Crashing 50% Of The Time... How Often Do You Crash? Similar Symptoms?

[Kellysavedbygrace]

In the last year I've had lots of improvements. I've gone from being homebound to limited driving. I've gone from not being able to exercise to exercising strenuously about 3x a week. I'm going to the grocery store and doing some limited cooking but I'm really still struggling with crashing. (at least that is what I call it.)

I crash about 50% of the time. This means non- functioning in bed. It usually lasts one or two days. During this time either my husband or mother takes care of the kids or they take care of themselves (thank goodness they are old enough to if need be.) It always involves the following severe symptoms:

- body ache. (like hit by a Mack truck)

- fatigue (like getting to the bathroom requires unbelievable effort and on really bad days need to hold on to walls to walk.)

- brain fog (can't think productively mostly think about is survival- breathing, not fainting, etc.)

- sensory overstimulation. (lights, sounds, touch all hurt so I try to stay in a dark room w earplugs or

headphones- I can usually watch Netflix and sometimes I have the strength to be on DINET using my iPad while flat on my back- like right now. My husband and I joke that how I feel is directly proportional to the amount of Netflix I've watched.)

It almost always feels like the sympathetic nervous system is shutting down the parasympathetic. I get

gastroparesis and silent reflux and all my nerves are on hyper mode. Usually bad headache, neck pain running all down my spine. At its worst I get throbbing all over- from my toes to my teeth. And many times I struggle with breathing. A lot of the time it hurts so bad I just want to be taken out of my misery. But I keep reminding myself, "this is just part of the Dysautonomia. God is still in control and you will feel better soon.".

Sometimes it is triggered after

-being upright too long

-being over stimulated (by lots of people at church or a party- I basically can't do parties- well, I can pop in for a few mins, but then have to retreat for a while. I used to love hosting events and going to parties but it is so hard anymore- they make me too sick.)

- localized pain: a headache, kitchen burn, etc. that moves from the local area of pain through my head, neck and spine. Neck pain at the base of skull is usually the worst unless I have a migraine with it.

-exposure to chemicals (such as getting my hair colored, or having my house cleaned with chemicals).

And, sometimes it is completely spontaneous with no stimuli. (I learned this during my 8 day inpatient visit at Vanderbilt. It was quiet with little stress. They did the cooking and cleaning for me so I expected not to crash- but I crashed two times anyway.)

Since November I have not had a week without a crash and most weeks I have two or three crashes. During the Christmas break when kids were home from school and we had the extra stress from Christmas and family birthdays I was crashing more than 50% of the time. So, I suspect stress exacerbates the crashes but does not necessarily cause them.

Sometimes my blood pressure can drop really low (like after that hair color I mentioned earlier my BP dropped to 80/45 for 5 hours.) No amount of salt or Gatorade helped to improve it. But most times my blood pressure is normal - just now it was 104/70- very normal for me.

Usually a couple of days in bed flat on my back will get me to my normal Dysautonomic feeling self. When it doesn't I can usually count on a couple of liters of saline IV to bail me out.

Would love any input or suggestions. I imagine many of you can relate. I'm curious though- How often do you crash if you do? And are your crashes similar or different?

[Dizzysillyak]

I have ME/CFS as well as OI so this sounds like post exertional Malaise to me. It's where a person gets most of your symptoms and it lasts for 48 hrs + typically. I get most of your symptoms with PEM except the pain. Mine lasts for 2 - 3 days if I rest. KOW .. I used to get pain with PEM but not since changing my diet to avoid my food intolerances.

I noticed that you have MCAS. Do you think it could be from that ? Do you have a working treatment regime ?

I have 10001 allergies but not sure if I have a MCAD. And since I don't have mine under control I can't say if treating MCAS should eliminate PEM.

BTW, I used to try keeping up an exercise routine where I got my hr up, etc until I discovered it was only keeping my body in a state of low grade chronic PEM.

Sorry, I couldn't be more help ... tc ... d

[looneymom]

From a caregivers view, I know this must be very frustrating. My son had the flu in January and is still not able to stand up and walk. It seems like that you are able to have some good days and then something happens. Maybe it would be helpful to keep a diary of your activities to see what really sets your body off. You realize some things do make you flare. Maybe you could find a way to slow down inbetween stress days so you wouldn't be bed bound so much. But that is easier said than done. Are you able to ride a stationary bike? Something I realized with my son this last time he went down, his chest and lung musclse became weak. POTS patients need to keep these muscles strong or it seems to affect everything else in the body. He is not able to do as much exercise as before but I am beginning to realize just a little bit of exercise does more good than bad. To me it seems like giving his body 5 minutes of bike riding is just enough help him to maintain from one day to the next. Hope you feel better soon.

[ramakentesh]

Sure but I tend to run in cycles - periods where I crash more often and periods where I dont crash at all. Sometimes my other autoimmune disease flares up instead of POTS, etc.

[ramakentesh]

Sometimes its from overdoing things, but sometimes it just happens I find with no real reason. I tend to keep up fluids, up my meds or licorice and things like that. I find in those states that caffeine can help for some reason. if your wired and tired though it might not be the best idea.

[Chaos]

Sounds very familiar. I too have recently been diagnosed with ME/CFS (or neuro-immune disease as my doc calls it) in addition to all the POTS fun though.

For me personally, stress definitely exacerbates crashes but physical activity also plays a major role. That was one of the reasons I was so interested by Dr. Klimas' research into exercise and how it effects the ANS and immune system in her ME/CFS patients. Basically when they go into anaerobic metabolism with activity, it creates ANS dysfunction, followed by immune dysfunction. Thought that was fascinating given my own pattern of response to exercise over the past 3 years of being sick. I would work slowly up to a very good level of fast paced walking, maintain it for a couple weeks, then crash and have to start all over again. Have repeated that cycle many, many times. You'd think I'd learn but I guess the brain fog was thick enough that I didn't.

Trying a different approach this time around.

Sorry to hear you're still struggling so much.

[AussieOI]

Hi Kelly,

My symptoms came on for no reason for abt 6 weeks (2 years ago) then went away for about 8 months. They later returned las year year after I was sick with a liver/GB issue. Last year for abt 4 months I had my symptoms all day - symptoms are the same each time feeling very faint and very low bp. The symptoms then disappeared for 3 months then have come back for abt 4 weeks this time. Now I have an hr or so each day when I feel a bit odd (usually in the morning or if I am walking around in the heat).

For me the symptoms come and go and one day I can be fine and the next day I might feel gross all day. Currently I am on no meds however I did try midodrine for the first time yesterday which I think (fingers crossed) might help me.

Aussie

[Dizzysillyak]

Good point Ram. Our other immune system problems can flare and create a crashing feeling too. I try to forget that I have these. lol ..

Caffeine can help me get out of this sometimes too but only for a day or two. Any more and I just feel more exhausted and start having significant neuro symptoms like slurring my words or trouble doing anything that requires my hands, like chopping food, etc. My cure for the jitters is Klonopin, theanine or Natural calm. Klonopin is working best for me now but theaine used to work as well. I never do well if I try to function on this cycle (caffeine => Klonopin) tho. My neuro problems just get worse ...

I wonder if the caffeine is helping because our adrenals need the boost ? I've discovered a triple expresso gelato (Ciao Bella) that works better than coffee for me. It gives me a boost without making me jittery. I have no idea why. I'm allergic to dairy so I wish I hadn't found it ... lol .. TC ... D

[Terry]

Hi Kelly,

I have some experiences similar to yours during my crash days. I don't really have much body ache or pain but the fatigue is overwhelming. Everthing still functions but in "slow motion". I move as though I were sleepwalking. I don't speak much because it is too much effort to draw enough breath to be heard. I stare ahead because it is an effort to even move my eyes to look around. Oddly though, I am not at all sleepy during this.

Brain fog gets so bad sometimes that it is almost like having been drugged. I get completely "zoned out".

Sensory overstimulation may be the worst, especially sound. Normal noises can be as invasive as a sound that might wake you from a deep sleep. I need to be alone with no noise and dim lighting. Even motion is overstimulating. I have a fly buzzing around one day that was enraging (but I didn't have the energy to deal with it).

I still don't know what triggers these crash episodes. They come and go randomly during an almost cyclical pattern that lasts for weeks at a time with some days on and some off. The cycles are mostly during the summer months so maybe it has to do with the heat or allergens.

[Kellysavedbygrace]

Terry, you described some of my feelings so much better than I did. Yes, I get all those and the pain- but it sounds like you've gone longer periods of time without them? My longest since I've been tracking is five days w/o a crash and I just finished a four day crash- but more oftenit is one day on, two days off, two days on,one day off, etc.

Wonder if there are other similarities in our cases.

[ramakentesh]

I think what your describing is pretty common - happens for me all the time and I used to thing things triggered but now i wonder if its just random - like the last four weeks ive had two bad days for no reason - dizzy from the get go, waking up like dead feeling etc.

For me personally, stress definitely exacerbates crashes but physical activity also plays a major role. That was one of the reasons I was so interested by Dr. Klimas' research into exercise and how it effects the ANS and immune system in her ME/CFS patients. Basically when they go into anaerobic metabolism with activity, it creates ANS dysfunction, followed by immune dysfunction. Thought that was fascinating given my own pattern of response to exercise over the past 3 years of being sick. I would work slowly up to a very good level of fast paced walking, maintain it for a couple weeks, then crash and have to start all over again. Have repeated that cycle many, many times. You'd think I'd learn but I guess the brain fog was thick enough that I didn't.

Yeah Dr Klimas is doing some great work. Imagine a situation where patients had abnormal cytokine responses to a variety of stimuli - IL-6 as an example is elevated in POTS and is often released by muscles in response to stress. This cytokine is involved in the 'flu like' feelings that occur during sickness. It also MAY be implicated in the NET gene supression reported in a paper found in POTS.

But sometimes i wonder whether POTS has also made me hard wired to things. WHen i get a flu i get the WORST fevers on the planet - i nearly go catatonic! I wonder if that means my cytokine/immuno response is abnormal (AS often flares as well) or my sensitivity to normal cytokine responses are abnormal...

[Terry]

Kelly,

One thing I didn't mention that you noted, is the pain from the base of my neck that radiates down between my shoulder blades. I have this constantly, only in variable degrees, sometimes a dull ache, sometimes more sharp, but always there. I only sleep about four to five hours a night before waking to my neck pain. Most of the time I just toss and turn until morning. This is about my only real pain, but that, fatigue and dizziness are daily at some level, even without a crash.