Sleep disorder and S.A.D. (Seasonal Affective Disorder)

Discussion in 'Lyme Disease Archives' started by Renae610, Dec 6, 2008.

  1. Renae610

    Renae610 New Member

    I know that Chronic Lyme is a persistent infection of the CNS (central nerveous system), and that my 21 year old daughter's sleep disorder (unrefreshed and also severe circadian rythym shifting over weeks, months, etc) is related to it. Over the years, she has not found any supplements to be helpful for sleep. Any of the meds recommended by the LLMD, she refuses to try because she always has bad reactions to meds. Any advice?? I am concerned, because I know how important sleep is to the healing process.

    Gradually she is also showing signs of S.A.D. (seasonal affective disorder) too, which I believe is also neurological. So I asked our integrative doctor what Light therapy machine to get. He sent a letter with this information, so we could use this to see if insurance will pay for it. Otherwise the office manager said the full-spectrum ones available at a local store for $30 should work. Does anyone else here have S.A.D.? Did insurance pay for your machine? And do you recommend a certain machine?

    Thanks for your advice!
  2. victoria

    victoria New Member

    Hi Renae

    This too is one of the toughest things for my son to beat, supplements haven't been of much help other than using occasionally 1 mg melatonin or the doxalymine succinate form of Unisom (not dipenhydramine) - altho he gets a hangover effect from the latter. Getting to sleep for me is as difficult as it is for my son... being older I'm comfortable with higher doses of melatonin, which helps, as does the unisom, but hate the hangover effect too.

    He also won't/can't take any RX meds for it, as he's had bad side effects. Altho he finally tried klonopin recently-- it really helped, he definitely felt better and more refreshed, but had an intolerable side effect within a week sadly. IF it had helped, he'd have continued with it I think, as he's so tired of being tired. I also had a side effect, altho it was about 6 months of using small doses.

    My son tried the lights but to no effect; however of course that doesn't mean it won't work for your daughter. How far north do you live?

    I remember reading that 10,000 lux of light is what's necessary; some recent research has suggested it may not have to be full spectrum, that it's the brightness that matters; altho I'd still personally go for the full spectrum.

    Let us all know what ends up helping if anything. We too are frustrated.

    all the best,
    Victoria

    PS: On a side note about sleep and waking up in general, I always found it difficult to awaken in early AM in the dark all my life as I'm very light sensitive; I had one of those 'sunrise' clocks that gradually brightens over about a 30 minute period - really helped me to awaken early when I had to, and always awake before the alarm actually went off.

  3. Renae610

    Renae610 New Member

    Hi!
    I had not heard of sunrise clocks until you mentioned it, and now too, the integrative doctor just sent me information from a company who sells them and other light therapy for S.A.D. Sounds really good!! I'm glad you were helped! <smile>

    I saw online, a test for melatonin level. I'm not sure how that would work, if this level changes in us throughout a 24 hour period.

    I had trouble staying asleep several years ago as I was moving into menopause... and I found out (test) that I needed a product, Cal-Mag, and this cured my problem. I only wish my daughter's disease were so easy! As her sleep time continues to shift around the clock over weeks/months, this complicates her other daily sleep battles and whole body symptoms too....

    Being awake in the daytime makes her more irritable and foggy-brained, probably overstimulated from light, even though she keeps the shades pulled in her bedroom, and I have blinds adjusted around the house. So now the Lyme-literate Opthamologist advised her to get blue-blocker lenses, but the lense maker said most people don't like them! She decided to get clip-ons to use when she wants to.

    Has trouble falling asleep. If she doesn't fall asleep before dark, she's too alert all night!

    She gets this pain in the front of her forehead, probably the pineal gland...

    Sleep in unrefreshed. She wakes periodically. Insomnia. and more problems I don't have time to explain!!!! .....

    Anyway, the naturopath advised that she drink Noni juice and apply progesterone cream, and let him know if this starts change in her sleep. Got a setback from Noni! Don't notice the cream doing anything yet, but maybe in males or females, hormone levels play a role with the sleep issue.

    Thanks for sharing, and all the best to you too!
    ~Renae


    [This Message was Edited on 12/08/2008]
  4. Daisys

    Daisys Member

    These two problems seem to be the worst of my symtpoms because they have responded less to treatment, and the SAD seems to get worse as the years go by.

    I got the lights with the hat, from this site, and I end up using it in the midafternoon, right when it's time to start getting dinner started--because I feel like the day is done, and it's time to wind down for bed. I also heard that the light from computers is like morning light, and keeps people awake, so I get on the computer in the morning, to wake up.

    The one thing that helps me the most is to go on a sunny vacation every December. It's the worst month, and between holidays there's usually some good deals, because people don't usually travel then. I've asked my husband to bid for holidays every early December. It gives me a literal health boost, that helps me thru the winter. I start feeling better by the end of January.

    Also, it's true that even if it's overcast, the more time spent outside, the better for SAD. But, here, when it's so rainy, it's hard to stay out there. I just hate it--some years it's like living in a cave. This year the sun has come out quite a few days, but I still am constantly sick, and have no energy. I also feel down. I take more and more sam-e, and then less and less in the spring so that I usually take one a day in the summer, and get up to 4 or even 6 in December. I know that sam-e isn't for everyone (especially if they tend to have bipolar mood swings), but it does help me with the down mood during winter.

    When my husband retires, we'll end up in a southern state, for that very reason.

    I'm on meds for the insomnia, and I have a feeling that I may have either permanent damage, or it will be a long time before that heals. When I voiced that, my LLMD didn't disagree. I forget what he said, but I got the impression it's common for insomnia to be the last to heal.

    I realize that my input here is of limited use for children. But, whoever reads this can take what they can use, and leave the rest. :)
  5. Renae610

    Renae610 New Member

    I really appreciate hearing how you all deal with this! Very helpful to me.

    I just picked up Suzanne Sommer's new book, Breakthrough, in which she's interviewing wellness doctors, and they are saying that you've got to balance all hormones, including the adrenals/cortisol, then we can work on resetting the HPA axis (Hypothalamic-pituitary-adrenal), and this leads to getting the circadian rhythms back on track. WOW!! I see there is a path to curing my daughter's cirrcadian rhythm problem, eventually!! But when one is chronically ill so long as she has been, the adrenals are undoubtedly very burnt out and take time to recharge. Suzanne used bioidentical cortisol, Cortef or hydrocortisone for adrenals. Anyway, my daughter must keep killing off Lyme & Co infections first, while providing adrenal support supplements, but the goal is to balance all hormones then and this should fix at least the rhythms part. Maybe insomina will go too, then. I am feeling new hope for her!

    But in the meantime, you seem to be able to manage your fatigue and sleep with lights?
    If Lyme is causing the trouble for the HPA axis, then I wonder if the lights will help my daughter? Guess it is worth a try!!

    Thanks much!!
    ~Renae
  6. Daisys

    Daisys Member

    I missed this post--sorry, but I'll be more detailed.

    Using the lights is of minimal help to me, although it's a valid strategy. Going to a tropical area for a week or more does a tremendous amount of healing, but it sure is expensive!

    What helps me sleep is Xyrem. It is the King of sleep aids, and has made a huge difference in my overall health to get that deep wave, healing sleep. I felt so much better on it, I thought I was heading for full remission (of CFS), and then was hit with a relapse. Then I found out that I have lyme disease. I think Xyrem is one of the most powerful tools I have to getting better. There's no substitute for good, healing sleep. It's very expensive, so I'm glad my insurance covers it.

    I learned a lot about it by going to the site All About Sleep, and reading the narcolepsy forum. they've been using xyrem for years and all their trouble shooting posts helped me work with it, and allayed any concerns I had for using it.

    My energy levels seem to respond more to how well I am generally, than to any one factor. I am on lots of supplements that are supportive for the body, and am fighting lyme disease, take anitviral supps, and also supps that keep the cytokine level down. Some of the symptoms I have--hormonal imbalance, low energy, insomnia--are from cytokine levels. It seems I have a low level viral infection that keeps my immune system revved up. So, it's quite a balancing act to fight infection while keeping the immune system calm. My doctor said it would take a while for the supplements that bring the cytokine levels down to work, but I can say I already have seen a difference after a month.

    What I'm taking to lower cytokine levels are Fibroboost 2 caps twice a day, Quercetin 500mg 3 times a day, and Phytostan because of the grapefruit fruit extract, which helps the other supps work better. I don't mind getting it in the Phytostan, because Candida is always a risk with this illness.

    This is a very complicated illness, and every one has their own version of it. It's too bad there isn't more research being done to help us. I'm just so glad I found a doctor who understands lyme and related illnesses, and is treating me.
    [This Message was Edited on 02/14/2009]
  7. Renae610

    Renae610 New Member

    That is all very interesting and helpful!!

    Thanks!! I am going to share this with my daughter.
  8. Perrier

    Perrier New Member

    I was interested Daisy in your comment about the relapse; my daughter was diagnosed with CFS in 2002; had one relapse in Dec. 2006--which we thought was due to her taking on a job after so many years; then in Oct. 2008 she had such a major relapse; and believe it or not but she was just days before the total collapse feeling so well; and had been feeling well for 15 months and though she was in remission; there was no stressor, just a crash. So then the doc. tested for Lyme and says she has it; so my beef is why the heck weren't all these doctors checking for Lyme years ago? It is Lyme, which is causing all these problems; and lyme is a medical entity unto itself; now I no longer know what CFS is except the sign word for symptoms. And I thought I was CFS savvy after having read so much like a maniac; I think there is some problem and I can quite put my finger on it; is it that doctors are understanding Lyme better; is it that there were CFS politics. I don't know, but I do know that if it is true my daughter has Lyme then that is an illness unto itself with a host of problems, as we all see.
  9. Renae610

    Renae610 New Member

    CFIDS/CFS and Lyme can be separate diseases. The test my LLMD used to diagnose my daughter with CFIDS/CFS is from http://www.redlabsusa.com/ and the Lyme testing was through IgeneX.

    Yes, there is much politics and medical/healthcare misunderstandings surrounding the Lyme diagnosis.

    And I found that even a greatly respected immunologist could not diagnose my daughter with CFIDS. Only the LLMD knew to order the RedLab test.