(Japan): Worsening varicose veins, occipital neuralgia, arrhythmia (PVCs), bounding pulse & tremors

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TokyoPVCs
Regular Member


Date Joined May 2017
Total Posts : 39
   Posted 5/17/2017 1:16 AM (GMT -7)   
My apologies in advance for the long post - at very least writing this has helped me get my thoughts in order!

Hi guys. I've been hesitant to write this for a while - I'm still not sure if this is the correct sub-forum for this post! - but perhaps someone can help me join some dots on this. (Disclaimer: I live in Tokyo and all advice given me to me by doctors thus far has been in very simple, and *very* broken English.)

I am a 29 year old, slim and active British male (~172cm/58kg). 5 or so months ago I began to experience dizziness and extremely painful headaches which I sought a CT without contrast for ("normal"), and which were eventually (briefly) resolved with a 12 week course of massage and one final - very painful - acupuncture session. (My broken-English GP told me the headaches were simply "due to the dry, cold weather", however the acupuncture therapist said it was definitely occipital neuralgia and judging by the way she could turn the pain off and on using a needle or two I think I'd definitely side with her!)

The doctors also told me "James Bond is from England and he doesn't get dizzy", and "buy a watch and breathe in every 3 seconds"(!)

Fast-forward to about 6 weeks ago and huge, blue, bulging varicose veins in my legs have simply not stopped appearing, pulsing and burning (deeply) - they are getting more prominent and painful almost daily. (The left side are dark blue, tangled and concentrated on my inner calf, however the right side are long, hard, straight, a lighter blue and mostly on the back of my thigh.)

Other symptoms:

The left-sided headaches (and tender-to-the-touch back of scalp) are back. Daily. Over the past 6-8 weeks or so I have also begun to experience:


  • A very strong and random bounding pulse (particularly felt on the left side of my neck, chest and back of head)
  • Incredibly strong heart palpitations ("PVCs"?) that stop me in my tracks (picked up in a stress test - see below)
  • Pain in/across various veins in my body - particularly in a newly visible, dark blue vein just above my left hip (and - both - aforementioned legs)
  • Pain in my left arm (primarily in the largest vein in my bicep?)
  • Dizziness and feeling short of breath at almost all times when standing (eased somewhat whilst walking)
  • My breathing and movements have also begun to feel incredibly jittery. (Instead of one long, sweeping breath - imagine a gentle wave on a shore - my breathing feels like it's staggered and broken (almost like I'm shivering inside); likewise when I'm moving - I feel like my bodily FPS have been halved)
  • Bloating
  • Fasciculations (everywhere)
  • Occasional temporary deafness (left ear - a few seconds every now and then)
  • Dental pain (primarily left wisdom tooth extraction site)
  • Sudden coldness / (very) pale skin
  • Feinting (vasovagal syncope - see below)
  • Anxiety (perhaps obviously!)
  • Muscle pain in neck and back (nothing new but definitely worse, however perhaps just from tension)
  • In addition, I've also been experiencing intense "internal" tremors/twitching (often at the same time as the bounding heartbeat - particularly felt in/whilst sitting with my back against something or lying flat in my bed).
  • These tremors/twitches are visible - have been getting worse daily - and can be seen & felt by others (especially when sharing a bed or bench)
  • It may also be worth mentioning that when I stand after a long period of sitting, the veins in the palms of my hands (all veins - both large and small) become very visible and a very dark shade of blue, too.


I eat well, sleep well, walk often, took up swimming last week and take no pills / medication except for a daily multivitamin (and/or light painkillers when the head pain is unbearable).

Medical findings:

A recent D Dimer blood test - which I fainted several minutes after (I've had a problem with vasovagal syncope for as long as I can remember - most notably after being brought around from a general anesthetic / Wisdom Teeth extraction surgery last year), chest CT scan (without contrast), chest X-Ray, blood-test(s), ultrasound of my heart and ultrasound of my legs - again, incredibly painful as he tested for "milking" - have supposedly ruled out DVT, diabetes, significant heart failure and/or any embolisms, however I have been scheduled a follow-up appointment with a specialist (3 weeks later / in 7 days) for "clarification". (The valves in my legs are definitely "faulty and pool for 10+ seconds" - approximate translation.)

I also took a treadmill ECG which I "failed" (experiencing "a very strong PVC from my left ventricle in the recovery period") and recently wore a Holter monitor. (I will get the Holter monitor results at the same aforementioned follow-up / Q&A session in 7 days.)

TL;DR (thank you if you've made it this far!): I am experiencing daily occipital neuralgia (left-sided neck/headaches/ear popping), sudden, painful - and worsening - varicose veins on both legs, arrhythmia / PVCs (picked up on an ECG), dizziness / shortness of breath whilst standing, a bounding pulse and intense tremors/trembling particularly whilst lying flat.

Can anyone shine any light / join any dots on what might be happening here?! My father had DVT and died of a heart attack in his 40s and my grandmother (mother's side) died of a sudden brain aneurysm in her 30s so I'm sure genetics / anxiety are playing a part to an extent, but can any of these symptoms - sudden / worsening varicose veins / arrhythmia / occipital neuralgia / PVCs etc - be linked? Or should I be tackling these issues individually (or not at all)?

The doctors here in Japan seem to respond quite well to direct questions when pushed with Google Translate (I have to pay for everything, anyway), however if I ask no questions I simply get no answers. Could POTs / MS / Lyme / Fibro / anxiety / something else be an issue here? Should I request a tilt table test / MRI? Nothing at all?! Thank you all so much in advance for any suggestions on what to do/ask next (and my apologies again if this isn't exactly in the right sub-forum)!

--------------------------

Appendix (leg ultrasound summary Google Translated to English):

左小伏在静脈起始部に瘤状の拡張を認め、ミルキングで膝窩静脈から10秒以上の逆流を認めるこの際に本人大腿部にも痛みが生じると逆流認めない

"In the beginning of the small saphenous vein, a knoby extension was recognized and reflux from the popliteal vein was observed for more than 10 seconds at the milking. At this time, if a pain also occurs in the thigh of the person, reflux will not be recognized."

超音波所見(まとめ)、左小伏在静脈左小伏在静脈起始部に瘤状の拡張を認める→末梢を追うが逆流が目立たず不全穿通枝を疑う所見も認められません。左小伏在静脈起始部の瘤による症状なのかも知れません "明らかな不全穿通枝は認められません。

"Ultrasonic findings (summary), left small saphenous vein left small saphenous vein in the root of the veins to recognize dilatation of the root → follow the periphery but reflux is unobtrusive and no findings suspected of failure penetrating branches are noticed. It may be a symptom caused by an aneurysm of the left lower saphenous vein. Obvious incomplete penetrating branches are not allowed."

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 20098
   Posted 5/17/2017 1:29 AM (GMT -7)   
got a lot going on. have you been checked for peripheral artery disease? i am not a doctor, none of us are, we can't give medical advice....however my mum has artery probs in her legs and has PAD. keep strong all the best.

TokyoPVCs
Regular Member


Date Joined May 2017
Total Posts : 39
   Posted 5/17/2017 6:42 PM (GMT -7)   
Good morning theHTreturns. Thank you so much for your quick reply and kind support.

I just looked into the testing methods for peripheral artery disease and no, I don't believe I have been tested (perhaps except for the ultrasound and blood test but I can't read the Japanese results on my paperwork so I really can't be sure of exactly what they saw / were looking for).

Some of the tests your doctor may rely on to diagnose peripheral artery disease are:

  • Physical exam. Your doctor may find signs of PAD during a physical examination, such as a weak or absent pulse below a narrowed area of your artery, whooshing sounds (bruits) over your arteries that can be heard with a stethoscope, evidence of poor wound healing in the area where your blood flow is restricted, and decreased blood pressure in your affected limb.
  • Ankle-brachial index (ABI). This is a common test used to diagnose PAD. It compares the blood pressure in your ankle with the blood pressure in your arm. To get a blood pressure reading, your doctor uses a regular blood pressure cuff and a special ultrasound device to evaluate blood pressure and flow. You may walk on a treadmill and have readings taken before and immediately after exercising to capture the severity of the narrowed arteries during walking.
  • Ultrasound. Special ultrasound imaging techniques, such as Doppler ultrasound, can help your doctor evaluate blood flow through your blood vessels and identify blocked or narrowed arteries.
  • Angiography. By injecting a dye (contrast material) into your blood vessels, this test allows your doctor to view blood flow through your arteries as it happens. Your doctor is able to trace the flow of the contrast material using imaging techniques, such as X-ray imaging or procedures called magnetic resonance angiography (MRA) or computerized tomography angiography (CTA).
  • Catheter angiography is a more invasive procedure that involves guiding a catheter through an artery in your groin to the affected area and injecting the dye that way. Although invasive, this type of angiography allows for simultaneous diagnosis and treatment — finding the narrowed area of a blood vessel and then widening it with a dilating procedure or administering medication to improve blood flow.
  • Blood tests. A sample of your blood can be used to measure your cholesterol and triglycerides and to check for diabetes.


I will put it on the list for my next hospital visit (which may in fact be today - I don't think I can wait until the 26th as scheduled). Thank you again!

And yes, my initial post was originally supposed to be a very short, concise explanation of symptoms but the more I thought, the more I realised is/has been going on. In fact, just last night things reached their all time peak-intensity: a bounding heart rate (as "usual" - this was actually what woke me up), almost unbearable tremulousness (again, very similar to what I experienced after being brought around from a general anaesthetic - before feinting - last year), a very uncomfortable whooshing sound/feeling of flow in the back of my neck (including an occasional several second kicking feeling in the top of my neck / back of my head - especially present when my head was positioned straight or left), intense nausea (for the first time) and considerable fasciculations (again, everywhere).

I elevated my legs using pillows and found no relief however then used the same (4) pillows under my head and was eventually able to fall asleep. This has again got me looking into Postural Orthostatic Tachycardia Syndrome (POTS):

    Frequent symptoms
  • Palpitations, often on standing or sitting, sometimes can come on at rest (yes)
  • Fatigue sometimes can be disabling (yes)
  • Light-headedness / dizziness / blurred or tunnel vision / pre syncope (yes)
  • Inability or difficulty performing physical exercises (yes)
  • Tremulousness (yes!)
  • Weakness especially in the legs (yes!)
  • Syncope (yes!)
  • Loss of concentration / memory loss / brain fog (yes)
  • Chest wall pain (yes)
  • Shortness of breath (yes)
  • Gastrointestinal problems, lack of appetite, nausea, early satiation, bloating, constipation, diarrhoea, abdominal pain (often diagnosed with Irritable Bowel Syndrome) (yes)
  • [bHeadaches / migraines. Often patients complain of muscular headaches associated with upright posture which begin in the occipital region of the skull and radiate to the shoulders- the ‘coathanger headache’ (yes!)
  • Pain or coldness of legs, fingers/ ears (yes)
  • Difficulty sleeping. Patients can complain of difficulty getting to sleep, waking suddenly with a racing heart and feeling wide awake or sleeping for hours and still feeling unrefreshed when they wake. (yes)
  • Hyperhidrosis or loss of sweating (haven't noticed this one but I've never been a very sweaty person)
  • Papillary symptoms – sensitive to glare (or this one)
  • Myofascial (muscle) pain (yes!)
  • Neuropathic ("electric") type pain (yes!)
  • Sense of anxiety. Many patients who have PoTS are told that their symptoms are due to panic attacks. The anxiety and hyperventilation often happens as a result of the symptoms above and the uncertainty of diagnosis and feelings of fear related to the symptoms. It is also thought that PoTS and orthostatic intolerance can alter breathing regulation leading to deeper respirations and hyperventilation. (yes!)


I'm going to print this off now, go to the hospital and see if my Holter Monitor results have been analysed and then maybe consider going to another hospital and asking if they can do any testing (a tilt-table, for example) for POTs.

Thank you again for your reply and I hope this post may help others going through something similar! I'll be back (I hope).

TokyoPVCs
Regular Member


Date Joined May 2017
Total Posts : 39
   Posted 5/21/2017 9:41 PM (GMT -7)   
The plot thickens. I went back as mentioned and used Google Translate to ask the hospital receptionist for my Holter Monitor results early (despite my appointment not being for another several days). A little reluctantly the receptionist spoke the doctor and he called me in. I can only assume I was interrupting his lunch break as he said little more than:

"Some abnormal. Most normal. Next appointment cancelled. Please take care."

I asked what could be the cause of some of the "abnormal findings" and other symptoms (for example the ever-increasing tremulousness) an he simply said "I don't know. Not heart. Please take care."

At this point I asked for a print out of the results ("a lot of paper - are you sure?") and left with nothing more.

To be honest, I have absolutely no idea what I'm seeing on these print-outs (I do not have a medical background, nor can read the Japanese text) but a few things are clear:


  • My maximum heart rate (beats per minute) whilst wearing the monitor is/was 137 (recorded in the 30 minutes or so on the morning that I returned the monitor - I had to take 2 trains and do a fair bit of walking).
  • My average BPM over 24 hours is/was 73
  • My minimum BPM is/was 36 (recorded several times during my sleep).

Perhaps more notably so, these extreme lows whilst I slept had significant spikes on either side (every time):

  • 1am: spikes from 90 down to 40
  • 2am: spikes from 70 down to 50
  • 3am: spikes from 80 down to 50
  • 4am: spikes from 80 down to 36
  • 5am: spikes from 50 up to 90

(I'm not sure if I can/should post pictures here but I absolutely can if anyone is interested!)

I recall waking up feeling terrible - and aware that something strange may have been happening during the night - but I was never awake enough to press the event button.

I'm going to attempt to wait to speak to the vein specialist on the 26th before I seek advice from another cardiologist / hospital but in the meantime, has anyone ever seen or heard of anything similar before? As mentioned previously, my hands are often ice cold and purple(ish) when the veins flare up on my palms - some kind of hypoxia(?)

As a side-note: after a month or so+ of rapidly worsening issues I am still continuing to feel worse daily. A recent symptom addition is waking up in the night feeling completely frozen / numb on my right side (in particular my arm / wrist) despite lying completely flat on my back. The varicose veins in my legs are also becoming increasingly darker. The headaches haven't left once. Again, I have another appointment (that I've been waiting 3 weeks for on the 26th!) but thank you in advance to anyone who has any ideas before then.

PS. theHTreturns: the doctor wasn't chatty *enough (*at all) for me to ask any questions / about PAD or POTs. I will attempt to ask the next doctor on the 26th though. Thank you again for your suggestion and I'll hopefully be back with some good news (or at least some kind of diagnosis / solution) soon!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15719
   Posted 5/23/2017 7:21 AM (GMT -7)   
Tokyo, hopefully when you see the specialist you can get an answer as to what you have going on. We are not drs here & if we were the forum rules would prevent us from diagnosing someone. The members here only speak from their own experiences.

If your cardiologist is not one to explain things or answer your questions, then perhaps it is time to find one that will explain things to you. It is ok to look things up on the internet but please be careful doing this, it can muddy up the water too much.

Take care.

TokyoPVCs
Regular Member


Date Joined May 2017
Total Posts : 39
   Posted 6/13/2017 6:15 AM (GMT -7)   
Dear straydog, thank you so much for your reply.

In honesty I think my posts here primarily just help me to get my (severely brain-fogged) thoughts in order. Of course the advice from you amongst others is invaluable and I hope that certain keywords may help others who may find themselves suffering similarly, too. (Just to point out I am - very - actively pursuing these issues with specialists, also!)

Just as a brief update, I switched hospitals and took things back to the beginning: internal medicine.

I had an unremarkable endoscopy, however tested low in:

  • MDHC (31.2)
  • Morning Cortisol (5)
  • RDW (11.9)
  • BUN (7.9)


And high in:

  • Mono (9.2)
  • Alb (5.2)
  • A/G (2.48)
  • BNP CLIA (54.3)


My doctor said of particular note is the low cortisol. Some kind of adrenal fatigue / Addison's disease could/would explain everything (PVCs, varicose veins & all). Yesterday I took a 24 hour urine test - passing almost 4L of burning, golden urine despite only drinking 1.5L - and on Saturday I'm scheduled for a barium CT scan of the abdomen.

All previously mentioned symptoms have continued to worsen with the new additions of intermittent deafness in my left ear, slight discomfort when swallowing (perhaps as a result of the endoscopy without sedation), the aforementioned painful polyuria, and a golf-ball sized lump of skin-coloured "dilated vein blood" behind my left knee which appears when I'm standing and disappears on elevating my leg (given the all-clear after a midnight ultrasound at the E.R.).

I imagine the/my next requests will be an MRI of my head and neck (the whooshing / fluttering / pulsating sensations in my head and neck scare me the most) but I'll continue to keep my fingers crossed and do my best. To anyone else suffering (from anything): hang in there!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15719
   Posted 6/13/2017 10:02 AM (GMT -7)   
It very much sounds like you are on the right path to getting help. Yes low cortisol can cause all sorts of issues. Try to be patient & let the dr do what is necessary to get a proper diagnosis & get you well. Try not to stress over any potential causes of the cortisol issue that will only add to further stress.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

TokyoPVCs
Regular Member


Date Joined May 2017
Total Posts : 39
   Posted 6/25/2017 3:20 AM (GMT -7)   
Both physically and mentally, things have continued to become worse (too many symptoms to mention). Statistically, in short:

  • My 24 hour cortisol urine test came back normal (66.9) / within range (11.2~80.3).


My (hospital) doctor again told me it's just anxiety and dismissed me. I begged again for his help.

He ran one last blood test which again returned nothing "TOO out of the ordinary":


  • ALB (high)
  • A/G (high)
  • Seg (high)

  • BUN (low)
  • r-GTP (low)
  • RDW (low)
  • ESR 1 (low)
  • BASO (low)
  • EOSINO (low)
  • Ly (low)


He referred me to an ENT about the deafness who also found nothing significant. "Air could just be getting in to your ears due to the 15kg weightloss." The CT of my abdomen (with contrast) also found nothing.

I went elsewhere (again):

  • Tested negative for HIV, HTLV, Syphillis and a stool test for OVA / parasites at a clinic HOWEVER, LOW in IgG at a hospital. This - amongst other symptoms - has concerned my newest doctor who has made me two more appointments: one with a urologist tomorrow and another with an infectious disease specialist on Tuesday.

I know how ridiculous this all sounds despite all of the negative testing but I am not just crazy. Two days ago I quit my (dream) job because of this. I am DESPERATE for answers on what's happening to me.

Going forwards - again it's just my own wild speculation as always - I've been reading a lot about Lyme disease and the symptoms sound *identical*. I'll mention it at both of my forthcoming appointments and see what the doctors think. In the meantime, I think I'll begin posting in the Lyme forum as this is no longer just Cardiovascular:


  • http://www.healingwell.com/community/default.aspx?f=30&m=1606610

I hope this information helps anyone else who may unfortunately find themselves suffering from something similar.

Thank you again to those of you who have been reading this and/or replying. Good luck to us all.
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