Strugglecat: extreme activation and scared

[Strugglecat]

Hello,

I am so thankful for this site.  Nobody believes me- but suddenly it’s all here, everything I’m experiencing.

 

I have been on and off various Antidepressants for about 20 years.  There are too many for my brain fog to count, but my signature is a pretty good representation of the past 7 or so years.  In 2022 went through a hard divorce after 20 year marriage and that’s when I feel I went off the rails.

 

(July 2024)While taking Rexulti, Lamictal, Vyanse, Prednisone, I went to the ER for high heart rate (180).  After that I would experience episodes of high heart rate but it would resolve.  In Oct. I was prescribed 5mg of Trintellix and that activated me pretty severely.  I went to the ER for high heart rate and went on Metaprolol.  Due to high HR, Psychiatrist stopped Vyvanse and Rexulti CT.  Since then I have been in this nightmare.

 

My “activation” symptoms include a spiked heartrate and I have become extremely sensitive to foods and medicine.  I recently had a reaction to Eggs and pumpkin pie.  A few days ago it was Miralax.  Right now I am in WD from that.  I have been educating myself on what foods and meds affect serotonin in the past few weeks. It seems that every time I am doing ok, something activates me and I’m at square 1 again.  I was going well with no spikes for a while but developed stomach pain from lack of fiber.  If fiber activates me, how can I deal with gastrointestinal issues?  I am very low energy and the slightest exercise elevates my HR a little.  Is there anyone that is dealing with so many reactions just from physical exertion and eating food?

I want to talk to my psych about tapering Lamictal extremely slowly, but my other issues are very worrying.

I have 2 young children and I don’t want them growing up with a sick mom. I also worry about extreme activation symptoms that could kill me- especially the high heart rate.

 

Right now I am on Lamictal and Metaprolol.

 

Thank you so much for reading.  There is a glimmer of hope but haven’t found a post where someone is so sensitive to foods/OTC meds.

Edited October 31, 2024 by Strugglecat
A thank you to all who read

[Emonda]

Welcome @Strugglecat

 

On 11/1/2024 at 12:23 AM, Strugglecat said:

Nobody believes me- but suddenly it’s all here, everything I’m experiencing.

 

I think we've all felt a sense of relief when we found this site and realised what we are experiencing is real.

 

On 11/1/2024 at 12:23 AM, Strugglecat said:

I have been on and off various Antidepressants for about 20 years.

 

Another 'long-termer'. Many of us have been on these things for decades.

 

You've made quite a few changes in a short period of time. That's going to leave you feeling pretty ordinary!

 

Why did you stop  Sertraline/Zoloft?

 

Why did you stop vortioxetine/Trintellix?

 

What happened in July when you first experienced 'activation'? Did you change something?

 

On 11/1/2024 at 12:23 AM, Strugglecat said:

in Oct. I was prescribed 5mg of Trintellix and that activated me pretty severely.

 

So this would fall into the category of 'reinstatment', and is generally best done within 3 months of the last dose. The further out from the last dose, the lower the 'test' amount you try. 5mg would have been too high.

 

When you say activation, do you mean this: Kindling?

 

On 11/1/2024 at 12:23 AM, Strugglecat said:

It seems that every time I am doing ok, something activates me and I’m at square 1 again.

 

Sounds like you are now super sensitive to many things as a result of the various changes: Keep It Simple, Slow, and Stable

 

Recovery from ADs and tapering too fast /  CT is not linear. There are good days and not-so-good days/weeks/months. This is referred to as the Windows and waves pattern of stabilization.

 

On 11/1/2024 at 12:23 AM, Strugglecat said:

n Oct. I was prescribed 5mg of Trintellix and that activated me pretty severely.  I went to the ER for high heart rate and went on Metaprolol.  Due to high HR, Psychiatrist stopped Vyvanse and Rexulti CT.  Since then I have been in this nightmare.

 

More drugs are not often the solution. Time and patience and allowing your body to recover is beneficial.

 

Can you relate to the things on this list: Daily Checklist of Antidepressant Withdrawal Symptoms (PDF)? It sounds like you are experiencing WD from stopping some medications abruptly and perhaps a kindling-type response from reinstating Trintellix.

 

On 11/1/2024 at 12:23 AM, Strugglecat said:

Is there anyone that is dealing with so many reactions just from physical exertion and eating food?

 

On 11/1/2024 at 12:23 AM, Strugglecat said:

There is a glimmer of hope but haven’t found a post where someone is so sensitive to foods/OTC meds.

 

Absolutely...many of us are so sensitive to foods/OTC meds. You need to be very kind to yourself. Eat a plain diet, nothing processed. Go easy on the exercise.

 

Sorry...I really need to go to work now. Hopefully, someone else will jump in. I just wanted to get you started given your message to me.

 

Emonda

[Strugglecat]

(getting a hang of this website and haven’t figured out quotes quite yet)

Why did you stop Zoloft-  Doc wanted me on a “safer” AD during pregnancy.

 

Why did you stop Trintellix?

(2023) Insurance stopped covering
(Oct ‘24)I had a bad reaction after 1 dose, several episodes of tachycardia in one evening, pacing, confusion

 

What happened in July 2024?

I believe the combination of Vyvanse, Rexulti, Lamictal, and Predisone was just too much for my system.  I may have taken Sudafed that morning too.

 

What do you mean by activation?

Oh yes, kindling!  Exactly as described- unable to sit still, pacing, and Tachycardia (in my case).

 

The Tachycardia seems to happen as a reaction to the meds/food rather than withdrawal.  I worry that each time this happens I am sending more serotonin into my brain, putting me back at square one.

 

I just spent like an hour searching symptoms wondering if I should be here- thank you for reassuring me.

Yesterday I ate a granola bar and had diarrhea, nausea, dizziness, confusion, moderate tachycardia, and excessive blinking that developed last night.

 

Today the blinking has turned into a pulsing of the eyes and headache.  The kids were sick with sinus crap so I think this may be the beginning of that.  If it wasn’t for that I would feel okay.

[Emonda]

11 hours ago, Strugglecat said:

(getting a hang of this website and haven’t figured out quotes quite yet)

 

Highlight the bit you want to respond to and press "quote selection".

 

11 hours ago, Strugglecat said:

Oh yes, kindling!  Exactly as described- unable to sit still, pacing, and Tachycardia (in my case).

 

At least we know what it is. I thought that's what you meant.

 

11 hours ago, Strugglecat said:

I just spent like an hour searching symptoms wondering if I should be here- thank you for reassuring me.

 

You're in the right spot 👍

 

12 hours ago, Strugglecat said:

pulsing of the eyes and headache.

 

I've heard others describe this. Xcaretuk talks about pain behind the eye from memory. It's part of WD...the gift that keeps giving, sadly. It's also possible you have picked up a bug from the kids.

 

12 hours ago, Strugglecat said:

If it wasn’t for that I would feel okay.

 

This actually sounds positive...just the one issue causing you problems today.

 

 

 

[Strugglecat]

I just don’t understand my symptoms.

 

Monday- mild headache and eye pulsing 

 

Tuesday- I felt great.  Headache and pulsing went away. I didn’t work too hard.  Just folded laundry and brought it upstairs.  I ordered Indian food- I probably should have stuck with my pasta.  But I didn’t have a reaction to the food until maybe the next day(??? I don’t know).

 

Wed- woke up feeling slightly light headed but no big deal. I was out of my normal protein shake so drank one that was leftover.  Suddenly I was hit with the biggest wave of nausea and dizziness and diarrhea.  For hours I was sick with this.  Finally it subsided enough and I could pick my kids up from school.  I got home and had a protein bar and started getting nauseous and had a small episode of Tachycardia.  These are my “safe” food.

 

I don’t know how I can feel so great one day (no symptoms) and then have such an extreme reaction to food the next.  Is this how windows and waves work?  I thought it was feeling better gradually, not feeling so good one day and so much dizziness/nausea the next.

 

I’ll be more careful with what I eat.  This nausea was next level stuff.

[Strugglecat]

Okay, after some searching I have discovered thread on food intolerances.  It really looks like there is a huge range of sensitivities.   I thought it was tryptophan that was the culprit but maybe it is histamine after all. 
 

I thought I had eliminated histamines as the culprit because I had reactions to some of the foods on the low histamine list.  I seem to be fine with tomatoes even they are marked higher histamine.
 

 

[Emonda]

I eliminated almost anything processed, and it made a big difference to me. It takes some getting used to!

 

 

[Strugglecat]

Its been a while.  Things have settled into a new pattern and looking back it seems my worries have shifted to a different set of symptoms.  Of course, that's how my mind is- find something new to worry about, am I right?

 

So my heartrate issues have resolved themselves.  I take 25mg Metaprolol and it seems to have stabilized things.  I haven't had tachycardia in probably a month.  What has happened is that I've developed POTS symptoms (diagnosed by Cardiologist) and histamine intolerance.  I bought some compression socks and leggings and the POTS symptoms have gotten alot better.  

 

What I still have is adrenaline surges throughout the day and night.  I will feel that adrenaline creeping up on me from my chest, up through my shoulders and into my head.  It makes me panic sometimes but I've gotten better at controlling it.  I know I'm not gonna die from it and it will eventually resolve itself.  Some mornings I very urgently have severe diarrhea and have to pee several times within 15 mins.  This seems typical (adrenaline dump? So to speak haha).  This is probably part of the POTS. 

 

While napping during the day I have the weird cortisol/adrenaline/whatever spikes when I wake up in shear panic and I feel like I didn't sleep at all (cue arrested development voice) I did, in fact, sleep.  I also feel like when I do nap, it screws up the rest of my day- diarrhea, more adrenaline rushes, more POTS symptoms, etc.

 

The histamine intolerance seems to be getting worse (or at least changing its tune).  At first I thought my tachycardia was related to histamine intolerance but I couldn't connect the dots with triggers and symptoms.  Now I've developed an itchy nose and eyes, running nose, and slight face itching.  It -might- get better with antihistamines but I'm so early in this process that I'm afraid that this is just the beginning of MCAS.  I'm SO afraid that this is gonna develop into full blown MCAS.  I'm only a few months into this journey so there's lots of time for things to get worse, right?  right?  I'm following the low histamine diet but I've cut out dairy and gluten to see if the allergy symptoms are less frequent.  I thought that worked but then I had symptoms this morning after eating only a few foods.  I roasted broccoli, sweet bell peppers, and zucchini to mix in with my chicken and rice so I'm wondering if those could be the culprit. 
I also have "coat hanger" pain- this has been going on months before any of this started so I don't know its related. Naturally I'm worried that I have MCAS/POTS/EDS because I had a few symptoms of EDS since I was in high school.  I can see that my anxiety is getting ahead of me- which is why I'm here.  I come to comb these message boards for success stories and people to commiserate with.

One day at a time.  I know I have to concentrate on what is true now and stop catastrophizing about the future.  And believe in Neuroplasticity.   

[ElaineM]

Just wanted to get on here and say…. I have no clue if your body can handle it, but something that has really spiced up my chicken and rice game is coconut aminos braggs brand. It is a soy sauce replacement and it’s delicious! I found mine at a local walmart!

[Strugglecat]

5 minutes ago, ElaineM said:

Just wanted to get on here and say…. I have no clue if your body can handle it, but something that has really spiced up my chicken and rice game is coconut aminos braggs brand. It is a soy sauce replacement and it’s delicious! I found mine at a local walmart!

 Oh yum!  I’ll have to try it when I’m feeling daring.  Today I had fresh basil from my Aerogarden.  I have a feeling I’m gonna run out because of how often I’ve been taking some.  A soy sauce replacement sounds great!

[ElaineM]

It’s so fun to find things we can handle that spices up our boring food😅

[Strugglecat]

Trying not to freak out and to find some truths to cling to so that I don’t spiral.

 

Woke up this morning with a runny/itchy nose, sneezing, etc.  Throughout the day my skin has been prickly, like maybe I’m developing hives.  I am really scared about this histamine intolerance causing hives.  I didn’t really eat anything new yesterday.

 

So what I’m telling myself to calm down:

-You don’t have hives yet.

-It could be dry skin from having the heat on 

-You ate pizza, cake, and other things a little over a week ago and got less severe symptoms

-Tomorrow is a new day.  You’ll wake up feeling better with some other thing to worry about