Thursday, February 25, 2016

Can I be a hermit, now?

I haven't posted in 4 months, so I have way too much to say in one blog post. Here goes anyway:

I am about ready to give up and become a hermit. Seriously. This scent sensitivity continues to get worse, and I just about want to say that I'm never leaving the house or allowing anyone over again. I would also need to quit my job, and cancel all social commitments and future travel plans. It's just hard for me to fathom how I can keep going like this, when every exposure to perfume seems to cause a more intensely painful and intractable pain that lasts longer each time. The pain is most intense in my trigeminal nerve, just like many of my migraines. Unfortunately, migraine medication does not help this pain. Also, the few times I have tried stronger pain medication, it doesn't seem to have much impact on the pain either. After a perfume exposure, the pain can last for days on end. And most people that trigger my pain will never know it, because it's way too awkward to say anything. And if you know me, you know I can hide my pain very well for short periods of time. I am truly becoming paralyzed by this symptom. As soon as I smell a triggering scent, I can feel the nerves in my head starting to hurt. I start to feel incredibly anxious, desperately needing to get away from the scent. Unfortunately, in work situations, at doctor's offices, and even some social situations, fleeing isn't possible.

I have no idea how to continue in my life with this ever-worsening symptom. I wear a mask at times, but I can't tell if it helps. I've experimented with peppermint oil to try to trick my brain into not noticing the offending scent, but I can't really tell if it helps either. Mostly, the only answer is to escape. But again, that isn't always an option. I've already told all of my friends, family, and piano students about the issue, but it obviously continues to be a problem. Part of it, I'm sure, is simply people not realizing they are scented, or forgetting to skip the perfume before they see me. And I understand that it would be hard to remember when perfume is a part of your routine. I can't blame anyone much. I just have to suffer for it.

And of course, it's not just perfume. It can be hair spray, air freshener, scented candles, or anything else with a scent, it seems. Safe air is neutral air, with absolutely no scent.

I cannot figure out if this is a problem with overactive mast cells or not. I'm not currently on the mast cell stabilizers, but I am taking the H1 and H2 blockers. I don't think they really help this pain, so I'm afraid that nothing will, and I don't know how to face a lifetime with such frequent level 8-10 pain that cannot be treated in any way. This is another issue that may cause me to look into medical marijuana, which may or may not be an option or be helpful for this pain.

This shows the trigeminal nerve, where so much of my pain is. Especially the maxillary branch, which is the part that goes over the cheekbone.


I do have other updates, but this is the biggest problem this week.

I saw Dr. Grubb in early January! It was so good to see him. He gave me a few hugs during the appointment. I really love him. I wish I could see him way more often, mostly because I love him so much. We talked for almost an hour. The primary issue we dealt with was my insomnia. He feels strongly that I need to treat my insomnia effectively, even if that means taking sleeping pills most every night. But, he gave me a list of ideas to try.

1. Rozerem- a synthetic melatonin, safe for longterm use. Unfortunately, I already tried this one, and it didn't have any noticeable effect.

2. Ambien CR- Since Ambien works for a few hours, Ambien CR would be logical to try. I've tried it, and it helps. But, my insurance doesn't even cover the generic version of it. So, I'll work on getting approval for this if the insomnia persists. (Although I feel like I want to save this to be a last resort, since I have several decades left in which I may need help sleeping.) And it is considered habit-forming.

3. Xyrem- can only be prescribed by a sleep medicine doctor. It is a highly controlled substance, but it is quite safe and effective. It's not considered habit-forming. I may consider a sleep medicine doctor in the future.

4. If nothing else works, consider a lower dose of Cymbalta, as it may promote wakefulness.

He also suggested that I continue to take a stimulant for wakefulness and daytime activity level. I don't currently have a doctor willing to prescribe me a stimulant, although it is a pretty standard part of my POTS treatment. I'm going to have to work on this.
-I may be able to get my psychiatrist to come around and prescribe a stimulant (probably a short-acting one like Ritalin, so it won't interfere with my sleep).
-I may be able to convince my PCP, but he doesn't like it, because of its risk for addiction.
-Finally, I may need to see a local POTS specialist, Dr. Barboi. He would probably also be able to help manage my migraine treatment, so it's certainly an option. Mostly, I don't want to pay for and go through a bunch of autonomic testing again, so I'm putting it off.

Sorry for the disorganized nature of this post. It makes sense to me, but it's kind of a funny format.

Dr. Grubb also recommended a new probiotic to try for my ongoing GI issues. Solgar Probi 30 billion is the one he recommended. I'm trying it now.

Finally, Dr. Grubb said that Xolair injections may be the most effective treatment for my overactive mast cells.

Next, I'm still dealing with issues with my knees, hips, and SI joints. I'm wearing braces daily and trying to do exercises that might stabilize the joints. I may need to go back to PT, but with EDS, physical therapy is always risky. Any exercise may make things worse. It's kind of a hallmark symptom of EDS. There is a new book published which thoroughly describes appropriate treatment of EDS for physical therapists. If I can find a PT willing to read and use this book to guide my treatment, I will definitely try it. The book is "Living Life to the Fullest with Ehlers Danlos Syndrome," by Kevin Muldowney.

Beyond this, I may need to work on an appointment with a local EDS doctor. There are not many. There's mostly only Dr. Brad Tinkle. I have heard there is a 2 year wait to see him. But sometimes, with a doctor's referral, you can get in sooner. My only hesitation is based on fear. I'm afraid, based on some stories I've heard, that he may not acknowledge my EDS, now that my Beighton score is lower. I'm only in my early 30s, but my joints have stiffened up as they've become more painful with age. And the test for EDS mainly tests elbows, knees, and small joints of the fingers. My elbows and knees barely hyperextend anymore. A fellow blogger has recently posted about the problem with the Beighton and Brighton scores for EDS diagnosis:  I couldn't agree more. I'm so glad I was diagnosed by Dr. Francomano in my 20s, when I was more flexible, with a Beighton score of 8/9. Anyway, this is my hesitation to see Dr. Tinkle. I don't want him to question my diagnosis. I just can't handle being questioned by doctors all. But, when it comes to understanding EDS and managing its treatment, there are so few choices in doctors. I'm constantly looking for someone local that could manage my EDS treatment. I feel completely alone in trying to prevent the progressive damage of my joints, but stay independent and active. It's just really difficult, and I'm doing my best. I wish I had help.

Finally, I had my third round of Botox treatment for my chronic migraines today. We decided to skip the injections in my neck, since I already have such a weak neck. Maybe, this will reduce my initial negative reaction to the procedure.

I'm hoping the weather will mellow out a bit, to give me a break from so many migraines, too.

Okay...I can't imagine anyone read all of this. But at least I got everything out of my head, so I don't have to think about it anymore. Just deal with it.

Thank you so much for those that care and support me along the way here.

P.S. I'm currently very worried about a long-time online friend. Her name is Lisa. She has essentially all of the same diagnoses as me, but her mast cell disease is the worst known case. Her doctor has determined that she is considered terminal at this point in time. You can read some of her story at Caring Bridge, although she hasn't been well enough to update in a few months.  I'm getting updates through her Facebook group of supporters. I wish I could meet her, but I believe she is in Florida. I wish even more I could do something to help.