do any of you do this??

[dizzygirl]

hi all...

I was wondering..

I wake up in the middle of the night sometimes and am craving salt and water in the worst kind of way...so I get up and stuff green olives in my mouth.. and chug down ice water.. this typical happens around 3-4 am...

I can remeber back a few years ago.. when I was about 17.. way before i was diagnosed with pots.. that i would wake up this way.. and heaven forbid there are no olives in the house!! LOL

so I was just curious if any of you have these crazy water/salt cravings.. that wake you up in the middle of the night... and why?

maybe I am little nutty what do you think??

dizzygirl

[taylortotmom]

No, you're not nutty. I have cravings of pure salt- like I could just spoon it into my mouth (not that I would- ew!). Cravings are oftentimes our bodies way of telling us what we need. It's a survival thing.

Carmen

[Rita]

Dizzy Girl,

It is not often for me to crave salt this is something I have never enjoyed, I literally have to force myself to eat on everything so that I get in enough daily. I do often wake up in the middle of the night dry mouthed and dying for water. I have noticed that I will do this more often when I have had many syncopal episodes that day. I am not sure the connection between this, but I will ask the research team when I go back to Vanderbilt. I go in September so I will let you know when I get back.

Rita s

[Evie]

I crave water in the night alot. I have since i was born. However isnt this fairly normal? (feel free to tell me ive been strange since birth hehe)

I spent years trying to avoid salt due to high cholesterol so it is a bit strange for me now to go out with the aim to eat it. I am worried about my cholesterol levels actually. I will have to ask my dr if the salt intake is ok or not.

I agree with taylors mum that cravings can be our bodies way of telling us what we need ... i just wish mine didnt tell me i need chocolate so much

[dizzygirl]

Yeah I'm not the only one!

Evie.. I wish by body didnt :crave chocoalte" so much either!! but it is so good!

I have to agree with carmen.. that its our bodies telling us what we need.. or are lacking..

I honestly have never thought if it was linked to syncope episodes during tha day or days to follow.. I never thought of that actually..something to think about!

thanks for letting me know I'm not "nutty"!

[Ernie]

Hi,

I need to eat proteins before going to bed otherwise I wake up at around 3-4 a.m. craving sugar.

Ernie

[Jenn202]

I have my gallon of water, electrolites , a glass, and salt tabs next to me all night...

I wake up at least once a night to drink a glass full with salt..... I also do this as soon as I wake up in the morning...the extra fluid helps me a lot.

[taylortotmom]

Dehydration is hugely related to syncopal episodes so the link between craving water/salt and passing out is legitimate. I do 1-2 liters of iv fluids (chock full of sodium!) for this very reason. What is weird is I never realized how dehydrated I stay until I started doing this tx. I can really tell when I am not up on my fluids. I really think more of us dysautonomiacs need this type of tx. An irony is I just received a phone call from my insurance company while typing this and had to explain to the nurse what dysautonomia is and why I need this fluid! She was nice and interested in learning more about our plight. Talk about your weird timing!

Carmen

[MomtoGiuliana]

Yes, I have episodes where I crave water enough to get me out of bed. I have never craved salt. Like Rita I have to force myself to eat it--or otherwise take salt pills.

[DancingLight]

well, dizzy girl...i don't crave the olives! but, i definitely crave the water! i am always thirsty, and it is really bad at night. i always have a glass of water by my bed. i always also have such a bad taste in my mouth...which i always attributed to just having such dry mouth....

don't know if this helps...

how are you doing with things these days? i know you had a lot going on--thinking about moving, getting a scooter, going back to school etc? i am sorry i wasn't chipping in more to support you...i haven't been posting as much as i would like to be able to...ugh! (i want sleep...which i know you sooooo understand!)

emily

[corina]

I always loved salt. As a child I put salt on EVERYTHING. My mom was almost desperate and tried to keep me from it, which of course didn't work . I think I understand now!

There are times that i'm extremely thirsty as well. Once I thought of drinking the water from the rain that fell on the street. Uggghhhh, luckily there was no need to do that because I was almost home. I never told a doctor, they wouldn't understand and would think I'm nuts!

Corina

btw Em, I have that dry mouth and bad taste as well. I always drink at night.

[corina]

oh and Dizzy,

I LOVE olives!!!! And my country isn't exactly mediterranean!

Corina

[dizzygirl]

Corina.. I love Olives too.. the green ones!! YUMMY!!!!!!!! ITs is my cure all method for treating apotsy moment... hey gotta try something right.. when nothing else seems to help!

Emily Hi.. so you are still having insomnia huh? that really bites... I can totally relate there..I have been wide awakr for over 24 hours now.. and bot am i feeling the effect of not having any sleep.. I tried laying down through out the day today.. but no sleep for me..

well I am still waiting on hearing from the insurance company about my scooter it has been 3-4 weeks now.. I should hopefully hear something soon..

about moving.. HMMM... I am still very IMpatiently waiting for an apartment to come available.. and can not wait for one to open up for me.. hopefully that too will be sooner then later..

and school.. my goodness.. what a pain in the rump!!! Nobody has gotten back to me from any department of that school.. and I have tried several times to reach somebody..school starts the 29th.. time is ticking away for that..

I am beginning to think its gods way of teling me not to go back yet.. I'm not to sure... I have been searching around though for online.. do it at home kinda schooling.. i think that for right now that might be my best option as far a an education is concerned.. now trying to find a good one is going to be fun!

Where there is a will there is a wat right?

ok guys.. I am off..darn potsy is making me be able to see straight!

OH Must sleep! I need to join the land of sleepy time.. come on Mr. Sandman I am ready for you!!

dizzygirl...

[Sunfish]

linda et al -

you're going to make me fess up to my bizarre middle of the night nibblings? oh bother

yep, i get major cravings...for water, gatorade, salty stuff, etc...at anytime day or night. i hadn't had the night so much until this spring...at first when my gastroparesis was so bad that i could hardly eat at all but only nibble or sip. but now that my intake is pretty normal again i still get the middle of the night cravings. and it's not a hunger thing. i thought it was just me:-) or that perhaps after semi-starvation for a good chunk of the year my body wants me to store up on everything in case it happens again?! enough already though!

i'm not a olive fan but instead tend to be a pickle gal. yum yum. and always have been, long before major symptoms and/or diagnosis. in fact i've always tended toward salty goodies rather than sweets...with the exception of loving ice cream and not liking potato chips.

i always keep fluids by my bed and sometimes snacks. i have to be careful & have the fluids contained or else czar (my cat) tries to beat me to it and often knocks the cup over b/c his head gets stuck. silly kitty. so...water bottles it must be for me.

linda, sorry to hear that you're having to exercise your patience so much on so many things. i know how exhausting that can be. i'm still having to fight on my wheelchair so we'll have to have a party when things work out for us...b/c they will. the disability folks at my school lost my paperwork, and the elevator in my building went out for a good 36 hours so it took me 1.5 hours to get up the steps (2 stories) once & then i didn't dare leave again. so...i can empathize a bit. some days it does just seem like everything is a fight. i tend to be shocked when something does work out easily! anyway, hang in there & let us know how things go...

i'm going to see if my mom will get me a big barrel of my favorite pickles at her next trip to Sams.....

ah...i'm not as crazy as i thought (at least not in this regard!)

:-)melissa the pickle eater

[dizzygirl]

Melissa you go girl! and eat them pickles! and if your mom is going to Sams club

I bet she will get the economy size...LOL

I am an olive girl.. but i like pickles too... once when i was about 7-8yrs old.. and i went to Waladmere with my grandparents and aunt and cousins.. well the only thing I rememebr eating thre was olives..and koolaide! I just like couldnt get them in my mouth fast enough..sound a little potsy to you? It was usmmer time..

my aunt called my mom later thath evneing to see if I was sick..because of the amount of green olives I ingested.. and my mom is like no she's fine.

anyways I am rambling.. must be that sleep deprivation thing going on..

Tootles

dizzygirl

[lthomas521]

Ernie says:

I need to eat proteins before going to bed otherwise I wake up at around 3-4 a.m. craving sugar.

Hi Ernie:

It sounds as if your health problem might be primarily metabolic. Do you have fasting (postabsorptive) hypoglycemia? What's your fasting glucose level? Have you done one of those tests where they keep testing your blood glucose during a prolonged (72-hour) fast? Have they evaluated you for a mitochondrial disorder? That could explain why other people in your family are sick. Have any physicians ever suggested that you try L-carnitine? It's an amino acid that your body uses to transport fatty acids into your mitochondria and the breakdown products of fatty acids out of your mitochondria. If you don't have enough L-carnitine (for reasons that can be hereditary), you won't be able to metabolize fats efficiently, so you could conceivably end up using up your glycogen stores and then burning your blood plasma for energy.

Unless you are a diabetic or unconscious, it's likely that doctors will overlook low blood glucose readings. You can get a misleadingly low blood glucose reading if they leave your blood sample lying around for too long before they process it. The red blood cells use up the glucose for energy. So they might dismiss a low reading as a laboratory artifact. Second, if you have a suspiciously low blood sugar reading but don't have diabetes, the doctors might suspect that you have been surreptiously taking someone else's diabetes medication. So you might get a false accusation of Munchausen syndrome. Or they might just dismiss you as a kook as soon as you say the word "hypoglycemia," because it was a fad diagnosis in the 1970s.

I don't know if you can get reasonable results from using a home blood glucose meter. I don't think that they are particularly accurate in the very low range. Plus, they use a capillary blood sample, not a venous blood sample. Blood glucose is lower in venous blood than in capillary blood, because the glucose gets absorbed by the tissues as it passes through the capillaries.

In any event, waking up at 3 am craving sugar unless you ate protein sounds like an important clue to me. I really hope that you can find out what's wrong, especially since it could end up helping your relatives as well.

[hockeykid]

I do get salt cravings a LOT! It is crazy! Usually it happens several times a day if I don't eat something salty. I usually end up shoving Goldfish or French fries into my mouth. I put so much salt in the ketchup the top gets crusty before I mix it in!eww!!! I don't wake up in the night because of these cravings. Now that I think of it, when I was younger I would wake up in the night EXTREMELY thirsty. I would stand at the sink for several minutes with a thin stream of it running out(so I didn't wake up my family)withmy hand cupped. Sometimes I would get enough courage to go into the kitchen and fill up several cups and easily down all of it. Sorry for rambling but I thought I would say it just in case it may help you! Hope it gets better!

Cheyenne

[Ernie]

Hi Lthomas,

I am impressed by your answer. What you are saying makes total sense. I was diagnosed 20 years ago with hypoglycemia and some doctors are still laughing at the diagnosis.

I have never done the 72 hour fasting test but I did a 12 hour with a glucose tolerance test. I could not fast for 72 hours because I completely paralyse after about 10-15 hours of fasting. I have paralysed after 4 hours of fasting once at NIH. So it is quite scary because I have to be feeded to unparalyse.

I think that I have some metabolic disorder but I have never been investigated. My PCP is giving me Cartinitine which is helping me with the muscle weakness. You just made me realize that I stopped taking it 2 months ago when I had a test and I forgot to start it again.

My father had diabetes as many of his sibblings.

I was also misdiagnosed with Munchaussen 4 years ago by the supposedly top Canadian syncope specialist. That's why I had to go to NIH to find the proper diagnosis!

I would like to get investigated for metabolic disorders but I just don't know how to "enter" into that specialty. The closer I am getting now is having an endocrinologist.

Ernie

[janineerrn]

Hi Everyone,

I have come to love olives and parmesean cheese, the real kind you grate yourself.

I always crave water, I have always hated salty things, now I crave them every now and then really bad.

Hope you feel well.

Janine

[lthomas521]

Ernie says:

I would like to get investigated for metabolic disorders but I just don't know how to "enter" into that specialty. The closer I am getting now is having an endocrinologist.

Hi Ernie:

Back in my naive days (pre-POTS), I would have thought it an excellent idea to see an endocrinologist if you probably have a metabolic disorder. Theoretically, they are the people who are supposed to be able to help people with metabolic problems.

Unfortunately, my experience with endocrinologists (and I have seen several) has been uniformly disappointing. The ones I have seen have been "short-order cooks." If you don't have one of the handful of diseases they already know something about, they are absolutely useless, and often quite rude. Back when I was on an antidepressant, which helped a little with the POTS, I went to see a psychiatrist. The psychiatrist did not think I was depressed (nor did I). When she heard about my family history of autoimmune disorder and thyroid disease, she told me to see an endocrinologist. I pressured him into running a bunch of tests, but then he concluded that there was nothing wrong with me. He even claimed that I didn't really have orthostatic hypotension, because the systolic pressure had to drop a full 20 points, and mine only dropped by 15 points. (It was only 95 to start with, but that didn't matter to him.) He told me that I didn't have an endocrine or metabolic problem. Shortly thereafter, I went to see a nephrologist, who took one look at me and figured out that I probably had abnormally low blood volume. He said that my pallor, tremor, and orthostatic diastolic hypertension (my bottom blood pressure number actually went up when I stood up, resulting in a narrowing of my pulse pressure) suggested that I had significant volume depletion. Sure enough, the blood volume measurements showed that both my plasma volume and my red blood cell mass were abnormally low. He also ran a 24-hour urine test, which showed that my adrenal glands were producing over 8 times as much aldosterone as a normal person's would. So, basically, he found some evidence of serious endocrine derangements. He gave me two kinds of hormone replacement (Epogen and Florinef), which helped a lot. But he wasn't an endocrinologist. He wrote a nice letter to the endocrinologist, whom he knows personally, explaining all of the interesting endocrine findings in my case. It filled me with glee.

I stumbled upon the thiamine supplementation, which has had a nearly miraculous effect, all by myself. The fact that pharmacologic doses of various vitamins have put me back on my feet suggests that my problem is metabolic. And I mean back on my feet literally. I went to a candlelight vigil tonight and spent over an hour and a half standing around holding a lit candle in one hand and my dog's leash in the other. I didn't burn myself, lose my grip on the leash, or drip wax on the dog. I didn't even feel uncomfortable.

The problem with the "endocretins" I have encountered is that they look at paper printouts and don't look at patients. Anyone could see that I was sick, but the routine screening tests they do for the common diseases didn't show any abnormalities. Therefore I was well. QED. My sister once had an endocrinologist who actually looked at his patients. He said that he had been practicing endocrinology since before a lot of the tests came out, and he thought that they had serious limitations. He also had a PhD as well as an MD degree. Unfortunately, he died a few years ago.

I don't mean to discourage you from seeking help from an endocrinologist. My point is that you have to interview them before you let them do an initial workup. Explain that you have a hereditary metabolic disorder that probably hasn't been described in the medical literature yet. If the doctor is dismissive, go to someone else.

If I were you, I'd contact the local support group for muscular dystrophy and ask them if any local doctors are interested in mitochondria. The muscular dystrophy people will probably know. In the meantime, you might want to find a good nutritionist or registered dietician. Explain about the fasting hypoglycemia. They'll probably tell you to eat lots of slow-release carbs (high carbohydrate content but low glycemic index). They might also tell you what kinds of fats to eat. For example, if you have a carnitine transport problem, you might be unable to metabolize long-chain fatty acids. So you would need to know how to get short-chain fatty acids instead. A dietician might also be able to refer you to a doctor who can evaluate your amino acid metabolism and fatty acid metabolism.

Let us know if you have any luck!

[Ernie]

Hi

Lthomas,

Thanks for all the explanation and suggestions. I am seeing my endocrinologist in a month and I will ask him about the thiamine and the referral to a dietician or nutritionist. I am thinking of asking him to try epogen because I have low blood volume. He sent me to a neurologist to get a muscle biopsy but the neurologist said that I don't have anything neurological so he refused to do the muscle biopsy.

My endocrinologist has run a few blood tests and many of them have come out positive but he does not know what it means. He has never seen a case like mine, many of my hormones are screwed up.

That's really impressive that you were able to stand for 90 minutes. You're giving me hope that I can still improve.

I find that I do better with vitamins and electrolytes.

Ernie

[lthomas521]

Here's a Canadian hospital that knows about mitochondrial disease.

http://www.vanhosp.bc.ca/html/wellness_amd...ial_howare.html

[Ernie]

Hi Lthomas,

Thanks for the link. I think I will call them next week and see what they can do for me.

Ernie