Do I have POTS - (vid/pics) - where do I go from here? (very long post)

[Apple]

Hello!

There is so much (amazing!) information on this forum, but I really struggle to take it all in. The more that I read, the more confused I get!

Brief history: Diagnosed with CFS/ME at 15. I'm now 23. I spend the majority of my day lying in bed, or on the sofa. Though I am able to walk around (to the bathroom, or to get a snack) - I am not able to live independently (cook a meal, do housework, dry my hair, work etc). I can leave the house occasionally for an hour or two, but It takes me a week or so to recover.

Back to the POTS.

I always feel much better lying down. I've noticed for years that when I stand up my legs and feet will either go very blotchy, or if warm - will go bright red:

http://i54.photobucket.com/albums/g110/suze1989/red_zps77e82dc1.jpg

I bought a pulse oximeter as I wanted to see what happened to my oxygen sat + pulse when I slept, as I always wake up feeling like death.
I haven't done that yet, but I have discovered that my pulse rises dramatically when I stand up.

I took some videos. Take a look if you like:

Video one shows my pulse jump from 78 to 145 before settling at 112 - that's an increase of 67 beats!
http://s54.beta.photobucket.com/user/suze1989/media/1_zps05ef2da6.mp4.html


Video two (a bit long - sorry) shows my pulse go from 88 to 136 (increase of 49) before dropping to low 100's and then goes back up to 120 something and then repeats itself a couple of times.
http://s54.beta.photobucket.com/user/suze1989/media/2_zps1281028c.mp4.html

--

Possibly related history:
-When I was 15, one doctor heard a murmur that seems to have disappeared.
-I have had a chest Xray (2006) and an ECG (2011) - both of which were normal. (ECG showed tachycardia but I was very nervous)
-For a few years I used to get random palpitations (fluttering/thumping/racing) many times lasting 5 hours plus, when I was laying in bed, often starting when I'd roll over or something.. Oddly, it used to go back into normal rhythm when I walked around only to return when I would lay back down. These stopped and I just put it down to anxiety + a severe vitamin D deficiency. I didn't see a doctor at that time as I was suffering from Agoraphobia. I did not feel anxious at home.
-My anxiety has improved tremendously. Not really a major issue anymore. But it is, of course, permanently cemented onto my medical records...

-

Questions:

1) Is POTS a symptom of M.E or is it a separate illness that often occurs in people with M.E?

2) How do I approach my GP about this? He is of the sort that puts every symptom of mine in the M.E/CFS box. Severe joint pain? Normal! Near-fainting episodes? Normal! Ugh, i'm sure you know the type.
I live in the UK, so can't just book to see a Cardiologist without a referral.

3)Is my GP likely to take that video seriously? Or it is 'normal' for people like us?
Will I come across a hypochondriac? :-(

Sorry for the very long post. Congratulations and thanks if you got this far. I'd really value your opinions on what to do next. I'm so confused!

 

[Valentijn]

It sounds like you have POTS. POTS is a syndrome, which is technically not the same thing as a disease. Basically just a cluster of symptoms and signs that go together. So it could be either a part of ME or a common comorbid illness. I don't think many ME/CFS patients had severe POTS or other orthostatic problems before getting sick, but maybe intermittent problems indicating a susceptibility or underlying problem that ME/CFS has fully exposed.

I think you should talk to your doctor about POTS, because it is treatable. If your GP dismisses all ME symptoms, try suggesting that since POTS has many of the same symptoms as CFS, maybe you have been misdiagnosed. Even if they buy into psychosomatic theories about CFS, they should be able to take potential misdiagnosis seriously.

The other thing I would suggest is being persistent in seeking treatment for your POTS and other symptoms. GPs really do not want to deal with a bunch of symptoms they don't understand, so might be more enthusiastic about referrals if they know that ignoring you won't make you go away.

POTS is easy for a doctor to test even in a very short visit, so your GP will probably want to test it personally. Unless your POTS is not consistent, a video probably won't help. And if the GP thinks you're a psychosomatic mess, he/she might shut you down due to believing you focus on your symptoms too much.

I'd treat it just like a "regular" person going in for a doctor visit. "I noticed this happening when I feel this way, and I'm not sure why it's happening. Do you think it might be POTS? I've heard that it's frequently misdiagnosed as CFS, and it's supposed to be pretty treatable usually." It might be important to let the doctor know that you're looking for his/her expertise - so asking what he/she thinks instead of trying to prove it's what you think it is. I would NOT mention any other symptoms, especially palpitations. Those are often taken as further proof of psychosomatization, and too many symptoms at once will probably overwhelm your GP.

 

[Apple]

Hi Valentijn. thanks for your reply. My GP doesn't dismiss ME symptoms. Quite the opposite, he seems to be unwilling to look past the CFS/ME diagnosis (and he is unfortunately already convinced that what I have is at least partly psychosomatic - going off my past (he saw me at my worst mentally). He suggests anti-depressants every time I see him. :/

I think I may find another GP and take your advice about mentioning this and nothing else. I do often go with a bit of a list as I don't go very often.

Do you think I should even mention the word pots? Or just simply talk about what happens?

It's quite exciting to think that at least some part of my health may be treatable.

 

[Sasha]

Hi Apple - try asking your GP for a referral to Prof Julia Newton at the Newcastle ME/CFS NHS Centre. She specialises in orthostatic intolerance (of which POTS is a subtype) and has been funded by ME Research UK and now has snagged £1.4 million from the MRC, I think, for more research on this.

Here's a thread I started on this a while back:

http://forums.phoenixrising.me/inde...uk-drs-spickett-newton-any-experiences.12066/

If you put 'Newton' as the search term in the search box at the top of this page and tick 'titles only' you'll find several threads on her work.

 

[Apple]

Hi Sasha, Newcastle is unfortunately too far for me at the moment (7 hours on a train!!), but i'll definitely look into Prof Newton. Thanks

 

[Sasha]

Hi Sasha, Newcastle is unfortunately too far for me at the moment (7 hours on a train!!), but i'll definitely look into Prof Newton. Thanks

Sorry to hear that, Apple - but it might be worth asking your GP to get Prof Newton's opinion on your symptoms - particularly on your pulse rate changes on standing - to see if she can give you a provisional diagnosis, connect you with a local specialist and/or help guide your GP in his treatment of your condition.

 

[ahimsa]

Apple,

Here are some more links to add to the good information that Valentijn already posted:

• Johns Hopkins patient handout on Orthostatic Intolerance: http://www.cfids.org/webinar/cfsinfo2010.pdf

• Video presentation by Dr. Peter Rowe from Johns Hopkins:

• Slides to go with the video presentation above: http://www.cfids.org/webinar/slides-090110.pdf

This is just more info for you to read so you can learn more about the different types of Orthostatic Intolerance (NMH or POTS), figure out whether your symptoms match, what types of treatment exist, etc. I hope these links help!

As for what information to present to your doctor, it's always hard to figure that out. So much depends on the doctor's attitude. But I think I agree that showing your doctor a video of your heart rate may not be of much use. It's probably better to simply talk about your symptoms and then ask the doctor whether it might be some type of OI.

I hope you can find a doctor who can help you with this problem.

 

[MishMash]

Apple,

If you have been tested for just about *everything*, as is the case with most CFS patients, you might be curious about some theories POTS that are outside the box, but hold up better under scrutiny. This is not to say you don't have some novel virus or parasite. But it might be helpful to consider other ideas.

Please consider for a minute that POTS, and all the symptoms we now consider CFS, might just be symptoms of too much pressure in the brain. This phenomenon is known as "idiopathic intracranial hypertension" (IIH). Rightly skeptical readers might think that IIH is too rare, or such a disorder would definitely be causing obvious symptoms.

However, this is not true. According to research, about one in ten people (at least) have IIH. In one study of *asymptomatic* patients, between 15% and 17% people walking the streets have IIH -- in this case, showing up as "Empty Sella Syndrome." ESS is where too-high brain fluid pressure squashes the pituitary so that it appears flat on an MRI ( http://www.ncbi.nlm.nih.gov/pubmed/1857785 ).

BTW The former owner of this website, Cort Johnson, wrote a feature article about his own ESS condition, and how it might be correlated with his CFS illness. ( http://phoenixrising.me/archives/2127 ) Several long-time members of PR wrote they had been diagnosed with ESS also.

Also, please remember, CFS occurs more commonly in people with hyper-mobile joints, weak stretchy tissues, or other forms of tissue weakness, commonly called Ehler-Danlos Syndrome (EDS). Dr. Rowe was the first to show this, and associated it with POTS/OI.

Additionally, recent research by Dr. Newton (shown on "cortjohnson.com"), shows that CFS patients tend to have low blood perfusion to the brain. The occurence of low cerebral blood flow is fairly well established; and not just in CFS, but other neurologicall conditions. This low-flow situation certainly contributes to our POTS, and possible other CFS symptoms.

The reason for *why* the blood starts flowing more slowly to the brain is currently unknown. But-- there are several interesting theories.

According to the "Monro-Kelli Hypothesis" the percentage of brain components (blood, brain fluid, brain matter) are all permanently set. Meaning, if one day you suddenly had too much brain fluid, the brain would automatically shut down the flow of blood to the brain to keep the ratio steady. It will not accept any changes in the amount of these substances inside your skull. The volume inside your cranium is forever static. It is an accepted rule of neuroscience.

The Monro-Kellie hypothesis
The pressure-volume relationship between ICP, volume of CSF, blood, and brain tissue, and cerebral perfusion pressure (CPP) is known as the Monro-Kellie doctrine or the Monro-Kellie hypothesis.[3][4][5]
The Monro-Kellie hypothesis states that the cranial compartment is incompressible, and the volume inside the cranium is a fixed volume. The cranium and its constituents (blood, CSF, and brain tissue) create a state of volume equilibrium, such that any increase in volume of one of the cranial constituents must be compensated by a decrease in volume of another.[5]
The principal buffers for increased volumes include CSF and, to a lesser extent, blood volume. These buffers respond to increases in volume of the remaining intracranial constituents. For example, an increase in lesion volume (e.g. epidural hematoma) will be compensated by the downward displacement of CSF and venous blood.[5] These compensatory mechanisms are able to maintain a normal ICP for any change in volume less than approximately 100–120 mL.[citation needed]

So if you have weak brain ducts and venus structures, due to EDS (or weak, floppy tissues) you are probably going to get some level of IIH. The fluid is going to back up, get stuck up inside your cranium.

Your body will react to this over-production of brain fluid by slowing the blood supply to the brain, as dictated by the Monro-Kelli Hypothesis. At this point, we can speculate that your IIH is contributing to your POTS/ OI/ NMH plus headaches, and possibly many other HPA problems associated with CFS. Many people with IIH exhibit hypothyroidism, and other brain stem issues as well.

So if you accept this logic, then you might wonder "this is interesting, but what can I do about it?" The answer is try using a common diuretic named Diamox. Taking Diamox will shrink the amount of brain fluid you have, and within five days, your body will have replaced brain fluid with cerebral blood flow (the 'five-day rule" was discovered by NASA from studying returning astronauts who showed brain fluid excess, because of zero-gravity space flight.).

The best part of taking Diamox is that a) it is dirt cheap, and easy to get and b) and the initial benefits should show up within five to seven days. So you will find out soon if something is going on. Additionally, Diamox is not a narcotic, so docs are usually amenable to prescribing it.

Anyway, good luck.[/quote][/quote]

 

[taniaaust1]

Do you think I should even mention the word pots? Or just simply talk about what happens?

]

Yes definately not just mention your symptoms but also do mention that they match POTS. Doctors are not up with things and one has to be very lucky to have one who has heard of POTS. If you just talk about what happens.. the doctor is unlikely at all to know or understand what is going on. Take some info on POTS in with you from a good source and tell your doctor this is what is happening with you and that you need to be refered to someone who specialises in this.. as its often treatable.

POTS can occur alone without ME/CFS and be mistaken for ME/CFS due to having many of the same symptoms. The group which POTS alone more commonly occurs in is teen girls (many of these go on and recover thou some dont)..

 

[ahimsa]

...
So if you have weak brain ducts and venus structures, due to EDS (or weak, floppy tissues) you are probably going to get some level of IIH. The fluid is going to back up, get stuck up inside your cranium.

Your body will react to this over-production of brain fluid by slowing the blood supply to the brain, as dictated by the Monro-Kelli Hypothesis. At this point, we can speculate that your IIH is contributing to your POTS/ OI/ NMH plus headaches, and possibly many other HPA problems associated with CFS. Many people with IIH exhibit hypothyroidism, and other brain stem issues as well.

MishMash, that's an interesting theory. As always, a lot of the details went over my head but I appreciate your posting it. I'll definitely be re-reading it and trying to understand it.

However, this next part confused me:

So if you accept this logic, then you might wonder "this is interesting, but what can I do about it?" The answer is try using a common diuretic named Diamox. Taking Diamox will shrink the amount of brain fluid you have, and within five days, your body will have replaced brain fluid with cerebral blood flow (the 'five-day rule" was discovered by NASA from studying returning astronauts who showed brain fluid excess, because of zero-gravity space flight.).

I remember reading that diuretics are not good for folks with any type of low blood pressure problem. Perhaps folks with POTS would be okay with this drug. But I think folks who have Neurally Mediated Hypotension should make sure it won't cause problems.

I've never taken these drugs myself but I do have a friend who was on a diuretic for some reason (don't remember why) quite a few years ago. She fainted a couple of times and this drug turned out to be one factor. This fainting happened about a year before she was diagnosed with NMH via a tilt table test. Her doctor said diuretics are not good for anyone who has problems with low blood pressure.

Are you taking Diamox yourself? If so, what have the results been for you? It would be great if this did work for someone out there.

 

[MishMash]

ahimsa,
I put up a post with a simillar explanation. Sorry it is so complicated. Such is the human brain:
http://forums.phoenixrising.me/inde...rome-stretchy-veins.20351/page-20#post-328942

Taking the diuretic Diamox will reduce the symptoms of POTS in individuals with IIH and low cerebral blood perfusion. This is a fact. I'm not sure about your friend's condition. The EDS support group people are all over this. They are beyond the experimentation stage.

But one thing must be remembered: it take 5 days for the human body to replace too much brain fluid with the correct amount of cerebral blood. As I write in my above thread, this magic number was discovered by NASA when examining returning astronauts, whose blood volume had shrank due to zero gravity, and had been replaced with brain fluid. It took 5 days for their cerebral blood flow to go back to normal.

So there is going to be an important transition in your cranium during that time. Set aside 5 days in bed. And it is really sort of a trial and error process. If you wake with a massive headache then you probably took to big of a dose. Just start small and work your way up. For the "headache" wake ups, have a gallon of salty, electrolyte fluids next to your bed, just in case. In a few hours, you should feel some relief. But when you hit it just right, you will not only feel the POTS dissipate, but other CFS symptoms abate too. Good luck.

 

[MishMash]

ahimsa
No, I'm currently scheduled to see a doc, in an attempt to get a prescription. I have only read the results of the posters on the "Ehlers-Danlos" website, many of whom swear by this treatment. It is quite a popular treatment for POTS on the EDS forums. I have posted another version of this argument at the following thread, in case my original was too long:
http://forums.phoenixrising.me/inde...rome-stretchy-veins.20351/page-20#post-328942

I don't know about your friend's fainting condition. It is important to remember though: NASA researchers found that the golden rule is that it take 5 days for the body to transition from too-much brain fluid and not-enough cerebral blood back to homeostasis. This is documented science. They learned this from returning astronauts who, after living in zero gravity, lost much of the cerebral blood flow. They had too much brain fluid. It always took 5 days to return to normal.

Anybody trying this should have a five days to lie in bed. So maybe your friend was taking some diuretic off and on, or perhaps she was taking a different type of diuretic that didn't just work on the brain. I don't know. There is a reason why successful patients only use Diamox. It seems to be drug specific.

One thing I've been told to look out for: is that your correct dosage is trial and error. If you wake with a massive headache after your first dose, you probably took too much. Keep a jug of salty, electrolyte water on your night stand, and the brain fluids will be replenished quickly, hastening the headache. Start low. Work your way up. Hope it works for you and me.

 

[Sallysblooms]

I have never heard a diuretic could help with POTS. It is usually a big no no.

People with POTS usually have a problem getting enough bood to stay in the brain since we have pooling.

Finding a good integrative MD is more helpful. Most doctors know little or nothing about POTS/Dysautonomia.

POTS/Dysautonomia can happen from SOOOO many reasons. People of all ages get it. I am on several sites and there is no age to have it, though the young girls used to get more attention for it. Men have it also.

There are tilt table and other tests for it. They are not always perfect since everyone is different every day.

 

[Shell]

Apple. Take a look at POTS UK and STARS. You need to register for Stars but I think it's free. They have a list of specialists. Professor Gammage is at the QE in Brum.
Unfortunately if you are NHS you won't get a referral outside of your area (I know I've tried and been refused, even with a supportive GP) so you need someone near by. If you can beg, steal or borrow I would recommend going privately as you can see someone properly.
I'm under the Professor but he is so booked up I'm waiting months and months between appointments (saw him after a long wait in Oct and now have to wait until May. He hadn't even seen my 24 hr ECG when I phoned to chase it up five weeks after the event. It's not an easy road this one).
POTS comes in a lot of different flavours.

btw I too have heart murmer which isn't always "there". I know from overhearing the staff that the reason they couldn't find it when I had an ultrasound was that I was (to use their words) "loaded with fluid". It can hide a murmer.
I also get the lovely leg rash.

Good luck

 

[ahimsa]

Taking the diuretic Diamox will reduce the symptoms of POTS in individuals with IIH and low cerebral blood perfusion. This is a fact. I'm not sure about your friend's condition. The EDS support group people are all over this. They are beyond the experimentation stage.

It sounds like this Diamox treatment is meant for patients who have POTS, right? Do you know which kind of POTS diagnosis these patients have? (hyperandrogenic vs. neuropathic? I think those are different types of POTS, and there could be more that I don't remember...) Does it only work for POTS patients who have EDS as the source of their POTS (blood pooling due to the "stretchy" veins) or for any type of POTS?

At any rate, it's really wonderful to hear that some patients with POTS are getting good results from Diamox! Any successful treatment is fabulous news - thanks!

But I think that the abnormalities in the autonomic system are different for NMH than they are for POTS (although people can also have both NMH and POTS). So, that makes me wonder whether Diamox would also help people with NMH.

My primary diagnosis, and also the diagnosis of the friend that I mentioned, is NMH. This stands for Neurally Mediated Hypotension, also known as Neurocardiogenic Syncope and several other names. After many years of this illness I might also have POTS on top of the NMH. But the huge drop in blood pressure after standing for a little bit (or even long periods of sitting upright) seems to be the biggest problem for me.

Here's a chart from http://emedicine.medscape.com/article/902155-overview#aw2aab6b6
that shows results from tilt table testing. The top row is blood pressure, second row is heart rate. The first a normal response. The next three are different examples of abnormal results:

As you can see the abnormal response depends on what is wrong with the autonomic system. FYI, the second one, labelled Vasovagal, is the one that looks close to my own results. You can see that the BP drops to almost nothing.

There are different categories/names for orthostatic intolerance depending on which doctor you consult but I think (not 100% sure) that they agree that NMH and POTS are different. I have seen Venn diagrams with overlapping circles, so they can be co-morbid, but I think they have different causes.

 

[ahimsa]

For Apple and anyone else looking for general information, I came across this link from the National Dysautonomia Research Foundation (I've seen it before but forgot about it):

NDRF Handbook for Patients with Dysautonomias

It has a bunch of free PDF files - about 300 pages in all. It looks like this was published in 2002 so there may be some new data since then. But it seems to be a good, basic reference document for anyone who's new to POTS and/or NMH.

Table of Contents:

Foreword
Introduction
Section A - Dysautonomias

The "Automatic" Nervous System​

Dysautonomias​

Tests for Dysautonomias​

Treatments for Dysautonomias​

Section B - Living with Dysautonomias

Living with Dysautonomias​

Caregiving​

Support Groups​

Social Security and Disability​

Children and Dysautonomia​

Glossary

 

[MishMash]

It sounds like this Diamox treatment is meant for patients who have POTS, right? Do you know which kind of POTS diagnosis these patients have? (hyperandrogenic vs. neuropathic? I think those are different types of POTS, and there could be more that I don't remember...) Does it only work for POTS patients who have EDS as the source of their POTS (blood pooling due to the "stretchy" veins) or for any type of POTS?.

Ahimsa,

I am not at all sure what type of POTS/OI/NMH they were referring to. The EDS forum posters just said they had trouble standing, fainting, headaches, sensitivity to light, sound, multiple sensitivies. And the issues resolved after starting Diamox.

One woman said her daughter was in bed for many years, with the room blackened due to light issues, weakness, dysautonomia, and only recovered when she started using Diamox. The daughter is back to normal. According to the EDS people, eating salt, Florinef are the exact opposite of what you need. Your brain needs less fluid; not more.

EDS comes in many shapes and sizes. Sometimes people can have very powerful muscles, but have weak connective tissues in critical areas. So it is impossible to completely diagnose "EDS" in one form of the other. So you could have a similar situation. It's very difficult to say with certainty who has EDS.

BTW The EDS docs also say that if you have had MRI results that show "mild brain atrophy" that is actually a bunch of nonsense. The "brain shrinkage" they claim they are seeing is actually just the brain fluid squishing the brain to a smaller size. Out of habit, the radiologist might want to tell you it's just "age related atrophy" or some baloney. Ask your doc about this; it could be an importnat indicator. Also, ask if you have any evidence of Empty Sella Syndrom on your MRI. That is rock solid evidence you have too much pressure in your cranium.

Anyway, Ahimsa, the drug Diamox is harmless, especially if you go on two-week trial. Take a small dose at night, and if your symptoms start to abate you will know. And the drug is very cheap and non-narcotic. Easy to get. Good luck.

 

[ahimsa]

Anyway, Ahimsa, the drug Diamox is harmless, especially if you go on two-week trial. Take a small dose at night, and if your symptoms start to abate you will know. And the drug is very cheap and non-narcotic. Easy to get. Good luck.

Thanks for all the information, MishMash!

I know you're trying to help me but it's too early for me to jump on the bandwagon and volunteer to be a guinea pig. I still have way too many questions about the mechanism behind this treatment. I also want to make sure that this drug won't cause a huge drop in my blood pressure which would be a disaster for someone with NMH. Dropping blood pressure is a well documented side effect of diuretics.

But I'm looking forward to hearing about your results if you end up trying this drug. Sending you HUGS and the best of luck for a good result.

By the way, have you had a tilt table test to document the specific kind of OI problems you have? If so, what were the results?

 

[MishMash]

Thanks for all the information, MishMash!

I know you're trying to help me but it's too early for me to jump on the bandwagon and volunteer to be a guinea pig. I still have way too many questions about the mechanism behind this treatment. I also want to make sure that this drug won't cause a huge drop in my blood pressure which would be a disaster for someone with NMH. Dropping blood pressure is a well documented side effect of diuretics.

But I'm looking forward to hearing about your results if you end up trying this drug. Sending you HUGS and the best of luck for a good result.

By the way, have you had a tilt table test to document the specific kind of OI problems you have? If so, what were the results?

ahimsa
Yes, I traveled to Dr. Rowe's office and had it done back in 1998, I believe. I didn't really take the whole idea of OI or POTS seriously, quite frankly, and thought it was much ado about nothing. I was absolutely fine for the first several minutes of the test.

Suddenly my heart beat shot way up and my brain went into an absolute nightmare panic. It was like being on the verge of being eaten by a shark, or being in an aircraft seconds from hitting the ground, or something like that. It was a total fear reaction. Afterwards I thought "Okay, I get it now. I believe you, Dr. Rowe."

I fully understand you don't want to be a guinea pig. I'll volunteer for that. But I think this whole field of ME/CFS/OI/POTS etc is really over-due for a brand new perspective. We've been running in place for decades now. And I think we are going to find it has more to do with genetic predispositions than viruses or parasites living in our bodies. I'll let you know how my brain dynamic thesis works out. I won't keep it a secret, I promise.

 

[Apple]

Thanks to everyone for replying. I really appreciate it. I don't have the energy to properly read through your replies at the moment, but I'll try and do so over the next few days