug signature.

 

I have asked the other staff for their thoughts about your situation.

[Altostrata]

Welcome. @Knopfloch

 

On 7/2/2022 at 2:30 PM, Knopfloch said:

Directly after the xolair injection, I began reacting to the 60 mg of cymbalta that I had been taking for several years. I abruptly discontinued the cymbalta because the reactions were so severe.

 

What were these reactions to Cymbalta? Aside from possible hypersensitivity reactions to other drugs, etc., what other symptoms have you had after going off Cymbalta? Why can't you eat?

[Knopfloch]

Hi. Thanks for your reply. It's hard to say what has been hypersensitivity to other drugs (particularly xolair) versus the cymbalta because they happened so closely together. My suspicion is that prior to the mast cell medication trials (cromolyn sodium and xolair), I was already having some autonomic dysfunction (and histamine intolerance and mast cell activation). Then the mast cell meds, especially the xolair, significantly further destabilized me because of underlying autonomic dysfunction. Then discontinuing the cymbalta even further destabilized me. I'm partly interested in this site because of the framing of withdrawal in terms of severe autonomic dysfunction, which I know I have, but which no one has been able to treat because of my severe medication intolerances. My immunologist made some suggestions, which I mention, but I am unsure about them given my history with meds.

In terms of the symptoms I've experienced since the xolair injection and cymbalta discontinuation, they have changed over time, but have included: hypersensitivity to meds (diarrhea, hot flashes, prickling skin, nausea, lightheadedness, head pressure); hypersensitivity to foods (hot flashes, nausea, lightheadedness, head pressure); dystonia; poor circulation; poor coordination; extreme cold. I got brain zaps and vertigo after discontinuing the cymbalta which resolved after a few weeks. I also started experiencing severe drowsiness that is/was often accompanied by waves of panic and sometimes a feeling of being "poisoned" (like alcohol poisoning, don't know how else to describe it). Lately, I've also been having more aching/prickling leg pain, and sometimes prickling all over. After a while, the dystonia and the poor circulation improved, and the hot flash response discontinued, but was replaced by other symptoms (some of the ones mentioned above, as well as the drowsiness and poisoned sensation). I continue to be hypersensitive to very very small amounts of meds and sometimes vitamins and herbs. The food problems are due to my hypersensitivity reactions to food or digestion, despite being on a low histamine diet. The food intolerances have worsened since the xolair/cymbalta discontinuation, and I suspect they have more to do with the xolair having had an initial mast cell stabilizing effect (but destabilizing to my autonomic nervous system), which then wore off, leaving me totally unprotected from the damage that it had done. But again, I wonder about the role of the cymbalta discontinuation too. I have become more and more suicidal over time, but this is probably due to my worsening/protracted physical health/life circumstances more than anything.

 

It may also be worth mentioning that I passed out the day after I started cymbalta for the second time (in 2016). It seems to have a pretty big effect on my nervous system in some way.  I only passed out once, and only experienced pre-syncope again a few years later (when my health really started to unravel, in 2020). 

[Altostrata]

I have no idea what's happening here. You're on an exclusion diet? Why can't you eat?

[Knopfloch]

I have mast cell/histamine/hypersensitivity reactions to foods. I don’t really know what to call it or what the mechanism is anymore. I think part of it is a histamine issue due to sibo and part of it is a mast cell issue, but I think part is a nervous system issue due to who knows what — something that may have been influenced by the xolair event and the cymbalta but may have been pre-existing in some form. In any case, my nervous system is extremely extremely fragile, and I’m not sure how to proceed — if drugs might help, or something else. But I’m really desperate for any kind of relief. 

[Altostrata]

Do you mean when you eat, you get a bad reaction to the food? Or do you not have any appetite?

 

This is a site for tapering off drugs and withdrawal, not specifically for mast cell syndrome or food sensitivities. There are groups on Facebook for this, you might want to ask questions there.

[Knopfloch]

I understand. But I think I'm having a mix of problems, including withdrawal from cymbalta. Since I've thoroughly mined the mast cell and dysautonomia groups and pursued treatment from the mast cell angle, and am more or less out of options, I am trying to see if there is anything to address on the withdrawal front that would improve my health. 

I both have no appetite and I also react badly to food. Sometimes the reactions are immediate and sometimes they are delayed. I also react to vitamins and most medications. My immunologist thinks my reactions are nervous system-mediated -- the nerves are irritated, and then triggering the mast cells. She does not think my reactions are typical mast cell reactions. Since at least some of the theory underlying withdrawal seems to be based in dysfunction of the ANS, I am curious about treatments for this. 

 

[Altostrata]

On 7/2/2022 at 2:30 PM, Knopfloch said:

Now I wonder if my hypersensitivity reactions were worsened by the discontinuation of the cymbalta.

 

Yes, this is possible. What was your adverse reaction to Cymbalta, that caused you to quit it?

 

Please explain more about the sensation of having no appetite. Did this start after you quit Cymbalta?

[Knopfloch]

My adverse reaction to cymbalta was similar to my adverse reaction to other drugs at the time (after the xolair administration): severe nausea, lightheadedness, head pressure, and drowsiness.

 

The lack of appetite was present before quitting cymbalta, but has worsened over time. I think it is also histamine/SIBO related. 

[Altostrata]

I don't think I can suggest anything related to Cymbalta withdrawal that might help your current situation.

 

I don't know if this will help 

 

 

 

[Knopfloch]

Thank you. Is there any scientific literature on the use of lamictal for withdrawal symptoms? Relatedly, is there anything on the use of antidepressants or benzos to help with W/D symptoms?

[Altostrata]

Please read the link I gave you. There is very little about treatment of antidepressant withdrawal, it's barely recognized by the medical profession. Some doctors will prescribe benzos. Nobody has published anything in detail about this.