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Lyme Disease ForumsGeneral & SupportWhat neurological problem can this be?
04/19/2012 03:53 PM
wanthealth12
wanthealth12Posts: 309
Member

I have NOT been able to sleep for 8 yrs.

I resorted 8 yrs ago to heavy meds cause I had no choice but to sleep or Id die.

Here it ismany tries later to get sleeping on my own and cant.

Doc has had me take Melatonin ( the worst reactions)

5htp -nothing.

I feel IM going crazy now.

I cant rest because my meds are since Nov not working the same.

My brain is for some reason not responding the same.

I also started to get a new symptoms about 8 months ago wich Ive never had in my life wich is a shaking tremory feeling (slight one) inside my head in the middle

It occurred alot 8 months back and died down and I dont really get that tremory thing much like it was before.

Side Note: that tremory feeling was there when I was on no treatment and I also had a intense 6 month long spine stiffness and pains that would go up my spine and into the back bottom part of my head

I really did think I was gonna die out of No where.

another side note: everytime Im tired wich is all day but I have these feelings of "shutdowns"

like Im shutting down.I become exhausted, moody,I cant even get up out of my own way.

It happens bad between 3-6pm

then I started get the all over nerve irritation burning feeling.

I feel like I could fall asleep and everything is shutting down but inside my head it just doesnt click in there.

and I would not sleep ever if it wasnt for the meds.

Im really getting so scared and tired of wondering what else is wrong in there that they dont know what it is yet.

Im having an extra tired anemic menstrual day so bear with me Im annoyed at the world today and I hate myself today because I feel if my Brain wont ever work again than I will never get better

Reply

04/19/2012 04:25 PM  Top
amycwusa1976
 
Posts: 45
Member

Hi there,

Not to ask a stupid question, but have you ever had a sleep study?

What was the result?


04/19/2012 04:36 PM  Top
runner64
 
Posts: 237
Member

I am curious what you are taking for sleep now. As well, I do understand how lyme can hit hard brainwise in the sleep. It did me and the more progress I make the more (though little slow but coming )it is showing me it will return.

From 0-3 every 24 - 36 hours many times. Now about 5. Broken and cycling twilight a lot but I feel it will change more with more bugs buried.

I'm sorry it hit you as well.

Would you mind telling me what meds you take for sleep?

First year Mar 2012-2013 on 6 plant abx only.Second year had to add pharma abx in conjunction.Physical brain/head/eye symptomatic too severe and excrutiating "just coping with the physicality feeling infection in cns thru brain, and brain overprocessing with no sleep daily" rendering me non functional since Oct 2010. Can't read a book, follow programs properly, stutter talking due to the "physical feeling and interference in head." Stuttering less with more coming down since pharma abx added.

It's slowly helping. I dry sauna every other day/colonics daily.Very strict diet.

Sida Acuta-babs/bart*Houttunyia-bart*Stephania-lyme/bart*Andrographis-lyme*Cat's Claw-lyme*Japanese Knotweed*lyme/bart*Artminisin-babs*Serrapeptese-biofilm* GSE-Cysts*

Sporadic severe hits of acute pain in body/joints/bone pain & face/head/brain/bone & nerve pain 95% healed/gone from plant abx only. 5% that is left is rare and not severe only in right forearm bone and around left extra orbital eyebone.Body flutters less.Chronic acute head/eyeball pressure gone from plant abx in first year from plant abx only.Ammonia feel inside head mostly gone from plant abx only.Visual distortion gone from plant abx only.BUT,brain/head/eyeballs still BAD/chronic/acute which is why I started pharma abx in conjunction because this is still severe & won't come down enough>>>Infection/brain encephalitis (brain inflammation somewhat less now) feel inside head,wooshing,rage/brain overstimulation and over processing thoughts too fast,chronic. NON cortisol related, it's simply pathogen load causing overstimulation. Still cope daily with brain physicality and non functional. Hard head hit. Debilitating insomnia.

Added Bart/Lyme pharma abx = Apr 13 zithromax in conjunction with my 6 plant abx & May 2 added rifampin. (I dose very aggressively in tsp of my homemade tincture plus drink tea decoctions of my plants and herx daily on both plant and pharma abx. No normal baseline yet but coming.)

04/19/2012 04:50 PM  Top
amycwusa1976
 
Posts: 45
Member

Yes Runner, I've had he same experience. As I have been recovering, the sleep is better.

I have found Lunesta and Trazadone helpful. Lunesta hs a longer half life than ambien.

But you will build tolerance. I have found with Trazadone there is no tolerance or habit forming issues.

Someone told me once to remember our bodies and minds want to sleep. it is our natural, healing state.


04/19/2012 05:13 PM  Top
peppermini
 
Posts: 71
Member

wanthealth12,

I take HerbSom, which is a natural sleep aid developed by Dr. Zhang. (I am also on his Lyme Protocol as well).

I have not had extreme issues with the inability to sleep as you have had, but nevertheless I was not able to sleep more than 2 to 4 hours a night for many months without a sleep aid of some kind...

HerbSom has allowed me to get 7 restful hours a night with no side effects, which I am sure has contributed to the overall improvement in symptoms I have experienced in the last 4 months.


04/19/2012 08:45 PM  Top
wanthealth12
wanthealth12Posts: 309
Member

peppermini

nothing herbal even works for me anymore

its so good for you that your sleep issue is not too far gone

i also developed a worsening of symptoms years ago due to post traumatic stress disorder

from a cruise from hell.

we were hit with a 75 ft rogue wave ----the perfect storm.

Ironically I got very sick after that.I think it triggered what was in remission or dormant in my body-Lyme being 1 of them


04/19/2012 08:48 PM  Top
wanthealth12
wanthealth12Posts: 309
Member

no I havent.I always wanted to but cant sleep anywhere even with my heavy meds in my system unless its my bed.

Terrible.

I feel unsafe or something cause Im drugged up on heavy sleeping pills in a doctors office with wires hooked up to me.


04/19/2012 09:05 PM  Top
Polkahero
Polkahero
 
Posts: 225
Member

My former PCP wanted me to do a sleep study last year when I first got hit with this stuff. I was literally only able to sleep for a couple hours a night. Tried Ambien, Restoril, and herbal stuff and nothing helped. I refused to do the sleep study because I knew it would be a waste of time and money.

I finally saw a neurologist who specializes in sleep problems and he prescribed me Klonopin. That finally allowed me to get at least 6-7 hours a night.

I think this is all Bartonella related. Since I started treating for Bart, this has gotten worse for me again. My LLMD just prescribed me Neurontin (gabapentin) for both neuropathy and sleep which I think is helping.

I got screwed by Lyme Disease!

Previous discussions I participated in:
Worried About Levaquin
Epsom Salt Bath Question
Omnicef

04/19/2012 09:57 PM  Top
waxby
waxbyPosts: 4129
VIP Member

~~~Hello wanthealth,

~~~We must not mis-use our afflictions ...

~~~As long as your awake, Meditate ...

~~~Here's just one of a million ...

``````` A Meditation ```````

``` by Mitchell ```

~ Nov 25 2011

~~~Visualize yourself in dark empty space, and like our sun, from within radiating out in every direction into the universe, love-healing energy ...

~~~Please don't confuse meditation with escapism.

~~~Or silence with dead silence.

~~~Rather think of silence as alive wide awake silence.

~~~Your silence will bloom ...

``` ~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey~~~Mitchell ```

~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
~~ "Sometimes, we gotta go through hell to get to 'Heaven'" -Mitchell
~~ "The way out is in" -Mitchell
~~ "A miracle speaks ...'I don't believe in Miracles.' " -Mitchell
~~ "Life is good, even when it isn't." -Mitchell
~~ "Sometimes you gotta lose to win." -Mitchell
~~ "It's easy when it's easy! Find reason, purpose and meaning when it's hard!" -Mitchell
~~ "If you're gonna think, think again!" -Mitchell
~~ "Make it so!" ...
~~ “When life do what it do, as it do-do, simply say ‘Of Course!’ (to soften life’s ‘blows’)” - Mitchell
~~ A master once said, "When embarking on the spiritual path, 'Oh Dear! There's no turning back! You've really done it now!' "
~~ “Not thoughts be your guide, rather, guide your thoughts.” -Mitchell
~~ "That which is within, and that energy entering this body/mind/spirit, causing harm and ill health, must and will be transformed into love healing energy and sent out in every direction" -Mitchell
~~ One morning ten years ago I awoke from a dream chanting over again and again, and writing this down so as not to forget ... "It doesn't matter who did what, there's nowhere else to go but up ..." -Mitchell
~~ "This life, our life, and what we do with it on this planet is “simply” a display, a reflection, of what is going on in our consciousness. The proof is in the puddin’. Look at our planet, what humans are doing to it, and with it, and to one another, and ask yourself ... ~ 'How’s this working for us/me?' ” -Mitchell
~~ "Step away from monkey mind, not tangle ... Observe ... Inhabit your higher self ..." -Mitchell
~~ "Anything is possible, but manythings you think are true, are not ... " -Mitchell
~~ "Grow where you are planted ..." -Mitchell
~~ "Change your future now ..." -Mitchell
~~ “Write your equation … 4 u r the sum of u … “ -Mitchell
~~ “We are largely a product of our environments … how’s your inner environment doing? …” -Mitchell

04/19/2012 11:47 PM  Top
runner64
 
Posts: 237
Member

Hi Amycwusa1976!! Smile I wasn't asking about which meds she was on to find one lol. I am very benzo and sleeping pill (z-drugs) savvy and sleeping pills go to the same place in the brain as benzodiazipines so in essence they are the same med.

I just wanted to link a discussion we had that explains more about them.

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/3629502-bartonella-is-making-me-mean

Wanthealth12 if you are one or both of the above and have been for a time, not sleeping anymore on your original dose or higher can be a "sign" of tolerance. It can get confusing however with neuro issues in the mix like lymes which also prevents sleep.

And tolerance is only one issue with these as well. This link explains a bit.

http://www.benzosupport.org/notes_on_tolerance.htm

If you want more information please do not hesitate to pm me.

Let's heal right!! xoxoxo

Post edited by: runner64, at: 04/20/2012 12:16 AM

First year Mar 2012-2013 on 6 plant abx only.Second year had to add pharma abx in conjunction.Physical brain/head/eye symptomatic too severe and excrutiating "just coping with the physicality feeling infection in cns thru brain, and brain overprocessing with no sleep daily" rendering me non functional since Oct 2010. Can't read a book, follow programs properly, stutter talking due to the "physical feeling and interference in head." Stuttering less with more coming down since pharma abx added.

It's slowly helping. I dry sauna every other day/colonics daily.Very strict diet.

Sida Acuta-babs/bart*Houttunyia-bart*Stephania-lyme/bart*Andrographis-lyme*Cat's Claw-lyme*Japanese Knotweed*lyme/bart*Artminisin-babs*Serrapeptese-biofilm* GSE-Cysts*

Sporadic severe hits of acute pain in body/joints/bone pain & face/head/brain/bone & nerve pain 95% healed/gone from plant abx only. 5% that is left is rare and not severe only in right forearm bone and around left extra orbital eyebone.Body flutters less.Chronic acute head/eyeball pressure gone from plant abx in first year from plant abx only.Ammonia feel inside head mostly gone from plant abx only.Visual distortion gone from plant abx only.BUT,brain/head/eyeballs still BAD/chronic/acute which is why I started pharma abx in conjunction because this is still severe & won't come down enough>>>Infection/brain encephalitis (brain inflammation somewhat less now) feel inside head,wooshing,rage/brain overstimulation and over processing thoughts too fast,chronic. NON cortisol related, it's simply pathogen load causing overstimulation. Still cope daily with brain physicality and non functional. Hard head hit. Debilitating insomnia.

Added Bart/Lyme pharma abx = Apr 13 zithromax in conjunction with my 6 plant abx & May 2 added rifampin. (I dose very aggressively in tsp of my homemade tincture plus drink tea decoctions of my plants and herx daily on both plant and pharma abx. No normal baseline yet but coming.)
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