sleeping sickness, fatigue, head congestion but no mucous

Zizzle · Post by **Zizzle** » Wed Apr 18, 2012 8:27 am

I've been dealing with a strange fatigue and "sleeping sickness" for a couple of weeks. I can sleep just about anywhere, anytime. My usual bedtime used to be around 11:30 and waking up at 7:30. Now, after I get the kids to bed around 9 pm (with great effort just to cook dinner and clean up), I usually sit to watch TV and fall asleep, sometimes during my favorite shows. I'm suddenly sleeping through all kinds of noise, and if I ever get a chance to sleep in on a weekend, I will easily sleep 10 hours. I started drinking coffee recently (one a day, not every day) because it no longer aggravated my MC. Even coffee is barely helping the fatigue. This morning a full cup gave me just enough energy to leave the house and go to work.

My head/brain feels "spongy," my nose and sinuses are clear, but when I take a deep breath, they feel like they might be inflammed (but no mucous). My eyes feel very swollen when I wake up - I feel like I've been hit by a truck. My head feels like vertigo, but if I close my eyes, there are no spinning or off-balance sensations.

Could this simply be seasonal allergies? I've never suffered from allergies in the past (other than post-nasal drip a couple of years). But it seems everyone in my area eventually develops allergies.

I know my autoantibodies are high, but I just had a work-up a month ago which suggested things are stable. I worry about autoimmune hepatitis, because I know it causes fatigue, but I don't have jaundice or any other signs. I'm also considering Epstein Barr reactivation (I had mono as a teen).

But I guess I'll take an antihistamine later today and see what happens. Of course the last time I tried one, I felt this same way from the medicine!

Any ideas? I feel like crap but my MC is virtually in remission!

:drinkingmedicine:

Post by **tex** » Wed Apr 18, 2012 9:01 am

Hmmmmmm. You've described a puzzling scenario. With clear sinuses, it's difficult to make a case for pollen allergies.

Taking an antihistamine may actually be counterproductive, because there is evidence that suppressing histamine releasing neurons, or inhibiting histamine synthesis can lead to an inability to maintain alertness. IOW, histamines are not only involved in allergic reactions, but they are also used for normal regulatory physiological functions in the gut and they act as a neurotransmitter. Therefore, they're probably essential for homeostasis. Maybe you're actually low on histmines.

Consider this quote from Wikipedia, concerning sleep regulation:

Histamine is released as a neurotransmitter. The cell bodies of histaminergics, the neurons which release histamine, are found in the posterior hypothalamus, in various tuberomammillary nuclei. From here, these neurons project throughout the brain, to the cortex through the medial forebrain bundle. Histaminergic action is known to modulate sleep. Classically, antihistamines (H1 histamine receptor antagonists) produce sleep. Likewise, destruction of histamine releasing neurons, or inhibition of histamine synthesis leads to an inability to maintain vigilance. Finally, H3 receptor antagonists increase wakefulness.

It has been shown that histaminergic cells have the most wakefulness-related firing pattern of any neuronal type thus far recorded. They fire rapidly during waking, fire more slowly during periods of relaxation/tiredness and completely stop firing during REM and NREM (non-REM) sleep. Histaminergic cells can be recorded firing just before an animal shows signs of waking.

http://en.wikipedia.org/wiki/Histamine

That appears to come from here:

http://biologyofkundalini.com/article.p ... =Histamine\

On the other hand, the extreme fatigue suggests that your MC may not actually be in remission - maybe you're just experiencing alternate symptoms, and the conventional symptoms, (primarily D, aches pains, etc.), are just asymptomatic.

Tex

Zizzle · Post by **Zizzle** » Wed Apr 18, 2012 10:58 am

That's interesting Tex. Thanks. I think I'll skip the antihistamine. I was beginning to wonder if my new coffee habit could be causing all this. Can I be addicted in so little time, with less than a cup a day? I should mention my Dad is borderline narcoleptic - he'll fall asleep at the dinner table while drinking coffee, or while driving, or virtually anywhere, after a full night's sleep. He seems totally immune to coffee or anything stimulating.

I'm beginning to think I'm a candidate for Hashimoto's. I've been having thyroid symptoms for months, if not years-- cold all the time, low body temp (97.5-98.1), low heart rate (under 60 BPM), low BP (90/50). I even starting gaining a little weight. I'm wondering if my MC "remission" might be bowels slowing down due to low thyroid. Problem is, my TSH was tested last month and it was normal! Should I ask for extra tests to find it (T3, T4)? My friend with Hashi's said her TSH was borderline normal when she was at her worst with symptoms much like mine. Maybe my celiac genes and autoimmunity have finally directed towards my thyroid?

And I was hoping to take a vacation from my doctors!

Post by **tex** » Wed Apr 18, 2012 11:58 am

I think that a thyroid problem may be a distinct possibility. Several of us on this board have very unusual thyroid issues, and the conventional TSH test, (and conventional treatment methods), doesn't work for us at all. My TSH, for example was mid-range normal, but my Free T4 was below range, so I've been taking a supplement for 7 years, now. My antibody tests were negative. Now, my TSH is below range, (but my Free T4 is also still below range, while my T3 values are always normal). When I tried to wean down the dosage last fall, (because of that low TSH result), after about a week at slightly less than half the dose, I developed severe breathing difficulties, and it took another week to 10 days at the regular dose, to resolve the problem.

Still, I show hypothyroid symptoms, such as low body temp, (same range as you), easy weight gain, brittle hair, outer third to half of my eyebrows missing, etc, even though I've been taking a supplement for 7 years. I'm reluctant to increase the dosage, because of the fact that my TSH result is already below range.

I'm afraid to go to an endo, because most of them are going to go by the book, and that won't work for some of us, obviously.

Since narcolepsy has a genetic connection, that's certainly another possibility.

Tex

Zizzle · Post by **Zizzle** » Wed Apr 18, 2012 12:46 pm

Well I'm going to do my best to "snap out of it," and will try to go to bed at the same time every night (10 pm-ish) for a few days to see how I feel. I will probably request thyroid testing eventually, especially as my hair and skin have gotten significantly drier in the past weeks too. I looked up narcolepsy, and ta-da, it's tied to the HLA complex.

Although the cause of narcolepsy was not determined for many years after its discovery, scientists had discovered conditions that seemed to be associated with an increase in an individual's risk of having the disorder. Specifically, there appeared to be a strong link between narcoleptic individuals and certain genetic conditions. One factor that seemed to predispose an individual to narcolepsy involved an area of Chromosome 6 known as the HLA complex.[11] There appeared to be a correlation between narcoleptic individuals and certain variations in HLA genes, although it was not required for the condition to occur. Certain variations in the HLA complex were thought to increase the risk of an auto-immune response to protein-producing neurons in the brain. The protein produced, called hypocretin or orexin, is responsible for controlling appetite and sleep patterns.[12] Individuals with narcolepsy often have reduced numbers of these protein-producing neurons in their brains.[12] In 2009 the autoimmune hypothesis was supported by research carried out at Stanford University School of Medicine.[13][14]

My dad's mom was Swedish (and had a thyroid problem), hence the genetics.

http://en.wikipedia.org/wiki/Narcolepsy

Zizzle · Post by **Zizzle** » Fri Apr 20, 2012 8:53 am

I think I uncovered the mystery, at least in part. For the last week, I've been nibbling on GF vegan energy bars made by a friend of mine who is starting to sell them. I just looked up the ingredients and discovered they have soy protein powder in them! Yesterday, a good day, I didn't have them the night before or during the day. I had more of the bars last night, and I woke up with the same hit-by-a-truck feeling. I still suspect coffee, maybe almond milk, and maybe my thyroid, but I plan to do some trial and error and see how I feel.

Kari · Post by **Kari** » Fri Apr 20, 2012 9:22 am

Hi Zizzle,

It's amazing how we practically have to be Sherlock Holmes with this disease. I applaud your perseverance in trying to solve the "mysteries" of your symptoms. There are times when I just try to "let it go", but whatever the issue is, I don't seem to get peace of mind until I've worked out a logical answer. Even if I don't consciously think about it, it keeps working in the back of my mind until something finally crystallizes (the maddening thing is that it may still be the wrong answer:)). As I've said before, for me, MC is as taxing mentally as it is physically.

Hope you feel better quickly.

Love,
Kari

Post by **tex** » Fri Apr 20, 2012 9:43 am

Vegan products tend to be sources of land mines for most people with food-sensitivities. I'm glad you tracked that down.

Tex

draperygoddess · Post by **draperygoddess** » Fri Apr 20, 2012 11:29 am

Wow, who'da thunk it? I will think of you next time I have that "hit by a truck" feeling and put on my detective cap!

Martha · Post by **Martha** » Fri Apr 20, 2012 12:00 pm

Soy makes me exhausted and sleepy, too.

jmayk8 · Post by **jmayk8** » Fri Apr 20, 2012 12:01 pm

I dont get tummy troubles from soy and soy came up to be extremely safe for me to eat on my MRT however, whenever i eat it i get the WORST headaches and body aches!

Zizzle · Post by **Zizzle** » Fri Apr 20, 2012 12:34 pm

BTW, interesting tidbit on narcolepsy...I wonder if any of our members with the gene have signs of the condition? I don't have the gene.

What is the best HLA marker in narcolepsy?
The best HLA marker for narcolepsy is HLA-DQB1*0602. Over 90% of patients with narcolepsy-cataplexy carry HLA-DQB1*0602. This marker is more specific and sensitive than the old marker HLA-DR2, especially in African Americans.

Can HLA testing be used to diagnosed narcolepsy?
Absolutely not. About 20% of the general population carry the exact same HLA subtypes (HLA-DR2, DQB1*0602, etc). Furthermore, many patients without cataplexy do not have HLA-DQB1*0602. The HLA subtypes are only predisposing factors but are not sufficient by themselves to cause narcolepsy.

Zizzle · Post by **Zizzle** » Fri Apr 20, 2012 12:36 pm

Martha,
I never suspected simple exhaustion, and not a flare of D, would be a food sensitivity symptom. Glad I'm not alone!

Post by **tex** » Fri Apr 20, 2012 2:00 pm

14 of our members, (who have had the Red Cross gene test), have the HLA-DQB1*0602 gene. That amounts to 20% of the tested members, (one member had the Prometheus Labs test - I didn't count that one, because they charge twice the money, but they only test for the two most common celiac genes).

I don't recall anyone complaining of classic narcolepsy symptoms on the board.

Tex

Lesley · Post by **Lesley** » Fri Apr 20, 2012 10:16 pm

Zizzle - I often get the hit by the truck exhaustion with no D, and as my only symptom. I now know that it is connected to this disease. *sigh*