bombsh3ll

Please do keep us updated! Carcinoid is one of the things I have not yet excluded so I am also very interested in the connection. I plan to keep searching until I have exhausted every possible known cause myself, but am prioritizing tests by availability, probability of being "it" and cost. I cannot get the 24 hour urine test as I would have to travel to London and stay in a hotel overnight, but I can get a Chromogranin A&B blood test close to home. 

I don't seem to have flushing episodes & don't have diarrhoea though.

Best of luck with your tests.

B xxx

9 hours ago, KiminOrlando said:

Yes. NASA is paying people to be bedridden so they can study this. The Russians also had a big problem with this when they had extended space travel. I'm not sure I remember correctly, but I thought the cosmonaut died after returning to earth. It wasn't just a simple readjustment to gravity. 

I always said no amount of money would persuade me to go into space, but now I think I might be better suited to life on a space station where there everyone floats around with no gravity. I wouldn't be able to come back though, and the amount a POTS person pees might be an issue in a spacesuit

B xxx

I think continuing to seek an underlying cause is important for everyone, regardless of your demographic. I will never give up looking. Although the UK is pretty backward in terms of dysautonomia research, exciting studies are going on around the world looking at autoimmunity etc. I expect there will be new advances in years to come. 

I am currently being investigated for a CSF leak and craniocervical instability, both of which can cause POTS and are potentially treatable. 

Unfortunately as with most illnesses, from what I know, women tend to be investigated less & diagnosed later than men due to subconscious gender bias & incorrect attribution of physical symptoms to anxiety/depression. A previously healthy woman suddenly becoming unable to live a normal life, work etc can all too often be regarded as being less important than a male the same age suddenly becoming incapacitated. I am aware of this from my previous medical career, and have also now lived it as a patient. 

This may in part contribute to the higher rates of underlying diagnoses identified in males - simply because they are looked for. 

B xxx

Megan, I know this is really hard right now, but it is good that you have a doctor who is willing to dig, & I actually do hope they find something that can be treated for you. 

If it is any comfort, I as a doctor would choose carcinoid above POTS-with-no-known-cause-or-treatment hands down. There are people living well for decades with carcinoid, & it tends to be very amenable to treatment even if it cannot be fully eradicated. 

I wish you the best of luck with your tests, & I hope you do have some ativan or similar on hand, there is no shame in it when going through this. 

B xxx

15 minutes ago, JimL said:

Todd Levine, who is a neurologist that specializes in POTS

I didn't know there was another Dr Levine interested in POTS! I would really like to hear how you get on with him and what he has to offer.

Sorry I am laughing at the image of low hanging fruit - it is the only kind I'd be able to pick, or even the rotten ones that had already fallen.  I would love one day to be able to get to the good stuff at the top of the tree again 😊

B xxx

10 hours ago, JimL said:

Which Dr Levine?

Dr Benjamin Levine who coined the "grinch syndrome" theory. 

The thing with astronauts is they do have a POTS like presentation when they first return from space, but they spontaneously recover, they are not stuck with it like people who get it on earth and were not gravitationally deconditioned, at least not to begin with. 

If someone can recover orthostatically after 27 years of bedrest, this would imply deconditioning is not a cause of permanent orthostatic disability. 

B xxx

I don't know which country this is in yet, but it was on the news this morning that a woman who has been in a coma since 1991 has just regained consciousness. 

Assuming she has no motor/intellectual disability, it should soon be evident whether being immobile on your back for 27 years causes POTS. 

I will be following her story. I wonder if Dr Levine will too. 

B xxx

20 hours ago, DatDudue55 said:

(started off doing about 30 min 3x/ week) and now I am up to at least 6x/ week doing 1 hour workouts.

I think the fact that your symptoms & functional capacity have improved over time, plus your young age are very encouraging in terms of prognosis. For those of us who are severe & chronic, the course is usually static or progressively worsens without remission (unless we find a new medication that helps for a time). 

I would definitely say keep exercising as much as you are able! I was very active prior to POTS & even since then have exercised nearly every day on a recumbent bike. Even if it doesn't make you better, it is good for your heart, lungs, circulation, muscle mass, sleep & mood & can help prevent complications like blood clots. 

B xxx

I used to love the sun before POTS but have also been very intolerant to heat since. Luckily I live in Scotland where it isn't usually too bad. My little spray bottles of water that I keep in the fridge, cold pack for my head & fan are lifesavers. Funnily enough my hands and feet remain freezing cold, so on the hottest day so far I had my feet inside my electric foot warmer at the same time as dousing my face with water!

For me I believe hypovolaemia is the culprit as we need an adequate blood volume in order to thermoregulate - hence uprights increase their blood volume naturally in the first few days when they travel to a hot climate, & athletes also seek to derive extra benefits from training in heat. 

B xxx

29 minutes ago, MeganMN said:

@Pistol thanks for the info!  That is very helpful.  Wish there was something I could do, I feel stupid...Hard to be Critical Care Nurse and not be able to think or talk.....Nothing so far seems to be helping- meds, salt, water, etc.....It is discouraging.  Regardless of where things go with the Endocrine/Carcinoid workup, it is obvious that the POTS diagnosis sticks....and stinks....!!

That's so true! I do think that chronic cerebral hypoperfusion cannot do any good. Reduced blood flow to the brain has been implicated in the development of dementia, but no such studies have included or focused on dysautonomia patients, so I think that for us it is still very much an unknown. Given the condition was only formally classified in 1993 I think it will probably take longer before this becomes known, that is indeed if anyone is actually conducting any long term follow up of POTS patients. 

It may be that because we lie down at night, our brains have a sufficient period of adequate blood flow to refuel, nourish and detoxify, therefore negating some of the effects of daytime hypoxia. 

B xxx

Bumping - not got many results... any other florinef takers?

Hi Megan,

Yep same here! Sounds like the very familiar symptoms of cerebral hypoperfusion. 

Have you had a brain scan though just to make sure everything is structurally sound?

B xxx

It is also not uncommon for people to be told tilt table tests are "normal"when they are not. If the person interpreting it is not aware of POTS, they may just see that there is no drop in BP and no deviation from sinus rhythm, and report the test as normal, despite an abnormally high (but regular) heart rate and/or rise in BP/narrowing of pulse pressure/grey, sweating, trembling patient reporting severe presyncope.

This happened to me on my first tilt test - I could see my HR and BP were sky high whilst they were being recorded, but then the cardiologist wrote back saying it was normal. I have heard of the same thing happening to others many times over. 

B xxx

I tried it and it was nothing more than a very expensive laxative. Please do not waste your money.

B xxx

My understanding is that if you have symptoms but do not meet the exact criteria for POTS, OH or NCS then it is classed orthostatic intolerance (OI), which simply describes symptoms when upright and does not reference any measurements. All of us have OI as part of our presentation otherwise we wouldn't be having all these things measured. 

I think it is how you feel though that matters more than a label, and if you are having significant symptoms that are interfering with your function and quality of life, they are deserving of treatment regardless of the official diagnosis. 

A lot of the treatment for orthostatic issues tends to be similar in any case, and a lot of it is trial and error. 

B xxx

3 hours ago, aelizabeth3300 said:

I actually had what my doctor called an Autonomic Nervous System test, and it somehow tested all of my autonomic nervous system responses in one test. I was on a finger heart monitor, a blood pressure cuff, and had my bare feet resting on some other device that I couldn't recognize (and didn't ask). They monitored me resting, standing, valsalva, holding my breath, etc.

Most of that was done to me at UCLH, apart from the bare feet thing and the valsalva, which they would have done but my POTS was triggered abruptly by a forceful valsalva so I didn't do that part. I would love to know what info came from your feet! Strange such a high tech lab didn't do your catecholamines though.

What medication do you find helpful?

B xxx

18 hours ago, outofadream said:

I know usually they tell you to lie down if you feel faint,

I've come to despise that particular nugget - like when do I get the chance to be upright then?! Having said that if you are going down anyway, it is definitely better to get yourself down safely if you can. 

I wish there was a better solution. Have you tried elevating your legs above heart level, like on a couple of pillows? Also something I do pretty constantly is spray my face with cool water from a little bottle. It is so simple & inexpensive & really does help me feel just a little less presyncopal when sitting. There is published evidence that facial cooling increases cerebral blood flow. 

B xxx

11 hours ago, Pistol said:

I am not sure if I follow - doesn't "making the numbers look better" mean your vital signs are improving? When my numbers went from hypertensive to normotensive it was what we wanted to happen - the numbers went from too high to normal-ish. Is there something I m missing?  

Hi, what I mean is I am primarily looking for symptomatic improvement ie to not be presyncopal all the time, & to be able to be upright and function, & whilst I'm pleased that my blood pressure is no longer in the range that puts me at risk of stroke etc, having better looking numbers doesn't necessarily translate to feeling any better for me. I believe the underlying problem for me is low blood volume, causing low stroke volume, cardiac output & cerebral blood flow. These cannot be measured by BP or heart rate. 

Blood pressure is the product of cardiac output and vascular resistance, so you could have two people with the same BP who have vastly different cardiac outputs - one is high output with low vascular resistance, the other has low cardiac output and is very peripherally constricted (like me). Lowering the peripheral resistance in the second case doesn't improve the cardiac output if they are volume deplete.

Did you feel better when your BP was lowered? That indicates a different underlying pathology if so - just shows how different we all are!

B xxx

On 4/18/2019 at 4:27 PM, jayut said:

Now I am completely perplexed. Doc appears to be on the fence and is not sure if this a true or false positive. A part of me wonders if he is nervous, because of my aseptic meningitis complication. Can anyone provide some advice or thoughts? What should I fight for?

Have you tried plasmapheresis? It gets rid of autoantibodies without the risks of IVIG. It tends to be short lived but could give you a helpful pointer re further immune treatment. 

B x

3 hours ago, p8d said:

@bombsh3llevery time my Dr or I do orthostatic vitals we catch the drop and overshoot on “regular” monitors.  It’s interesting that yours is so quick.  We are all so different!  I only had one positive on the Celltrend which seems different from lots of other people.  I am amazed that you have no gastropressor reaction!  I am lucky in that I can generally, if not overstimulated, control my BP with meds coreg and guanfacine (shoutout to @Pistolfor this combination) and fluids.  For now it’s working ok but come summer...  I hope that you have a good appointment next week at UCLH.  Please let us know.

I will do! My blood pressure is normal now I am no longer on licorice root, and BP lowering meds have never helped me even when it was high (apart from making the numbers look better) so taking those isn't an option for me. 

B xxx

4 hours ago, Lily said:

My doctor did not do any tests for blood volume.  I complained about how I feel worse after lying down with my feet up compared to right before, and it takes a half hour or so before I feel better.  He said that it sounded like low blood volume and prescribed Florinef.

Well I always feel my best late at night and then like death again in the morning, I believe it is due to overnight volume loss so definitely a similar thing here. I do have the head of my bed raised but haven't found it helpful. Has the florinef helped?

21 hours ago, p8d said:

on tilt my BP dropped at first then went up for a few minutes then went down slowly, it it still does this. 

Mine too, although the drop is too brief to capture on a standard BP monitor, it was only seen on the continuous finapres monitor in the first 7 seconds then it overshoots. I believe mine to be the sympathetic nervous system on overdrive trying to compensate for low blood volume. I am looking forward to getting my catecholamine levels, assuming they are accurate. 

21 hours ago, p8d said:

I have a crazy gastropressor response.

I have none! I've tried the famous water bolus thing even though my BP isn't low & concluded it was bunkum, so it is interesting to see someone who actually demonstrates this response!

I also want to do the Celltrend test. I just don't think anyone in the UK would treat a positive result. Also, from what I can gather, pretty much everyone who does it tests positive for something on it which makes me wonder about the clinical validity, although granted these are all dysautonomia patients not healthy people randomly sending off their blood.

If anyone has sent their blood to Celltrend and had a completely NORMAL result, I would really like to hear too. 

B xxx

22 hours ago, Lily said:

But he also says I have symptoms consistent with low blood volume, and he suspects I might have EDS.  I think that my situation is similar to what Bombshell said: hPOTS caused by my body trying to deal with low blood volume and veins that are too stretchy. 

Lily, what symptoms/tests did your doctor base the low blood volume theory on? Did you have it measured? I truly believe this is a major issue for me. 

Regarding the EDS, I don't really feel stretchy veins could be the culprit in my case as my onset was so sudden, triggered by a forceful valsalva. I think more CSF leak or previously asymptomatic craniocervical instability tipped into becoming symptomatic due to the sudden increase in intracranial pressure. Compression of the lower brain structures could then lead to volume homeostasis disturbance. 

I mean, I've had the same veins all my life, three term pregnancies, no varicose veins, so why would they suddenly all become too stretchy after I tried to blow up a water balloon by accident aged 34?

That's not to say others with EDS may not have an issue with stretchy veins, but surely that would develop insidiously over time?

B xxx 

Octreotide has shown benefit for POTS/OI in a number of studies with no mention of VIP, so it might be worth looking into for you given that you do have elevated VIP. Do you have a decent specialist to discuss this with? Also whilst I am not advocating dishonesty, as a doctor myself (although no longer able to work), if a patient reports diarrhoea, you kind of have to believe them IYKWIM. Although that could open up another whole can of worms, colonoscopy etc.

B xxx

19 hours ago, Trying said:

Our daughter is taking .1mg of fludrocortisone in the morning and .1mg (half) of the .2 tablet desmopressin at night.

Thanks, it is really helpful to hear from someone with experience of the combination. I am guessing she has to have frequent electrolyte monitoring on the two?

I also value the uninterrupted sleep desmo gives me when I take it, but I am sorry it is not helping with her main symptoms. 

My only problem is being unable to stand without severe presyncope though so different symptom pictures. I wish all of us could find something that helped. 

B xxx