Wish I Could Understand What Is Causing This!!!!

[mvdula]

OK, I am generally ok (I use that term loosely as I do avoid certain activities, temps, etc).Yesterday, (and actually a few other Sundays at same time of day ???) I got the awful unexplained weak episode. I'll describe it in hopes that some people on this board may be able to relate. It is usually mid-day for me, but can be at bedtime. It feels like I am just exhasuted physically, though I can still walk around and do things - which actually helps me if I don't go too fast. It just feels so bad - I feel so weak, just as if it is not going to get better and I am going to die (I know, this sounds like panic, but it isn't). It is so odd,I am quiet during these, so my family can always tell know that I'm not feeling well - my husband has learned a lot and is so nice and told me I did not have to go to the fam function (but I did since we were seeing out-of-town relatives), and the kids were concerned. My mind just is kinda out there, and also really focused on trying to pinpoint exactly what is wrong. I know it doesn't sound that bad, but it is. It is so frustrating!!!!!!!! I want an explanation!!!!!!!!!!!!! Why do I feel very weak and weird (all over - I can't pin-point any body part or area that is bothering me) for no reason???? It lasted for maybe 30 mins and then I took .25 Klonopin while we were on the way to the fam thing. Within 45 mins or so, I felt fine. it was SO depressing during the episode, I just wanted to die - really, I know that sounds crazy, but that is how bad it feels, and I think if I understood what was going on, it would help. If anyone has an idea, pls offer it - I really don't think it's as simple as hydration, etc as I have been less hydrated, more active, more hot, etc, and this did not happen. I just wish I understood the mechanism. The only thing that could be contributing is that it is right before my period, so Im sure hormones are contributing - but that does not explain the real faulty mechanism. PLEASE HELP!!!!

[janiedelite]

I started experiencing the majority of my POTS symptoms in the summer of 2008. One of the symptoms was a pressing fatigue that would settle over me like a heavy blanket. It is just overwhelming. I would be able to notice when it would set in, and then it would lift a few hours later all of the sudden. Nothing really helps (like the usual POTS helps of fluids, cool temps, etc). Lying down just made it easier to cope but didn't alleviate the fatigue. At first, the fatigue would set in for a few hours. I'd have several days of respite in between episodes. Then it lasted nearly a day. Then it started lasting more than a day and the respite periods were shorter, like maybe a day in between. Within a few months the fatigue was there most of the time.

Now I'm doing better with the fatigue. We ended up discovering a large mold problem and earlier this year got it all cleaned out. Afterward, I noticed that I finally could wake up and not feel like I'd never slept! I'm still not normal, but apparently getting rid of the mold was a big help.

Otherwise, I still experience wierd bouts of fatigue but most of the times I can tell what has caused it (stress, heat, the usually POTS triggers). But occasionally I get really bad fatigue and just have to ride it out. Like you, I experience more fatigue in general prior to my period. I wish I had a solution for you. I always try the usual POTS helps when this happens. My hubby will go get me a bowl of salty soup from our local Chinese restaurant. Occasionally that helps, otherwise I just have to ride it out. Sorry.

[potsgirl]

I get the same thing, especially at night when I've tried to stay up too late. I get up really early, so I go up to bed about 5:30/6 to read and am asleep by 7-8 pm. It's like a wall that hits me, and all of a sudden I'm so tired I can barely get myself to bed.

I also get this way when I'm having chronic pain. There are days that I have so much pain and fatigue that I just have to sink inside myself and get through it, minute by minute. Once in a while, I even think that it might be preferable to just pass away and not deal with all of this anymore, but I would never do it. Sometimes it's just so hard to keep fighting for what I used to have as a 'normal' day. It's relentless, and once in a great while, I'll have a day without pain and feel almost normal again, but it's not often....Thank God for those days, and everyone here.

Jana

ps....when my pain gets really bad, i'll take a small dose of percocet and actually feel better for a couple of hours.

[Guest tearose]

You are not alone. I too get these waves.

I understand the feeling of dying and not in a wish or giving up of life type of way. It is more of feeling so lovingly abandoned to "Divine" will since nothing we do seems to fix us.

If I know I have done all humanly possibly to help myself, then I look upward and inward.

What I do is to turn to meditation/prayer. I ask for strength and grace to continue on or to let go.

I am humbled and amazed by the "help" that comes to me but it does come and it does help.

Isn't it good to know we are not alone and can rise above these times and go on to many better moments.

tearose

[sue1234]

I get this also. For me, I get these hours or a day where I just feel really "off", where I almost feel weakish. I have learned over the last few months what works for me--I take a calcium pill and I feel better within an hour. I don't normally take calcium pills, as they BIG TIME bother my stomach, but when that feeling settles in, I know it is necessary for me. I don't know if I am going hypocalcemic and weakness/tiredness is its symptom, but the calcium seems to work.

[lieze]

I have had these episodes actually for as long as I can remember they just never got to the horrible feeling that they do since POTS.

I can actually remember way back to when I first worked as a nurse every night after supper on the 3-11 shift when I walked around to do my treatments I just felt like crap. Very tired no energy and just bad this went on as a pattern for quite some time.

Then working days shift in the evenings I would get like this where I just couldn't get up and do anything I felt drained. Often I could not sleep felt too agitated but just horrible couldn't get up and clean or do anything and I came under horrible ridicule about the state of the house and my time on the computer. The computer or watching something on tv was all I could do period and I couldn't get anyone to understand that.

Now since POTS those spells do dip down even lower than they ever did before and I do experience much more incredible weakness to the point that it does feel like death.

One thing that does help me during these times is to sit down and sip a Boost slowly.

It often within an hour gives me just as the name states a bit of a boost and often I can really tell a difference hours later. It does seem at this point to revive me.

I really try to keep them on hand and I'm out right now.

I think they do offer home delivery I should look into that.

My husband is bipolar and cannot recognize my needs.

Me has ragged on my boost and threatened before to take my bp machine away.

I think he is just upset that I got sick and associates these things with it.

I don't really feel comfortable sending him out for boost but as good as it makes me feel I would be willing to have it just delivered to the home.

[janiedelite]

ps....when my pain gets really bad, i'll take a small dose of percocet and actually feel better for a couple of hours.

Yes, I also feel this way when in bad pain and a bit of pain med helps me too.

[iheartcats]

I hate this feeling...and mine comes and goes, too, and I have not been able to pinpoint anything. I have to pay attention to big weather fluctuation as that and my seasonal allergies seem to affect how bad my flares are.

But they can be short or last a day. I, like some of you, try to plow through them as best as I can because it can be worse and longer if I don't try to keep active.

It's really an unfair thing, isn't it? You forget other people don't have to push through this type of stuff it gets so normal.

[daquinn]

I know what you're describing and how frustrating it is. My SO who has POTS goes through this deep exhaustion as well. In fact, today it seems like she can barely put one foot in front of the other. We just came back from a trip to the Midwest, which was both physically and emotionally difficult so we know that at least part of her exhaustion can be attributed to that. At the same time, however, her extreme fatigue can come about for no apparent reason and hit her quite suddenly (like a ton of bricks, to use a clich?). I've gotten to the point where I can often (but not always) tell when it hits her as she gets very quiet, her voice actually becomes weaker and she withdraws into herself. I feel sooooo bad for her at these time, but know there is little I can do; usually, she just has to "ride it out" by going to bed early, isolating and/or reading.

Unfortunately, this inexplicable exhaustion seems to be an unpredictable symptom of her illness. To her credit, she has learned how to deal with it in her own way, but this doesn't lessen her frustration, of course. Good luck in finding some means of coping that works for you.

potshelper

[mvdula]

Thanks so much for all the replies!! It does help to know that I am not alone in this symptom. It is frustrating that I cannot pin down the cause - and sometimes even the trigger. It scares me a lot, and I am trying to find a way to deal with the emotions/anxiety/depression that come after the episode. It makes me scared of next time this happens - and sometimes anxious and even embarassed. I'm sure I am not alone in these feelings either. Thanks again, everyone.

[toddm1960]

Maggie have you been worked up for mitochondrial problems? Exhaustion has always been my number one symptom, do statins, beta-blockers or even NSAIDS make you feel worse? For me mito was one more cause to rule out, but it turned out to be at the root of all my troubles.

[Dizzysillyak]

My guess would be that this feeling is from hypoglycemia. If you look up hypoglycemia symptoms you'll see that the symptoms are the same as the symptoms for anxiety. I get this too and have found that eating a quick sugar source like orange juice followed by a protein helps immediately unless I've waited too long. Then it may take an hour to recover ...

Have you had a GTT with insulin ? That's the best way to really see what's going on with your blood glucose. You can have hypoglycemia from certain foods too so you may want to keep a food journal.

I thought of one other treatment that may help ... If I forget to drink my water with salt in it during the day, I've found that by taking 1/4 tsp of salt and letting it dissolve in my mouth can help. DO NOT Swallow it without letting it dissolve. This is bad for your esophagus. If needed I follow it up with another 1/4 tsp of salt in water ...

Hope you feel better ...

[mvdula]

Toddm - Haven't looked into mito - maybe I need to.

Dozzy - Thanks, it does feel kinda like this, and tends to happen almost always at this time of day (can happen if I go to bed to late, like suddenly can barely make it up stairs to bed - I always think, how weird that between 10-2 AM and PM I am prone to these...must be a clue).....during the 10am-2pm time, it does feel like hypoglycemia in some ways, but I do not get shaky and starving (I have had 2 hypo episodes in past during which it was very clear what was happening and I ate/drank as fast as I could, which solved my symptoms pretty quickly). W/ this symptom though, even though it feels similar, it does not feel the same and I tend to get a nervous/hungry/easily full/super-anxious/BM urgency feeling pretty regularly at this time of day - I wonder if I could fix most of this by a better eating schedule - like 2 small lunches at 10aqm and 2pm. Still, the weakness 'episodes' (less frequent than my daily unpleasant time) have ONLY happened since I've had POTS and seem to be the trademark for me - they are worse and involve other symptoms if brought on by exertion.

Does anyone else have certain times of day that they usually feel much worse/nervous/urgent/strange/weak...then the rest of the day, you are ok?????? It is making me depressed for much of my day....

[Dizzysillyak]

Since you've had 2 known episodes of hypo previously, I'd look at that again. These episodes don't all feel the same to me either. It really depends on how low my blood glucose goes each time and this is based on several factors including what foods I ate, excercise, the last time I ate a meal, sweating, etc ... it's best to google hypoglycemia so you understand this better.

The Paleo diet is known to help this. It made a big difference for me. My fasting glucose is no longer low ... so I feel much better before breakfast. I can even take a shower now before eating ... before I felt too weak to stand up and had to eat immediately.

BTW, you can feel like crap at an acceptable low level and it's still considered hypo for you ... I think mine was around 80 the first time it was tested in 2006. At that test, the lab tech had to call the doc to make sure that she wanted to proceed because I was white as a sheet and couldn't stand up without leaning on the wall or counter ...

The Paleo diet hasn't fixed my hypoglycemia though .. I've been on the Paleo diet for 2 years now and it turns out that my hypoglycemia is probably genetic. My body just produces more insulin than it needs ... I just had the GTT with insulin so it's clear what's going on. After 2 hours, my insulin was high and my blood glucose was 61. BUT ... my fasting is great ...

Certain foods are known to do this too.

Are you salt loading ? is your BP low ? This helps me sometimes but only if I'm low on sodium ...

This are just a couple of options though. I still get weakness regularly and I haven't figured out where it's coming from yet. My doc is looking at my hormones now though ... Turns out that I'm low in pregnenolone and DHEA ... so I started taking those this week ...

Good luck with this ... Marcia

PS. At this point, I'm betting there's an adrenal connection to all of this. But, I've just started learning about how our adrenals work. There's a thread on this board on adrenals though ...

[sue1234]

I'm very interested in the hypoglycemia part, but feel us talking about it here will take over the original thread and it might be a relevant topic that some may miss buried in here. So, I'm going to start its own thread. I would very much like to hear about your GTT, dizzysillyak(I'll start the thread shortly, but not right now).

[Maxine]

Mvdula, I have episodes much like you describe, and I've always chalked it up to my ANS issues, and upper spine/brainstem compression.

However, recently I had my blood catecholamines checked because I've wondered if it could be something else.

They were checked, and the Epinephrine came out to <10, norepinephrine was 277, and the dopamine was <30. My PCP thought it was awfully low, and in fact my colonoscopy was cancelled because he was concerned I wasn't stable enough. He had checked my BP while I was there, and it was only 80/50. He said I needed to go to my endocrinologist. I went to him, and he told me that at any given time people with normal health will get the same readings.

I wasn't quite sure what to make of it. He kind of made it look like it was an over reaction on my PCPs part. My PCP has seen me a lot more often, and has followed my health pattern----he was concerned.

I just had an episode of weakness and felt very jittery on Thursday evening. I got on the floor and crawled into a ball. It seemed to help, so possibly a blood volume issue. I had been standing up preparing a big salad for my sister in law and her family who had come over that night. MY sister in law was so nice to landscape a new garden for me, and I wanted to give them a good dinner. My husband cooked chicken and hot dogs on the grill, and I also made baked potatos. I wanted to make it as easy as possible, but I still got wiped out. Sometimes when I wash my hair in the morning, and I raise my arms over my head I get an intense weakness in them, and I'm surprised my hands still work! For me it feels like a switch just turns off.

I can't tolerate statins at all. I do take a moderate dose of beta blockers, or my heart rate will jump into the 150s. Klonopin does help when I get this way, but most of the time I just try to take in more water and salt. There's times it feels like more of a neurological issue. It's so hard to tell when I have so many other issues going on----------which one is causing it, or is it something else altogether?

Confusing--AND depressing.

I can really "get it", and I'm sorry you're going through this also. This isn't fiar-------it steals things away from you! I hope this is just a set back for you, and your body snaps out of it. Maybe it's hormones messing with your body, and it's temporary....let's hope!

HUGS,

Maxine :0)

[comfortzone]

Maggie have you been worked up for mitochondrial problems? Exhaustion has always been my number one symptom, do statins, beta-blockers or even NSAIDS make you feel worse? For me mito was one more cause to rule out, but it turned out to be at the root of all my troubles.

I've been seeking answers for this for a couple of years too. Mine started after bilat. knee replacements on the heels of 3 yrs. prior bilat hip replacements. I never got back to life as normal.... But rather grew to have pain globally -- found I had hypermobility syndrome. To me that still didn't explain that after 3-4 hours of activity in a day I am compelled to lie down (or fall down lol). My recovery can take as little as an hour flat on my back in bed or as long as four hours or till bedtime. But my duration of functional life -- is baffling to me as well. I had the insult of a neuro doc telling me it's all in my head - ouch. Still on a quest for answers I had a dizzy spell at work (after 2 years off work - took a job for 4 hours a day 3 days a week to get back into the world if I could).... went to cardiologist who found avg. HR of 100, runs of atrial tach, a few pvc's. He put me on 50mg of Metoprolol in addition to my other bp medication (My blood pressure seems to be varying widely -- mostly high -- but occasionally dips). It's done nothing really and I still get over 20 mmHg increase in my diastolic b/p from sitting to standing.......I called it orthostatic hypertension -- my cardiologist just ignored me and put me off for 6 weeks. I kept calling him begging not to be left with these staggering high and dangerous b/p's for over a month......so he then says in addition to my regular (normal) echo I need a stress echo. I have mentioned I need a tilt table test and work up of dysautomia from hypermobility syndrome -- he isn't acting on my nudges to help me investigate and treat it. I have the stress echo on the 8th...my appt. with him on the 12th.

Then yesterday got dizzy again at work -- drove home -- and my bp was in the 90's over 60's and I felt sick the rest of the day and into the night. So occasionally the fatigue correlates with blood pressure but most of the time it just is -- and always is -- and no one able to help me uncover why.

My heart rate with normal activity is about 120's.......with sitting around the house about 95.........when lying in bed it can be in the high 70's and low 80's with the Metoprolol on board.

I'm confused and disgusted as I am able to function normally for portions of the day -- but I guess I would call it an exercise intolerance........has me floored and incapacitated each and every day -- yet when recovered by lying flat I feel great again. Dunno if mine could be mitochondrial -- I do have the varicose veins, blood pooling, arms & face flushed, esophageal spasms, gerd, small hernias, but heck I'm early 50's -- could it be just I'm getting old I'll wonder!

YES -- it can try your patience minimally........ YES to prayer and acceptance and wisdom .... & YES to valuing yourself enough to seek out answers to your problems for workable solutions so you can function your best........

I really do pray you get help --- so you can cope with your symptoms in a hopeful more peaceful way -- you are young so you have that on your side for sure......... Good luck! You are wise to tap into the people's wisdom here -- I assume you've already had work-ups -- negative for some of the more common reasons for unexplained fatigue? Hang in there!