Saturday, March 11, 2017

Autoimmune Disease?

After being rejected by the MCAS specialist at Rush, I decided to ask my support groups again for recommendations of doctors that might be able to help with diagnosis and treatment. I made an appointment (with a strong push from my brother) with a local allergy/immunology doctor that apparently does not necessarily diagnose MCAS, but does treat a few patients for it.
She was very local, and I had no problem getting an appointment with her. So, I saw her Thursday this week.

In order to make sure I presented my case well, my brother and my husband helped me put together a medical and allergy history for the appointment. This is something I probably wouldn't have had trouble doing in the past, but thinking clearly is not my strong suit anymore.

So, this is the history I put together. I keep thinking of things I missed, so it's not totally comprehensive, but I can keep adding to it, as needed.


Medical and Sensitivity Chronology

Summary and Current State

Significant and progressively worsening symptoms throughout my life
  • Diet is restricted to about 15 foods.
  • Unable to tolerate any scented products, cooking smells, and most medications.
  • Frequent symptoms of a reaction include: burning sensation throughout my torso, sudden and intense migraine, sinus pressure, excessive mucous, trigeminal pain, pounding heart, agitation and restlessness, insomnia, increased heart rate and/or blood pressure, sometimes hypotension/bradycardia, vertigo, increased GI motility, bladder pain, facial burning. Most reactions last 3-5 days.
  • In between reactive episodes, I have low blood pressure, low heart rate, low energy, almost non-existent anxiety, constipation, and 10 hours of deep sleep a night. During episodes, I have either low or high BP and HR, excess energy, sometimes seeming manic, increased motility, and 5 hours of restless sleep.
  • Nearly every week I develop a new sensitivity. I'm running out of foods and medicines that I can tolerate. I currently can't tolerate my own apartment, due to old carpeting, brewing coffee, and cooking smells. I stay at my mom's house, and often have to retreat to the bedroom to avoid a trigger. We are unable to cook in the house. I am very isolated, and haven't seen my friends or much of my family in almost a year.
  • Progression has been accelerating recently, and symptoms are often constant at this point, making it hard to identify new triggers.
  • My overall condition has deteriorated, including hair loss and weight loss (BMI 17.8)

Infancy

Allergy to breast milk and dairy formula—projectile vomiting, bright red face, excessive mucous

Childhood

Allergies (all skin test positive) to cats, dogs, grass, trees, dust, mold, mildew—hayfever, runny/stuffy nose, itchy eyes/nose/ears/throat

Teens

Severe allergy to cigarette smoke and other smoke—deep cough, difficult breathing, tight throat, sometimes passing out from lack of air (inhalers didn't help, epi shot did). This was never officially diagnosed as anaphylaxis.

Excessive fatigue, nausea, headaches, narcolepsy, body aches, GERD, IBS

Adulthood

Age 18
Tonsillectomy—reaction to Compazine—dystonic reaction: dislocated jaw, stroke-like symptoms; resolved with Benadryl

Chiari surgery—temporary improvement, but then developed POTS—hypotension, tachycardia, passing out, “reduced consciousness spells”

Age 20: Cranio-Cervical Fusion surgery—Condition worsened after, developed symptoms of EDS

Early 20s
Allergic symptoms became more bothersome, repeat allergy skin testing, but came up negative to everything.

Age 24: Spinal cord detethering surgery and cholecystectomy

Age 26: Fusion Reconstruction; Official diagnosis of hypermobile EDS

Age 29 (2013): Repeat Fusion Reconstruction (2013)
This surgery had multiple immediate complications: bilateral corneal abrasions, difficult intubation with significant inflammation and prolonged sedation, extended periods of unconsciousness, intolerance to most post-op medications.
  • Developed severe insomnia, after years of hypersomnia
  • Developed Inappropriate Sinus Tachycardia, POTS worsened- which was later switched to a diagnosis of Hyperadrenergic POTS
  • Lifelong IBS worsened: constipation, severe bloating, abdominal pain, occasional episodes of diarrhea
  • Developed chronic migraines—failed many treatments over the next 3 years.

Allergy symptoms got progressively worse
  • Started noticing worsened chemical sensitivities
  • Developed a reaction to Dawn dish detergents and spray air fresheners: causing widespread itching, runny nose, itchy skin.
  • Allergic response to dogs became more severe, although allergy testing was negative.

Allergy testing results
  • Rast blood testing showed no allergies.


Age 30 (2014)
Allergy symptoms
  • Major reaction to hardwood floor varnish and excessive heat in new apartment that led to eventually having to move. Symptoms included: full body itching and flushing, tachycardia, palpitations, wheezing, repeated syncopal episodes, intense facial pain, deep cough and feeling of throat closing, blue lips, feeling of doom, and urgent diarrhea. I was eventually carried out of the building, unconscious.
  • Developed severe, intractable facial pain after the varnish episode—triggered by fragrances, smoke, weather
  • Full body pruritus with significant agitation and insomnia became severe.
  • H1 and H2 Blockers plus Singulair helped with the severe itching and hayfever symptoms.

Allergy tests
  • Late 2014, saw Dr. Kentor (allergist) for Mcas testing: Mcas was suggested by my geneticist and my POTS specialist. Tests that were run at the time: Serum tryptase (3.1 ng/mL) and urine 5-HIAA (3.6 mg/24h)

Age 31 (2015):
Allergy symptoms
  • After developing severe itching, bladder pain, runny nose, and agitation after certain meals, a low histamine diet also became essential to control these symptoms.
  • All other sensitivities progressed.


Age 32-33 (2016-Present):

Events
  • In June 2016, I was hospitalized for status migrainosus. Treatments (steroids, Toradol, Zofran, DHE) triggered a major reaction: hypertension, tachycardia, severe internal burning, twitching, agitation, panic. Severe headache/facial pain persisted for 6 weeks, and has returned often since then, almost always triggered by a chemical exposure or a weather change.


Treatments
  • Started Nasalcrom and Gastrocrom in early 2016, but chemical sensitivities continued to progress.
  • Currently taking: Zantac 2-3x/day, Zyrtec, Xyzal, Hydroxyzine, and Gastrocrom for mast cells. Midodrine/Clonidine as needed for dysautonomia. Klonopin and Ambien for insomnia.

Symptoms - Current State
  • Ever since the 2016 hospital stay, I've developed the internal and/or facial burning, agitation, pounding heart reaction to more and more medications: Cymbalta, Nsaids, Prevacid, Nexium, triptans, Tylenol, Sudafed, Vitamin B2, probiotics, and magnesium. I have had to discontinue all of them. I suspect that I am reacting to some of my current medications, as well.
  • After certain foods or smells, I get the reaction of hypotension, bradycardia, white lips, reduced consciousness.
  • A sudden fragrance can cause me to pass out.
  • A carbon filter mask used to reduce reactions to scents, but doesn't help anymore.
  • December 2016, after cold turkey Cymbalta withdrawal, I became so sensitive to everything that I had to remain housebound. I also had to quit teaching piano lessons.
  • Reactions have been increasing in frequency and severity to a larger number of triggers and smaller exposures.
  • In February, 2017, I started developing severe reactions to cooking smells, coffee brewing, and any scent. Even reheating many dishes in the microwave causes: sudden, intense migraine, sinus pressure, and trigeminal pain, pounding heart, agitation, insomnia, increased heart rate and blood pressure, vertigo, increased GI motility, facial burning, internal burning sensation (mostly in my torso- but not related to acid). This reaction lasts 3-5 days.
  • A single mosquito bite leads to hives, widespread itching, and restlessness/insomnia for a week.
  • Exposure to bleach leads to itchy nose, chin, throat, excessive phlegm, wheezing cough, facial pain, hives.
  • Any type of tea causes a hive outbreak.
  • My current medication regimen reduces itching and hayfever reactions, prevents hives, reduces swelling of eyes and lips.
  • My head, body and especially facial pain reaches a 6 most days, and some days reaches an 8 or 9, but I am unable to tolerate a single medication to relieve pain or migraine anymore.

Diagnoses
  • Chiari Malformation--Repaired surgically
  • Cranio-Cervical Instability/Cranial Settling/Retroflexed odontoid/Basilar Invagination--Repaired surgically
  • Occult Tethered Spinal Cord--Repaired surgically
  • Gallbladder disease--Repaired surgically
  • Ehlers Danlos Syndrome - Hypermobility type
  • Dysautonomia
  • POTS with Hyperadrenergic episodes
  • Osteopenia
  • History of serotonin toxicity
  • Irritable Bowel Syndrome
  • Gastroesophageal Reflux Disease
  • Raynaud’s Phenomenon
  • Chronic Migraines
  • Chemical Sensitivities
  • Chronic Dehydration
  • Chronic trigeminal pain/atypical facial pain

*********************************************************************************

So, armed with this 3 page document, summarizing my miseries, I went to meet Dr. Sullivan. (I was also armed with my respirator. Even though I was reassured that this was a fragrance-free office, and that the staff would be unscented, I correctly assumed that would not be true.)

We were in the office for 4 hours. I was in immense pain from fragrances. I collapsed and nearly passed out after a standing pulmonary function test. I did not agree to have skin testing done for allergies, because I have already had negative skin testing done in the past, and I don't believe IgE allergies are my problem.

This led to a lot of waiting time. But, we explained much of my story to a nurse, and gave her my medical history document. She passed it along to the PA, who came in and went through more details of my history. The PA discussed my case with the doctor. The doctor read over the document. Then finally, the doctor came in.

She didn't have a lot of questions left for me. She mostly had a prepared speech to give me. But the first thing she said was, "You've come to the right place."

That was obviously very reassuring to hear. But having been through my fair share of overly-confident doctors, I made sure to keep my guard up. (I have to protect myself from getting crushed!)

Next, she basically went through a presentation for me on autoimmune diseases. She didn't actually use the phrase "autoimmune disease," but described a state of immune dysfunction. She certainly believes this is responsible for most of my problems.

She does not like my long list of syndromes. She'd rather I say that I have headaches than migraines (although I certainly believe that I have both!) She'd rather say I have joint problems than EDS (which seems to be a major lack of understanding of connective tissue disorders). She doesn't love POTS as a diagnosis either.

The reason for her distaste for all of these separate labels seems to be her belief that an immune dysfunction is underlying the vast majority of these syndromes.

She also really doesn't want me to get hung up on the "mast cell activation syndrome" label. Although, she does agree that mast cell degranulation may be responsible for many of my symptoms. She thinks the degranulation is a result of the immune dysfunction.

I believe she is trying a more holistic approach, rather than just focusing on mast cells.

So, she first went through this pamphlet with me, listing all of the triggers and irritants that could be upsetting my immune system. This list included:
  • Allergens--She doesn't think this is a major component for me.
  • Chemical irritants--I am already avoiding everything on this list, out of necessity.
  • Changing weather conditions--Unavoidable, but she suggests that I move south and to the coast.
  • Infections--Not a frequent issue for me, although there could be some chronic, low-grade infection
  • Strenuous exercise--I am already avoiding this.
  • Reflux disease--I am already treating this, as well as following diet/lifestyle recommendations.
  • Medications--She would like me to avoid NSAIDs and beta blockers (already doing).
  • Food--Mainly, she recommends avoiding MSG, sulfites, and preservatives. With my diet though, she hopes we'll be able to expand rather than restrict.
  • Emotional anxiety--I have no work or social life to worry about, so all I can do is manage my anxiety about my health.
  • Hormones--She doesn't believe this is a factor for me anymore, since I have been on continuous birth control to keep my levels steady for 5+ years.
So, for the most part, I'm already following the lifestyle recommendations. Unless I feel like moving to the beach in southern Florida, Arizona, or California, I can't change much. (I told her I can't tolerate the heat, but she reassured me that I will be able to in the future.)

But she does seem to have a plan of action. I will be seeing her every two weeks, and making small changes at each appointment. She has very high hopes for me, and believes that I will be feeling significantly better in just a few months. I am, as always, hesitant to get too hopeful about any treatment, but I'm willing to follow the plan, as long as it doesn't make my life significantly more miserable.

She did a ton of bloodwork, but didn't tell me specifically what was being tested, so I'll have to report back on this one.

She wants me to get back on Vitamin D, which I discontinued along with all of my other supplements after things flared up. She wants 4000 IU daily, in tablet form (not gelcaps)

She wants me to continue Singulair, and says that we may double the dose at the next appointment. This is a Leukotriene blocker, and she says it can reduce inflammation throughout the body, although it is marketed as an asthma medicine. I've been on it for 2 years already.

She wants me to drastically reduce my anti-histamine usage. She believes some of my daily symptoms, including random bouts of anxiety, are side effects of too much anti-histamines. This one is difficult, because I am soooo itchy without them, but I'm making my best effort.

Next, she wanted me to add Culturelle Health & Wellness. She was very impressed that I was aware that this one is a better choice, because it doesn't contain inulin, which is a prebiotic. I have been on probiotics for several years, and I have tried this one before. But I had actually been planning on trying it again. I even bought a box of it just a week ago, so I was glad to see we agreed on this one.

Next, she would like me to decrease my dosage of Prilosec. This is unfortunate, because after my body could no longer tolerate Prevacid or Nexium, I finally found that I could tolerate the prescription strength Prilosec. I also went 3 months (November-February) without any drug in this class. The heartburn was absolutely miserable. And I didn't get to tell her this, but my grandma died of esophageal cancer, so heartburn is not something to take lightly in my family! Also, both of my parents and one of my brothers need a PPI to control the GERD. I've tried going without before, but it seems to always come back. I understand that it is not good to use long-term. But, it feels unavoidable. I am glad that she is trying to ween me down, and I will try my best to cut my dose in half, and see if it is tolerable. I just know that lifestyle measures may not be enough with such weak connective tissue in my gut. Maybe if I switched to an all liquid diet? But if I'm eating solids, I'm not sure it will be possible, since her plan is to get me off of them completely again.

Finally, she recommended Vanicream products for skin care. I already use their shampoo, but I will try switching for my face to see if it can clear up the rash I always have on my cheeks.

She was running short on time, and talking very quickly with few pauses. So, I couldn't add much or ask many questions. I hope this will be better next time I see her.

I don't know if she really understands that my EDS makes me a medical zebra. That I may not react as expected to changes. And that simply putting me on the autoimmune protocol she uses with her patients may not be practical. But I really appreciate that she wants to change things gradually, since my body can't handle big changes.

It sounds like she has a lot more in mind to change at upcoming appointments. And of course, we'll have to see if anything shows up on the blood work. I'm so used to blood tests coming up perfectly normal that I never expect much from them. But who knows what she tested for? Maybe something that hasn't been checked before. Maybe, this whole time, I've had some autoimmune disease driving my symptoms. I'm certain I've been tested before for most things, but not everything.

Believe it or not, I actually liked her. I really did. I am very careful to not get my hopes up when someone says they can change my life. Because even as things have evolved over the years, this has always been my life. Sickness and downward progression. I don't love the over-confidence. But it is actually reassuring to hear a little bit of it. And it's really nice that someone wants to manage things, when most doctors seem to just shrug and turn me away at this point.

But, I am absolutely dreading going back into the office. My facial pain is so severe since the appointment. How can you make yourself walk into an office with a level 3 pain, knowing you'll come out with a level 8? I did it once, but every two weeks? I don't know how to force myself to do it. It is just so much suffering. I assume my next appointments will be shorter, but I don't know what can be done to expose me to less fragrance. I guess I wear the respirator the entire time, even when I don't smell a strong scent. But the respirator itself irritates my facial pain. I can call again, but they've already reassured me that they do all they can to reduce fragrances. I guess since my throat doesn't close up, my reaction isn't significant. But it is to me. I still feel like I was run over by a bus since the appointment. And my face is so sore and tender.

Somehow, I'll have to make myself, because she is the only person trying to help me right now. I don't know if I'm hoping for an underlying autoimmune disease or not. I'm not sure how treatable most of them are. But it would least open up a few untried treatment options.

In the meantime, I'm back to living the unsettled lifestyle. Weekdays at mom's house, weekends at home. I think it spreads the misery around a bit. My husband can brew coffee and work late without feeling guilty during the week. My mom can do some cooking and baking during the weekends. It seems to be the best way to manage for now. I can't seem to tolerate staying in our apartment for more than a few days, for whatever reason (I do best when the window can be left open, if the outdoor air is clean.) The back and forth is pretty exhausting. The amount of stuff I have to bring with me is ridiculous! My food and Wilma's food. Mattress toppers and pillows. A big suitcase. Lots of medicine. Exercise equipment. Wilma, too! Wilma, by the way, is doing awesome. Almost 12 (estimated) years old. And as long as she has her prescription dog food plus some potatoes to keep her bowels regular, she's a healthy girl. She is still pretty miserable around my husband, due to her fear. That hasn't really improved at all. But she loves staying at mom's house with her cousins (Dexter and Lexie!).

Also, for two months now, I've been working through the physical therapy protocol in the EDS handbook. I've been progressing pretty slowly, which is recommended with EDS and widespread joint instability/weakness. So, the exercises don't look like much. They are working to stabilize my pelvis and lumbar spine. I believe they are helping, as I have less pain in my sacrum, and I can sometimes sit in a regular chair without a coccyx cushion. I just look forward to when I can work more on leg strength, knee stabilization, and shoulder stabilization. And of course, when I can reincorporate some cardio. But I'm following the program, and this is the recommended order of joint stabilization.

Apparently, I wrote a term paper today. I seem to be a bit manic, so you got the long-winded version. Sorry for taking up so much of your time. Thank you so much to those that support me and those that are following my progress.

Tuesday, February 21, 2017

Another Progression

I need to update more regularly, because my foggy brain can't keep track of even small developments. But I'll do my best to remember.

I developed a new sensitivity in late January. Basically, the smell of almost anything cooking brings on devastating, torturous symptoms. In particular, I develop that severe burning sensation throughout my torso. It starts in my chest, but then fills my torso. It feels like my insides are on fire. It is very intense, and lasts at least a whole day. It's accompanied by intense agitation and insomnia. I've come to understand that this is, of course, a symptom of mast cell activation. Some patients refer to it as masto-burn. It's like the common symptom of facial flushing and burning, but internal. Of course, I have another invisible, but extreme and intolerable, symptom.

I originally got the burning last June, after a week of steroids, while in the hospital for migraine, and was treated with strong IV medications. Then, I continued to get this symptom when I was on the Indomethacin for my facial pain. Then, I developed it again during the suspected serotonin syndrome episode in November. Maybe, it was mast cells all along.

I have also developed other sensitivities, including NSAIDS, Tylenol, Relpax, Prevacid, Nexium, and Gas-X. Basically, all of my as needed medications, I can no longer tolerate. I have had to go without treating most problems that come up in a day. The burning torso is just too intense. I have to avoid it at all costs. And the cost is very high when I can no longer treat so much pain.

I also discontinued my vitamins and supplements. Because I'm just so desperate to make sure I'm avoiding anything contributing to the burning.

Finally, I've recently discovered that I no longer tolerate eggs. Severe GI bloating and cramping seem to be caused by eating a single egg. I don't get much protein at all, and my diet is so restricted right now, so this is another big loss.

The progression of all of these sensitivities has been really discouraging. Especially since I'm on the medication that should be helping prevent this. It's just not enough, I guess.

So, I became aware of an allergy/immunology doctor at Rush that treats MCAS. Unfortunately, when I finally worked up the courage to contact her office, it was a big let down. She greatly restricts the number of MCAS patients she is willing to treat. And she won't see me at this time. I can try to get together documentation and get further testing done, but it will be a huge project. Why do I have so many conditions that doctors are unwilling to treat? It's nuts. My awesome POTS doctor is currently not taking new POTS patients. I'm very lucky I got in with him when I did. There is a huge list of geneticists/rheumatologists that have blacklisted EDS patients. And now MCAS specialists that are unwilling to take on new MCAS patients. It's just so hard to be so unsupported and so alone in managing these conditions. I guess I have to keep seeing my current allergist, because at least he is willing to try things with me (although we haven't managed to make it through an appointment without him infantalizing and condescending to me yet--I always leave crying.) But I should try to get him to order new testing, since the last testing was totally mismanaged.

I did see Dr. Barboi, who I'll now be seeing only yearly, due to his schedule. He basically wanted me to hold everything for now, and wait to see if things calm down. He is worried that getting off of the Cymbalta has destabilized my autonomic nervous system. We are hoping that things will calm down in a month or two. But I'm not sure he's acknowledging how much the mast cells are interfering, and the fact that my reaction to Cymbalta could have been caused by my mast cells, meaning I really can't go back on it.

Being off of my vitamins and supplements has impacted my frequency of headaches and migraines. I really believe the vitamin B2 and Butterbur were helping a lot. But I just can't take anything extra right now. So headaches seem to be daily again. That's getting really exhausting. If I get back to a point where I feel stable, I will try the vitamin B2 again, first, to try to reduce the headaches.

My daily life has certainly been impacted by all of this. I've been able to move back home! I think the biggest difference is the weekly vacuuming my husband has really committed to. With very old carpeting, I just can't handle the dustiness. It upsets my whole system. My diet is even more restricted. And the inability to cook in the house is so limiting. I love to let in fresh air from outside, but we have to be so careful that no one smokes near our window, and to close the place up whenever there is grilling smoke in the air. Because that smoky air that comes with fair weather just about kills me. I get the same bronchospasm and throat closing that I did in high school that was called "asthma," but we now know is from mast cells.

My diet is down to this:

Joe's O's with almond milk
Whole grain graham crackers with peanut butter
Quinoa pasta (made at my mom's house-I can't even be around boiling anymore.)
Carrots and Broccoli, steamed in the microwave
Asparagus or green beans, steamed in the microwave
Grapes
Potato or corn chips
Rice Krispie treats

I may try cooking sweet potatoes in the microwave, to mix things up. I miss my daily egg! (Although microwaved egg was pretty gross.)

I still occasionally get some type of chicken from a restaurant, but I've had some questionable reactions, so I'm not sure how well I tolerate it. I believe it has to do with the freshness of the chicken, which determines the histamine level in the chicken. 

So, I spend my days alone with my little Wilma. I try to care for myself and for her. I get both of us food. I take her outside several times a day. I keep myself entertained with television, my ipad, books on my kindle, and my phone. I haven't really been coloring. I have very little physical or mental energy. And most of the time, I suffer. I know it sounds like boredom would be a huge problem for me. But it's not. Loneliness? Of course. I have almost no contact with the outside world, outside of Facebook. We haven't really worked out visitors yet, with my progressing sensitivities. But boredom is just not something I contend with. Most of the time, I am dealing with severe symptoms, and I am suffering. I am desperately trying to figure out what is causing my current misery. But I'm not bored. When it's not one symptom, it's definitely another. If I get a break from the itching and burning and insomnia, I am plagued with reduced consciousness, severe facial pain, or migraines. There is no break. When symptoms are on the mild side, I honestly just try to let my body relax and recover from the constant assaults. So, I'm sure my daily routine would bore most people, but not me. 

I am still so relieved that I can basically care for myself. Home health care would be expensive, and add an intruder into my safe space. And I just can't handle that. It's hard enough to keep my home scent-free as it is.

I need to arrange a trip to the dentist and a trip to the optometrist soon. The dentist, because my EDS gums are receding, and my teeth hurt often. (Although actually getting dental work done with no pain killers available would be horrible.) The optometrist, because glasses give me headaches, so I need a renewed contact prescription.  I don't know how either one will happen, when I can't go anywhere without triggering a major reaction.

Emotionally, I'm struggling. The depression is hard to live with, as usual. I have deteriorated to the point that most days are a fight to maintain my will to live. It feels like all I have to give at times. At least I'm still here. I'm still going through my days. I have not abandoned my loved ones. That feels like all I have to offer. But I sure wish I had more to offer. I wish I had more to share.

I found this Quality of Life Scale by the American Chronic Pain Association:
Quality Of Life Scale 
A Measure Of Function For People With Pain 

0    Stay in bed all day 
      Feel hopeless and helpless about life 
1    Stay in bed at least half the day 
      Have no contact with outside world 
2    Get out of bed but don’t get dressed 
      Stay at home all day 
3    Get dressed in the morning 
      Minimal activities at home 
      Contact with friends via phone, email 
4    Do simple chores around the house 
      Minimal activities outside of home two days a week 
5    Struggle but fulfill daily home responsibilities 
      No outside activity 
      Not able to work/volunteer 
6    Work/volunteer limited hours 
      Take part in limited social activities on weekends 
7    Work/volunteer for a few hours daily
      Can be active at least five hours a day
      Can make plans to do simple activities on weekends 
8    Work/volunteer for at least six hours daily 
      Have energy to make plans for one evening social activity during the week 
      Active on weekends 
9    Work/volunteer/be active eight hours daily 
      Take part in family life 
      Outside social activities limited 
10  Go to work/volunteer each day 
      Normal daily activities each day 
      Have a social life outside of work 
      Take an active part in family life

According to this scale, my current quality of life is 1-2 on average. I'm not sure what can be done to improve this. I'm doing what I can.

There are still more mast cell medications to try, but not a lot. A supplement called Quercetin. An out-of-the-country prescription called Ketotifen. Some risky injections called Xolair. And eventually, chemotherapy. But I don't have a mast cell specialist to help me try these. And I'm so afraid I won't tolerate anything new.

Finally, I would not be surviving all of this if it weren't for my mom and stepdad making their home a safe space for me, as well as my husband accommodating my needs at home. I am no fun to live with with all of my sensitivities. Light, sound, smells, cooking, extra pads and cushions on every seat. I need a million accommodations just to be less miserable. And I am very lucky that I have two safe households to choose from, in case anything goes wrong in one of them. I am so grateful to these three people for allowing me to limit their lives so much. And I'm also grateful for my little Wilma for being my constant companion, no matter which home I'm in.

Sunday, January 8, 2017

How to Go Fragrance Free

......And be able to visit me!!!


Okay, I have a few updates. Then, I'll be describing which products are safe for me, and how someone would need to be unscented enough to visit with me.

The holidays were pretty sad for me. I mostly had to visit with people through Skype. There are so few people with whom I can share a room anymore. I also had laryngitis and bronchitis for a few weeks, so I was sicker than usual, and my mast cells were really irritated, so I was needing extra Benadryl around the clock.

I stayed at my mom's house through all of December, since our apartment was still triggering a major reaction.

Earlier this week, I saw my supposed mast cell doctor (allergist/immunologist). His office is supposed to be fragrance free. But they have started using an air freshener spray in the waiting room and the bathroom. They also have air purifiers in each room, but none of them are turned on. So, his office is no longer safe for me. I had to wait in the car for an hour and a half before my appointment. The appointment was not very productive. He doesn't seem to be treating me for mast cell disease anymore. He didn't seem to remember any of the medications that he is prescribing me, including the mast cell stabilizer. He did recommend I try the supplement CoQ10, but that is more likely to help fatigue and pain than allergies or environmental sensitivities. So, I feel like he's given up on actually helping my mast cell activation. I appreciate that he wants to improve my quality of life, but it seems that I really need more of a mast cell specialist. I'll be looking into getting in with a doctor at Rush next. Although, I'm still afraid of going inside a doctor's office, since they are all so scented.

The same day as the appointment, I finally moved back home. It was a little earlier than I wanted to, but the house cleaner used scented products at my mom's house, so we had to move me out abruptly. Coming home was difficult, because something in the air was still problematic. After having bronchitis, my airway still seems to be very reactive, so I developed a persistent cough at home. (Reactive airways are common in mast cell patients.)

Yesterday, we had the carpet steamers come by to try to reduce the amount of dust in our carpeting and in our newly inherited 30-year old couch. We made sure they didn't use any scented products. Initially, it made things worse, because it pulled all the dirt and dust out and into the air (It also smelled really bad.) So, last night was pretty miserable. But, today, now that the dust has settled, it seems to be easier to breathe in here. It's hard to say for sure, as there are so many factors contributing to my state at any one time, but I believe the air is clearer. We also bought a dust mite encasement for the couch, so any dust inside will stay inside. We also bought a new heavy-duty air purifier, so we have one in each main room of our house. Next on the list will be mattress encasements, but I'm putting it off for now, since I seem more comfortable in the bedroom. (It would be a good idea, since both of our mattresses are 12 years old at this point.)

Okay, onto the list of products I use that do not trigger a reaction! I know you're excited!

I am not guaranteeing that anything on my "safe list" will be safe for anyone else with chemical sensitivities, or that I will not become reactive to these in the future. These are just the ones that work for me today. The disease tends to be progressive, so this list may get shorter with time.

Also, I seek out the most affordable products that I can tolerate, not necessarily the most natural or safest products on the market.

I get asked all the time about cleaning products. Most people know there are free and clear laundry detergents. We usually go with Tide, because it seems effective at getting out smells, but All and Seventh Generation work, too. This one is the Target brand, which is usually the best price:

http://www.target.com/p/-/A-13186521

I don't use any fabric softener, because it is just a major irritant for me.

Here is the dish soap we use, which is the Target brand:
http://www.target.com/p/-/A-16600501
Seventh Generation also makes a free & clear dish soap. This one is okay for me, too. And dish soap also makes a good general all-purpose cleaner around the house. Anywhere you want suds in your cleaning, dish soap is a good solution.

For general cleaning, I use the seventh generation brand. They make an "all purpose natural cleaner," as well as a "glass and surface natural cleaner." These are the only ones I know of that do NOT contain essential oils, which are super problematic for me. I use these for most of my cleaning:

http://www.target.com/p/-/A-15172078
http://www.target.com/p/seventh-generation-natural-glass-and-surface-cleaner-free-clear-32-oz/-/A-14694505

For dusting, I just use a lightly dampened cloth. Apparently, that's safest for those with dust allergies.

For hardcore cleaning, I'm still experimenting on what works best. I'd like to try this product for our shower:
http://www.natlallergy.com/tub-tile-cleaner-32-oz-spray-bottle.html

I think that's most of the cleaning products. (Obviously, I don't have the energy to keep a perfectly clean home, but these are the products I use when I can clean!)

Personal products can be really tricky, too.

A good example is unscented deodorant. "Unscented" deodorant is usually NOT fragrance free. Here's two good examples, that I used for a while, before I became too sensitive:


But as you see on the ingredients list, both of these products contain fragrance!

So, I've switched to this Almay brand, which I've only been able to find online:


It says "fragrance free," not "unscented," and so it actually contains no fragrance. This is true for most products. Unscented is not enough! This deodorant literally smells like nothing. If someone else were wearing the Sure deodorant, I probably wouldn't notice, because it contains very little scent. But this may not always be true for me.

Another one I have to order online is hair products. Regular stores just don't sell unscented hair products. I have used several brands. I don't love them as much as I used to love my "traditional" scented shampoos, but at least several brands are acceptable for me.

Right now, I have the ones by Free and Clear. They also sell hair sprays and gels, as well as various other fragrance free personal products.
https://www.amazon.com/Free-Clear-Set-Shampoo-12-Conditioner-12/dp/B00164E8TI/ref=sr_1_1_s_it?s=beauty&ie=UTF8&qid=1483932525&sr=1-1&keywords=Free+and+Clear

Some pharmacies will order this brand for you.

But there are other choices. Sometimes, I just look for the best price. Desert Essence makes a decent FF (fragrance free) shampoo and conditioner:
https://www.amazon.com/Desert-Essence-Organic-Shampoo-Fragrance/dp/B0019GZCYI?th=1
https://www.amazon.com/Desert-Essence-Conditioner-Fragrance-Free/dp/B0017QSW92?th=1

There are others, but these are the ones I use the most. Jason and Earth Science are two other brands that make FF shampoo and conditioner. Available on Amazon or Walgreens online.

I know you can also find FF products at Whole Foods, but I can't shop there anymore, due to the essential oils in the air. (Reminder: essential oils may be more natural, but they are still very dangerous for me!!!)

Body wash is so much easier. The Target brand makes a liquid body wash:

It's generic for Aveeno Active Naturals Skin Relief Body Wash.
http://www.target.com/p/daily-moisturizing-body-wash-18-oz/-/A-14044281

I use this soap for hand soap, too. I've even gone crazy and tried it as shampoo, and it's not bad. I know that sounds nuts, but the ingredients are pretty similar to a mild shampoo. And it is much cheaper and easier to find than actual FF shampoos.

There's also Dove sensitive skin beauty bar, which is fragrance free. I've gone a little crazy and tried this for washing my hair, too. It will also work in a pinch.

So, you could literally wash head to toe in either of these, and end up clean and fragrance free. It would be cheap and easily accessible for anyone that can get to Target.

*****If someone is normally heavily scented (from products in their home, at their work, on their clothes, or any exposure to cigarettes), they may need to use an odor-removing wash, which is often used by hunters. This is an example:
https://www.amazon.com/Hunters-Specialties-Scent-Liquid-Shampoo/dp/B0132U0UK4/ref=sr_1_3?ie=UTF8&qid=1483937044&sr=8-3&keywords=scent+away
This is also an easy all-in-one solution.

If someone's clothes are normally strongly scented, especially if they usually use fabric softener, they may need to use an odor-removing detergent like this one:
https://www.amazon.com/Hunters-Specialties-Odorless-Scent-Detergent/dp/B0132U0VOE/ref=dp_ob_title_sports

BUT, even if a person were to wash their clothes in FF detergent, not use fabric softener, and use only FF personal products on the day they see me, I can still have a major reaction. This seems to be due to residual scents. Our hair, skin, and clothes are so absorbent. They hold on to fragrances. So, if you usually use any type of scented product (natural or artificial!) in your house or in your daily life, it will probably be stuck on you. I also know that vapor from e-cigarettes are a huge problem for me, as well as regular cigarette smoke (which has been a problem for me forever).  ***Another reminder that products with essential oils or diffused essential oils are a major trigger for me!

The best way around this that I can think of is storing clothes in an air-tight bag immediately after washing in FF detergent. Ziploc Big Bags should work for this:

You can get them at Target and Walmart.

Then, you would just need to be freshly showered with FF products, and put on the unscented clothes that have been sealed in the bag before seeing me. And then not be exposed to any new scents/vapors/essential oils/etc. on the way to seeing me.

I am absolutely not asking anyone in my life to go to all of this trouble. This is my problem, not theirs. I would like to try to maintain my current relationships through texts, calls, Skype, etc. Especially Skype, which really helped me to "participate" in holiday gatherings. No, it wasn't the same. But it was better than nothing.

This is just for people in my life that would like to have an in-person relationship, and are willing/able to go to all of this trouble in order to visit with me.

My fear is that even with all of this, I'll still have a reaction, which happens so often. My head will start spinning, I'll get suddenly congested, or I'll start having palpitations. The cascade of symptoms will follow, ending with my days of severe facial pain and exhaustion. And I have a serious problem with speaking up when an exposure has happened. If the scent is really noticeable, I've gotten better at quickly fleeing the situation. But for scents that more gradually seep into my system, I'm terrible at being assertive. Especially when I know that someone has really tried to come unscented. (See: Very British Problems)

And honestly, even though our home is full of safe products, we still have to run two air purifiers on high all day in order for me to be somewhat comfortable. I think it's just an older space with older furnishings. So, I'm not sure how I will ever be able to go anywhere outside my safe spaces, like other people's home or stores. I have had some success eating out. If the people I'm with are unscented, and the restaurant isn't crowded, I can sometimes survive. Most restaurants want you to be able to smell the delicious food, not numb your senses with added scents. But, if something in the kitchen burns, or someone scented sits down near me, I'm out.

***Reminder: essential oils are huge on my list of triggers. I have serious reactions and cannot tolerate being near them, even if it is just residual scent on hair or clothes.

Anyway, I thought I should lay out what it seems like might work to help me to be less isolated. Feel free to ask if you have any questions. Thank you for caring enough to read my updates. I still need to work on staying in touch with people. I just still don't have anything interesting to share with people. Dealing with all of this has been my life for at least a year now. This life is not getting easier, but I'm still here.

Thursday, December 15, 2016

Ready for my bubble now

I don't want this post to sound as negative as the last one. So, I'll include the positives first:

Cymbalta withdrawal is lessening, I think. The biggest thing that has stopped is the jolts/shocks/startles/zaps. Whatever you call them, they are miserable, and they are mostly gone.

In addition to this, I have had a lot less days with classic migraines. There is a chance my elevated serotonin levels were contributing to the frequency of my migraines. It's just a theory, but I'm holding onto hope that that's really what's happening. Of course, it's hard to be hopeful when I currently have a migraine with a pretty high pain level.

Unfortunately, I really don't have anything else good to report. Despite the lack of migraines, my facial pain has still been severe many days, so not really any better than a migraine. Maybe worse, because I can't treat it. (Well, I try Tylenol + Benadryl, but it is hard to tell if it does much. Maybe, it lessens the pain by 1-2 points on the pain scale.

What has progressed even further is my chemical reactions. It didn't feel like that would be possible, but rationally, I know mast cell disease can progress much, much further. I am aware of people that become allergic to water, anything that has ever touched plastic, and other people's body odor. So I knew it was possible to be more sensitive. I just didn't think it would be me, you know? Thank goodness, I'm not that far along, but I see the progression happening quickly. Where smaller and smaller exposures trigger more extreme and longer lasting reactions. Where it feels like you're always basically in a state of reaction to something.

My fear is becoming confined to a room, a "safe space," and having very few people that do not trigger reactions allowed in the room with me. I'm getting closer and closer to this every day.

Mast cell disease is often mild until exacerbated by trauma or stress. I have had symptoms of mast cell disease probably since birth. I had a major reaction to breast milk as an infant, as well as dairy milk. In high school, I developed what was called "asthma" to exercise and cigarettes. Now, I understand this was most likely anaphylaxis from a mast cell reaction. It makes so much more sense, looking back, since the inhalers never helped, but the shot of epinephrine from the EMTs always did. Then, I have gotten worse after each major surgery or trauma in my life. I developed new chemical sensitivities over time. This Cymbalta withdrawal is just the most recent of the many stressors on my body that seems to have progressed my mast cell disease.

I have major reactions to the smell of cooking now. I try to boil and steam most things. But it's hard to live with me due to this restriction. (It's also hard to be me-because I enjoy cooking and baking and making things taste good!) We also don't have a hood vent over our range, so there is no easy way to ventilate the kitchen.

Exposures that would have only caused me temporary discomfort previously now cause me major reactions that are multi-systemic. Example: I smell some scented laundry detergent for a few seconds, I end up having a full day of itchiness, sinus pressure, vertigo, facial pain, and diarrhea. I also sometimes get swelling in my eyes and lips, usually not right away, but by the next morning.

I had a crazy reaction to being in Whole Foods for less than three minutes. The smell of essential oils was very strong in the air. Ever since then, I cannot tolerate even the tiniest exposure to a scented oil. My head starts spinning instantly, followed by my sinuses filling and all the rest.

Beyond the reaction itself, every single exposure seems to lead to greater sensitivity. The only way to avoid the ever-increasing hypersensitivity is strict avoidance of anything that triggers a response. The more recent your last reaction, the more primed you are to react to the next tiny exposure. Your tolerance lowers, and your mast cells are on edge, ready to burst their contents all over again.

I now have multiple unscented products that cause severe reactions, including unscented Febreze and unscented fabric softeners. And sometimes, it's a mystery trigger. I know there is something, probably on someone's clothing, that is triggering me, but I don't know what it is. That's when I guess it's one of these unscented products.

Currently, I've been living at my mom's house again for almost a month. First, she was helping me through the withdrawal. But I tried to move back home, and ran into a new problem. I'm allergic to our heat. We have baseboard radiators, and I finally figured out that these were triggering a reaction, after spending 2 1/2 days basically manic. So, my husband and I spent a night doing a major cleaning. Over the year(s), the radiators collect a disgusting amount of dust. So, every time the heat cycles on, the dust gets burned off into the air. Even after a thorough cleaning, there's still a distinct smell of burning dust when the heat is on. So for now, we're running the heaters on high while I stay at mom's house to try to get rid of the rest of the dust.

I am completely exhausted and pretty terrified at what this progression means for my life.

I am hoping to be able to move back home soon, but who knows when I'll be able to tolerate it?

I also have no idea if the withdrawal is over. Is my current state of depression with frequent crying just my personality now? Is it just my remaining mood disorder, now that I am mostly untreated?

I'm still trying to figure out what to do about a new psychiatrist. My current one will no longer take my insurance, and I've also now had a major reaction to being in his office. I'm looking into doctors that offer phone and Skype appointments, but my insurance won't cover any of them. I'm not sure there is much of an option though, and my mental health does need some management, even if it can't come from SSRIs or SNRIs anymore.

I don't know how I can go into another doctor's office ever again at this point. Which is a pretty dangerous place for me to be in.

I'm going to share a few embarrassing pictures of mast cell reactions. I don't getting the usual flushing, but I do have allergic edema, with swelling of my face, sometimes swelling my eyes shut. It's not as severe as some edema, but it is a visible sign of my mast cell reaction and my facial pain.




I honestly have a ton more to write about in my head, but I'll save it for the next post. Thank you for reading and for the support. I'm so sorry I haven't gotten back to people that have reached out. I want to reach out, but I fear that I have nothing to say that isn't about my illness. I think I have nothing to contribute to the world but my illness experience. I barely even exist outside of my illness experience lately. I'll try to do better. But I am almost always either in a crisis or in a total fog, recovering from the last crisis. Maybe days like today, it's a little of both. Dealing with migraine pain that started last night, but also in a total fog.

Thursday, December 1, 2016

Really, really long November Crisis: Serotonin and Withdrawal



Life is feeling utterly hopeless for me. My body was not made to tolerate this earth. I don't see a way out of this misery - the misery that has gone on for much of the last five years...and really - a lot of the last 15 years as well (since my Chiari symptoms began). I could even go as far back as 6th grade, if I'm being honest. When the depression and generalized pain and sickness began.


The current saga started November 9th, I think. I woke up with another hemiplegic migraine (the kind that looks like a stroke). It didn't last too long (maybe 2 hours), so I just went on with my day. Yes. This is actually the type of thing you can get used to. Unfortunately the standard 1-3 day migraines became frequent after that. The 12th-13th, a new one the 13th-14th. Again on the 16th and the 18th. The days in between had more generalized facial pain, but not true migraines, as far as I understand.


I saw my migraine specialist on the 16th. She gave me the lovely news that "We are running out of options." And she gave me a referral to a pain management office, where they can do more invasive treatments (that are bound to make me worse, since everything else seems to). I got the helpful diagnosis of "atypical facial pain," associated with my frequent migraines and chemical sensitivities.


I left the office feeling like I've already been through this letdown...because I have. I've had three doctors that are board certified in headache medicine give up on me. Dr. Semenov did send me home with a script for Gabapentin to try, as I requested. Unfortunately, I haven't been able to try it yet.


Because my serotonin levels were already elevated by that day. I had to use a triptan 3 times in 5 days. That, in addition to my other daily serotonergic medications, was too much for my body to take. By the 16th, my serotonin was too high, as indicated by the milder symptoms of elevated serotonin I was already experiencing. (These include low fever, feeling of burning up inside, agitation, restlessness, elevated vitals, and more frequent bms. In fact, I had discontinued my daily Miralax and my Midodrine to accommodate the change.)


And I may have been okay, if it weren't for the huge weather change on the 18th. As many people across the country experienced, it turned from early fall to winter overnight. A temperature drop of 50 degrees in Illinois. The head pain was beyond unbearable. If I could see any way around it, I wouldn't have taken anything for it, since I knew I was in a vulnerable state. But I truly could not handle the pain. I took my Relpax (the 4th dose in 7 days), and prepared for the worst.


Unfortunately, my fears were completely right. As the pain started easing, my serotonin levels soared. How do I know, when there is no way to reliably test serotonin levels, or diagnose serotonin syndrome? Well, I've been through it four times before, and it is quite predictable. Within an hour of taking the serotonergic medication that puts me over the edge, I develop a fever, intense burning throughout my torso, high blood pressure, racing heart, twitching, agitation, restlessness, and diarrhea. It is similar to other types of episodes (especially mast cell ones), but the fever and burning insides really stand out as specific to this problem. And they come on very quickly. Also, they are very predictably based on the number of serotonergic medications I've had to take.


Since then, I have been in hell. The only safe way to deal with high serotonin levels is to immediately withdraw all serotonergic medications. For me, this includes Cymbalta, Remeron, triptans, Flexeril, and Zofran.


As soon as I started skipping doses of my anti-depressants, I began experiencing symptoms of withdrawal, which can feel similar to the serotonin problem itself.


I'll try to sum up each day since then, as so much has happened.


November 19: No anti-depressants. Developed symptoms of withdrawal (diarrhea, restlessness, extreme sadness, huge temperature swings, tachycardia, brain zaps, body zaps, heart startles/shocks, and sudden vertigo/blaring ears). I also developed another migraine this day. My pain absolutely hit what I want to call a 10 for a couple of hours, and I wasn't allowed to take any medication for it. All I could do was moan and rock. Any sane person would go to the ER, but I knew I wasn't allowed anything for it, so I just rode it out.


November 20: No anti-depressants. Withdrawal persisted. BP very low now (85/55 after Midodrine and salt tablets). I was unable to sleep again this night due to withdrawal symptoms.


November 21: Tried a 1/2 dose of Cymbalta, at the recommendation of my psychiatrist, due to extreme emotionality/suicidal ideation. Unfortunately, I developed mild symptoms of raised serotonin, including a fever and twitching. In addition, this day, I contracted Norovirus, along with many other family members. Symptoms were very hard to sort out this day, because I became very dehydrated. During the night, I had a pounding heart and found my blood pressure to be 68/38.


November 22: No anti-depressants. Standard withdrawal symptoms. Heart rate was 100-120 most of the day. Had another sleepless night.


November 23: Nausea, flushing, sobbing, deeply depressed, suicidal ideation and panic. Tried a 1/2 dose of Cymbalta again. Within an hour, the burning and twitching started, along with the fever returning. This was officially my last try at Cymbalta.


November 24: Woke up with extreme panic/nausea and tachycardia again, from the restless nights and withdrawal. Developed a migraine with pain level 8, which I treated with Tylenol + Benadryl. Panic, depression, restlessness, insomnia, suicidal thoughts. Continued withdrawal.


November 25: Continued withdrawal. Migraine persisted all day at an 8. Moodiness, crying, suicidal ideation again. Appetite slightly improved, but I was still easily eating sub 800 calories per day. Developing a problem of hypomania at bedtime.


November 26: Still withdrawal. Barely slept. Awoke with heart rate 120 and extreme emotionality/suicidality. Struggled to stay conscious for much of the day. Fainted many times, no balance, many falls. Withdrawal and POTS were severe all day. Hypomania again at bedtime.


November 27: Continued withdrawal and no meds. Very low blood pressure day and persisting of all symptoms of withdrawal, including severe heart startles/shocks/head spins. Hypomanic in the evening again.


November 28: Usual withdrawal with low heart rate and blood pressure. Head pain increased from sobbing and the weather. Passed out constantly--every few minutes for several hours. Suicidal ideation while awake. Became hypomanic in the evening. Since my BP had normalized, I was able to exercise for 45 minutes. It was very painful, and there is not a lot I can do, but at least I tried. Became very hypomanic. This was the first night I took a 1/4 dose of Remeron. It did help with the withdrawal symptoms and sleep, but only lasted a few hours. In my notes, it says that I was exposed to a scent this day, but I don't remember which scent. Maybe a hair product. Facial pain did increase as a result.


November 29: I had an appointment with my psychiatrist, which I clearly needed. It was a pretty distressing appointment for several reasons. He told me that I will not be able to restart Cymbalta, and must endure the withdrawal as long as it lasts. He allowed me to try the 1/4 dose of Remeron, for now. But in the future, he's considering Lithium or Lamictal-something that will not raise my serotonin significantly. He also strongly recommended therapy. Therapy is just so tricky for me, because I have so much trouble going anywhere, due to scents. And I have a lot of sick days when I would have to cancel. He also mentioned looking into TMS therapy (transcranial magnetic stimulation) and ECT (electro-convulsive therapy). This is how I know my future psychiatric treatment looks bleak.


The main problem with this appointment was that the office was strongly scented. Even wearing my mask, I have been suffering greatly due to the scent. I'm not sure how I can go back to the office, although I'll be due for a follow-up in three weeks to reevaluate.


Finally, today, November 30: I had a brief exposure to essential oils in a Whole Foods (ironically, I was there to buy a specialty fragrance free product). The scent knocked me down so hard. I had been unsure if natural fragrances like this were a trigger, but clearly, at least some of them are. The pain is intense, as well as severe vertigo and nausea.


Unfortunately, as I have experienced before, the pain from a scent exposure gets significantly worse in the following 24-48 hours. And since I had already had a reaction yesterday, this could be even more prolonged. I no longer have any plans to go anywhere or do anything until I can get the facial pain back to baseline. I expect pain levels 6-9 for a while. Also, with my scent reactions, my eyelids have started swelling, especially the following day.


The withdrawal symptoms have lessened, but my emotional state is still extremely unstable. I break down and sob many times a day. Things that can make me cry to think about:


*everything that I have missed out on in life

*everything that I will miss out on in life

*what I could have been

*what my life could have been

*the level of suffering I have been through

*the amount of suffering I am guaranteed to go through for the duration of my life


[I have sobbed at Gilmore Girls and Christmas music. Gilmore Girls, because I related to Rory as a teen, and I will never achieve anything I thought I would. Christmas music, because there is reason to be joyful in this world. There are things to look forward to, but not for me.]


And honestly, none of these feelings are new. But being on the appropriate doses of my anti-depressants left me mostly accepting and numb to the pain. Without them, I feel the loss and the grief almost constantly.


But I understand that I will not be able to stay on these medications that help me maintain my mental well-being. Because it puts me at the top of my serotonin threshold. So, any migraine or pain medication can put me over the top into a dangerous place, as serotonin syndrome is life-threatening.


How will I live with so much emotional pain? Why must it be this way? Why can't I find a treatment for my physical pain either? I know it seems trite, but it is not fair. The tiny moments of life that I get to enjoy are few and far between. The rest is suffering. How could it be worth it?


I wish I could escape this personal hell. I wish there were a way out.


For now, I have to just lay low and wait for my body to find a new baseline, without treatment for my depression or my physical pain. Once I reach that baseline, I can try to prioritize what to try to deal with next:


*my joint instability and pain that is causing such reduced mobility, including my feet

*my POTS symptoms, which can only really be managed with exercise (Unfortunately, cardiovascular exercise is very difficult to achieve with my lack of mobility and high pain levels.)

*my emotional state-maybe I will try therapy or TMS at some point in the future.

*my chemical sensitivities--I have no real idea how to deal with this one. It seems to be a limitation I will have to accept/adapt.


In general, if I want to make contact with the outside world, I need to make sure that everyone is completely unscented, which is almost impossible to achieve. Fragrance free products are not always readily available, and usually more expensive. Especially hair products, for some reason, which have to be purchased online. Fragrance free detergents are readily available, but all fabric softener is basically the devil to me. Even skipping perfumes and colognes is very difficult for some people, as they are such a natural part of life.


Some unscented products I recommend:

Free and Clear Shampoo, Conditioner, and Hair Spray

Aveeno makes an unscented body wash

Dove makes an unscented bar of body soap

Free and clear laundry detergent, various brands

No fabric softeners or air fresheners of any kind

No personal scents


I've learned that even unscented products can emit harmful VOCs that may contribute to my overall ill health, but honestly, you can only do so much.


All scented products linger on clothes, skin, and hair. So if you use these products in your home, they will still bother me when I come into contact with you. See why I haven't been participating in social events all year?


I have no idea who would read all of this, but I am grateful that anyone still cares about my tiny little existence that has so little impact on the world.


Sorry for the tone of this. The depression of withdrawal is very intense.


I'll update sometime in December, when at least the withdrawal symptoms should have settled down a bit.