Fast heart rate while sleeping, wakes me up

[ahimsa]

Fast heart rate while sleeping, wakes me up - dysautonomia?

Hi folks,

This is my first message to ask a question about one of my ME/CFS symptom. This is probably going to be a long message but I'll try to make it as clear as possible.

One of the symptoms that has been increasing a bit over the past few years is rapid heart rate while I am sleeping, usually in the early morning hours (4-6 AM), beating fast enough to wake me up. For example, one instance of this showed up on my last holter monitor as 134 beats per minute at about 6 AM. Sometimes it happens more than once (2-3 times) in the early morning. I'm able to fall back to sleep but it is very disruptive to the sleep.

First, I should mention what this problem is not. I have had another type of tachycardia, AV nodal reentrant tachycardia, since I was about 11. That problem, while annoying, is not at all disabling for me. It is apparently caused by a short circuit in the heart. It feels quite different. First, the switch from slow to fast heart rate, and back again, is within a single heart beat. Second, when that type of tachycardia happens the heart rate is a lot faster, around 180-190 beats per minute, not the range of 100-140 beats per minute that wakes me up. Third, while it has happened a couple times during my sleep in my lifetime it almost always happens while I'm awake. I've had this other type of tachycardia for almost 40 years now so I know what it feels like. I generally just rest for a bit, or try the Valsalva maneuver (that works sometimes), and it usually goes away by itself after a few minutes (there are a few times when it has lasted longer, up to 20 minutes, but that's another longer story).

So, back to this new type of rapid heart beating, the kind that wakes me up while I'm sleeping. I assume it is part of my range of problems with the autonomic system. I have a type of OI (Orthostatic Intolerance) called by various names, e.g., NMH (Neurally Mediated Hypotension). I've had two different abnormal tilt table tests (one in 1995, another in 2003 due to the evil disability insurance people) and my blood pressure dropped to something unmeasurable after 20 to 30 minutes. And while I did not seem to have POTS when I was first diagnosed with NMH back in 1995, the last few times I took my blood pressure while standing up (another long story, again related to evil LTD insurance people) my heart rate was quite variable but was as high as 150 bpm.

Back to the OI issues, I understand (sort of, LOL!) that body postures of sitting or standing stress the body and cause blood pooling and that affects the body's ability to regulate blood pressure and heart rate. And getting overheated, eating a full meal (blood goes to the stomach) and a few others triggers can cause symptoms for me, too. I watched that recent CFIDS Assn sponsored webinar not long ago and unless it was in the Q/A section (I cut out before that section) I didn't see anything about rapid heart rate while lying down and fast asleep.

Anyway, what I don't understand is what is happening while I'm lying flat, asleep, that is causing this rapid heart rate that wakes me up. It's not anxiety. It's not a nightmare. I just wake up and wonder, huh, why is my heart going this fast? I often feel too warm so maybe that's part of it--my body is trying to cool off and it can't? I throw off the covers to try to cool down. Then I thought, could it be sleep apnea? But I thought I read somewhere that the heart actually slows down when that happens. And it doesn't feel like I'm gasping for breath (and my husband has not noticed that, either). Sometimes I get up and drink some ice water. What's strange is that as I get out of bed my heart rate SLOWS DOWN, which is odd, because that action requires more physical exertion, minor as it is, than just lying still. But why would moving around make the heart slow down? But even if I'm really too groggy to think or move around, and I just lie there in a daze, my heart does slow gradually after I wake up.

So, I guess I have two questions:

1. Has anyone else, especially those patients with some form of orthostatic intolerance, ever had this symptom?

2. Do you have any guess as to what might be causing it? Or how to prevent it?

I'm obviously going to mention this to my doctor at my next visit but thought I'd ask some fellow patients for their thoughts. Generally, my doctor is very supportive but I think I need someone who is a specialist in autonomic dysfunction. I've been avoiding trying to find yet another specialist (I really don't like going to doctors) but it's time to stop ignoring this symptom now that it is happening more and more frequently.

Thanks!

 

[potsrecovery]

Oh BEEN THERE!! I have been diagnosed with OI and POTS. I frequently, during times when I am particularly symptomatic during the day, wake up at night because my heart racing. It's uncomfortable. My resting heart rate is around 65bpm and when I wake up it is around 110-120bpm. I do know that when I am feeling better during the day I don't get the night tachycardia so much nor do I get the wild temperature fluctuations so much at night.

You said your nighttime tachycardia is worse. Do you find that your other symptoms are getting worse?

 

[serenity]

have you been tested for apnea? just curious

 

[CBS]

Hi ahimsa,

A past thread dealt primarily with BP but it contains some comments on HR spikes (http://www.forums.aboutmecfs.org/showthread.php?1968-Help-Blood-pressure-TOO-HIGH...) but I too have been there and felt that. I began waking every night with steadily increasingly HR and higher BP (heart beat was just pounding though my entire body). I also started to experience lots of tingling, numbness and pain in my arms and legs, episodes of Bells' palsy, TIA's during the day and syncope, often upon waking or would be woken up by these. Eventually my cardiologist prescribed an ace inhibitor. In retrospect it was viral co-infections causing inflammation and autonomic nerve dysfunction with HR and BP spikes exacerbating the effects of inflammation.

I'm still on the ace inhibitor (and a low dose beta blocker) but BP and HR have become more controlled on lower doses after 6 months on acyclovir. I should note that the ace inhibitor took 10 days to take effect but once my BP was normalized all of the severe neural issues (palsy, neural Sx, high BP and HR spikes) calmed significantly. They flare occasionally if I push too hard. I'd strongly recommend being procative with these Sx. Things got pretty scary for me; last summer had approx. 8 ER visits and 6 days in the hospital from late April to early July (about 10-11 weeks). Haven't had a single "non-scheduled visit" since starting on the ace inhibitor.

Good Luck,

Shane

 

[Machair]

I get this too and it is horrid. Usually follows doing too much for a few days. I also have POTS. Palpitations wake me up a lot and really worry me too. I've had them for 15 years- all the time I've had the CFS. They occur mostly at night and as you say wake me up without warning. I find myself exhausted by the morning as sometimes they persist all night. Nuun tablets help -they rehydrate, and I think maybe lack of fluids could be part of the problem as I had this dreadfully on holiday in the tropics.

 

[tolduiwuzsic]

experienced similar symptoms yesterday and was careful to note the body sensations- My heart beat felt deep and prolonged and sometimes sped up, I wasn't short of breath but sensation made me breathe deeper. I was dizzy and lightheaded and very thirsty. It was worse if i sat down. It has been worse over the past few days...I thought maybe because i've been seeing a chiropractor 3 days per week? I mean who knows how all that back-crackin and sinus punching is affecting the CFS. I know he said the sublexations release gas from the joints but could it affect heart rate? Oh yeah, also noticed pain symptoms are diminished when my heart is doing that crazy thing. Any suggestions?

 

[flybro]

just wanted to say LOVE YR NIC tolduiwuzsic.

and welcome to PR forums.

 

[Sunday]

I haven't had it in sleep, sounds nasty, but I do have the OI/POTS thing. One thing that seems to be helping me is ubiquinone; I'm experimenting with larger doses such as 200 mg 2x a day. Suddenly that gasping and heart-pounding I got from the least motion has had the volume turned way down. I hadn't realized; I'd just thought I was so out of shape. But while I am out of shape, there's a clear difference between that and the big gaspy heartbeating thing I was getting before.

Sorry if this is unclear, brain a little fuzzy.

 

[helsbells]

That sounds high and nasty. I have tachychardia, pots etc i do know I wake up panicing or most depressed first thing which improves on getting up. i was told this is because of a unstable autonomics - for some reason this is worst when int he recumbant position, whihc i don't fully understand why but this could in turn turn affect deep tissue oxygen supply which puts your body physiologically in fight or flight.

 

[caledonia]

If it's only at night, suspect either sleep apnea or acid reflux. A sleep study would be a good idea. My sleep study didn't find any apnea or fast heart rate (no episode that night), but it did find "periodic limb movement disorder" (restless legs). I now take magnesium for it and am sleeping much better.

This leaves the heart stuff as being acid reflux which I have no other symptoms of (no burning etc.). To control it, I sleep on a wedge pillow and also avoid laying down after eating for about an hour until things are well digested. This works most of the time.

 

[ahimsa]

Thanks for all the responses! here are a few more details

I really appreciate all the responses. I finally have a chance to reply to some of the comments and maybe add a few more details.

Thanks to those who posted that they can relate to these symptoms. Just as you mentioned, yes, this problem does happen most frequently after a day where I've done too much, especially after those kind of activities (standing, heat, sitting upright with legs dangling, etc.) which exacerbate my NMH/POTS issues. It's generally a sign that I need to rest more for a day or two.

But for me there's always a tension between keeping my symptoms to a minimum by resting vs. being able to feel that I've done more than just eat and sleep all day. I need to have at least a few small goals and accomplishments or I start to feel pretty bad. As I told one doctor years ago, I'd probably eliminate a lot of symptoms if I simply rested almost all the time but "that way madness lies!" So, it's always a balancing act for me. And I'm not very disciplined about writing down or measuring how much I do. So, it can creep up on me when I'm starting to do too much.

CBS, you mentioned viral co-infections. How does one get tested for these? I can't even imagine either my primary care physician (she's an MD) or my cardiologist testing me for specific viruses (virii?). Every time in my life when a virus has been suspected I've been told, "it's a virus, go home and rest and get over it." But maybe some doctors will actually test to find out what virus you have? This is outside of a research setting, right? I'm open to suggestions on how to get a doctor to do this type of test and what the treatment is after you find out what virus(es) you have.

Also, CBS, you mentioned beta blockers. I have heard of these for folks with POTS. I am trying to avoid adding yet another medication (I'm on 3 prescriptions - midodrine, fludrocortisone, potassium - plus salt tablets). I also thought that patients who tend to have low blood pressure, or drops in blood pressure (NMH), have to be careful with dosage of beta blockers so that it slows the heart rate but does not lower the BP. I'll talk with my cardiologist next time I see him (only see him once per year).

caledonia, this post was asking about my heart problems at night because I was trying to figure out what is causing the heart racing while lying down flat and fast asleep. But I have problems regulating heart rate and blood pressure during the day, too. For example, I have increased heart rate when standing still or sitting. If I stand still long enough (maybe 2 minutes) to check my standing blood pressure my heart rate (which is also recorded by the BP monitor) can be anywhere from 100 to 150. My understanding of chronic orthostatic intolerance is that it is the standing still (esp. first thing in the morning before I take midodrine) that causes that rapid heart rate. I understand that upright posture can trigger problems.

But when I'm asleep I am lying flat. I thought that orthostatic intolerance would not be a problem while lying flat and sleeping. I'm guessing this symptom is related to my overall autonomic problems but I'm trying to understand the trigger for increased heart rate while lying flat in case maybe I can eliminate this problem. My cardiologist (and that recent CFIDS Assn webinar, and lots of web sites that I've found) have explained the trigger for increased heart rate while standing/sitting. They just didn't explain the reason for symptoms while lying down and fast asleep (unless I missed it).

helsbells, you said:

... unstable autonomics - for some reason this is worst when in the recumbent position, which i don't fully understand why but this could in turn turn affect deep tissue oxygen supply which puts your body physiologically in fight or flight.

I've heard something like this but I don't really understand it either. I mean, we have to sleep, and most people do this lying flat. Am I going to have to tilt up the head of my bed? (I don't want to inflict this on my husband) Or sleep in the recliner so that my head is above my heart? I admit that I really don't want to do either of these things. I'd like to avoid whatever is causing this symptom without having to change my bed if that's possible.

I'm not sure I can get a sleep study any time soon but I will put that on my list. I don't think it is acid reflux, and my husband has never mentioned me gasping for breath and waking up, but maybe it is some form of central sleep apnea instead of obstructive sleep apnes. Does apnea cause increased heart rate? Anyone know for sure? As I said, my 6 AM heart rate (yes, I was in bed! don't get up until at least 8:30-9:00) was 134 on the holter monitor so I have a rough idea of how fast it is going when this happens.

For what it is worth, I want to repeat that this rapid heart rate does not scare me. I don't feel any panic or anxiety when it happens. I'm just annoyed to be awake (I wake up thinking, "oh great, not again..." because it usually happens multiple times). I'm exhausted, groggy, out of breath, and sometimes feeling overheated. But I'm not afraid of it.

I've been sick for 20 years now. I'm used to weird symptoms and I don't worry that something really bad is going to happen. In fact, I'm usually calming my husband down and telling him not to worry about my symptoms. This particular symptom happens while he is sleeping so I don't have to deal with his worries when I wake up. I just roll over and try to go back to sleep, or get up and walk around a bit if it does not go away quickly.

Someone mentioned that various medications had reduced his ER visits but I have never even called the doctor about this let alone gone to the ER. I just don't see the point since it is just a transient increase and goes away in a few minutes. It's disruptive to my sleep, and certainly not helpful for my overall health, but not dangerous. So I just wait until the next doctor visit and mention it then.

I hope this is not too rambling. I'm sure I missed responding to someone out there but please don't feel offended, I'm just not always completely organized with my thoughts.

Thanks again for all the input and I'll take any other suggestions you might have on this. I'm most of all curious about the mechanism that triggers this and what things to do to avoid it. I know that one option is "rest more" but that's really not a good solution. It's like my whole life is that old doctor joke - "Doctor, it hurts when I do this!" "Then don't do it!"

 

[liverock]

Ahimsa,

Do you regularly check your BP at home both standing and supine? I ask because one of the side effects of Midodrine
can be hypertension when supine which could cause tachycardia. You may want to check your BP whilst in bed and suffering the symptoms. It could be that your dosage needs adjusting

http://www.pediatricnetwork.org/medical/OI/johnshopkins.htm

MIDODRINE

Brand name: ProAmatine

Type of drug: Midodrine is classified as an alpha-1 agonist, or vasoconstrictor drug. Unlike the stimulant drugs, it is not thought to have direct central nervous system effects.

Action: The main effects of midodrine are to cause blood vessels to tighten, thereby reducing the amount of blood that pools in the abdomen and legs, shifting that blood volume into the central circulation where we want it to be. The drug has been used in thousands of individuals around the world, and appears to be well tolerated.

Side effects: The main side effects from midodrine in those with orthostatic hypotension (a condition similar to, but not the same as, neurally mediated hypotension) are: high blood pressure when lying down in 15-20%, itching (also called pruritis) in 10-15%, pins and needles sensation in 5-10%, urinary urgency/full bladder in 5%.

Common side effects to be expected include a sense of the scalp tingling, and the hair on the arms and neck standing on end. These changes are signs that the drug is working, and are not reasons to discontinue the drug. Adolescents and young adults with NMH and POTS should not be at risk for the same degree of high blood pressure as those with orthostatic hypotension (whose average age is closer to 50-60 years), but one needs to watch for this.

Dose: A conservative starting dose for midodrine is 2.5 mg three times daily to ensure that the dose is tolerated. A reasonable dose progression follows:

2.5 mg three times a day for 1-2 days (Each dose taken approximately 4 hours apart).
5.0 mg three times a day for 1-2 days
7.5 mg three times a day for 1-2 days
10.0 mg three times a day

If there is substantial improvement at a lower dose, then it may be wise to stay at this dose for a longer period. It is not always necessary to march up to the 10 mg three times a day dose. The drug effect lasts only about 3-4 hours, so the medication may need to be spaced differently once it is clear that it is having a beneficial effect.

 

[Athene]

Dear ahimsa,

I gather that this is sinus tachycardia, since you mentioned the arrhythmia separately. Is that right?

If so, and you always feel too hot when it happens, I would think it could be worth investigating if you are having adrenaline surges or if you have hyperthyroidism. Also you may have wildly fluctuating blood pressure, which can trigger this too and which is very common among us folk.

Just a few suggestions.

 

[CBS]

Hi ahimsa,

First of all, for myself, I have had autonomic issues for some time but they reached a crisis level last summer. Before then my condition sounded a lot like what you're describing , unusual (and at times uncomfortable) symptoms but nothing to get too worked up about, almost always after having done too much (by my CFS standards, not by my old healthy self standards).

That changed last summer after a long period of having "overdone it" on a consistent basis. All of the sudden these relatively minor issues became life threatening. My first bit of advice would be to try very hard to not over exert. Looking back, if I had any idea of where that was taking me I would have stopped on a dime. The costs were (and continue to be) enormous and life altering (I think I was the one that mentioned multiple ER visits and hospitalizations).

BP was the most critical issue to get under control. For that, I was prescribed an ace inhibitor. However, I was also having very high HR spikes so I was prescribed a beta blocker as well. Over time I have had to adjust my beta blocker because there are periods when my HR drops and if I don't lower the dose I develop bradycardia (my doc and I joke that this is not because I'm super fit).

As for viral co-infections and testing, I'm not aware of many docs that can do this (or who would know what to test for or how to interpret the results). Mine does but there's a two year waiting list to see him. Generally this is done by an Infectious Disease doc who understands CFS.

Hope this helps.

 

[ahimsa]

My first bit of advice would be to try very hard to not over exert. Looking back, if I had any idea of where that was taking me I would have stopped on a dime. The costs were (and continue to be) enormous and life altering (I think I was the one that mentioned multiple ER visits and hospitalizations).

CBS, I really appreciate the advice. I do think I need to be more careful about overexertion. It has been creeping up on me over the last 4-5 months without me realizing it.

I need to get back to being more careful about scheduling those "rest days" on a regular basis. Pre-emptive resting, which means resting before I get exhausted, is one of the things that works well for me. That and breaking up tasks into very small pieces are two things that help me to stay on that "tightrope" of functionality without falling off and crashing. I also end up getting more accomplished in the long run (slow and steady works much better than push/crash cycles).

I'll still be asking my doctor about this rapid heart rate while sleeping, of course. But I do appreciate the suggestion that I should be careful about pushing myself too hard. Not sure whether I'll be able to pursue the issue of co-infections any time soon but I'll file that away for future reference.

 

[ahimsa]

Do you regularly check your BP at home both standing and supine? I ask because one of the side effects of Midodrine can be hypertension when supine which could cause tachycardia. You may want to check your BP whilst in bed and suffering the symptoms.

I take the last midodrine of the day more than 4 hours before I lie down to go to sleep. Since this type of problem tends to happen in the early morning hours, say 8 to 11 hours after the last drug dose, then I don't think it's the midodrine that's causing the problem. Also, it tends to happen more often when I forget my last midodrine of the day (I have this problem about remembering my pills even thought I have programmed reminders into my Palm TX so that it will BEEP at each pill time to remind me. *sigh* Note to self - audible reminders don't work if you don't keep the Palm TX next to you during the day.)

But maybe the blood pressure is spiking for some other reason? Even if it is a BP spike of some kind that comes along with the rapid heart rate, I can't imagine trying to check either my blood pressure or heart rate when I wake up in the night. For one thing, my heart rate slows down fairly quickly after I wake up. I don't know how I'd sit up, turn on the light, get a watch, reading glasses, and so on, before my heart rate was back to normal. Even if everything was right next to the bed by the time I started to take a measurement my heart rate would have slowed down quite a bit.

And if my blood pressure was spiking wouldn't there be a similar problem? Wouldn't my getting up and moving around change the blood pressure before I could take any measurements? It's like the whole problem with the NMH. The standard doctor office measurements of my blood pressure while I was lying down, then sitting, then standing never found a problem. It took 20 minutes on a tilt table test and then suddenly my blood pressure dropped to something unmeasureable and I blacked out. I have never passed out in "real life." I just feel crappy (e.g., "pre-syncope" symptoms like cold sweat, rapid heart rate, dizziness, nausea, etc.) and have to sit down and rest, put my feet up if possible, and get something cold to drink.

So, if there is a big spike in my blood pressure while sleeping, how could I catch it on my own with my blood pressure monitor? Maybe I'm missing something.

Back to the heart rate for a minute, I knew it was faster than normal when I woke up. But the only reason that I know how fast it is (at least in one instance) is that one night it was captured by the holter monitor as 134 beats per minute at about 6 AM. Before then I would have guessed around 100-105 bpm when I was awakened. I didn't realize how far off I was. So, then I wondered how fast it was getting when I try to stand still. If I stand still long enough to take my blood pressure first thing in the morning, before my first midodrine, my pulse can be anything from 100 to 150 bpm (blood pressure monitor also measures heart rate).

I have checked my blood pressure both sitting and standing and they always take it when I visit the doctor. My blood pressure is always low or normal, never high. I have never checked my blood pressure while lying down but I could do that during the day just to see what the measurement is. I might try that just out of curiosity.

Okay, enough rambling! I do thank you for your suggestion. I'm sure there are other folks out there on midodrine who may need the warning that it can raise the blood pressure while lying down. I rarely lie down flat during the day. I do my resting in the recliner, with my feet up, so that I'm only semi-reclined, not fully flat.

 

[ahimsa]

Update - planning to schedule a sleep study

Hi again,

I talked with my doctor and she thinks it would be a good idea for me to have a sleep study. No speculation from her on what might be causing my problems with frequent awakening during the night and early morning (sometimes with rapid heart rate).

So, if and when I get a sleep study (need to make sure it's covered by insurance before I actually schedule one) then I'll report back with any results. Meanwhile, trying to find the right balance of activity and rest.

Thanks again for all the suggestions and support.

HUGS TO ALL!

 

[kerrilyn]

One of the symptoms that has been increasing a bit over the past few years is rapid heart rate while I am sleeping, usually in the early morning hours (4-6 AM), beating fast enough to wake me up.

I'm having the same thing and it's happening more often. At first I thought it was something to do with perimenopause, because sometimes I wake up and I'm sweaty and I normally don't sweat. LOL

I've had POTS/NMH symptoms for probably 20 yrs but because I didn't feel my heart rate increase when I'm standing I didn't think I actually had POTS until I did a poor man's TTT. I have my first TTT at the hospital this week. ((Not looking forward to that)). The only times I really notice my heart pounding is in bed in the morning (9-10 am), or sometimes if I have a nap. I overdid today pulling weeds and came in for a nap (crash) and I kept waking up from my heart pounding. It never wakes me up in the middle of the night though.

Sometimes it jolts me up half-awake and I sit up quickly for a split second and then it feels like a force pushes me back down to lay flat again. I must let the rate get back to a normal rhythm and then think about getting out of bed or more often than not I just fall back to sleep and try again later. I'm usually a zombie till about noon-5 pm anyway.

Like you, ahimsa, it made no sense to be to have OI problems when I'm already laying flat, just sleeping. After reading this thread, I'll take it as a cue to stop trying to do too much activity and maybe check my blood pressure when I wake up to see if it's high. That would be amazing because I don't think I've registered above 110/70 my whole life.

 

[kristiljkh]

Hi Ahimsa,

I was on google trying to figure out why my heart was beating so fast in the morning when I came across your post. It sounds like the exact same thing. Ive had cfs for about 15 years, I have had a tilt test that I failed, and im dizzy most of the time. Anyways for about the past year ill wake up to my heart beating really fast. Its not painful and I usually fall right back to sleep. Im on cymbalta and ambien but nothing for blood pressure.

Have you found out what has caused this problem?

Do you know if its dangerous?

 

[ahimsa]

Hi Ahimsa,

I was on google trying to figure out why my heart was beating so fast in the morning when I came across your post. It sounds like the exact same thing. Ive had cfs for about 15 years, I have had a tilt test that I failed, and im dizzy most of the time. Anyways for about the past year ill wake up to my heart beating really fast. Its not painful and I usually fall right back to sleep. Im on cymbalta and ambien but nothing for blood pressure.

Have you found out what has caused this problem?

Hi kristiljkh,

The short answer is that I never got a diagnosis from any doctor for this specific problem. I talked about the problem with my primary care physician, my cardiologist, and a sleep specialist. But none of them were able to tell me what's going on with me during sleep that sometimes makes my heart rate go so fast. My primary care physician does think that it's part of my overall problems with my autonomic system but she had no more information than that. She gave me a referral to a sleep specialist but I only saw that specialist twice (more details below).

I think I posted that I never had a full sleep test. I took an "at home" sleep screening only. It has a clip to measure your blood oxygen and a cannula (sp?) for your breathing. I wore it one night and then had the sleep specialist look at the results.

This "at home" screening showed zero apnea (even normal people sometimes have a few, but I had none). And my blood oxygen was fine. So those problems seem to be ruled out. That's good but it does not tell me what the problem is.

[Edit - Here's a link to a device that's very similar to what I wore:

http://www.resmed.com/us/products/apnealink/apnealink.html?nc=patients

I laughed at this line in the description - "a simple, cost-effective sleep-screening tool designed to help you increase your business ... " ]

The sleep specialist had never even heard of Orthostatic Intolerance (OI). When I told her my diagnosis of Neurally Mediated Hypotension she asked me, "What's that?" I explained it was a type of OI, and then gave her the 10 page handout from Johns Hopkins (if you want a copy there's a link to the PDF on this page - http://www.cfids.org/about-cfids/orthostatic-intolerance.asp ).

But this sleep specialist never even read it. She just handed the document back to me without looking at it. She acted as if this Johns Hopkins document was some BS that I downloaded from a fringe website instead of a very mainstream source of medical information. Not a good sign.

It seems that most sleep specialists want to focus on apnea as if nothing else exists. After her reaction (not knowing what OI was, and then not wanting to take any time to find out) I did not feel comfortable investing the time/energy/money to do a full sleep study with that type of doctor.

The way I resolved the problem was very low tech. I rested a lot more trying to build up my energy. And slowly my sleep got better. Also, I started drinking more electrolytes at night (either a homemade mixture or a generic form of pedialyte). Sometimes I add it on top of the water and sometimes I substituted it for part of the 3 liters of water. And I eat less at night. Some nights I just skip dinner. Many threads on sleep talk about how folks need a bedtime snack to get through the night. I'm the opposite. Not eating is helpful for me (I think it's splanchnic pooling where blood pools in the abdomen after eating).

I'm fairly sure that my sleep problems have to do with autonomic issues. I've posted a list of symptoms before that includes sleep problems as one of the known symptoms caused by OI. Here's one page that has a list of symptoms (scroll to the bottom of the page to see it) - http://emedicine.medscape.com/article/902155-overview#aw2aab6b3

For what its worth, I am not on any sleep medications. I do take several medications and supplements - fludrocortisone, midodrine, prescription time-released potassium, salt tablets, and 3 liters of water daily - that are meant to reduce symptoms from the Orthostatic Intolerance. In addition I try to avoid all standing (I sit down to brush my teeth, have a seat in the shower, and so on). I also don't sit upright but rest in the recliner with my feet elevated whenever possible. I also avoid heat. Anything over 74-75 degrees F is "too hot" for me. Even lower temps are needed if I'm going to be moving around doing stuff, not just sitting still.

Do you know if its dangerous?

I don't think so but don't take my word on it. You should check with a doctor because your problem might seem like mine but be totally different.

My attitude is that after being sick since 1990 I just don't get scared by symptoms any more. I'm not a worrier. I try to do the reasonable things. For example, if some new symptom comes then I will eventually go to the doctor, even though I'd rather just not bother since they rarely help. But I am pretty resigned to just coping with my symptoms by adjusting the meds that I have and/or adjusting my own activities. I hate having to rest so much so sometimes I will do more, ramping up my activities. Finally my sleep gets bad enough that I can't stand it and cut back, do less, get more rest, get better sleep, etc.

All I know is that there is a very strong correlation between doing very little and getting a good night's sleep. I rarely go a full night without waking up at least 2-3 times (usually 4-5 times, and on bad nights it's 10-12 times with a max of 20-25 minutes of sleep at a time). But my psychological health is also important. I have to feel like I'm contributing something to my partnership (I'm so grateful for my wonderful husband and want to do things to show him that). And I want to do things that make me happy like meet friends for lunch or coffee/tea.

So, I try to find that balance between doing so much that my sleep gets terrible and doing so little that I'm feeling useless/antsy (only so much reading/TV/computer that I can take). It's hard being an extrovert and trapped inside all day. That's partly why I push the envelope about meeting friends and doing things more than I should. If my main goal was "have the fewest symptoms" then I'd just stay home and rest most of the time but that would DRIVE ME CRAZY.

In fact, I think that even if a doctor told me it was dangerous, that I should get more rest, I'd probably still do what I'm doing now. I'm not scared of dying.

I hope this is helpful and not too rambling. If you have more questions feel free to ask. But I'm just reporting my experience. I don't know whether what has helped me will help you or anyone else out there.