are these symptoms POTS or just M.E?

[anniekim]

I was wondering whether anyone could help. I've had M.e for 13 years, severely for the last seven, including a time of very severe and a better time at the top end of severe. A year ago, I relapsed from which I still have not recovered.

When I was bedridden for 16 months, I couldn't even sit up. For the last year, I can walk a few short steps around my flat, but for the most of the time I have to lie on my bed or sofa. I can manage a lot more if I am lying flat (talking, being on the computer etc). I have always presumed that the need for me to lie flat for a large part of the day is due to the weakness and fatigue of M.E (along with all the nasty neurological symptoms etc..). However, reading a bit about POTs and hearing a lot of people with M.E are reporting they have POTS is making me wonder whether I am showing signs of POTS and thus there might be help for it?

I might be completely wrong here, and forgive me if I have understood it all incorrectly. I suppose my question would be is the symptom of POTS an inability to sit up for very long and stand, or is it more than that? Are there other symptoms that accompany this?

Thank you very much in advance

 

[Sasha]

Hi anniekim - I have had the same questions and did the "poor man's tilt test" where you get up from lying down and measure the drop in your BP and the rise in your heart rate. You remain standing absolutely still for 30 mins (this may be too much for you) and keep measuring. There's a certain set of critieria (beats per min rise etc.) that indicate orthostatic intolerance. I went to my GP who re-did the test and confirmed OI - he sent me to the local cardiologist who did a 10-minute test (despite my pointing out that for ME it can be delayed and you need to do 30 mins) and was de-diagnosed!

Now I am just plain confused about myself but you may have a clearer case. I'm sorry I'm too tired at the moment to find the links for you on the forum (if you go to google and search on "poor man's tilt test" you may find it straight away!) but I think it would be helpful to measure your change in BP/heart rate from lying to standing at least and go to your GP and ask more about it.

 

[anniekim]

Hi anniekim - I have had the same questions and did the "poor man's tilt test" where you get up from lying down and measure the drop in your BP and the rise in your heart rate. You remain standing absolutely still for 30 mins (this may be too much for you) and keep measuring. There's a certain set of critieria (beats per min rise etc.) that indicate orthostatic intolerance. I went to my GP who re-did the test and confirmed OI - he sent me to the local cardiologist who did a 10-minute test (despite my pointing out that for ME it can be delayed and you need to do 30 mins) and was de-diagnosed!

Now I am just plain confused about myself but you may have a clearer case. I'm sorry I'm too tired at the moment to find the links for you on the forum (if you go to google and search on "poor man's tilt test" you may find it straight away!) but I think it would be helpful to measure your change in BP/heart rate from lying to standing at least and go to your GP and ask more about it.

Hi Sasha,

Thank you for your reply, much appreciated. Yes, you are right I couldn't do the 30 minute standing test (I can barely stand, one second max), also I'm housebound so not well enough to visit my GP, although can, thankfully, have tel appts. he's sympathetic but not sure he would listen to this. I am too well to have a hosptial consult at the mo.

I have got a blood pressure monitor though, so I could try measuring my bp/heart rate from lying to standing. How do i evaluate the results? Should the standing be lower or higher etc? I am aware you said you are low in strength in mo, so absolutely no rush for a reply.

 

[Sasha]

Hi - I followed my own advice and googled and quickly found the link (easier for me than for you because I recognised it - it's an article by Dr Bell). If you can only stand for a second, though, I don't think you will be able to measure your BP & heart rate (they take several seconds to get a reading - the BP monitor cuff has to inflate & deflate, for example).

I sent my GP a copy of the Bell thing, if memory serves, and another academic paper from a journal on diagnosing OI and its prevalence in ME. I said in my cover letter that I had tested myself and thought I had OI and would like to take it further. I was well enough (just) to go to the surgery and repeat the test.

You sound as though you might be a more clear-cut case than me - your problem with being upright is severe and immediate. I would try to get a couple of academic papers on OI/ME, send them to him, stress that you can't maintain even more than a second standing, and ask how to take the issue forward. My GP was familiar with OI from having patients with MS (I think), some of whom have this so yours may also be familiar with it in other patients.

I will try to post links to the other papers if I can find them when I am a bit better.

 

[anniekim]

Thanks heaps Sasha for the link. May I ask have you managed to be prescribed anything for your POTS? Thank you

 

[Sasha]

Thanks heaps Sasha for the link. May I ask have you managed to be prescribed anything for your POTS? Thank you

I haven't asked for anything as yet but am wondering if I should. I'm worried about being prescribed drugs to raise my BP without the care of a cardiologist. I'd like to seek a second opinion from a specialist syncope clinic but I'm not well enough to pursue that at the moment. The drugs are not without risk.

 

[anniekim]

THanks Sasha for your reply, it was helpful. Good luck with whatever you decide

 

[OverTheHills]

Hi Sasha and Annie

I now believe I have some form of OI (not sure whether its NMH or POTS) and I found out by chance.

During 'bad patches' (seasonal pattern for me/ME) I felt very weak and foggy if I had to stand for more than a couple of minutes. No dizziness but was obviously housebound and close to bed/sofabound by this. By chance I was prescribed beta-blockers to slow my heart rate down during what was probably thyroiditis. After my hyperthyroid resolved, whenever I tried to come off the beta blockers, wham, I was straight into the weak-tired-confused-must-lie-down-now thing. When I restarted them I was OKish again.

Luckily I had seen Nancy Klimas' talk for medics on managing ME/CFS where she recommended beta blockers to deal with OI - something like by slowing the heart rate the heart has more time to fill is a more efficient pump so brain perfusion is improved, even with our low blood volume. Because I'd seen that talk, I realised what was going on.

So I've stayed on the beta blockers at a low dose since and not been housebound (plenty of other symptoms but able to be upright).I tolerate them really well and I'm increasingly sensitive to a lot of drugs.

Just my experience of course, but I hope it helps.

OTH

 

[Sasha]

Thanks, OTH - I've been particularly worried about the likes of midrodine so it's interesting to hear about beta blockers. I've got a lot of respect for Dr Klimas - I wish she was in the UK!

 

[Sallysblooms]

I have had POTS for two years tomorrow....my autonomic nervous system had had some problems two months prior but it all came crashing down two years ago.

I have had CFS for at least 18 years. I had to have surgery and was not able to take pain medicine as usual. I also caught the worst cold of my life at the hospital. Perfect storm. There is no way to know for sure what started my POTS, but that is what I think, the awful stress of CFS, then the surgery and cold. I recovered and felt GREAT. My CFS was doing great so my hubby bought me my favorite car, a precious convertible VW Beetle because I could finally do more and had energy to drive.

I was able to do things and then slowly I had odd things happening. I felt faint, never had before. I had it more and more, but still had no idea what was wrong. Then, BAM, all failed on that day two years ago tomorrow.

I was unable to walk, could NOT get hot, could not even step FOOT outside. That is a tell tale sign, HEAT makes you terribly ill with POTS.

Dizzy, nauseated 24 hours a day. Air hunger, SO many problems when the autonomic system fails. I have Autonomic Neuropathy, the nerves are not working to help my muscles and blood vessels pump blood to my head.

I had very high blood pressure and very high heart rate while standing. With POTS you can have high or low bp, it is variable.

Measuring your heart rate with heart rate watch, bp with a monitor when standing (have someone there) and sitting and lying down is good. Write is all down. Again, be careful when standing, have someone help.

I have made great improvement in these two years, actually in less that one year since I finally got to my integrative MD and had lots of blood tests to see what I needed and lots of supplements to support my body and help with the symptoms of POTS and CFS. The supplements are wonderful and also, in August I stopped eating Gluten since it can cause problems with the nervous system.

What are your symptoms?

 

[Marg]

Hi,

I never even considered that I may have POTS. My bp had been acting a little strangely for a while though..odd readings.. Dr. Klimas wanted a weeks log of bp before my appointment with her last July. She had me take my bp before getting out of bed, then sitting up on the bed before getting up and then after walking around for a while. She told me I had POTS before the tilt table just by looking at the log. The tilt table confirmed it. I am using a low dose Clonidine patch, started with 1/2 O.1 and worked up to what seems to be my dose 0.2. I also drink either an electolyte drink I make...1/4 teaspoon each sea salt and potassium chloride, 2 bottles salt free club soda and 2 cups filtered water or Gatorade G2 (least amount of sugar). I also have to drink a lot of water to increase blood volume. They say 1/2 your weight in ounces. I am doing much better now.

 

[ahimsa]

I have got a blood pressure monitor though, so I could try measuring my bp/heart rate from lying to standing. How do i evaluate the results? Should the standing be lower or higher etc? I am aware you said you are low in strength in mo, so absolutely no rush for a reply.

Hi anniekim,

I have not yet read all the responses yet but I wanted to post a reply so I don't forget. I've done that before, read the whole thread and then forgot to reply!

From what I understand, measuring your heart rate while sitting and then standing, as long as you wait for 10 minutes, may be enough to diagnose POTS (heart rate increases > 30 beats per minute, or goes above 120 beats per minute, during the first 10 minutes of standing). But POTS is only one form of Orthostatic Intolerance (some doctors use the phrase Chronic Orthostatic Intolerance). If you have Neurally Mediated Hypotension (aka, vasodepressor syncope, neurocardiogenic syncope), a form of Orthostatic Intolerance where there is a delay between standing and when the BP drops (although symptoms generally start within a few minutes of standing), then measuring your BP in those positions may not be enough to give you a diagnosis. To make it more complicated, I believe it is possible to have both NMH and POTS. And there are different forms of POTS.

Here's an extract from a Johns Hopkins document on Orthostatic Intolerance that talks about diagnosis:

How are NMH and POTS diagnosed?

NMH and POTS cannot be detected with routine, resting blood pressure or heart rate screening. The diagnoses can be made with a prolonged standing test or a tilt table test. Although a 10-minute test is all that is needed to diagnose POTS, this is too brief for diagnosing NMH, which usually requires at least a 45-minute period of upright posture. Many hospitals and academic centers throughout the world perform tilt table testing. It allows careful measurement of the heart rate and blood pressure responses to the head-up position, usually at a 70-degree angle, in an almost standing position. The usual reason for performing a tilt table test in the past had been for the evaluation of recurrent fainting. Many people with NMH develop adaptations to keep from fainting, such as crossing their legs, fidgeting, or sitting or lying down when they get lightheaded or tired. However, during the tilt table test they must remain still, and they cannot call upon these natural defenses. As a result, fainting can occur for the first time during the tilt table test.

Just FYI, this was my experience. The only times I've ever fainted in my life were during tilt table testing (two different tests, same results--20 or 30 minutes of standing and then my BP suddenly dropped and I fainted).

If you want to read more, the full document (PDF file) is here:

http://www.cfids.org/webinar/cfsinfo2010.pdf

And here's another web site that also has a lot of good information:

http://emedicine.medscape.com/article/902155-overview

If you prefer watching a video (reading is much easier for me, but watching is easier for some folks) then here's a link to a presentation by Dr. Rowe from Johns Hopkins:

http://www.youtube.com/watch?v=5iF30TVLaRE
(slides of presentation = http://www.cfids.org/webinar/slides-090110.pdf )

I hope this is helpful! So many doctors (including some cardiologists) know little to nothing about the autonomic system problems caused by Orthostatic Intolerance. I wish you the best of luck in finding a doctor to help you figure out whether NMH and/or POTS are part of your problem.

 

[ahimsa]

I suppose my question would be is the symptom of POTS an inability to sit up for very long and stand, or is it more than that? Are there other symptoms that accompany this?

Hi again,

Here's one list of symptoms that I found (see http://emedicine.medscape.com/article/902155-overview#aw2aab6b3 , bottom of page) that may be helpful:

Defining symptoms of Chronic Orthostatic Intolerance include dizziness in all patients, with high incidence of the following conditions:

* Altered vision (blurred, "white outs", "black outs")
* Fatigue
* Exercise intolerance (frequently post-exercise malaise)
* Nausea
* Neurocognitive deficits
* Sleep problems
* Heat sensitivity
* Palpitations

A large proportion of patients also experience the following symptoms:

* Headache
* Tremulousness
* Difficulty breathing or swallowing
* Sweating
* Pallor
* Other vasomotor symptoms

As mentioned in the earlier post, POTS is one of the forms of Orthostatic Intolerance but there are others.

 

[Sallysblooms]

You don't always sweat more with POTS, you can lose the ability to sweat. That is really bad, I cannot sweat now. Makes the severe heat intolerance even more dangerous. There are many symptoms but the heart rate is the symptom that sets POTS apart.

 

[ahimsa]

You don't always sweat more with POTS, you can lose the ability to sweat. That is really bad, I cannot sweat now. Makes the severe heat intolerance even more dangerous. There are many symptoms but the heart rate is the symptom that sets POTS apart.

I agree. That list of symptoms for Orthostatic Intolerance that I posted is just one of many lists. Not all the symptoms will be found in all patients. Plus, as mentioned earlier, patients can have different forms of Orthostatic Intolerance (NMH, POTS, or both).

Another thing to add is that there is sweating in response to exercise or heat, which is normal, and then there is abnormal sweating. One type of abnormal sweating is night sweats which I had frequently during the first few years of my illness. It was not due to menopause. I was only 29 then. I'm 50 now and still have regular periods, not even in peri-menopause as far as I can tell. I don't know what caused my night sweats back then but my guess (hindsight) is that it was probably part of these problems with my autonomic system.

Another type of abnormal sweating is the clammy feeling you get right before you faint. I get this feeling at times when I have been standing too long. I get a lot of symptoms - nausea, dizziness, lightheaded, clammy feeling, palpitations, etc. - that I now recognize as presyncopal symptoms (symptoms you get right before you are about to faint). Until the tilt table test I had never fainted so I did not make the association between these symptoms and the drop in blood pressure that I get when standing (and even when sitting upright for too long).

Like you, I also don't seem to have a normal sweat response anymore. I rarely sweat in the heat even though I have heat intolerance (anything over about 74-75 degrees F feels "too hot" for me). But I do have problems with other types of abnormal sweating. Having a messed up autonomic system is no fun!

 

[Sallysblooms]

Yes, no fun for sure. I don't sweat at all for any reason. With "just" my CFS for years I would garden and SWEAT like crazy, but after POTS I stopped. I remember the day I noticed. I got very hot in a restaurant, then went outside where it was HOT. NO sweat, the other people with me did. Really scared me.

I know a lot of people sweat more or less or for other reasons like you said. Like our heart rates, bpressure etc. up and down.... crazy.

 

[TinyT]

I have recently been diagnosed with POTS and found these websites helpful

www.dinet.org
www.ndrf.org/

Diagnostic criteria for POTS is: heart rate increase of 30 beats or more per minute and/or increase to 120 beats or more per minute within 10mins of standing &/or head-up tilt (in a tilt table test).

Obviously being a syndrome means that you can have many other symptoms of autonomic dysregulation. The dinet.org website has a great explanation of POTS and symptoms.

You can do a DIY test at home that lasts 10mins (if you can tolerate it), lying in supine for 10mins & monitor Heart rate and blood pressure (if you have a monitor) then stand for 10mins and monitor the changes. Even if you can stand for a few minutes (still) it'll probably show the results you need. Try pressing the button to inflate the cuff right before you stand up so it takes measurements straight away in standing.

With the partial-dysautonomia type of POTS you can get a slight decrease or slight increase in blood pressure. The hyperadrenergic type is associated with increases in blood pressure (and also plasma norephinephrine).

I have moderate-severe ME/CFS and have found that some treatments for the POTS (I've only been recently diagnosed- so not treating it for very long) do help me to be a bit more functional. Currently a low-dose beta blocker (15mg split between am & afternoon) and salt/fluid intake is helping. I am also trialling Fludrocortisone.

Good luck.

 

[sleepy237]

Dear anniekim , I am a mixed case and always looking at dysautonomia alongside CFS. The best site for info on POTS is DINET. I do have problems just sitting up a lot of the time and alternate between sitting/lying. You are right if you have POTS , it is potentially treatable. I have a tilt test tomorrow. And I expect that from results I will be perhaps prescribed Florinef or Midodrine depending on the Cardiologists analysis. I wish you luck and hope that you can achieve some help for your symptoms. I have pinned all hope on tomorrow but I know it wont cure everything but a little more function would be good. Take care ~Sleepy

 

[taniaaust1]

Yes, you are right I couldn't do the 30 minute standing test (I can barely stand, one second max),

Anniekim. I suggest seeing you cant stand (it would be impossible and highly not advisable to test in the normal way if you can only stand for one second to be trying to push yourself to do that.. there have been severe POTS patients who have had heart attacks from doing tilt table testing!!! It is advised for the medical personal to have oxygen and resusitation equip. available on hand for ME patients doing POTS tilt table tests). So please in your case dont try it standing.

I do think if you have extremely severe POTS it may show up just if you go from laying to just sitting. Its the being upright which sets off POTS and the head up tilt .. shows up better thou while standing but in your case if its POTS making you not being able to stand a all. I personally think it will possibly show up with a modified POTS test with just upright sitting (legs hanging).

POTS is diagnosed by the heart rate rather then the BP. I propose you test yourself to see if POTS does show by taking your heart rate when you first wake up and while laying.. then sit on the side of the bed, with your legs hanging over the bed and monitoring your heart rate at 5min point (or less if its making you ill) and the 10 min point as it is possible in your case POTS heart rate increase could show up just from that. (Better still if another can take heart rate for you as POTS more easily diagnosed if you are keeping still). Compare the sitting rate with the laying rate.

Some severe POTS cases cant be upright without getting issues in any form at all (even sitting one can have severe issues with). When my POTS was severe (I didnt know I had POTS at that point... but found out when I was better some but my heart rate was reacting at twice the amount needed to get a POTS diagnoses)..
at one point I couldnt even stand still 5-10 seconds without being at risk of unconsciousness. I myself find it will give one dizziness and headspins (and at times I can go blind) during a POTS collapse.

http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome "The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt."

So anyway.. try a modified version of POTS test as it may still show POTS. Do not try to force your body to do something it cant do as it could be very dangerous heart wise.

 

[meadowlark]

POTS / lifting arms and hands

I have an ME/CFS diagnosis, but have not been diagnosed with POTS through a tilt test. Still, I believe I have it .... I can't stand or walk for more than three minutes without becoming lightheaded, dizzy, and almost fainting. Lifting my feet is like hauling cement blocks, and I feel like I need to gasp in order to breathe. Going outside alone is certainly not safe.

I've also found that my arms hang very heavy when I am standing .... my hands, like my feet, feel like they weigh a hundred pounds, my wrists ache, and lifting my arms twelve inches in the air (to, say, take a book from a shelf) exacerbates all the symptoms. It's as though my arms feel "faint." Has anyone else felt this in their arms along with other POTS symptoms?

Usually, the arms react after I've trudged around the apartment or stood for a few minutes to wash some dishes. For several days this week, though, I find that after waking (in other words, I've had no exercise for five hours or so, and haven't stood up for even a second), simply holding a book as I sit (tilted) in bed causes the arm symptoms listed above, followed by fatigue throughout my body and the need to gasp. During this, my body feels as though it is swollen up (in fact, there's no swelling) and I have the sensation of being hugely pumped up, like on overinflated balloon. The sensation is a bit as though I would "bang" like a balloon does and disappear if someone pricked me with a pin. I am forced to lie still, with my arms completely limp and my hands holding nothing, for five or six hours to recover.

Does this sort of feeling ring true for anyone? If so, does it sound POTS-related, or is it just completely off the wall?

(I have yet to read the links ... writing this post has exhausted my arms. I will read the links tomorrow .... thanks so much to those who posted them!)