Sticky Blood-Hughes Syndrome Support
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Autonomic Dysfunction?

Is there anyone coping with this ghastly condition. Could you tell me what medication

you are on, and if there has been any improvement. Thank you

36 Replies
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Can you say more about this because I am not clear to what you refer.

All autoimmune conditions have autonomic dysfunction.

With good wishes,

Ros

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I have oscillating blood pressure,dysfunctional digestive system,

weakness, fatigue, cognitive impairment. Pain in my muscles when

I go upstairs.Bloating, very little urine. I am on warfarin for 10 years

after two clots in the right eye. I have to keep the eye pressure

down, as it is a risk factor for another clot. But because the b.p. is

oscillating so is the eye pressure. very worried about a brain bleed.

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What you need is a diagnosis and your doctor will suggest who you might see: it may be more than one specialist.

Unless a doctor understands why there is a dysfunction, they cannot treat it.

If, for example, your blood pressure is very high and your blood tests and urinalysis is problematic, you may need to see a nephrologist. I do suggest that you drink more water because this flushes the kidneys and if you are producing little urine, it suggests you may need to drink more water, assuming there isn't a problem with the bladder/urethra. Dehydration can affect blood pressure.

I don't know what you mean by dysfunctional digestive system but there are many causes of a bloating sensation, again you need to be clinically examined.

I recommend seeing your GP and see what they recommend.

With good wishes,

Ros

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Thank you. I saw my GP this morning. My bp was down to 120/80 with no postural drop. She is sending me for an

echo \& 24 hour ECG. Then onto a Cardiologist. These test

of course wont be done for some time. I am increasing my

water intake. My GP suggested I try gluten free, and I know

there is some belief that gluten activates auto-immunity.I guess

its trial and error at the moment, but I do not feel well at all.

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I understand. If you felt well, you wouldn't put yourself through all of this!

There is no compelling scientific evidence regarding foods, but some people find certain foods problematic. If you feel better by gutting out gluten, then good!

Just make certain, you have a healthy diet. Don't be tempted to take any supplements or anything from health stores believing they cannot do any harm because they are "natural!" They can and do.

Try and have a happy Christmas!

With good wishes,

Ros

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Hi Zamalek,

8 months ago you told us that you had an INR between 3.0 - 4-0 as therapeutic range.

I think you said you had an Immunologist Dr who knew autoimmun illnesses. I wonder today if you should look for a Specialist of autoimmun illnesses (like a Rheumatologist or Hematologist) who have had patients like us with very thick blood as a speciallity (APS).

You said your INR-levels were often dropping and you did not have a Fragminshot to take when the INR was too low. Do you have that today?

I also wonder if you are Lupus Anticoagulant positive (one of the 3 antibodies they take to diagnose APS)? If you are not I wonder if you have thought of selftesting which is easier.

As I understand you have got APS and Sjögrens. The best treatment for APS is to thin our blood. Warfarin or LMW Heparin (Fragmin) when you are on that high INR-level of 3.0 - 4.0.

Best wishes from Kerstin in Stockholm

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Thank you Kerstin

My Consultant is on the APS Specialist List. He is unfortunately

unable to see me anymore, as he is taking a years work in the Middle

East. He said he would refer me to a Rheumotologist trained at

St.Thomas in London. My INR is quite steady at the moment, but

my symptoms are not. I need treatment for this autonomic dysfunction whch may be Hydroxychloroquine, this suppresses the

auto-immunity I believe. I feel quite unwell, but know it will take

a while to get tested etc.

Best wishes

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Hi, you shouldn't be struggling like this on your own.

If your specialist has taken a sabbatical you should still be able to see someone covering his clinic. Did he give you a name of who/where he was referring you to? Try contacting the hospital and ask these questions or go back and talk to your GP.

Your INR levels, blood pressure and lack of urine need to be addressed, as you say - before you get worse.

Be persistent xxx

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I agree with HollyHesky!

I know how important it is that the INR is high enough and to test often to be sure the INR keeps in that high range also.

If you get symptoms it probably means that your drugs need to be looked at. Do you have APS and Sjögrens? Be persistent!!!

Kerstin

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Yes. I have dysautonomia. My digestive system is a huge issue for me as I go into paralytic ileus with it. The thinking is the nerves are not getting proper signal with brain.

Clotting? Seizures? It’s a tangled ball of yarn.

I have early and mild POTS. Does this play in? I dont think so. I think that stays isolated to heart?

I take Pamine forte. ( methscopolomine bromide). It helps with ileus. I take it every mirnjbg and every evening. The bromide components is also one if my anti convulsants. ( sort of..)

I run a low bottom number blood pressure. ( in the 50’s.)

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Hello there. I am freezing cold a lot of the time, do not sweat at all, oscillating B.P.

palpitations(ectopic ) cognitive impairment, dreadful digestive problems, weakness

and fatigue, muscle pain. My INR is 3.5 at the moment, so spot as far as the Clinic is

concerned. How were you diagnosed with dysautonomia, was it the tilt table? I guess

you have APS?

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Yes, I have a rather severe case of APS. I take 17 mg of warfarin daily . I keep INR at 4.0 to 4.5 and bridge with Enoxaparin if I fall below 3.0

Yes- tilt table test was used to diagnose POTS- but dysautonomia was diagnosed. Prior due to digestive dysfunction.

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Hi Zamalek. Have you been tested for autonomic dysfunction? If yes, and it was diagnosed, did the doctor/s offer any advice? And are you familiar with the POTSUK website? (very helpful, whether you have POTS or another form of dysautonomia.

In my own case, in addition to APS, Lupus and other stuff, I have neurally mediated hypotension which, in addition to a blood pressure drop when standing, causes a host of other issues. The advice I was given, by a UK expert, was to drink plenty of water, raise the head of my bed, wear compression stockings if they help (which they do), and then treat symptoms as possible e.g. taking antispasmodics for gut issues as required; taking measures to help regulate my temperature; doing very judicious exercise within my limits (which for me means very modest activity and only for short periods). I also tried Fluoxetine, an SSRI, which I found very helpful but which my gut and bowel simply could not tolerate - so I had to stop. I have no ongoing support for the dysautonomia. The specialist I saw was on a one-off basis - I saw someone in England and live in Scotland and the health board would only pay for one visit. But I do find the POTSUK website useful and a source of support, as it may also be for you.

Good wishes.

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Which Anti spasmodic are you taking for gut dysfunction? I’m taking methscopolomine bromide. Helps brain and gut “ talk to each other.” Smooth muscle cells of gut .

I take 2.5 mg in the morning and 5.0 mg in the evening.

It’s an anticholgernic

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I take mebeverine and buscopan - which I now find to be of only limited use. I'll need to check whether the drug you mention is contained in either of them and get back to you.

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I take Mebeverine hydrochloride and also Hyoscine butylbromide (marketed here as Buscopan). I hadn't heard of Pamine Forte and I don't know if it is licensed for use in the UK but from a quick Google I see it comes under the category of anticholinergic drugs. Have you tried any others as well? It would be interesting to hear your experiences, views as to how they compare.

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Hi MrsMouseSJ, thank you for your reply. I will be tested next year, however long the appointment takes to come through. I don't have POTS, but oscillating

B.P. Very low in the morning, 200 ectopic heartbeats over 24 hrs, that was the

last ECG I had. I was told nothing to worry about, quite normal, the problem was

that I felt/heard them. I don't sweat at all, low urine output, weakness, fatigue,

the gut issues are bad and very changeable lik e everything else. I see you have APS, what is neutrally mediated hypotension?

Thanks again

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Neurally mediated hypotension, or NMH, is when the blood pressure falls significantly, and usually repeatedly, on standing up or when standing for any period of time. Basically the blood all rushes to my feet and ankles but my autonomic nervous system doesn't do what it should, as a 'normal' person's would, and pump the blood back up and round the body. When standing for any length of time (which can be 5 mins or less for me) my lower legs swell slightly and go bluey-purple and I start to become faint. Wearing compression stockings (grade II, thigh high - I use Duomed, which are self-supporting and which I can get on the NHS) really helps to counteract this, although it is by no means a cure. Along with the NMH I have various other symptoms of a malfunctioning autonomic nervous system, including lots of ectopics on some days. Like you, I can really feel them and it's horrible. I also don't sweat much, some days I don't pee much in the mornings, others I pee like a racehorse, very bad gut issues, brain fog, and appalling 'fatigue', etc, etc. Well, I would call it post exertional malaise, as it includes so much more than fatigue, and which is a termed used by many with M.E./Chronic Fatigue Syndrome, which I was originally diagnosed with. I also have an altered response to exercise. I used to be exceptionally fit and walked everywhere, swam several times a week, climbed hills, etc. Now, after 12 years of struggle, I can finally get in a pool again - but only to do 10 slow lengths with breaks in between. My walking ability is extremely limited.

Do visit the potsuk.org website if you haven't already done so. Even if you haven't yet been tested/diagnosed you can start putting in place recommended measures to help yourself. Do let us/me know you get on.

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I haven't been definitely diagnosed yet. I just wanted to find someone with some

experience of the condition. My tests wont take place till some time next year.

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I am in the same boat only not diagnosed with APS yet - but I do have Hypothyroidism and primary Sjögren’s. I too suffer from oscillating BP - not even discussed this with my doctors yet but it’s been very dramatic recently - usually just essential hypertension with the off dip but now daily syncope episodes.

I’m on Mycophenolate at maximum dose but no blood thinners yet because aspirin caused me such bad nose bleeds and GI problems. I have just seen the vascular doctor who shares my connective tissue disease clinic with a rheumatologist. He is on the APS list here. He didn’t mention APS but said he wanted all my autoantibody retesting. He said he believes my Sjögren’s is responsible for very widespread and advanced small fibre neuropathy and ganglionopathy - which is mainly associated with Sjögren’s. He tells me that this affects my motility too and has referred me to a gastroenterologist, whom I saw a few days ago. I’m to have a barium swallow in the new year but meanwhile he has recommended a medication available in Scotland called Constella. This was after reading a letter I copied for him from the UK Sjögren’s specialist, Dr Price in Swindon.

I take maximal amounts of liquid Senna and Laxido daily but what I’m increasingly finding is that I have vasovagal episodes when I need to go or after I’ve eaten or drunk a lot of water or sometimes when i smell food. This even leads to me passing out. Plus I find that I’m getting increasingly dizzy on standing - even slowly - and yet I have checked and I don’t have PoTS.

I know I’m going to have to speak to my GP about these increasingly frequent swings in my BP but have been putting it off because I dread the idea of compression tights as the small fibre neuropathy gets worse when compressed. This was what my neurologist recommended to me.

I think the biggest problem I have is that I’m under loads of specialists but all defer to my neurologist - who is very conservative in her approach and won’t do anything until my nerve conduction studies show positive for large nerve fibre involvement.

Also, a bit like yourself from sounds of it, everything is presumed due to Sjögren’s - rather than confirmed by skin biopsy or tilt table tests etc. And because I’m on Losartan for Hypertension and Raynaud’s I think they feel that this is all they can do as whenever a GP tests me I don’t have the hallmark readings of PoTS or orthostatic hypotension. I’m guessing I need one of those 24 hour monitors but I’m not over enthused!

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Hi Twitchytoes and thank you for your detailed reply.

I am on Warfarin because of two previous blood clots in my right eye. This week I had an increase in my blood pressure, which

caused the pressure in my eye to increase and a blood vessel burst. I had felt ghastly for a couple of days. The last 24 hr ECG

showed massive swings in B.P., and I was told that no treatment was advised as the lower b.p.

would drop too low!! I have had gastric issues

for 20 years or more, with 2 recent scans, which showed no abnormality in the vasculature in the bowel.I have to maintain an INR OF 3-4,which is high. I want to be able to manage my health, and would consider trying hydroxychloroquine again. I am sure I read something from the John Hopkins web site which says patients with this health problem, because of APS/Sjogrens improve with this drug.

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Well I’m a bit different to you as no APS diagnosis and only phlebitis and a couple of miscarriages to suggest that APS may be lurking - plus all the autonomic dysfunction which is just autoimmune/ Sjögren’s/ Hashimoto s thing I am told.

However, due to first being misdiagnosed with RA, I have tried most of the disease modifying antirheumatic drugs including Hydroxichloraquine and Methotrexate for a couple of years - and also Azathioprine and Sulfasalazine - and now Mycophenolate. I can’t honestly say whether or not HCQ helped me or not but it finally gave me anaphylaxis. However I’m highly allergic to many drugs so that’s just me.

I do know many with Lupus, Sjögren’s and RA who benefit from it a lot though so, as you have your this autoimmune combination it could help a lot and is the mildest, least toxic of the DMARDs. Doctors don’t even regard it as an immunesuppressantin the way that the others all are.

But for me my nervous system involvement is the major feature of Sjögren’s and none of these meds have stopped it progressing - including the extreme swings in BP - which scare me because both my parents died suddenly prematurely from this problem of oscillating BP and I already have some subclinical atherosclerosis.

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How do you know you have sub-clinical artherosclerosis?

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I had a carotid ultrasound following a stroke-like episode a few years ago. The scan operator told me this was subclinical atherosclerosis - typical of diabetes - which I don’t have. My mum died suddenly and prematurely of undiagnosed atherosclerosis - another reason I’m very mindful of possible APS as well as Sjögren’s - and make them test me for diabetes regularly too. X

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Hi Twitchytoes,

Have they done an Echocardiography with doppler on your lung/heart?

If you think of APS you should do that. As you also have a familyhistory of heart-issues.

I have pulmonell hypertension and 2 leaking heartvalves. A symptom of APS but important to find. Sometimes the Cardiolog can hear it when listening to your heart some "sounds" (do not find the right word).

Kerstin

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Thanks but I had a full cardio work up earlier this year and all they could find was ectopic beats and hypertension

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It is important to treat the hypertension as it can be a symptoms of APS. Was so for me. Was not until I was properly anticoagulated at a steady range that the bloodthinner-drugs worked. Did they do an Echocardiography with doppler?

Kerstin

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I believe you’re looking for the word...”murmur”?

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Yes, that is right but as I am not medical trained I am not sure it must lead to our illness only.

Thanks!

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It's 2 months since I last posted to you about my APS/Sjogrens problems. Since then I have had a 72 hr b.p. monitor & 24hr. ecg monitor. I am now being referred to another cardiologist and then possibly a neurologist. I have been very poorly this last week with

very very rapid heartbeats and exhaustion. However I came across this report on the internet. "The Dysautonomia Dispatch" by Jill R Schofield MD. It is very interesting. I know I have had the symptoms for years, I am triple positive for APS anyway but this

manifestation has got worse and has never been addressed. What I'm saying is that

I have deteriorated a lot over the last 5 years, My INR level is 3-4, but it has been consistently below 3.5 for the last 3-4 months or more, and I wonder whether this has made me worse. You should pursue your suspicions of APS.

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Hi Zamalek,

I just quickly reread your post (quite long) and I wish you had a new Specialist after the other went abroad. Important!

I also think you should have a steady and higher INR which is not allowed to drop down to 3.0 as that is probably quite too low for your symptoms. I understand that you are afraid for a bleed so you want to keep the INR down a bit but that could be bad. We do not bleed from APS but clot a lot.

Also keep your bloodpressure at a good level. That is also important. With all this said it means you need that Specialist we are nagging about.

You should try to selftest and follow your INR closely (are you Lupus Anticoagulant positive?) and keep an INR not under 3.5 and near 4.0.

I also wonder if you have now done that Echocardiography you should be sent to?

Best wishes from Kerstin

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Hello Kerstin

The problem is I have oscillating b.p. & heart rate, and they wont treat the high bloodpressure as it goes very low over the 24 hours. I am L.A. positive, triple antibodies in fact, like yourself, but yes the INR has mostly been below 3.5. My anti-coagulation clinic does not approve self-testing, but I know they have some patients who do there own thing. I have a coagu-check machine, and I tried to master the skill, but I failed. I would like to contact someone in my area who does this, so I could acquire the skill. I wonder whether Health Unlocked could put on the website my request for someone to train me. I live 5 miles from Reading in Berkshire in the U.K. Thank you.

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I private messaged you. Did you receive them?

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Sorry I haven't found it yet. I access Health Unlocked about 2x a day so

I wouldn't be able to immediately reply to you. Thank you in advance for your help, I am not used to private messaging.

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Sorry still haven't managed to access it yet.

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A number will appear by the chat spot next to my hub at the top of the page...tap/click on that and then tap on the bold headings of each person at a time who has PMd you...good luck

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