Does This Sound Like Dysautonomia?

[LisaAndJethro]

Hi,

I'm Lisa, 30 yrs old, from the UK and I've been ill for at least 3 and a half years with no diagnosis. I just wondered if anyone could relate to my symptoms. Maybe they don't sound anything like dysautonomia/POTS but I am at the stage of giving anything a try!

My primary symptom is a persistent feeling of sleepiness, where I would fall asleep at work back when I worked full time and would nap repeatedly at weekends. The only time I didn't feel sleepy was after about 7pm. I frequently feel a strong, inescapable urge to lie down, which I have sometimes had to do at inopportune times like on the floor when decorating an empty house! At these times I will usually sleep but it's such an intense feeling of weakness it feels more like i'm losing consciousness. By contrast at night I find it difficult to sleep, even if i've forced myself to stay awake all day.

Then there's the lightheadedness/shaky feeling that i get when I try and do any kind of exertion, ie housework, gardening or going for a short walk. I have to sit or lie down to recover. I find that this is worse in the morning or afternoon, and I can be more productive in the evening (But not much).

For the past 11 months I've had problems falling asleep, where as soon as I drop off my heart appears to 'stop' and jolts me awake. This sometimes happens multiple times before I can sleep. I thought this might be sleep apnea but this has been tested for and ruled out.

I also get frequent headaches (mostly in the morning), and diarrhea probably a couple of times a week. I always get up to pee at least once in the night.

Just to complicate things further I'm trying to taper off Venlafaxine/Effexor as I want to have a baby and that has caused me to have heart problems even though I'm making very tiny reductions. I reduced by 1mg last month and had a pounding heart that kept me awake and a winded feeling in my chest for 3 weeks. I also had several episodes of shaking uncontrollably. I've had a 24hr ECG done but by this point symptoms had subsided somewhat so I'm not hopeful that anything will show up.

Anyway I have had blood tests that have ruled out: diabetes, thyroid problems, vitamin deficiencies, anemia. Chronic fatigue syndrome and sleep apnoea have also been ruled out. I recently had a synacthen test which I'm still waiting on results for but dr thinks it's highly unlikely to be that (and I think I would've heard by now if anything showed up on the test). I do have coeliac disease but have been gluten free for over two years and antibody levels are now normal.

Thanks for reading

[plaster89]

There a few tests that could show potential dysautonomia. You can do them in your home.

1) Stand up for 3-5 minutes motionless with your hands down and then raise one of your hands up high for about 20-30 seconds. Compare the colour of the hands. If there is a significant difference that can suggest dysautonomia.

2) Lay down and check your blood pressure and heart rate after a few mins then do the same immediately after standing up and a few mins after. If your heart rate raises significantly (30+ bpm or close to this) and your BP remains stable that can suggest dysautonomia. Significant drop in BP is also not right.

3) Check your pupils whether they are dilated in normal lighting.

[angelloz]

I know everyone's hand that is held up will be paler than the other. I would try the heart rate test or see if you doctor would order a tilt table test. The qsart also tests for autonomic problems but don't know if that is available to you. Hang in there. So often we have to keep pushing for an answer.

[plaster89]

I know everyone's hand that is held up will be paler than the other.

Acrocyanosis as it is known is not a normal physiologic reaction to standing. Every doctor to who I have been said it is a sign of autonomic dysfunction. It may not mean dysautonomia sometimes but it is not a physiologic reaction to standing.

[Katybug]

This does sound like it could be some form of dysautonomia. If you haven't already, you might also look into daytime hypersomnia, narcolepsy, and cataplexy without narcolepsy. These could be separate diagnoses or found co-morbidly with a form of dysautonomia.

[LisaAndJethro]

Hi, thanks for your replies.

I will have to try and do the 'poor man's tilt table test' thing again. I did try it and my heart rate went up but then I had to go to the toilet and after that I felt too ill to continue.

It's interesting the comment about pupil dilation, my pupils always seem to be pretty dilated. A colleague once asked if I was on drugs! I am on an antidepressant which I've read can cause pupil dilation (according to wikipedia anyway) so I always just put it down to that but I'm only on less than 8mg of that now.

I will also look into the conditions you mentioned Katybug. I have to do so much medical research for myself as drs don't know what it is that I'm expecting my honorary medical degree in the post soon

[SarahA33]

HI Lisa, welcome to DINET.

Here is a past forum topic that you might find helpful: http://forums.dinet.org/index.php?/topic/26993-stand-up-test-without-tilt-table/
It's an article about the comparison's of a standing tilt table test -vs- Standing Hemodynamics.

Clinical symptoms that you have mentioned are really important also, lightheadedness, weakness, fatigue, GI symptoms, and headaches, also the skipped beats (which can sometimes be palpatations)I'm really sorry that you are going through all of this. I know that many members are from the UK on the forum and have mentioned hospitals, centers, and such. There is search option at the top of the page, perhaps you could try searching a few topics.

On another note, I agree with Katie that you should possibly look into narcolepsy and relations. Take care, Sarah

[Sylvie33]

Hi Lisa,

Katybug's observations seem like a good starting point. lI wish to add two comments to the mix:

1. You can have dysautonomia without POTS, and

2. My antidepressant cocktail led to serotonin syndrome and and my subsequent abrupt withdrawal (I was in hypertensive crisis) apparently triggered what I now know are small fiber sensory and autonomic neuropathies (positive skin biopsies).

I was taking a very high dose of venlaflexin... with a high dose of Paxil and a beta-blocker....

AND I had lots of neurological symptoms (tremors, loss of balance, etc.)from these meds before I went into crisis. They reversed when I went off the drugs.

I don't think you are at all in the same situation, however...

I and my new shrink (who is also a neurologist) think venlaflexin is a particularly nasty and neurologically "dirty" AD...make sure you taper off of it very, very slowly and you may feel much better....although you may still have a sleep disorder.

I have also read of an antidepressant only available in Europe ---Stablon--a serotonin inhibitor-- that is apparently as effective as the best SS and SNRIs and has virtually no side effects (extremely short half life. Has to be taken 3x/day --so very easy to discontinue). Still probably not to be used during pregnancy, but you have better options than Effexor.

I hope this is helpful, Lisa

Sylvie

[LisaAndJethro]

Hi Sylvie,

Sorry to hear that you had serotonin syndrome and subsequent problems, that sounds awful. I agree that venlafaxine is an awful drug and I hold it responsible for a lot of my problems. I have tapered down now to less than 8mg a day (from 225mg) and I just want to be off it but it just causes such agony of not sleeping and heart problems every time I reduce. Luckily I was put on the drug for OCD and that is no longer a problem so I don't need to be on any other medication for it. Fingers crossed next year I'll be free of it.

Lisa

[Sylvie33]

Dear Lisa,

How wise you are, and what good research you have done to wind up on this site! I am now shocked about how willingly I ingested a ridiculously complex cocktail. I (obviously) had far too much faith in my psychiatrist. Yet when I had severe neurological side effects for about 18 months, neither she nor a neurologist questioned the drugs. Much discussion about and testing for a brain tumor (I collapsed a day after I got my clean MRI's back!).

Even now, the prominent dysautonomia specialist I saw last month attributed my current, completely disabling symptoms to the abrupt withdrawal only. I'm not convinced. Lots of doctors very invested in prescribing powerful drugs whose workings remain obscure, and they don't want to dis them. You were on a high dose too!

It may well be that everything except perhaps your excessive sleepiness may disappear. As you stated, the tapering process, even if gradual and well-supervised, can cause disturbing withdrawal symptoms.....hopefully this is the heart of your symptoms.

Best of luck to you!

Sylvie