MSA and Hypotension

[Ruffner]

My husband has been dx with MSA recently. His most disabling symptom is NOH. We are struggling with treating his low blood pressure and the resulting supine hypertension. He also has very low heart rates (sometimes 40-45 bpm) with SOB and "wooziness." He is worse in the morning. If he sits in his reclining chair he feels okay. How do you maintain some kind of physical exercise when doing so brings on symptomatic hypotension?

[J0nstandard]

Hi - I care for my sister with MSA - so I know about the NOH blood pressure problem and agree that it’s a big reducer of quality of life. My sympathies.Can I ask if he is on any meds to try control this?

[Ruffner in reply to J0nstandard]

Thank you for replying. I would like to know more about your sister if you are comfortable sharing. He has been taking Midodrine for about a year with modest, unpredictable results. We have tried to increase the dose but doing so causes supine hypertension over 200/115. He is not supposed to lay down while on the medication but his coat hanger pain and nausea are improved if he lays down so I find him in bed several times during the day. He's frustrated, anxious, depressed and at times ready to give-up but I am not giving up.

[J0nstandard in reply to Ruffner]

I’m happy to share about my sister’s condition yes. She has very erratic BP readings that result in dizziness and fatigue - sometimes high sometimes low. The drug (steroid) fludrocortisone is having some stabilising effect but that is hit and miss. As far as I understand it the autonomous part of the brain the controls or regulates blood pressure has been damaged/impaired as a result of the MSA. She says that nothing short of lying down will help the feeling of vertigo/dizziness these days. So the cortisone is helping to stabilise the BP - but there’s no relief from the woozy symptoms unfortunately.

This in turn makes her feel less hungry (a bit nauseous).

It may be worth asking your doctor to consider alternative blood pressure regulating meds to see if one is better than another for your husband.

My best wishes for you both - it’s a very tough ride this illness. All strength to you.

Make every day count!

[Ruffner in reply to J0nstandard]

I'm sorry about your sister - you must be a very special person to care for her. Your description of her symptoms sounds very much like my husband. He also has daily nausea (he describes it as gnawing). We will ask about the Fludrocortisone tomorrow at his appt. My husband also tells me that lying down gives him the most symptom relief but it comes with the price of very high blood pressure. Hoping the Fludro works! Thank you and my best to you and your sister.

[binnyrox]

HelloI’m sorry to hear of your husbands situation. It used to be a problem for me but the following helped immensely

1. I am prescribed Florinef to be taken daily. This medication does not work immediately but helps maintain more stable readings overall

2. I test my BP often and when it starts to drop - I will take a Midodrine. The helpful effect typically lasts a few hours

3. I check my BP before engaging physical exercise. My bp falls 20-30points so I ensure it’s at least 130 otherwise the danger of a fall is there. (I’ve had stitches to the head ignoring this)

4. To bring BP up quickly, I drink 250ml very cold water with a liberal dose of salt. (I do not have any renal problems). That works very well for me.

5. To negate rising BP at night, I was asked to sleep on a trendelenburg bed. It works.

A simple alternative is to place a few bricks under the legs of the bed head side - so the mattress tilts like a plank towards the feet

Hope this helps

BR

[Ruffner in reply to binnyrox]

Thank you! We go to his neurologist tomorrow so I'll bring up the Florinef. My husband's typical blood pressure drop is 60-70 points immediately upon standing and well over 100 points if he continues to stand. Yesterday, we measured 65/44 after a very short walk (curiously, he does not pass out). We have a wedge under his mattress but I don't think we have it raised high enough so we'll look into that too. I've been a nagging wife about the water - I wish he could manage that part on his own. My best to you.

[Janeyl]

This is quite an old article, but I found it helpful in trying to manage NOH, which was the worst of my husband’s symptoms. ncbi.nlm.nih.gov/pmc/articl...

[Ruffner]

I've read a lot on the subject but the article you referenced is the most comprehensive. We are doing many of the strategies but I think more could be added. My husband doesn't seem to be able to manage this on his own so I need to be more involved. Thank you.

[SaltyFlorist]

I have been living with NOH for 9 years. I have turned my physical therapy exercises into a floor yoga routine so that I can remember each exercise. I started small. 1 set of 10 stomach exercises. I now do 30 minutes 4-5 times per week. I will also hold the stair railing with both hands 10 steps each leg. (Bottom stair only) My goal is to keep my core and legs strong to help keep me safe from falls. It also reduces my anxiety.I take midodrine and fludrocortisone. My doc said it’s pointless if I don’t keep up on the salt and water. I drink 48 oz of water and 2 salt tablets before I get out of bed in the AM. It still takes me 60-90 minutes before I can sit up without getting sick. (I also use compression wear.)

To help me stay hydrated I love mixing citrus Nuun tablets in with my peach tea, drinking Gatorade with additional salt added to it and eating a lot of soup. If I get too low on fluids I’m quite ruined for the day. I don’t recover and spend the rest of that day in bed. I average 2-3 liters of fluid per day. I hope this is helpful.