Pokey

One more thing to consider...what does your HR do at night while you sleep---UNMEDICATED? I had a 24-hour holter monitor and it showed most of the night my HR was in the 50's to LOW 40's. My PCP looked at it after I asked him to, and yanked my evening dose of BB. If your HR is already low at night, it doesn't need to go any lower! You probably would like to actually wake up in the morning!

I take a baby dose of Propranolol at 6:30 am and that's it for the day! Melatonin slows my HR (also shown on the holter monitor) so baby dose of that too!

Thanks for everyone's feedback.

I like the way you think, Firewatcher. I was thinking the same. My HR while supine, sleeping, is between 45 and 80, and my supine BP is usually normal. So, I am going to take my morning dose of Coreg (the short-acting one), and then the second dose in the early afternoon, such that it will be largely cleared from my system.

I know to read the side-effect profile of meds with some cynicism (i.e., it's largely about any possibility of harm that could result in a lawsuit), but there is some pretty scary ones pertaining to beta blockers, that make sense intuitively, by virtue of the neurohormonal changes (e.g., increased triglycerides, increased LDLs, decreased HDLs, etc. etc.). I suppose this reinforces the importance of a good diet and some type of regular cardiovascular exercise if we can do it, particularly when on beta blockers.

Again, thanks for all the feedback. I'll report back on sleep changes after a few nights. Good news is no intolerable side effects from Mestinon -- though I may need to start taking some charcoal (hint, hint) -- and it seems to be helping me exercise more intensely and with greater regularity.

Take care,

P

I've read some reports on this site, of people complaining that beta blockers compromise their ability to sleep. After doing a little research, I discovered that beta blockers can compromise natural melatonin production, which we need to fall asleep and maintain a normal sleep cycle.

I always figured that beta blockers (I take Coreg, an alpha/beta blocker) would help me fall asleep, by reducing the effects of adrenaline, that are often improperly surging in my system. But then I took a few days off, as I transitioned to a new med, and falling asleep became much easier, leading me to suspect that the Coreg is interrupting my sleep. I would love to hear the accounts of others.

Thanks for any input.

Thanks for the thoughtful reply, Pooh.

I don't know the "official" answer to your question but I can tell you that none of the "top" facilities that research and study these disorders use nitroglycerin or any of the other drugs sometimes used at other places when they test patients.

I have always been told the test really isn't reliable if drugs are used as part of the test.

Hmm, that's interesting. Thanks. I've read a fair bit on the subject, and it seems to be a common practice -- essentially, it's trying to duplicate real-life stress, by kicking up your adrenaline, and seeing how your body responds, which seems to have value to me. But what do I know? It doesn't make much of a difference to me; I was curious more than anything about the test results. My doc prefers the poor person's TTT -- changing from a lying position to a standing position, and then taking vitals at various points in time in the supine position. This more closely reflects real-life movement, and requires home-grown adrenaline. She gave little attention to the TTT results, which were ordered by my cardiologists, before I began seeing a specialist.

I don't know if this answers your question precisely, but my doctor considers my tilt table test "positive" and I did not pass out until nitroglycerin was administered.

I don't know what all of my readings are since I don't have a copy of the test report (but I will be asking for one). I was standing for several minutes with no difficulty prior to the nitroglycerin; once that was administered I was out in under a minute.

As a result of the positive tilt table test I was diagnosed with neurocardiogenic syncope and orthostatic hypotension.

Thanks. Your test is definitely a positive. I did not pass out though; I just had pre-syncope symptoms.

I believe that people with POTS are less likely to pass out, as their hearts beat faster to balance the system. I believe most people with NCS have hypotension and bradycardia (i.e., BP and HR drops out, resulting in a lack of circulation to the brain). I was in decent condition at the time of my TTT; if it were a year earlier, when I was extremely weak, I would have been out for sure. I was having occasional black outs, and frequent gray outs, back then.

Again, thanks for the reply.

Thankyou Ernie.

I can understand how salt could help in someone who's blood pressure drops on standing, however my BP does not drop, so I dont understand what is going on.

I guess it must be a circulation thing, for the same reason that my arms hurt and feel heavy when I lift them above my head.

I'm tired of being tired and foggy!

It's likely cerebral hypoperfusion. I can certainly relate -- my once strong "working memory" is now pathetic most of the time, particularly if I am standing and there's lots of stimulation or stressors. While I don't think my cognition is getting worse at this juncture, I don't think there has been any sustainable period of improvement for the last 3 years. I can't tolerate most of the meds that have been recommended by my doctors (e.g., the meds used for ADD, narcolepsy, etc.).

You may want to research Jay Goldstein, who wrote a couple of books called Tuning the Brain and Betrayal of the Brain, as well as a number of others pertaining to FMS and CFS. He has some real interesting thoughts about calcium channel blockers and NMDA antagonists, among so many other classes of medication, that can help body pain, cognition, etc., things many of us suffer from. He's no longer practicing, which is unfortunate, as he had a pretty cool approach to treating his patients; he was practically running an experimental lab out of his office, and would try multiple meds on patients during a single office visit.

If we're all foggy, maybe it will feel like blue skies and sunshine! ; )

Hang in there.

I've been wondering whether the following is deemed a "positive" tilt-table test:

1) Horizontal -- pulse is 65; BP is 126/71.

2) Upright (without medication) -- pulse is 90; BP is 129/92 (seems like border-line hyperadrenergic POTs -- pulse a little shy of the normally required 28-30 point increase).

3) Upright after .3 mg of nitroglycerin is administered -- pulse is 115; BP is 96/72 (greater than 20 point drop in systolic, and 10 point drop in diastolic, suggestive of orthostatic hypotension); headache and nausea experienced (i.e., pre-syncope), but no syncope.

Test concluded orthostatic intolerance, likely caused by hypovolemia. (I don't know where the hypovolemia inference came from, as that is nothing more than one possible explanation for the drop in blood pressure.)

It's worth noting that my pulse normally increases 40+, and systolic drops 30+, when I go from lying to supine, and ANS testing has already confirmed POTS. But I am just wondering if this is considered a positive HUT/TTT. Based on my research, I believe it is, but it's tough to find definitive criteria where there is no syncope.

If anyone has any official, expansive criteria that they can direct me to, I would appreciate it.

Thanks a lot.

~P

How do you do it? I mean, how do you manage, day to day?

I get by because up until recently I never knew there was something officially wrong with me. I mean, I knew there was something wrong but I nobody ever believed me so I have always just kept pushing. I work full time, and I put myself to school full time while I was working. Looking back, I don't know how I ever had the energy to do it.

Now that I have some official diagnoses though, I'm afraid I'll let myself give in to the excuse. I'm afraid things will get worse. I'm afraid it will get harder. I'm afraid I'll feel like giving up.

I'm out sick from work for the second time in two weeks because of a cold/allergies. My stupid body isn't cooperating and I'm afraid it's going to sabotage my job. I've gotten in trouble at jobs before because of problems with sleeping, or doctor's appointments, or migraines. Thing is, I have an incredible work ethic but my stupid body just gets in the way.

So how do you do it? How many of you work on a regular basis? How many of you can't work? Is it likely to get worse, or do I need to just keep pushing?

I'm just so tired of always being sick in some way, both literally and figuratively.

Brianala, sorry to hear about the challenges you are facing. I can certainly relate, and struggle with the same issues you speak to.

One thought that comes to mind is you may wish to consider contacting the appropriate HR rep of your employer, and look into taking a medical leave and disability coverage. You may also want to contact the appropriate State agency regarding state disability insurance, as well as federal SSDI.

It sounds like you are tenacious, and that you may view this as "giving in," but you may be thankful for teeing things up before, god forbid, the time comes where your health is such that you cannot work. If you lose your job before raising these issues in a very prominent manner, you may encounter a lot more difficulty in continuing to receive some portion of your salary.

Hang in there, and I hope things improve for you.

I can totally relate to your descriptions about sleep. And I can tell that this directly correlates with my dysautonomia. On the days when I'm doing more stuff that stresses my ANS (standing, talking, stress) I can feel the horrible "adrenaline" surges. I think my sleep is a lot more shallow on those days. I can sometimes sleep for a few hours without dreaming, but usually past 4am all I do is dream one crazy dream after another. If I'm having a lot of chest pain and shortness of breath then I tend to have scary dreams about someone trying to kill me . And I've started snoring in the past year, and my husband says I have occasional apnea. I've asked my doc for a sleep study in the past but I don't know if she's aware of the connection between dysautonomia and sleep disorders.

For me, taking a benadryl before bed on my more symptomatic days helps me have a more restful sleep for the earlier part of the night at least.

Hi thankful.

To convince your doc of the nexus between dysautonomia and sleep disorders, you may want to do a google search, and bring your findings to your doc's attention. It's very well established.

Regarding benadryl, while it may help you fall asleep, it can compromise sleep architecture. If you wish to use an antihistamine, there are better ones for sleep, such as atarax and phenergan. Of course, there are many other classes of meds, that are considered more effective for sleep issues.

Hope that helps.

I think that with us, there is disordered sleep architecture, just like there is a disordered ANS. It is all the same chemicals and neurotransmitters that control sleep and dreams. So many disorders that mess with the ANS (narcolepsy, parkinson's, epilepsy) all mess with sleep and dreaming, just like they do with the nervous system. I'm not sure that we can be "normal" in that regard either. I never knew lucid dreaming or dream recall was so rare either, it's a norephinephrine/dopamine/serotonin thing. If you are concerned, get a sleep study. That being said, sleep is EVERYONE's reset button for the nervous system, so if you aren't getting enough sleep you are going to "fry your circuits" faster than "normals."

Firewatcher, I agree, and very well put -- having an autonomic condition certainly increases the likelihood of disrupted sleep architecture. I did not mean to overstate that I did not think the issue was directly related to POTS. It would be more accurate to state that I don't know that a short REM latency is common with POTS' patients. Likewise, as you stated, the disrupted sleep further aggravates the autonomic issues, as well as endocrine issues (e.g., HGH production). And these things can aggravate pain, which in turn, further aggravates the other issues. It's a vicious cycle. I think this underscores the importance of treating sleep issues.

Wait a second, you're not supposed to just jump right into dreaming? I didn't realize that that wasn't normal. I can take a 10-15 minute cat nap and wind up dreaming... Maybe I should bring this up with the doctor??

I tried to have a sleep study done once, and I couldn't fall asleep. (The bed was really hard and the sheets were scratchy and I couldn't handle having an electrode attached to my toe). They let me go at 3:00am and I went back to my apt and was immediately asleep.

Sara

Hi Sara. Entering REM immediately during daytime naps is fairly common. I would not worry about it unless it bothers you. If you don't awaken restored, you may want to try another sleep study, and take something to fall asleep (Ambien, Lunesta, etc.). There's no way I could fall asleep with the wires attached to me without meds.

Good luck.

Thankyou Pokey. So if it is a mess up in my sleep architecture, is there anything that can be done for it apart from anti-depressants? Were you treated for yours?

brainala - I am on Metoprolol and did read 'vivid dreaming' as a side effect, but I am on such a small dose (6mg in morning only) that the doctors do not seem to think it would cause any side effects.

Hi Bizbiz.

First off, I would not suggest going on an anti-depressant solely to correct this issue. Just because this pattern is often observed in patients with depression and anxiety does not mean that you are depressed or anxious. It is entirely possible that you have the physiological stressors often seen in the depression/anxious as a consequence of POTs. My best advice is to get a sleep study, so a doctor can determine the extent to which your sleep architecture is compromised. But if you feel restored in the morning, you may not want to bother.

I have tried various treatments to slay the sleep monsters (not meant literally), without success. But my issue is different: I am virtually without delta sleep, probably because of chronic pain, and possibly because of neuro-endocrine issues.

I don't know anything about Metropolol, but if it is a Beta blocker, it may block production of melatonin, which could disturb your sleep cycle. You may wish to try melatonin, starting small (300 mcgs and moving up from there, as necessary).

As for your vivid dreaming, when you nod of during the day, or while you fall in and out of sleep in the morning, I would not worry about that unless it bothers you. I don't see anything wrong with that. Though, you may wish to mention that to a sleep doctor.

Hope that helps.

try searching "hypnogogic"

Or perhaps "lucid dreaming," which is when you are in a semi-conscious state.

Hi,

I have a question, and also needed help finding an older post. Question first:

Since I was hit with POTS, I suddenly have very weird and vivid dreams. I also find - dont know how to explain this, but I'll do my best - that when I go to bed, not long after closing my eyes I seem to go straight to dreaming, almost like lucid dreaming but not. I used to go to bed and lay in bed about 10 or 20 minutes just thinking and relaxing before starting to drift into sleep. Now, only a few seconds after closing my eyes I'm almost dreaming while awake. I also find this happens in the morning, if I wake up but decide that I'm not ready to get out of bed yet, I'll stay in bed trying to sleep but end up in and out of this dreamy 'la la land'. Can anyone relate? I know there have been many posts about POTS and vivid dreams, so I'm sorry if you are all getting sick of this subject.

I have also been trying to find a post I read a few months back, but am now having trouble finding it (brain fog!?). It was about dreaming - I think the title or sub title was 'reality vs dreaming'...something about dreaming in the mornings. I have tried entering 'dreaming', 'reality' etc in the search function, but so far havent been able to find it.

Thanks.

Hi bizbiz. I can't say that I can relate, as I rarely experience REM. My sleep architecture is a mess, as confirmed by 3 sleep studies.

I would like to note, however, that entering straight into REM is abnormal sleep architecture. Ordinarily, you enter light sleep, then proceed to heavier delta sleep (the restorative sleep), and then REM. These cycles last from around 70-100 minutes. So, ordinarily, you are supposed to enter REM around 1.5 hours into sleep. (I don't get there until sleeping for around 4-5 hours.)

Ordinarily, REM sleep increases in proportion to other sleep stages as we approach waking time. Thus, it is entirely normal for there to be lots of "La-la land" as you drift in and out of sleep in the morning.

Certain meds can cause vivid dreaming. Also, it's worth noting that depression and anxiety (which many POTS' patients suffer from, as a consequence of dealing with chronic illness, and sleep disturbance, as well as a function of increased catecholamines) often causes increased REM sleep.

If you have good insurance, you may wish to see a sleep medicine doctor, who may want to have you submit to a sleep study. Most sleep medicine docs are either pulmonolgists or neurologists.

FWIW, I don't believe this is directly related to POTS (i.e., a common symptom), though I do know that many POTS patients complain of sleep disorders, as is the case with CFS and FMS.

Hope that helps.

Pokey

P.S. I thought this may be helpful:

Biol Psychiatry. 1997 Feb 15;41(4):419-27.

Changes in sleep architecture following chronic mild stress.

Cheeta S, Ruigt G, van Proosdij J, Willner P.

Department of Psychology, University of Wales, Swansea, United Kingdom.

Chronic exposure to mild unpredictable stress causes subsensitivity to rewards (anhedonia). These effects are reversible by chronic treatment with antidepressant drugs, and have been proposed as an animal model of depression. In the present study, sleep architecture, particularly the rapid eye movement (REM) component, was mapped in rats following exposure to chronic mild stress. The study used a unique large scale automated sleep system to record and analyze the sleep signals from 32 rats simultaneously. The effects of stress on sleep were maximal following 21 days of stress, at which time the stressed animals demonstrated decreases in active waking and deep sleep, and disruptions of REM sleep. The changes in REM sleep included increases in the duration of and transitions into REM sleep over the sleep part of the sleep-wake cycle, and most importantly, a reduced latency to the onset of the first REM period. These sleep abnormalities, and in particular the decrease in REM latency, are consistent with those reported in endogenous depression. The results provide further support for the validity of the chronic mild stress paradigm as an animal model to study the mechanisms underlying endogenous depression.

[Obviously, living with POTS is a strong stressor on you, physiologically, as well as psychologically.]

I was reading tha tis a better treatment for hyperadrenegic pots because its an alpha and beta blocker or something along those lines?? Might mention it to my doc next time i see him.

Old thread, but wanted to note that I take Coreg for adrenergic pots. It's largely effective, though it doesn't resolve the BP drops, which I still have. I just added Mestinon for this. (I posted another note under the propanolol thread, which I believe was in response to your post, ramakentesh, re beta blockers interrupting sleep. I may be mistaken.)

I have a friend who takes norpace, and it works well for him, and seems to be controlling the drops.

Hope that helps.

I got the o.k. to add another 10 mg pill after lunch and I can even add another without checking in with them. After the 30 mg a day I think I have to check in again so hopefully I don't need to go past that.

Jen

Hi all. I'm new to the board, and plan to give a fuller introduction this weekend.

But I have a burning question.

I have adrenergic POTS, with some orthostatic tolerance (I get the BP drop, but because my BP tends to run a little high, the drop is only to 95/85, unlike some of you, who really plummet to dangerous levels). I have been taking .1 mg Florinef, along with a healthy dose of Coreg. I recently added Mestinon, and tried dropping the Coreg (an alpha-beta blocker). Not good -- major tachy returned. So, I am back on the Coreg. And I've noticed that I am having much greater difficulty sleeping. Until reading this thread, I was unaware that beta blockers could interrupt sleep. Does anyone know if this applies to Coreg too? Sleep disturbance is one of my most significant issues, as it really thwarts my cognition and increases my chronic body pain.

Thank you in advance for any help. I hope this is not considered off point -- if so, I can post a new thread.

Pokey