Yes I have found the cause of my insomnia…..hopefully

I recently received a comment from 'CiM' about the hell of insomnia, and my heart went out to this person. CiM asked if I had found anything to help insomnia long-term, since I hadn't blogged in over a year. Of the things I blogged about in the past, none had any lasting helpful benefits when it came to my insomnia. I wish I hadn't been so glowing, for example, about "earthing" or thyroid medication - but maybe those things will help someone else.

But now I can answer "yes," I believe I have found the cause of my insomnia. (And CiM actually mentions it in his/her comment!) Here's my story:

More than a year after my insomnia started on a regular basis, I moved into a new house. After a few months, I started experiencing various other health symptoms. I went to a long list of doctors (allergist, internist, rheumatologist, gynecologist, psychiatrist, acupuncturist, herbalist, sleep specialist, etc), with no answers. Finally after about a year or so, I went to an ear/nose/throat specialist, because one of my symptoms was an earache. He said to me "well, the tests done by all the other doctors have ruled out anything that might be causing these symptoms; do you by any chance have mold in your house? That's the only other thing I can think of." 

I assured him that I had never seen any mold in my house. However, I called a mold inspector and had air tests done, and sure enough they came back positive for mold in the air, including the black mold that is most renowned for causing health problems. It turns out that the basement in my new house had mold behind all the paneling. Long story short, I had the basement demolished and waterproofed.

The first night after the basement was demolished, I felt better, with a slight improvement in my sleep. However, I still had sleep problems.  I kept pursuing the various insomnia "cures" I blogged about in previous posts.

But one day I got to thinking: if an environmental irritant like mold had given me various aches and pains, could it be that I am sensitive to other environmental factors as well? I thought a lot about my symptoms and how they corresponded to certain times of my life. The first thing I tried was keeping my dog out of my bedroom. I also purchased an air purifier with a HEPA filter and ran it in my bedroom every night, all night. 

My sleep improved significantly. 

I then began taking further action to minimize dog dander inside the house by brushing my dog every day outside and washing him once per week. I also boarded my dog for a few weeks to see if that made any difference. 

I am now convinced that my immune system is sensitive to dog dander and that this was the only or primary cause of my insomnia. (Even though I tested negative to the skin prick test for dog dander done by the allergist.) 

I read a lot about different types of allergies (IgG, IgE) and the immune system (cytokines), and have to admit I didn't really understand it. But I understand this: some people are more sensitive to environmental factors than others, environmental factors can cause inflammation, inflammation can occur in the brain, and inflammation in the brain can lead to neuro/psych symptoms. (I call them neuro/psych because I honestly don't understand why we label some people with brain disorders as psych patients, and others as neuro patients -- it seems like a ridiculous and very unfair distinction to me).

The last connection I made  to my insomnia was with my menstrual cycle. My insomnia occurred all the time, but got worse in the days before my period. I began taking supplements that are supposed to help minimize hormonal swings. At first a supplement called DIM was helpful, but it stopped working. Now I am taking an herb called Shatavari which is helpful. It seems to me that hormones, like any other chemical or irritant, may also cause inflammation in the brain in some people.

Back to CiM, who wrote: "My insomnia began very abruptly with a toxic chemical exposure." Coincidence?

I strongly believe that environmental sensitivity was the key to my insomnia. The amazing thing is that I now sleep through the night almost every night. I can't say it is the most restful sleep I've ever had, but maybe that will happen after my current dog passes on. I haven't lived in a dog-free home in 17 years. While I didn't have insomnia the entire time, I did have other symptoms that may be related, and I may have just gotten more sensitive over time.

My dog, of course, is bummed that he can't sleep in my bed anymore, but he's gotten used to the fact that he has to sleep in another room.

To CiM, since you know you are sensitive to some chemicals, I would encourage you to think creatively about what else might be in your home that could be causing an immune reaction, such as a pet or mold. Maybe that could be contributing to your insomnia also.

To anyone who is interested in more information on the scientific aspects of immune system, inflammation, and neuro/psych symptoms, I've found some relevant articles from credible sources that are peer-reviewed. I've posted links to them below (note that they may focus on "mental illness," but I don't see why a similar immune system reaction couldn't cause insomnia rather than depression):

Is depression a kind of allergic reaction?

From inflammation to sickness and depression: when the immune system subjugates the brain

Mind and body: Scientists identify immune system link to mental illness

Mental Health: Molding a Link to Depression

I wanted to add that there are still some times when, due to nerves or something else, I wake up in the middle of the night. I used to meditate at these times, and now I've started a form of meditation I learned from HeartMath, which they call the quick coherence technique. I find it helpful.

I hope this blog post is helpful to others, including CiM. I know not everyone has environmental sensitivities (I read somewhere that about 25% of people are sensitive to mold), but perhaps this will help some people who have insomnia.

And I'll blog again in the future if I continue to learn more.  I think I still need to blog on my sleep study. Please feel free to post your stories here also and let me know if any of this information is helpful to you.

Stumbling across Cognitive Behavioral Therapy for Insomnia (CBT-I) and Behavioral Sleep Medicine (BSM)

So, for those of you wondering what I have been up to, I am still on my quest to cure my chronic insomnia.  Anything I have mentioned in previous posts that was helpful, has not been lasting.

So, I went to a new sleep doctor (an MD--neurologist), and she recommended something called Cognitive Behavioral Therapy for Insomnia (CBT-I), as well as hypnotherapy.

How could I have been searching for insomnia cures for years and never heard of this?

And how can an MD recommend something as wacky-sounding as hypnotherapy? It must really work.

Well, in my desperation, I decided I had nothing to lose except more money.

Here is some information on CBT-I:
http://sleepfoundation.org/sleep-news/cognitive-behavioral-therapy-insomnia
http://www.mayoclinic.org/diseases-conditions/insomnia/in-depth/insomnia-treatment/art-20046677

So, I found a certified behavioral sleep medicine provider here:
http://www.behavioralsleep.org/findspecialist.aspx

I was surprised at how few there are in the country. Fortunately there is one in my metro area -- but only one! If there are none near you, or you can't afford it, I found this on-line version. I can't vouch for it myself, as I haven't tried it, but it might be helpful: http://cbtforinsomnia.com

There are various methods used in CBT-I. The sleep restriction therapy did not help me, and actually made me feel worse. Stimulus control and sleep hygiene didn't help, and were things I already knew about anyway.  Meditation seemed like it could be helpful but I can't get my mind to stay still, no matter how much I try. Biofeedback using a thermometer to measure my skin temperature is another techniques that is fairly simple but I have been lazy about. But some of these things might help you!

And then we come to hypnotherapy….now that is helping. I had no idea what it is, and of course I envisioned a pocket watch dangling before my eyes. But hypnotherapy is not anything like stereotypical hypnosis. Rather it is like letting yourself fall into a daydream. I found it difficult to do on my own, due to my active mind, but I have downloaded guided hypnotherapy sessions from iTunes as well as some iPhone apps, and these are really helping me.  I have tried several and found the ones I liked best based on the voice, style, length, etc.

Another thing the sleep therapist recommended is progressive relaxation.  This has also been helpful. I have found some downloads that have both progressive relaxation and guided hypnotherapy.  I am trying to do this before I go to sleep as well as when I wake up.

My therapist told me it really takes 3-4 weeks to kick in, and I have been doing this about 2 weeks now (and not every day).  But so far, I am learning a lot about my mind and body by doing this, and I think the awareness itself is helpful, as are the techniques.

Wow, wouldn't it be great if there was an insomnia cure or at least relief that was so low-tech and so cheap? The sleep doctor told me that insomnia is so hard to address because every case is unique, so there is no standard treatment and no way to know what will help any one individual. (unlike, say, sleep apnea).

I am hoping this is really solid and lasting, for me and you and all the other insomniacs out there. Maybe this sleep behavioral therapy can help a lot of people.

Finally getting to the root of my insomnia-entirely new information

Updated July 8, 2015: Please read this, but please also read the updated post found here.

Last time I blogged about "earthing" and how it helped me sleep. Unfortunately, it was a very short-lived respite from the hell of insomnia. Since then, I have been searching, seeing more doctors, and doing more research. I have finally come across something completely new to me that I think might be the source of my insomnia and it is called the hypothalamic-pituitary-adrenal (HPA) axis. 

It's even more complicated than it sounds, and there are plenty of sources on the internet to learn more about it, so I am not going to try to explain it. But, suffice to say, it controls many mechanisms in your body, including thyroid and adrenal glands. And many things can go wrong with the HPA axis based on genetics, nutrition, and more. 

I found a doctor who tested my thyroid and cortisol levels. It turns out that sleep can be affected by both high and low levels of various hormones in the body. This is the best summary I can recommend on this issue:

http://www.stopthethyroidmadness.com/2013/09/14/three-sleeping-issues/

A light bulb really clicked when I learned how low cortisol can cause insomnia, and then recalled how the Fisher Wallace Stimulator is advertised as "shown to lower cortisol." Maybe that is why the FWS made my insomnia much worse.

So far, medication I am taking has already helped my sleep. I am not yet at the place where I would like to be--a solid night of restful sleep--but I feel like I am much closer to it than ever before and working with doctors to get the right approach. It seems to me that doctors should check thyroid and adrenal levels before prescribing the FWS.

I hope this helps you!

I found something that has actually helped my insomnia

Updated July 8, 2015: Please read this, but please also read the updated post found here.

It's not Fisher Wallace, but since readers visiting this blog may have insomnia, I thought I would share that I have finally found something that has helped my insomnia. After my negative experience with the FWS, I was thinking about how electrical stimulation made my insomnia worse. After searching around on the web a while, I came across websites talking about "earthing" or "grounding" one's self to counter the effects of electro-magnetic fields or to reconnect to the natural electrical field of the earth for balancing. It sounded pretty crazy to me, but products purchased at www.earthing.com have a 30-day money-back guarantee, so I figured I had nothing to lose by trying (I am not necessarily recommending this one site or its products over others, but did want to point out it's guarantee policy). I read some positive reviews on Amazon that sounded genuine, so I decided to give it a try.

I purchased the cheapest option, small bands that go on your wrists or ankles. I attached it to my ankle and immediately started sleeping through the night. It is not the best sleep I have ever had, but it is light years better than anything I have had in years. I was really skeptical, but I can't deny that I haven't had any horrible insomnia since I've started using the bands. (and if you try the bands, the coiled cord is much better than the straight cord for sleeping). I am going to order the "half-sheet" and see if that offers any added benefit.

Just thought I would share!  Hope it helps someone.

True to their word; my refund arrived

The Fisher-Wallace company is true to their word. My refund arrived yesterday.

End of story

I returned my FWS. I am sorry to report that it did not help any of my symptoms. I hope it provides real relief to others, and I hope in some way this blog is helpful to those considering the FWS. As I mentioned in other posts, I tried to highlight some of the positive reports I had come across, so that anyone considering trying the FWS can hear different experiences (see March 30 and April 18). Wishing anyone reading this happiness, restorative sleep, and joy. You deserve it!

Day 43: nearing the end of my Fisher Wallace Story

Yesterday I did not use the FWS, since I felt overstimulated on Day 41 by using the FWS on Level 2 in the morning. Even though I did not use the FWS yesterday at all, I was up most of the night and had a very upsetting dream when I did sleep, that I can still clearly remember. So, I definitely can't tolerate the Level 2 in the morning only. It has been 43 days with no benefit. I will check in with the shrink and report back but I feel this is likely the end of my Fisher Wallace story.

Positive experiences with the Fisher Wallace Stimulator

Since I have only been blogging about my own negative experiences with the FWS, I thought I would post any positive comments I have come across.

I already linked to one in this previous blog post.

Here are some others:

http://forums.webmd.com/3/sleep-disorders-exchange/forum/2076

http://www.depressionforums.org/forums/topic/53512-fisher-wallace-cranial-stimulator/


It seems that some people are finding a genuine improvement in their symptoms from FWS. 

Day 42: Back to square one (or should i say Level One)

On days 40 and 41, I used the FWS at Level 2, in the morning only. Last night I also took a half of a Sonata. I slept for about 5.5 hours, waking up in the middle of a crazy dream involving my mom and missing a flight to Turkey (funny!). In my dream I even remember the items i was packing in a suitcase.

I think this was far from sound sleep, it was stressful--trying to make a flight and the convoluted plans I had to go through in my head and then try to achieve to make it to the airport in time, so I am going to go back to Level 1. It's been 6 weeks with the FWS so far and nothing positive report, and I can't get past Level 1 only once per day before my adrenaline levels seem to amp up. I will be checking in with my MD soon and ask for his analysis of this. Sorry I don't have anything more promising to report!

Day 40 of Fisher Wallace: Now what?

Today is Day 40 of my Fisher Wallace Story. It is 28 days of Level 1, only in the morning.

I haven't blogged in a while....because I don't really have anything to blog about. So far I have not noticed any changes in my symptoms. Today I will try increase from Level 1 to Level 2, only in the morning, and see if that has any effect one way or the other. Last time I tried this it was counterproductive, but I figure it is worth one more try before I bid the FWS goodbye.

I would love it if anyone else who has tried the FWS would write in and share what worked for them. 

Day 26: I kinda wish I hadn't started this blog

Due to my impatience and I guess adventurous nature, yesterday I tried Level 2 in the morning only. I had wicked bad insomnia last night, and remember a disturbingly violent dream. I can't remember having a violent dream since the late 1980s (yes, yes, I am dating myself).

I wish I hadn't started this blog because, according to all the materials I have read, the FWS can offer meaningful relief to people who are suffering from debilitating conditions. At worst it seemed that it should be neutral. According to the Fisher-Wallace company, "less than 12% of our customers return their device for a refund." If accurate, that is a huge success rate. On the Fisher Wallace website, a Dr. Bartky states, "There's no harm in trying the device; it can only help."

Yet here I am reporting only negative effects (don't get me wrong, I am writing this as a report on an experiment rather than criticism). I hope I don't scare away people who may really benefit from the FWS. On the other hand, if you are like me and appear to have paradoxical reactions to many treatments, then maybe this blog will somehow help you. Right before I started trying the FWS, I tried a stimulant that is supposed to offer some mood benefits, and it made me incredibly sleepy and groggy.

The Fisher Wallace website says that the FWS will: "gently activate the brain’s production of serotonin, beta-endorphins and other neurotransmitters required for healthy mood, sleep and pain suppression."

I'd love to know what that means for my own brain. What are the "other" neurotransmitters being activated? Is my challenge these other neurotransmitters, or is it somehow that my wires are crossed and I am having a negative reaction to the activation of the "positive" neurotransmitters? Wish I knew.

Day 23: still being patient

Well, I tried using Level 1 in both morning and evening and I think it amped up the insomnia again. The second session took place about 5 hours prior to bedtime, which is not supposed to affect sleep. 

In searching around the web this morning, I finally found a site where a few folks had posted about their experiences with FWS. I am linking to it here because I think the more information, the better (scroll down to comment section). I took heart that one person posted: 

"It took me several weeks of use to notice a difference ( that it was working). I almost gave up hope but then I started feeling better and kept getting better."

Maybe reading about this person's experience will help me stick with this, because this morning I was ready to give up. It's been 23 days for me overall, with the last 10 days at Level 1. 

I skimmed through the scientific research papers on the Fisher Wallace website this morning (since I couldn't sleep!) but didn't find much insight. The studies are about cranial electric stimulation using various devices, not only the FWS. I will go back to using the FWS only in the morning and stick it out a little longer. 

Days 17-20: Nothing to report

From Days 17-20 I used the FWS in the morning only, at Level 1. Therefore, it has been a total of 9 days at this level.

I have nothing to report. No changes in any symptoms of insomnia, anxiety or depression. I am definitely tired of the insomnia (bad pun!).

Today I will start using Level 1, twice per day. I wonder what will happen.

Day 16: be patient with the Fisher Wallace Stimulator

Using the FWS for only 15 minutes yesterday morning, at Level 1, was not helpful. I stayed up very late and slept poorly, with one wicked weird dream about being in southern California (the opposite coast) and trying to find a new place to live, involving a tented area adjacent to a trailer in a bad part of town. Weird. I won't go into more detail, but there was plenty.

This morning I went back to take another look at the Clinical Recommendations document I mentioned in a previous post. These were the passages that stood out to me:

"Most patients find that at the end of 20 minutes on level 1, they are more relaxed, calmer, and a bit drowsy. However, many may not feel these effects for 2 or more weeks after the start of treatment." 

I added the bolding for emphasis. I am impatient, as you may be, in my hope for the change that seems promised by the FWS. But I am going to keep these bolded words in mind and realize I have to stick with this for a little longer. At this point, after 4 days at Level 1 in the morning only, I do not think there is any noticeable relaxation or calm after using the FWS. But, if those feelings can take 2 or more weeks, I may have a long way to go.

The clinical recommendations also state:

"If there is no response after 1-2 weeks, depending on how urgent the symptom relief is, one would then go to level 1 twice a day....."

So, it sounds like I need to try the Level 1 in morning only for two weeks, and then go to Level 1 twice per day. I have 10 days to go. Wish me staying power. I hope we don't all get too bored by this blog in the meantime.

FWS and electromagnetic fields

I was reading last night about electromagnetic fields and, among other medical conditions, insomnia. While it appears that the medical jury is still out on the topic of electromagnetic fields and health impacts, even the International Association of Certified Home Inspectors, Inc., which seems like a pretty mainstream organization, has information on it. Their website states the following:

"Because epidemiologic studies have raised concerns regarding the connection between certain serious human health effects and exposure to electric and magnetic fields, the program adopts the hypothesis that exposure to electric or magnetic fields under some conditions may lead to unacceptable risk to human health. The focus of the program is not only to test (as far as possible within the statutory time limits) that hypothesis for those serious health effects already identified, but to identify, as far as possible, the special conditions that lead to elevated risk, and to recommend measures to manage risk."

This sounds like a smart application of the Precautionary Principle. Their website has information on how to test for and minimize exposure to EMF, as do many others. 

After I read this, I was wondering whether the FWS increases EMF exposure (that might seem obvious, but I don't have a scientific bone in my body) and what that might mean for people using the FWS who are sensitive to EMF (or others).

I would love to hear from anyone who has tested their home for EMF, installed products meant to shield people from EMF, removed certain products from their home, or has any other concrete experience with EMF and health symptoms.

Day 15: it's been two weeks--reducing again

Day 15: I remember another CRAZY dream from last night, involving a certain pro basketball player whom I only know of from gossip magazines, a U.S. Senator, and the last person I spoke to on the phone last night, a work contact. WEIRD!

My sleep was not the worst it has ever been, but not particularly great. I am going to only use the FWS on Level 1 for 10 minutes this morning.

Day 14: strange dreams

I woke up on Day 14 after having two crazy dreams during the night, with wakefulness between the two. The dreams were complex and in that way they were similar to  past dreams from years ago when I used to sleep well. But the plots of those old dreams always had a similar pattern, based in completely fantasy settings and characters. Last night's dreams were completely different in that aspect.  One took place in the house I grew up in, and one in a work setting. I can't remember the last time I had complex dreams that I could recall clearly upon wakening.

Days 12-13: starting back at a lower level

On the morning of Day 12 I felt like I was back to my normal self.  I used the FWS at Level 1, morning only.  Same on Day 13.

Day 10: reducing even more

Poking around on the FW website, I found another official-sounding document, entitled Clinical Recommendations for the Fisher Wallace Stimulator.

This document states: 

“Generally, in a patient with insomnia, anxiety, depression, or in fact any major psychiatric disorder, we would start him/her on level one (1), once or twice a day. The machine is automatically set to run for 20 minutes. Most moderate to mild conditions in outpatient practice would start with 20 minutes a day for the first week or two. 

If the patient has a more severe condition and is willing to comply with twice a day treatment for 20 minutes each time, then it may be appropriate to start them with sessions two times a day at the initiation of treatment.”

I decided to take a break from my FWS so my brain would calm down and perhaps return to a baseline state.

Day 9: needing to reduce usage

When I woke up on Day 9, I realized my insomnia had been getting progressively worse all week and—what really got me thinking about this—my pulse felt like it was ramping up. It occurred to me to consider whether these symptoms might have a connection to the FWS, the only thing that was different in the past week. It was a Saturday morning, and I sent an e-mail to FW customer service. A nice person wrote back just a few hours later:

“Level 2 is what we recommend starting out, because it is the level to which most people respond. However, in some cases, while level 2 is calming, it can also be too energizing. For the next two weeks, try using it at level 2 in the morning and level 1 a few hours before bedtime and see how you feel.”

Guess what -- the Fisher-Wallace Stimulator can be stimulating! I do feel a little dumb about not realizing that. I have to share that I am freakily sensitive to any type of stimulation, pharmaceutical or otherwise. I have side effects or reactions that are considered uncommon with even small amounts of treatment. It just never occurred to me it might happen with this device.

So, on Day 9, I tried the FW suggestion—Level 2 in the morning and Level 1 later, at least 3 hours before bedtime. 

But I still felt too “energized.”