Where to now St Peter

[RazorFace]

Medication currently 2 x Sinemet 3 times a day but need Fludrocortisone twice a day to increase blood pressure. According to neurologist (Movement specialist) unable to increase Sinemet as it would lower blood pressure too much. So that's it? There doesn't seem to be any way forward! At last clinic was told by neurologist that she "wasn't sure that I was safe to drive" and needed to contact the DVLA. Haven't driven since last clinic but hey, that's a way to increase pressure, try using public transport. Stopping driving has really increased the stress levels and tremors.

[park_bear]

I take it your low blood pressure is causing lightheadedness and threat of fainting. Just how low is it?

Additional interventions are possible to increase your blood pressure. But before suggesting any such measures, you need to have a good blood pressure cuff, if you do not already have one. Measure your blood pressure both standing and lying down, in the morning when you arise and in the evening before bed. Ideally all measurements should be the same. If there is a pronounced drop in blood pressure upon standing this is a condition known as orthostatic hypotension, which needs to be intervened with very carefully.

[RazorFace in reply to park_bear]

Hiya' Yes that's it orthostatic hypotension, but never felt like passing out or had any"episodes" - drink water and don't get up quickly. As if that's going to happen. and wouldn't be doing it when driving! LOL

[park_bear in reply to RazorFace]

If you are asymptomatic then there is no need to do anything about it. However orthostatic hypotension is often accompanied by supine hypertension. You should be checking your blood pressure upon lying down in the evening to make sure you are not experiencing dangerously high supine blood pressure.

Fludrocortisone is a corticosteroid which can cause adverse effects if taken long-term. It increases blood pressure by increasing sodium retention. There are other ways to raise your sodium levels.

Finally I do not get why, if you are asymptomatic, a medical provider told you not to drive.

[RazorFace in reply to park_bear]

OK , thanks for your comments. I've been taking my blood pressure regularly, noting time of day I.e. I'd get up, breakfast, shower and put on surgical socks then take BP. It would vary and sometimes be low. The DVLA want three readings taken at a surgery and won't accept those taken at home. So after catching train home I walked half a mile to the surgery to have BP taken by qualified healthcare professional. The results were:

25/11/19 142/88

02/12/19 128/84

09/12/19 140/86

Not what I'd call low!

I guess anyone might perhaps query the accuracy of the bp machine at home. On which my condition has been diagnosed from. And the subsequent suggestion that I'd not be safe to drive.

[park_bear in reply to RazorFace]

Orthostatic hypotension / supine hypertension means that your blood pressure changes depending on your posture - it will be more or less normal in the sitting position, low when standing, and high when lying down. If you have this condition, the reason for measuring it at home is it will be at its maximum in the evening when lying down. You are not making this measurement for anybody else's satisfaction - you need to check this to see if you are suffering from dangerously high blood pressure under these conditions. When I had this condition my systolic blood pressure in the evening was over 200 lying down. I had to sleep reclining instead of lying flat until I recovered. So you should check on yours to see what your situation is.

You should also measure your blood pressure when standing first thing in the morning which is when it will be at his lowest point - if it is normal you may be able to use less fludrocortisone.

[Hikoi]

Hi Razorface,

In my country the neuros would be extremely cautious about starting fludrocortisone for many of the reasons Park Bear has given. I dont understand how they say you need it when your readings were slightly elevated and you dont have hypotensive symptoms. It is likely it will just add more problems. Orthostatic hypotension is a given in this disease. I think the majority of pwp have it.