Worst time of day for you

[nputte]

I have POTS and I've noticed that mornings are so difficult for me. Is this the case with anyone else? I feel like crap till about 12 or so and then I start feeling a little better. I'm going to try increasing my Midodrine to 10mg in the a.m. and 5mg in the afternoon to see if it helps get me over the hump of the morning.

[LivingInHope]

As far as I know, I still have a pituitary tumor.  It was there but appeared closer to 5 mm instead of 6 in July of last year.  I'm hoping to get another MRI maybe in January.  

Can a person ask their PCP for a ph test of their blood?  I have osteopenia, but had a complete hysterectomy a few years ago.  I do have a major hyper sensitivity of my stomach, etc. feeling acidic often, even though my gastrin came back on the low end of normal.  

I've gotten IGF-1 checked twice since the tumor was discovered.  My numbers were:
214 (ref range 106-368 mean 225 SD 71 for my age category in 2/2008 and in 3/2009 it was 234, ref. range not age specified at 109-284.

[enzymelover]

LOL! I had a hard time following it myself. I read it over and over, to be sure I was understanding it correctly. It is confusing!
Casey actually had a citrate level measure as part of his first organic acids test 3 years ago. It was low-normal then, and he was walking just fine back then; no orthostatic intolerance.
Now I am curious to know if it is high, or normal, because he is glutathione deficient.

I also have to wonder if his blood ph is normal, or more alkaline. I would think alkaline blood would be a very serious problem, since your body will do everything possible to maintain a normal blood ph, including pulling calcium from your bones if your blood is too acidic. I'm going to corner the next doctor we see and try and get these retested.

I know you had a pit. tumor too. Did you have a problem with low growth hormone at any time? Do you get your pit. hormones tested still?

[LivingInHope]

I stopped tracking on part of that- my concentration isn't what it once was, but tracked enough to be interested.  I have suspected hypovolemia in my own case in addition to hyperadrenergic form of POTS.  When I had an angiogram, I heard someone call out "low volume" and the doctor afterward was telling me I need to drink more.  Of course, I wasn't allowed to drink prior to the angiogram.  But prior to that, while during my hospital stay, a nurse was wondering if the urine in the commode was water!  Later, I got my 24 hour urine sodium done and it fit into the criteria for hypovolemia that I read in an article.  

Also, anaerobic imbalance and parasympathetic imbalance were diagnosed through an acupuncturist herbalist who took sampling of my saliva and sent it in to a place for analyzing shortly before I got diagnosed with POTS.

[enzymelover]

I was just rereading this thread and I'm curious about what you said happened during your sleep study; how your oxygen level did not fall hardly at all, even though you had an apnea event of over 40 seconds.

A couple of weeks ago, I printed out a summary I found on the web, of a presentation given by Dr. Paul Cheney back in 2001. It was about the pathophysiology and treatment of Chronic Fatigue Syndrome. A part of the summary describes significant findings and metabolic disturbances common to Chronic Fatigue patients.

One metabolic change noted was shortened breath-holding, and a dysfunction of oxygen transfer. It was found that 70% of these CFS patients could not desaturate oxygen from hemoglobin molecules when they were asked to hold their breath, and their blood oxygen level, as measured by a finger pulsoximeter, did NOT drop. (Stay with me, I'll try to explain this).
When you have someone exhale all the air out of their lungs and then hold their breath as long as they can (similar to apnea?), the only way they can get oxygen into their body tissues is to pull it off the hemoglobin molecule, or "desaturate" the hemoglobin molecule which bonds to oxygen in the lungs and transports it to the tissues. Blood oxygen levels SHOULD reduce during breath-holding (apnea?) and desaturation, and yet 70% of the patients did not desaturate (their blood oxygen levels were not reduced).

What that means is that they had plenty of oxygen in their blood, but it did NOT transfer into their body tissues under conditions when the tissues needed oxygen!
The summary goes on to explain that impaired oxygen transfer would cause not only pain and fatigue, but would allow the growth of anaerobic micro-organisms, which survive just fine in the absence of oxygen. Two that were mentioned are yeast, and mycoplasma bacteria, organisms which are commonly found in CFS patients.

Two possible explanations given for the impaired oxygen transport are alkaline blood, and increased citrate levels due to a reduction in glutathione. Citrate is a potent inhibitor of a chemical called 2,3 diphosphoglycerate, which is NECESSARY to allow the hemoglobin to release the oxygen so it can enter the cells. This could reduce oxygen transfer at the hemoglobin level.
The alkaline blood is caused by intracellular acidosis. When one part of the body gets more acidic, the blood becomes more alkaline to balance it out, and alkaline blood inhibits oxygen transport. As blood becomes alkaline, BLOOD VOLUME WILL BE REDUCED allowing the blood to then become more acidic (because it perfuses the tissues less well and therefore gains back some of the acidity).

Are you still with me? This is where it really gets interesting (to me anyway!) This means that when blood volume is reduced it doesn't penetrate the tissues as well, and since it has less contact with acidic cells, alkalinity is reduced. (another of your body's many balancing acts). Apparently, when they tried to fix the blood volume depletion in these patients (with fludrocortisone) it didn't help much, because their systems WANTED to be volume depleted, due to the intracellular acidosis and alkaline blood. Dr. Bell said, it's as if they WANT to have low blood volume, because they can't transfer oxygen UNLESS they're volume depleted! The Florinef didn't help because the volume depletion was a compensatory mechanism.

Well anyway, I don't know if this has anything to do with the results of your sleep apnea study, (as an explanation of why your oxygen level did not drop during apnea), but I found this presentation to be very interesting, especially since two of the substances considered to be crucial in the treatment of CFS, namely growth hormone and glutathione, are two things my son has been found to be very deficient in.

Okay, biology lesson over.

[LivingInHope]

Thanks for sharing- what's the mysterious issue- your reaction to food or your diagnosis or ?  Thanks!

[fanyacevedo]

i do feel really unwell in the morning, that´s my worse time in the day, i wake up fine, but as soon as i have breakfast  or start moving or doing something i star feeling dizzy, and it last the whole morning or sometimes the whole day, i never know...

[fanyacevedo]

i feel awful after eating pancakes, i also feel very bad after eating fresh fruit,and sometimes i feel really bad if i eat bread which contains high fructose, i feel that i ´m going to pass out, and sometiems i really do. i was dx NCS. that´s a very mysterius issue... dont quite understand why...

[LivingInHope]

Sometimes I notice I get worse after pancakes with syrup.

[itsthebman]

mornings are worse for me, and if i have to get up early it throws symptoms for a loop.


Also, has anyone noticed a link between corn syrup or high fructose corn syrup in making their symptoms worse?

[enzymelover]

One "dietary strategy" that is supposed to help with this is simply to eat some protein along with any carbohydrate, such as eating cheese with crackers, meat with breads and starchy foods, etc.  This is supposed to help slow the absorption of the carbs.

Adrenal  hormones have an affect on the action of insulin, which is released faster with high carbohydrate consumption. For instance, epinephrine can "turn off" insulin production, and of course all of our hormones, including the interplay between thyroid and adrenal hormones, work together to try and maintain balanced function of every organ, and they have a strong effect on gut function.

My son has trouble eating only carbs. It can cause stomach upset and tachycardia. It recently occurred  to me that although he has gained about 25 lbs. since he was initially prescribed Thyroxine, his dose has not been changed. Everything I've read suggests he should be getting half again as much as he is taking. I'm going to see about raising this, and see if it helps with any of his symptoms. His cortisone seems to be interfering with carb digestion, too. If you look at a package insert for Cortef,  "decreased carbohydrate tolerance" is listed as an adverse reaction.

I'm not sure what his rate of gastric emptying is, but he knows he feels bad if he eats a "normal" sized meal, so he generally eats very small amounts of food, several times a day, instead of "meals", and always includes some protein.

And he still has daily trouble with indigestion.  sigh....

[LivingInHope]

AMO- I wear a flat planed hard splint at night.  I have osteoarthritis in both jaws, and one disc dislocated without reduction, the other with reduction.   The last time I didn't wear my splint, I awoke with a horrific migraine.  

Heiferly&AMO- I feel like my stomach must have baby-sensitive lining.  I have trouble with omeprazole (headache) and Nexium (constipation).  I've been taking ranitidine for years and am currently at the maximum dosage of 300 mg bid, supplemented by liquid anti-acid for stomach burn break-through.  

mtgardner- Sleeping without dreaming typically happens when you are in your deepest part of your sleep.  Dreams typically come with REM (rapid eye movement) sleep- the lighter part of your sleep.

[Heiferly]

Postprandial hypotension (low blood pressure after meals) is one of the symptoms that can accompany different forms of dysautonomia.  It is also known to be worse with certain foods than with others:

"Ingestion of a carbohydrate, particularly large amounts, induces the greatest cardiovascular response, particularly after a meal while fat, protein, or water have relatively little effect.

The mechanisms mediating the fall in postprandial blood pressure are poorly defined. It is believed that digestive blood flow, release of gut hormones, and sympathetic nervous activity are thought to play a role."

from:  http://scienceblog.com/community/older/2003/C/2003861.html


One thing you may find helpful is eating more frequent, smaller meals throughout the day and eating carbohydrates only in smaller amounts.  It is interesting to note that this article also talks about correlation between postprandial hypotension and the rate of gastric emptying.

"It appears that the initial absorption rate of glucose is a fundamental determinant of the cardiovascular response to carbohydrate, although the mechanisms mediating these effects remain uncertain. Accordingly, dietary strategies for the prevention of postprandial hypotension should perhaps focus on delaying the initial gastric emptying and/or small intestinal absorption of carbohydrate."

I wish I were a dietitian and could translate this into layman's terms, but quite frankly, this goes over my head.  Maybe we should ask about this over in the ask-an-expert nutrition forum and see if we can get an answer about what type of dietary changes might typify such "dietary strategies?"

[mtgardner]

Thanks for that excellent explanation!  I am hypothyroid and  am planning to talk to my doctor next visit about the fact it was lowered after 40 years on the same dose.  I think it needs to be raised again.  This actually happened a few years back before my PAF symptoms really amplified.

As for the nap study...I am thinking my husband might need one.  He lays down to go to sleep and is asleep in less then one minute. I have never seen anything like it.  He also needs an uncommon amt of sleep and still doesn't always feel rested.  I mean he normally needs about 11 hours.

Also wanted to mention a typo on my part.  Above in another post I stated I am hypertensive after meals and especially carbs....I meant
hypotensive.  If I start the day with carbs it is doomed!  I pretty much have to start with protein to have energy and stamina.  I realized this from trial-and-error well before my dx.

[Heiferly]

Marie,

The MSLT or "nap study" is done the morning/afternoon after you've had you're polysomnogram (the overnight part of a sleep study) and they know you've had a full night's sleep.  It is a test to assess excessive daytime sleepiness.  

It is used to diagnose things such as Idiopathic Hypersomnia and Narcolepsy where a person would be excessively sleepy despite the fact that they've had a full night's sleep and should be fully rested.  What happens is, say they wake you up from the regular part of the sleep study at 6 AM.  Well, then at say 8 AM they have you lie back down in bed and they turn off all the lights and you try to nap.  A healthy person might be able to fall asleep, but a person with Idiopathic Hypersomnia or Narcolepsy can actually fall asleep in an average of less than 10 minutes.  (If you don't fall asleep in 20 minutes, they just turn on the lights; if you do fall asleep the nap keeps going for longer ... you'll see why in a minute.)  Now, that's an *average* of less than 10 minutes, so people with either Idiopathic Hypersomnia or Narcolepsy may very well have some naps (or all naps) that have sleep latencies much quicker than 10 minutes; my sister actually has the former of these disorders and I have the latter (there's no known hereditary connection between the two, so this is coincidental oddly enough) and both of us had at least one sleep latency UNDER TWO MINUTES during our MSLTs!!  Neither of us realized we were falling asleep so quickly so it was *shocking* to hear the results!

Now, the reason I have Narcolepsy and my sister has IH is because there's another thing they look for in the MSLT that's a distinguishing diagnostic criterion between the two:  REM sleep.  A person with Narcolepsy has disordered sleep stages and can (and does often though not necessarily always) enter REM sleep very rapidly after sleep onset rather than cycling through the other stages of sleep like normal.  (REM sleep also plays other important roles in narcolepsy, but this is just the part about the MSLT.)  So if they see REM sleep in 2 or more of the 4-5 naps in the MSLT, they know the person has narcolepsy because a healthy person will not enter REM sleep quickly enough to have it show up during these short naps.  Of course they combine what they see on the MSLT with what they learn from examining the patient and asking questions about symptoms, etc. to make the final diagnosis.

That's the MSLT/"nap study" in a nutshell.  If you are UBER narcoleptic in your first few naps, they let you cut the study short and not have to do all 5 of them so you can go home early and nod off in the comfort of your own bed or recliner.  :-p  

[My sister has mild sleep apnea and hypothyroid but still has hypersomnia with CPAP and thyroid meds, so I guess that's what makes it idiopathic but I imagine that even though the sleep apnea and thyroid are controlled, those probably are the instigating factors in her idiopathic hypersomnia.  Then again, what do I know?  LOL]

[mtgardner]

I have not had any sleep studies or nap studies.  I did not know there was such a think as a nap study!  I have only been falling asleep in the afternoons for the past few months and I am on a new supplement that is supposed to ramp up my adrenals.  Not sure if that is why or not.

Once I read the article on upper airway resistance I started sleeping on my side with my head tilted back.  I sleep much more soundly, rarely jumping up from occlusion, and have started dreaming once again after years of dream absence.   I am sure I occlude when on my back.

What do nap studies show and what do they indicate?  Marie

[Heiferly]

That's strange; I don't think that's one of the known side effects of provigil.  Do you get stomach pain from acidic foods and stuff like that too?

I had a lot of issues with abdominal pain a while back (that was a whole different saga, hahaha), and I'm on Nexium and Omeprazole (generic prilosec—don't ask why both; insurance issue) 3x a day now.  Plus round-the-clock Ondansetron (generic Zofran) for the nausea/vomiting.

Stomach issues are not at all uncommon in dysautonomia.  In fact, I think that's one of our more common conversations around here.  Come to think of it, it's a good thing we all have brain fog because I bet if we poked around I bet we'd find we really just keep having the same general 4 or 5 conversations over and over again all the time, LOL!!  

1.  Stomach upset
2.  Tired
3.  Dizzy/Lightheaded/Fainting
4.  Pain
5.  OMGBBQ these compression stockings are HARD to get on!!  :-p

[AMO]

I diid a few days of provigilll years ago , it gave me extreme  stomach pain so did not even get a chance to see if it would help.
Now with higher dose floinef i had stomch issue too.... i wonder if i have a sensitive stomach?  hum

funny now i think on it, i used to be a mouth open breather/sleeper..... now i do it with my mouth closed, and find my clench in the daytime. Willing to bet i do in the night too:)
Maybe a mouth guard can help you.
be well, amo

[LivingInHope]

I looked at some of the article, thanks!  I don't believe it describes me.  My oxygen, as I mentioned I was told, was like the throttle was stuck on open during that longest period of not breathing because the oxygen did not drop by much at all!  And since childhood, I tend to be a heavy sleeper, rather than a light sleeper, though I did take some antihistamine I recall to actually get to sleep with that contraption for seeing if I had sleep apnea.  From what I learned later, it's possible the antihistamine can depress respirations, but in any event, it sounds like my oxygen was in good shape.  

I did not take a daytime nap study.  I was trying to find out if daily morning headaches was caused by sleep  apnea.  I do tend to be tired a lot in the day, but I don't exercise much and also that's definitely even worse when the iron gets too low.  I think POTS from  what I read can take a lot of energy.  Plus I have a lot of pain issues that can sap me.  I found out that teeth clenching played a big role in my morning headaches.  

[Heiferly]

I realized I forgot to mention that, due to the narcolepsy, I am on Provigil.  So that may give me an edge in alertness over others during the day, though I still need 2 naps during the day (ahh, narcolepsy LOL).  It's not a "fix," but it definitely helps, at least insofar as I can notice the difference if I forget to take it.

Have most of you who have had sleep studies just had the night time polysomnogram or do they also do an MSLT on you (the daytime "nap" study)?

[mtgardner]

Hi!  It is good to be back on the forum again and to see your post.  I just wanted to comment on your test.  I think you may want to read an article on this site I think it is in the sleep disorders forum by Dr. Steven Park who is a doctor who specializes in sleep disorders.  He explains that many people go undiagnosed bcause they don't meet the criteria of  sleep apnea but they have  this other disorder, Upper Airway Resistance Syndrome.  

http://www.medhelp.org/user_journals/show/42438/Tired-of-Being-Tired-A-Primer-on-Upper-Airway-Resistance-Syndrome?personal_page_id=866545

I am not sure if this will come out so you can directly link to it but if you type in the title of the article in the search section of MedHelp I think it will come up.  Hope so.

Also I wanted to say I tried posting on my quest for finding others with PAF today but I see it isn't there....so will try again.  I think I forgot to log in or something....Marie  

[AMO]

count me in for mornings be ing worst.
it can take me quie t a while to wake up , and then when I am, i do not feel i am.

I have felt like i am in another demension or living in the twilight zone for    soo long now, i Would not know what to do if i ever get back through the looking glass:)
then I see patterns of standing tachycardia in the afternoons.

amo

[LivingInHope]

I'm one of those who feels the need to drink some in the night when I get up because I'm so dry, though I don't like to do too much or I have to get up too much!  Lemons are supposed to have a lot of health benefits, I believe.  I can't have it with my interstitial cystitis and GERD.

Marie- hope you got my PM today!  I had a sleep apnea test and they said the longest time I didn't breathe, it seemed the throttle was stuck on open because my oxygen didn't fall below something like 96 or 97 percent- I believe when the apnea was over 40 seconds!  I did not qualify as someone with the sleep apnea diagnosis due to not meeting the minimum number of incidents required for it.  I have to sleep on my back a lot because of TMJ and neck issues.

[mtgardner]

I am wondering if others are aware of a sleep disorder, relatively new, called upper airway resistance syndrome.  It has been linked to women with hypotension in particular and to autonomic dysfunction.  There are some intersting articles out there.  Not all sleep labs are aware or it or test for it but it is treated like sleep apnea and can make a huge difference according to some who have had it and sought tx.  I suspect I have it but have found not sleeping on my back makes a huge difference.  I am getting much more sleep and have fewer nights where I jump up because my throat occluded.  Just a thought.  It can also influence circadian rhythmes.

Also I have a hypertensive response to eating especially carbs.  I avoid all carbs in the morning and do much better.  I eat a light protein snack and water in the morning and have more energy.  I have also seen a list...can't remember where...that says certain food should be avoided and of course large meals.

I have more fatigue in the afternoons.  I have stood more by then and that seems to make a difference also having had yet another meal.  I often fall asleep in the afternoons off and on.  I try to get my work done in the mornings.

Forgot to mention my current dx is PAF.  I have been most grateful for all the information shared here. I am new to the dx so I don't have much experience but will share what I have experienced or come across on the web.  Marie

[Heiferly]

My current diagnosis is non-specific—just plain ol' dysautonomia with orthostatic hypotension and syncope, but I have a lot in common with POTSies.  (I have narcolepsy w/ cataplexy as well, so I can't always comment on issues of sleepiness because of that confounding variable.)

Keeping to a second-shift schedule works best for me, so I wake up around 10:30 (11 at the latest) and go to bed between 10 PM and 2 AM depending on how my nap schedule was that day and how sleepy/fatigued I am.  It does take me about an hour in the morning to truly "feel human," but I've never been a "morning" person so I'm not sure how much of this is attributable to the narcolepsy and how much is the dysauto; my BP does run a tad lower earlier in the AM generally, despite round-the-clock Midodrine, most likely due to overnight fluid losses.  

To replenish fluids, I start my day off with a 32 oz. mug of decaf coffee a 32 oz. crystal light or Powerade Zero.  I generally finish about half of each of those with breakfast, sometimes more.  I will then only shower if my BP and HR are within ranges that have proven over time for me personally to be optimal for tolerating the heat/humidity stress of the shower without leading to a high likelihood of syncope.  (I do use a shower seat, but this is still one of my biggest triggers.)

I'm a stickler on my meal and med schedule (and though my bedtime varies, my wake time is pretty constant as are my naptimes), which I think really helps to minimize ups and downs triggered by time of day.  If anything, evenings are sometimes especially difficult for me, but I attribute this more to exhaustion as it's primarily the case when I've been active during the day.  

Overall, the triggers from my environment (e.g., heat, humidity, high demands on my attention/alertness/wakefulness) and my activity (e.g., orthostatic stress, exercise intolerance, certain body positions or movements, failure to consume adequate fluids/electrolytes) and at times circumstances beyond my control (i.e., exacerbating stressors such as unrelated illnesses, surgeries, injuries, and major life events) overshadow any trends in symptoms seen based on time of day.