Scattered Among The Leaves

A blog about living with mast cell activation disease.

Mast Cell Disease & The Brain: Neurological and Psychiatric Manifestations

mast-cell-disease-brain

This is a topic I can write many posts on, and probably will, from experience alone. A cursory search of the medical literature turns up so much evidence that mast cells play a role in both neurologic and psychiatric disorders that it’s easy to see why I was in so much pain, both physical and emotional, for my whole life.

Just reading forum posts and talking to a few online friends with this we all seem to have a few of these same brain related problems in common, which is no coincidence. Mast cell disease causes a lot of diverse symptoms because the mast cells squirt out chemicals that cause inflammation and other issues in every part of your body, including your brain. The histamine alone can wreak havoc, causing everything from brain fog to depression, and it is just one of many chemicals your mast cells are dumping.

Once you understand what’s happening it all makes sense and you can finally find relief, like I did, with trigger avoidance and the right medications — mast cell stablizing and blocking medications, that is. Half of the battle for me all these years has been not being able to find the right combination of medicines but I feel like I am finally on track now and even see light at the end of the tunnel, so there is hope!!

Here are a few common things many of us have sought help for or have been diagnosed with that are caused by mast cell disease and are brain related:

 

  • brain fog
  • memory issues
  • headaches/migraines
  • tingling/numbness in extremities
  • general nerve pain
  • depression
  • depersonalization
  • bipolar disorder
  • personality/mood disorder
  • schizoaffective disorder

 

The wrong medicines can make our symptoms far worse, too.

I am not ashamed one bit to admit that over the years from hopping from doctor to doctor looking for answers, I sought out psychiatric help. For about five years I went through the mental health system with no luck whasoever and even was made worse in many ways from the medicines until finally one doctor, who I have to give full credit to, noticed that my psychiatric symptoms were not typical of what he was used to seeing. Part of it was probably because my seizures had returned.

“Have you been tested for temporal lobe epilepsy?” he asked me one day and referred me to a neurologist.

So off to see another specialist who had no answers but did offer to do exploratory surgery if the medicines didn’t work. Yay me! The medicines worked, for a little while, like before, but if I did see any benefit I still felt better in some ways and way, way worse in others. After a few weeks, almost every single time, I ended up covered in hives and extremely sick so I would quit the medicines and go back to avoiding doctors for awhile.

I really tried to dodge the ones who wanted to cut into me, which happened too often looking back.

This merry-go-round is typical for mast cell disease patients, I am learning, which is why I want to bring awareness to this disease by blogging my own experiences. Hopefully someone out there will recognize this in themselves earlier than I did and get to the right doctor (an immunologist!). With trigger avoidance and the right medicines, these and a lot of other symptoms can be brought under control. I am living proof!!

As I said, I’ll write more on this topic in the future. I’m still struggling with a bit of brain fog myself right now but at least the depression and phantom smells are gone. 🙂

 

xo Michelle Dellene

 

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Mast Cell Disease & Chronic Pain: Why, How & What To Do About It

mast-cell-disease-pain

Mast cell disease and pain are synonymous. There are so many levels of pain with this disease it’s hard to know where to begin!

This time last year I was limping and using a cane off and on because I had so much abdominal, rib and hip pain. It radiated down to my knee by the time I began to suspect food allergies, which led me to a mast cell disease diagnosis.

I had been in pain from head to toe for years, though, even before my hip and ribs began to give me trouble. My abdominal pain had been with me for as far back as I could remember and it flared badly during my periods. I thought I had a deformed intestine, or, more likely, endometriosis tissue attached to my bowel. I didn’t think about the fact that I’d had stomach problems my entire life, going back to being hospitalized as an infant with severe abdominal pain, anemia and fainting/seizures. I would later learn that they had diagnosed a milk “intolerance” back then, but only because my mother, in her ignorance, gave me whole cow’s milk as a newborn, cream and all.

So I had a lot of pain digesting as well as during my menstrual cycle, for as far back as I can remember. Whenever I would digest, right before I felt the urge to go I would have to arch my back and straighten myself because it felt like my bowel had a “kink” in it and whenever anything passed through what felt like that mile-long section (but was actually  a few centimeters in reality) it hurt, and it hurt badly. It felt like I was being stabbed to death for about thirty seconds or so and then it passed. It happened all the time and was my “normal” my entire life so I just dealt with it and ignored it, to be honest.

Until I couldn’t ignore it because the pain became too much to ignore.

I finally had a GI scope done a few months ago and it found two diverticuli, one exactly where it hurts which makes sense now because the mast cell disease causes inflammation of my GI tract and so those areas are sore when I’m flared. The food pushing it’s way through probably caused a wound in the area where it gets particularly closed off. So it’s not a kink as much as the whole tunnel gets too narrow from inflammation.

I also had stabbing on my left ovary every single month. My periods were excruciatingly painful and as the years passed my ovulation became painful as well. I was convinced I would need a hysterectomy soon because I thought my bowel would tear if I let it go on.

Now I’m not sure if I even had endometriosis at all. I would doubt I had any diverticuli either if I didn’t see them on my scope, though. Either way, I have none — ZERO — of that pain now that I am off my triggers and on medicines for mast cell disease. It’s a miracle, really, after a lifetime of severe, chronic pain every day and every month.

It wasn’t just my hip, gut and rib that hurt, though. I hurt from head to toe when I was really sick. My ears ached. My nose was tender and sore. I had painful canker sores in my mouth. My cuticles were even inflamed and hurt. I had painful acne and my dermatographia meant if I scratched all the itching I had I would get red, painful welts in return. It hurt to be touched sometimes and it hurt in ways that are hard to describe.

I also would have what I call “emotional seizures” when it got really bad, and I would find myself wanting to cry uncontrollably because of the emotional pain I felt from head to toe as well as the physical pain. It was definitely an emotional release but it never stopped the physical pain. Everywhere and everything hurt. My spleen, my lungs, my eyeballs and even my hair follicles hurt.

Why so much pain? Mast cells leak out chemicals that increase inflammation which causes pain everywhere you are inflamed. They also cause nerves to fire off because they are near them, which causes pain. The degranulation inside the bone causes pain. Mast cell degranulation also lowers your pain threshold, which causes more pain. There are many complex reasons for so much pain with this disease.

Like I said, it even hurt to give or get a hug at times. My bones ached. My joints hurt. My muscles felt as if I had run a marathon. I even got twitching in the nerves like I had run for miles when I hadn’t. The pain seemed amplified, too. Stubbing my toe felt as if I had cut it off when I was flared. Bad dreams became lucid nightmares.

At one point my hip hurt so bad I was sure I’d need a hip replacement. At forty freaking years old!

Over my life I tried many medicines and pain killers to address this pain, which, looking back, tell the story of mast cell disease now that I know more about this disease. I was given birth control, ibuprophen, opioids, even anti-depressants and they all made me sick and most gave me full body hives after I had been on them for a couple of weeks. The only things that worked over the years for me without causing itching, hives and other nasty symptoms was Xanax and Tylenol. I’d later learn both of these are safe for those of us with mast cell disease.

At a certain point Tylenol wasn’t cutting it because this disease comes with a lot of pain but I’m finding that managing it is working for me now that I know what it is. I still use Tylenol (the white capsules only) occasionally if I need it but I’m not finding I need it much. Not even during my periods, which, again, is a complete miracle for me!!

You have no idea.

I only hope this reprieve from the pain lasts. All of it went away, for the most part, as I began adding the right medicines. My pain levels now are way, way down after adding Singulair, but it’s only been three days so I can’t be too hopeful.

Then again, why not be hopeful? I think I can allow myself a bit of hope after a lifetime of pain, right?!

So fingers crossed.

Oh, and I found I can also use steroid shots recently if I need to, without affecting my mast cells. So there’s another way to fight pain if it shows up.

Wait! But what about if I need surgery and pain control that Tylenol and steroids won’t touch? The Mastocytosis Society has a page you can browse that covers different treatment recommendations for mast cell disease, including pain control.

On it they list:

Pain medications – Tylenol Extra Strength (OTC) white tablets only (avoid red dyes, capsules),Tramadol without Acetaminophen, Nubain (Nalbuphine), Lyrica

(Pregabalin), Fentanyl;

So there are options for us as limited as they may be.

Good luck!

 

xo Michelle Dellene

 

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Mast Cell Disease & Medicine: Doxepin & Singulair (Day 3)

mast-cell-disease-medicine

I posted a couple of days ago about adding Doxepin and Singulair (montelukast) to my arsenal of mast cell medications. I am up to seven now and I wanted to update real quick on how I’m doing with the newest two.

DAY THREE – DOXEPIN

I haven’t been completely following the strict rules about taking it yet, meaning I am not waiting a full three hours after I eat to take it and I am not sure I will be able to adhere to that rule, so I may not be getting the full benefit, I don’t know.  What I do know is that my night time itching and waking up stopped now for two nights in a row and my dermatographia is very minimal, which is a good sign. I woke up feeling less groggy, despite taking both Doxepin and Singulair at bedtime. I have more energy today than I’ve had in weeks so I’ll stay on Doxepin to see if I continue to see a benefit.

 

DAY THREE- SINGULAIR

Singulair is supposed to help with the inflammation and I do believe it’s helping. My feet, hip and bone marrow biopsy spot stopped hurting and my gums stopped bleeding since I started taking Singulair. This could be coincidental, because I also just finished my menstrual cycle and the estrogen fluctuations could be calming things down so I will have to stay on the Singulair for an entire month to assess if it is, indeed, helping with the inflammation.

 

So there you have it, an update on using Doxepin and Singulair for mast cell disease. Please remember, this is just my own experience and not meant to be taken as medical advice whatsoever.

I know it is too soon to really tell if things are working so I will have to track how I’m doing on these medicines carefully over the next couple of weeks. Unless I quit taking one or both for some reason, then I will definitely let you know why. So far, though, I am not having any problems but that doesn’t mean much. I typically start to show negative symptoms with all medicines about two weeks in for some reason. So only time will tell if these trigger me. Even if they help at first, if the pills themselves have too much of one of my triggers in it I will begin to degranulate eventually.

I think that’s what they mean between a “leaker” and a “shocker”. I’m a “leaker”, I think. I’m not sure if that’s good, but it does mean I don’t go into anaphylaxis as easily. Both of them suck, though.

🙁

 

xo Michelle Dellene

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