posted
Hi. I'm at the treating-for-over-a-year, still really sick, and losing my mind stage here.
My doc is moving me to IV antibiotics...working on the insurance for it. Or trying to.
I think my main symptom is feeling like I'm going to die. Or the worst one, at least. All together, it's profound weakness, dizzy-feeling, going-to-pass-out feeling, disconnectedness, neuropathic/burning pain, and just a very very strong 'malaise' or sick feeling, and often heart pounding in the afternoon. Put all that together, and it's very, very miserable. I have other symptoms, too, of course. It seems ridiculous to me.
I have some days where it's not so bad, but if I have 3 or 4 really bad days or one day of a very strong episode of getting so sick I'm debilitated..I start coming apart at the seams.
Anyway. This is about one symptom, really. Many days, I wake up. In pain, sick, dizzy. Pull it together to eat, take my pills, shower. I'm usually getting kind of shaky and feel bad again by then. Some days, on 'bad' days, I get exhuasted in the early-mid afternoon. I'll fall asleep (can't stay awake), and have this bad/crazy sleep. It's like a half-awake sleep, I'm often trembling/weak/sick IN MY SLEEP (I'm not dreaming it, I'm half awake and it's my body_). It's a terrible feeling. Often it gets so bad I force myself awake again and get up because I can't handle it. This pretty much ONLY happens when I sleep in the day..it doesn't happen at night.
And though I do have some bad episodes of anxiety, what I described above does NOT feel like anxiety. It feels like profound sick-feeling, weak, trembling...neuro. And I do take lots of magnesium.
Another strange thing, there is a thing that used to happen at this same time/circumstance of the day...I'd get these sudden, hard "jolts" in my torso/body....like a VERY strong startle response + rollercoaster type drop feeling...but VERY strong, like a punch. Strange feeling to try to describe. THAT only happened in the day, in these day-crash naps. That seems to have nearly gone, but I'm getting this other horrible thing.
Anybody else have this kind of strange nap/sleep issue?
Posts: 322 | From Venice, CA | Registered: Sep 2008
| IP: Logged |
posted
Hi, I wake up feeling "sick/toxic" alot of mornings. I recently stopped eating my (organic) ice cream (still contains sugar) and my non-organic popcorn at night. I was doing it pretty much every night. I really think that trying to process that sugar and non-organic corn whilst I slept was making me wake up sick.
This is just me, and what I can pass on to you. Our systems become so dysregulated that even our diet can make or break us.
Posts: 113 | From CA | Registered: Jun 2010
| IP: Logged |
posted
Thank you sophie. My diet is pretty strict. No gluten, virtually no dairy, and very, very little sugar.
I do eat fruit, berries and green apples. And I do drink 1/2 of one only-slightly-sweetened cola I get at whole foods. (it has only a small amount of cane sugar, much less than others).
Not to just complain, but I wake up sick every single morning. I'm wondering about this afternoon sleep/trembling/nightmarish thing that happens.
Posts: 322 | From Venice, CA | Registered: Sep 2008
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Michael,
I get weird things during naps...they are esp. noticable because I think that during our naps our sleep is not deep.
I mostly startle because my breathing stops during a nap attempt...
all of the other stuff that you've described I have experienced at one time or another as well...many times all at once but each sx at varying degrees....
I know that you have had a rough go of it so far with little to no response...hang in there. I had '0' response until just recently.
and i do mean '0'. I have seen some imp. in the last few weeks after taking an abx break!!!!
Moving this up for you hoping that someone else is able to help you out a bit more!
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
HI Micheal,
I can't be much help. The only thing that I can say that may resemble this symptom is terrible nightmares since I have taken Mepron. I didn't believe that a medicine could cause nightmares but sure enough it's on the side effects - nightmares.
Do you think it could be related to one of your medicines?
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
posted
Mihael, I use to get that exact same jolt usually after I eat and lay down on my back and start to dose off. Its like a lightning bolt. Have not had that in a while after ABX. Wakes me right up.
-------------------- JJG Posts: 33 | From Scranton, PA | Registered: Sep 2009
| IP: Logged |
posted
Mihael, I use to get that exact same jolt usually after I eat and lay down on my back and start to dose off. Its like a lightning bolt. Have not had that in a while after ABX. Wakes me right up.
-------------------- JJG Posts: 33 | From Scranton, PA | Registered: Sep 2009
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Its a drained tired sleep from the klonopin. I dream clear and much and wake up disoriented. On the days the dreams are many, are my worst psych days. Pain wise, blunt pain in center of chest (muscle), some joint pain, but the mind stuff is the worst to deal with. I sympathize and know. Naps during the day are the worst. Confused when I get up. Every 6 hrs. klonopin till we figure out what meds will work. Day by day, minute by minute. What meds are you on? My main symptom is I feel like I'm going crazy and don't know who I am. Anxiety is a big issue with me. I have bart, lyme and ehrlichia.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
posted
I also get jolts as I am falling asleep and have the tremors/trembling during the night and when I wake up in the morning- at always happens when I seem to be in a half awake/half sleep state. If I force myself to get up and move around, the tremors (they feel like an internal shaking) subside. I have been in treatment since 11/09, undiagnosed Lyme since 2002, I went on IV 10 weeks ago and the tremors are very slowly getting better. I used to have 15-20/night and I am now down to 1-2 at night and in the morning. So perhaps the IV will help with your tremors as well. Good luck.
Posts: 233 | From Hudson Valley | Registered: Jun 2010
| IP: Logged |
posted
I was just describing the same thing to my mom today. It mostly happens for me during the day if I try to nap. I start to doze off and feel like I stop breathing, and I feel like I am going to die. My brain gets all scrambled up. I didnt mention it to my dr, I guess I probably should.
The only meds I take are abx.
Posts: 75 | From NE Ohio | Registered: Mar 2010
| IP: Logged |
What you describe sounds VERY familiar to me. I used to get this ALL THE TIME when I was much sicker two years ago.
Here is how I would describe it:
Sometimes while falling asleep, in the half-sleep state, I'm suddenly overcome by this horrible electrical anxious energy that is DIFFERENT from a panic attack. It feels like my body should be shaking even though it's not. It feels a bit like having low blood sugar. Usually it causes me to startle fully awake. When I open my eyes I find that my heart is racing and my vision is weird for a few minutes. Sort of "sparkly" or "buzzy" if that makes sense.. kind of migraine-ish.
The other thing that happens is that I get this weird somersaulting/roller coaster drop feeling when I am half asleep. It can happen over and over again. It wakes me up but I am so exhausted I just fall back asleep, only for it to happen again. It is a very upsetting symptom. It tends to accompany the electrical/anxious/shaking type of sleep.
These symptoms definitely are worse during daytime naps but I have had entire long nights where I get this stuff for hours on end.
It is often accompanied by night sweats for me.
I really don't get it very often anymore but I actually just woke up from a night like that. I have been feeling GREAT for the past week so I'm hoping it's just another herx/healing phase.
I can't believe you mention the roller coaster drop feeling... it is a horrible feeling, like your whole body is plunging through space. It only lasts for a split second but it's very upsetting. It's different from just startling awake.
I went through a period two years ago where my sleep felt like this almost every night.
PM me if you want to talk more about this.
-------------------- Symptoms since age 4 IGM positive Western Blot (Bb) PCR positive Spiro Stat (Anaplasma) Suspect babs and bart Posts: 226 | From Currently in Los Angeles, originally from Malvern, PA. | Registered: Feb 2010
| IP: Logged |
posted
wow, i can relate SOOOO much... except for the burning and jolts. everything else i completely understand!
i am really sorry you have to go through this... i wish i had some advice for you
the only thing i've learned to do is to be as lazy as possible... otherwise i get that same severe awful trembling sleep too. not being active helps.
Posts: 220 | From Kansas | Registered: Mar 2010
| IP: Logged |
posted
I get those same jolts. They are very annoying. Mine occur when I am lying down. I tend to sleep on the couch, it is a recliner, which decreases the number and severity for me. I get them sometimes when awake during the day. I am paranoid that I will get one when driving. Not to mention, my arms and legs tend to make a jerking motion and can only imagine what people think when I am in public.
Posts: 60 | From NJ | Registered: Jun 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Printer-friendly view of this topic