Erractic Blood Pressure: I am recently... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,354 members10,542 posts

Erractic Blood Pressure

kbmis003 profile image
5 Replies

I am recently diagnosed with APS.  In the last few years by blood pressure has been erractic.  The diastolic has been very high at times and other times normal and sometimes low.  It jumps around.  I am curious to know if this could be caused by APS.  Does anyone else reading this experience this with their blood pressure?

Written by
kbmis003 profile image
kbmis003
To view profiles and participate in discussions please or .
5 Replies
Lure2 profile image
Lure2

I wonder if you were diagnosed by symptoms or by antiboydies? Is it a Expert on this disease who is treating you and I also wonder if you are on any anticoagualtiondrug (bloodthinner) as we have too thick blood.

I had very high bloodpressure which is a symtom of APS very often. In my case it was as it was normal after anticoagulation with Warfarin at a stable level but I am still on the same bloodpressure/heart drugs as before Warfarin. I have now Pulmonary Hypertention.

Hope you have got a real good APS-Specialist! Otherwise look for one!

Best wishes from Kerstin in Stockholm

Zamalek profile image
Zamalek

Hi there. I have these symptoms daily. Also I can feel the rapid heart beat at times.

Finally a 24 hour ECG was carried out, and I have been told that it fluctuates up and down throughout the day, with many ectopic heart beats, but told this is fine.After

about 2 hours after waking, by blood pressure drops and my headaches begin for the

next couple of hours. Personally I believe it is the autonomic nervous system, which 

can be affected with APS. I also have Sjogrens, not just the sicca symptoms, but lung

disease etc. The headaches block out memory and compromise my cognitive function,

I personally think this correlates with the low blood pressure. What a game eh! I would

ask to see a cardiologist, and get yourself checked out, i.e. echo gram & ECG.

kbmis003 profile image
kbmis003 in reply to Zamalek

I did see my cardiologist and he did not have a clue about APS.  He said, maybe you should see a Hemotologist.  He said in cardiology we don't deal with autoimmune diseases.  It was a useless appt.

kbmis003 profile image
kbmis003 in reply to kbmis003

The three rheumatologists I have seen over the past year do not know much about APS.  One completely missed the diagnosis, the other told me that all I can do is take aspirin, eventually I will have a major blood clot and see you in 6 months.  The 3rd rheumatologist said to stop taking aspirin because it would not do any good and see you in 6 months.  All three came up with a different autoimmune disease for explaining my arthritic and nerve pain even though I did not test positive for either test and never related the pain to APS. 

kbmis003 profile image
kbmis003

I have learned a lot from all of you and the Hughes Foundation.  Mary gave me a contact APS/Action that led to a possible appointment with a rheumatologist who may know a little more than most, four hours from me.  I am on a wait list. I have been having a lot of bad days the last two weeks.  My left side head to leg was in pain for four days.  I couldn't sleep laying my head down because the pain would be worse.  I slept sitting up for four nights in a row.  Dizzy and brain fog during the day. 

You may also like...

High Blood Pressure Now

was very nice! I got the migraine the day I had cyst removed from my eye! He said that eyes r very...

Does warfarin have an effect on blood pressure

my blood pressure reading being lower than it has regularly been recently and know that low blood...

APS AND HIGH BLOOD PRESSURE

safety valve with blood pressure and because I have warfarin, and now this high blood pressure then...

Does anyone know a blood pressure medication that you can take when you have Hughes?

I read that some blood pressure medications can make the Hughes syndrome worse. I was recently on a

Raised intra cranial pressure

My latest bout has been a similar virus and hideous head ache (not as bad as last time) waking me...