Low Blood Pressure and MSA

[Redjune1]

My husband has MSA and he really struggles with constantly feeling dizzy and lightheaded. His consultant told him that dizziness is always associated with low blood pressure and has referred him to cardiology. Can anyone tell me how they treat this please?

[Yanno]

Hello June, from what you said I suspect that you don’t regularly take your husband’s blood pressure. I think this is a good place to start as you will start to learn under what circumstances he suffers low blood pressure and maybe the things he can do to avoid those situations.

There are some drugs available which can help but in our experience there’s no silver bullet to cure it. Of course the first things to try aren’t drug related - keeping legs up when possible; drinking more fluid; compression socks or tights; using an abdominal binder; taking regular salty snacks etc.

There’s a very good facts sheet on the MSA Trust web site and it’s well worth chatting it through with your MSA Trust specialist nurse.

Good luck,

Take care, Ian

[Redjune1 in reply to Yanno]

We do have a blood pressure monitor but he also has atrial fibrillation which means that you don’t get an accurate reading, so that’s why we don’t check it regularly.

[Redjune1 in reply to Redjune1]

You mentioned our MSA trust nurse. We don’t have one, nor, so far, do we have a Parkinson’s nurse. Can you tell me how we go about getting an MSA trust nurse please?

[Yanno in reply to Redjune1]

Hello again, if you go to the MSA Trust website your find information about various support provided by the MSAT. You will find information about the specialist nurses who who will provide telephone support for people in the UK (and email support for people outside). These nurses have vast experience of MSA and the issues one may be tackling and Jackie and I have found their help to be invaluable.

One further point, it’s well worth trying to attend a MSAT support group meeting which are held up and down the country. Speaking about our own group in the South Midlands, we still meet online and have about 15 to 20 people attending each month. We get huge support from our MSAT specialist nurse who is present and also from mutually supporting each other.

Ian

[Redjune1 in reply to Yanno]

Thank you Ian

[SDSDYew in reply to Yanno]

This is so very helpful. Thank you. I am a newbie to MSA and have just joined the MSA trust today. My mum was diagnosed a few months ago. Best wishes to you

[bluenose100]

My wife had msaShe used to pass out for about

1 minute

When I stood her up due to low

Blood pressure doctor gave. Her tablets

But did not help

I always gave her salt when she

Pass out msa is such a horrible disease

[binnyrox]

Hi Redjune1

I have bp problems as well, it has plummeted as low as 69/41

However, I found this article very helpful and since have managed to titrate my medications and applied the non pharma remedies.

ncbi.nlm.nih.gov/pmc/articl...

Table 4 summarizes it in a nutshell

The authors are well regarded physicians

Getting it all to work for me required me to have a Blood Pressure Diary with numerous entries at consistent timings and after a couple of weeks, it became apparent what worked well and the dosage of medications that was most suitable

Hope it helps

Best regards

[Redjune1 in reply to binnyrox]

Thank you I will read it through again, it’s certainly not something I’ve read about before.

[Tiggycat1]

Hi Redjune1

I was recently falling more than 10 times a day and got stuck in the bath for an hour and a half during this phase, thankfully no serious damage. GP visited me at home and immediately called an ambulance despite my not wanting to go into hospital, as I live alone and have no carers it was probably a good call, but feel a bit left in the wilderness now.

My blood pressure fluctuates wildly, during a this stay in hospital standing BP went down to 65/49 standing from 117/70 lying down when taken over a period of three weeks in hospital . Neurology team was not concerned started me on midodrine and was discharged to a care home the following day where they have no clue about MSA

I now take my BP myself and it averages 124/75 lying and 100/68 standing so I think the midodrine helps, I personally think that I’ll stop measuring it as the fluctuations are tremendous throughout the day. I judge how my BP is doing just by how I feel!

Also would highly recommend speaking to the MSA trust, they have vast experience and are always helpful.

I wish you all the best

Tiggycat1

[Redjune1 in reply to Tiggycat1]

Thank you Tiggycat. This dizziness caused by low blood pressure is pretty much stopping my husband from doing anything at the moment. His walking is so limited because of it. We have just been for a walk and he really struggled. I hope there’s a chance that they will put him on Mididrine.