Reaching Out

[Eliza-Jane]

For the last 4 years I have walked out 6kms 3-4 times per week with a large group of friends. This year I walked twice in about August due to bushfire smoke, a chest infection that wouldn't go away and Covid. I also attended an exercise class once per week up until 2 months ago. I have increased my 50mg Madopar slowly from 3-6 times per day. Lately I have been taking one through the night maybe every second night. The extra Madopar has dropped my blood pressure to a very low level. Yesterday morning I blacked out totally landing awkwardly. I hurt both my hands. I am always tired. Has anyone reached a low point like this and worked their way back to good health? I'm too tired in the mornings to walk, plus I am scared of falling due to dizziness from low BP. I need some inspiration, some feel good stories to know that I can claw my way back.

[MBAnderson]

You absolutely, positively can claw your way back. More exercise and (consult with your doctor about) less Madopar. Few of us exercise as much as we know we should.

[park_bear]

You are suffering from a condition called orthostatic hypotension ("OH"). This means loss of blood pressure upon standing. This results from impairment of the postural blood pressure regulation system. This system normally automatically adjusts your cardiovascular system to maintain constant blood pressure whether sitting, standing or lying down. There are ways to mitigate this problem and thereby improve your condition. The very first step is to obtain a blood pressure cuff and measure blood pressure standing versus lying down, first thing in the morning and last thing in the evening. The reason why you need to take these measurements before treating this condition is that OH is frequently accompanied by supine hypertension ("SH") - high blood pressure upon reclining in the evening. You must take care not to aggravate the SH.

Meanwhile, be careful standing up, particularly in the morning.

Causes:

Orthostatic hypotension can be caused by Parkinson's itself or by dopamine agonists. Levodopa has also been blamed, but this recent study found no association between levodopa and orthostatic hypotension:

journals.viamedica.pl/neuro...

In your case this problem has been correlated with your usage of levodopa medication, but that also correlates with the status of your Parkinson's. Consider high-dose thiamine if you are not already taking it.

[simonasays in reply to park_bear]

This is great at info id also like to add if you feel lightheaded try to go back to your starting position as quick as you cam. Do not start walking and go to a seated position as soon as you can.

[MBAnderson]

park_bear knows from whence he speaks

[johntPM]

I think MBAndersen and park_bear are right. I'd just like to add: on the trail avoid getting dehydrated - drink lots of water and eat some salty food; also when you come to a stop having walked for a long time, warm down for a few seconds.

[simonasays in reply to johntPM]

Yes water keeps blood volume up and makes it more difficult to experience OH

[jeeves19]

My main form of exercise is a stationery bicycle. Why not get one of these? That way if you are overcome in any way by the OH then at least you’ll be within the safety of your home.

[Eliza-Jane in reply to jeeves19]

I have started looking for a secondhand one. I am a bit worried about leaving the house alone. Give me some time and I will give you a race. 😀

[Eliza-Jane]

Thank you everyone for your comments, advice and wisdom. I am taking it all on board. This is a wonderful forum, not only do I get to learn from those who have studied or experienced more than me, I get your friendship and know that I am not alone. Wouldn't want to deal with this thing without you lot.

[AaronS in reply to Eliza-Jane]

I was killing it just 4 months ago, I was 102 kgs in the gym everyday, no supplements, no dyskinesias, sleeping thru every night, and doing the best I have been since DX, 2 months later I was smashed by pneumonia, never had it b4 and no nothing to do with that BS Covid19. I got to my worst after this with a dyskinesia episode where I ended up on the ground in an offstate of meds, it took 20 mins to get up. It was bad.

I said to hell with that and never again, so for the last month I'm getting back, sleeping thru again, training everyday, I'm even started back on the surfboard again, if I fall now I can basically get up on my own again much much stronger and quicker. I dropped to about 94kgs but will bulk back to around 100 again.

Exercise is so vital to us, not shit expensive useless supplements, well exercise and determination, in our scenario you can't have one without the other

And just for those that say why the extra size, I'm healthy at that size , I'm toned and muscular and living where I want, I was 115kgs when first DX

My words of wisdom to anyone with PD: just get up, stop being a sook and feeling sorry for yourself, you will definitely deteriorate, no one but you can fix you up... So get moving anyway you can and build up from there

[Eliza-Jane in reply to AaronS]

Aaron, your low spot is where I am now. I HAVE to get moving. My hat goes off to you dealing with littlies. I am a sook.

[AaronS in reply to Eliza-Jane]

My heart goes out to you, as I do understand. But you can come back, your body will now have a muscle memory and it won't take as long. Remember PD is a brain disease that manifests in the body, not the other way around.You just have to work with your current feelings and slowly build up. It will come back.

As for my Little humans I have a wonderful wife who helps and they are my inspiration for fighting PD.

What part of Australia are you situated? I'm on the Goldy 😃

[Eliza-Jane in reply to AaronS]

Thank you. I'm on the NSW South coast. It was 38 today, and that's with a sea breeze.

[JohnPepper]

My thoughts are with you Eliza-Jane.

I don't want to raise your hopes, but I would be very pleased if, what I say, helps you!

I am not a doctor but a Pd patient.

I firmly believe that taking too much medication can sometimes be a disaster. If it were me I would reduce it back to where it did not give me trouble and find another way of overcoming the problem that caused you to take the extra medication.

When you were regularly walking, were your symptoms a lot better than they are now?

If I were you, I would start the walking again, (Force Yourself to do it). Are those obstacles still present?

Kindest regards

[Eliza-Jane in reply to JohnPepper]

Thanks John I have read your book and you have been an inspiration for me for years. I will try and get back there. I feel like a slow tortoise.

[JohnPepper in reply to Eliza-Jane]

Hi Eliza Jane. During the Covid lock-down and medical problems during the previous six months, I have been unable to do my Fast Walking. My symptoms became noticeably during that period, especially my tremor and my clumsiness (coordination).I started walking again three months ago, starting at 1/2 kilometre for 2 weeks and am no up to 3.5 kilometres. My time per K is still very slow, but I have had to re-build my muscle strength, which deteriorated very noticeably during the down-time.

Don't worry about what your speed is, as long as you are going as fast as you can.

Good luck!

[Tribselyov]

To reiterate, immobility begets immobility! PD meds may help control symptoms but not the progression, IBI!

[PalmSprings]

I also had OH. I had a Cardiologist before I knew I had Parkinson’s. I even had a heart ablation which didn’t work. But finally my Cardiologist and I found a medication that helps all my heart related symptoms. When I got diagnosed with Parkinson’s, I stopped taking the heart med. Big mistake, I was fainting and dizzy until I got back on the heart medication. My cautionary note is that I tried 5 different medications before I found the one that dealt with my issues. Good luck with your process!

[MarionP]

What were the specific leftover or continuing consequences/effects of your covid-19? Have you been checked by a cardiologist and pulmonologist since then to know some results of your current cardiac, cardiovascular, and lung functions?

And does anyone out there know much about how covid-19 affects autonomic functions?

[Eliza-Jane in reply to MarionP]

The effect Covid 19 had was that it broke up our walking group for months. Having to walk 1.5 mtrs apart just didn't work for us. We are a large group who travelled a lot. Too much risk.

[MarionP in reply to Eliza-Jane]

So you did not mean anything medical happened to you as a result of you actually getting sick with Covid. Was unclear what you were talking about. So it's really more like a personal problem, which would not be something you need help with, rather than a direct health problem outside of your choice ability...

[powerliftingtobeat]

I had the same experience with Apomorhine, unfortunately during afternoon tea on the Queen Mary 2 last November. I take Madopar 100mg x 10 a day and Ropinerole 8mg 2 x a day. The ropinerole is an agonist to make the madopar active longer and help reduce muscle cramps in the night. I wonder if it might help you? My daughter got me into powerlifting after my diagnosis in 2018. I find it helps calm my symptoms and post workout my tremor settles down for up to 4 hours. Resistance bands can be a good place to start with this. Good luck, stay open minded to exercise ideas. I find I have to work hard to get through the discomfort before the rewards are evident.

[Eliza-Jane in reply to powerliftingtobeat]

Muscle cramps started about 3 weeks ago. What a joy to wake up to. I will look into Ropinerole. Thanks.

[MarionP]

How about getting a rescue dog to take walks with who can go as far as you need to go and would benefit from it as much as you? My dog keeps me fit because she just has to have her walks and of a decent length too. Do well by doing good.

[Eliza-Jane in reply to MarionP]

I have a lovely little dog who loves to come on walks with me. Trouble is after 30 mins he has had enough.

[gwendolinej]

Hi Eliza-Jane, You can certainly claw your way back with trial and error and with the wonderful members here.

My husband had orthostatic hypotension before PD diagnoses. Previous to that, he had high blood pressure.

He was also being treated in a clinic for depression, which turned out to be severe apathy.

He was put on Florinef for the low pressure. It was very effective, (again, before PD diagnosis). After diagnoses and a few years on, he developed bladder problems. That caused a few falls as his blood pressure dropped while standing at the urinal for too long (not a problem for girls 😅). The Florinef did a good job and the side effects didn't appear for a few years.

Here's a weird thing. His blood pressure then went up. It could then be low or high. He went off the florinef and his bladder problem went away. The connection wasn't picked up by the specialists. Now his blood pressure can be high or low. He's on blood pressure tablets at night when his blood pressure goes up, but it can go down too low as well.

Recently (late last year) after his main medication (the Neupro Patch) stopped working and his severe apathy returned, , we decided to try Mannitol, as mentioned on this site. It worked a miracle for him and the thing it did do was raise his low blood pressure. It still gets lowish, but not enough to make him fall.

If you are interested, you can see my post on Mannitol and the effect it has had on his symptoms.

We did try B1 Thiamine before mannitol, but it sent his blood pressure through the ceiling. That's very rare I think.

Good luck,

Gwendoline

[Eliza-Jane in reply to gwendolinej]

Thank you for your comments Gwendoline. My blood pressure is erratic. Really high, then really low. After reading your comments I will see if medication will help. Mannitol gave me terrible wind so I stopped taking it before giving it a chance to work.

[gwendolinej]

Hi Eliza-Jane, what a Rollercoaster ride we are on.

When my husband had a small stroke about 3 years ago, the hospital referred him to a specialist. She is a clinical pharmacologist. His blood pressure is usually low in the morning and builds up later in the day. She has him on a blood pressure tablet, taken about 4.30, which helps keep his blood pressure down during the night, but not all day. It's Candesartan Cilexetil 8mg. We tried half a tablet first.

This is a new regime. We have tried a few possibilities, including a patch put on in the evening and taken off in the morning. We have a monitor, so we have a fair idea what his blood pressure is doing. He will wear a monitor for 24 hours next week and then we'll have a meeting with the specialist to discuss results.

As I said, I think the mannitol brought his low blood pressure up. It now doesn't seem to get below 100/. Whereas before it would get down to 75/. So the falls don't happen anymore.

The Syncolein mannitol has something in it to stop the gas, as its produced for PD. My husband takes Aximax for the gas, as we source our mannitol here in Australia. It's the Sosa brand, out of Spain.

You could also try starting on 1ts. Some members have said that it's worked at that dose.

I'm repeating myself here, I know. I actually thought I'd replied to you already...der

If you do try B1, do it slowly..not like I did!

Good luck,

Gwendoline

[Eliza-Jane in reply to gwendolinej]

Hi Gwendoline. Thank you, you did reply earlier and I responded. Who knows with computers and cyber space, When your second reply came through I was actually in hospital because of my blood pressure. It turned out I had an undiagnosed UTI and that was sending my bp out of control along with anxiety because I thought I was becoming incontinent (and all its ramifications). I have printed out your reply and will source the mannitol. Thank you for your replies, both of them.