Dizziness

[Redjune1]

My husband is newly diagnosed with MSA and is on Sinemet x3 daily. So far the medication doesn’t seem to be helping, he’s been on it just over four weeks. Also, the symptom that seems to cause the most problems is dizziness which he has all the time. Is the Sinemet likely to help that or should he see his gp to get something to treat it? Are others on anything for dizziness?

[Chris215]

My wife died from MSA in March this year. Dizziness was the first symptom and remained a problem for the four years of her condition. I would be happy to share her story but only if you are sure you are ready as it may be more than you are ready to cope with just now. Also there is much to be said for crossing your bridges one at a time as they arise. My warmest best wishes to you both and all the comfort you require as each new need arises.

Chris.

[Redjune1 in reply to Chris215]

Hi Chris, I think I would like to hear your wife’s story please. I want to be prepared for what is to come.

[Chris215 in reply to Redjune1]

Ok. I hope you have someone you can lean on and share your feelings with. Rita was diagnosed with Parkinson’s in 2016. Dizziness and fear of falling were key symptoms as well as overwhelming physical tiredness. A year or so later the dizziness had turned to frequent falls so that she was confined to a wheelchair and we had hand rails installed in key locations around the Bungalow-toilet, shower, bedroom. We also had riser bed and riser chair installed. In 2018 Rita suffered intense pain with muscle spasms which was controlled by a medicated patch applied daily. Come 2019 Rita was becoming incontinent, first of urine then of faeces. In 2020 the Consultant acknowledged that he was taken aback at the speed of Ritas deterioration. He then determined that in fact she had MSA and advised us that it would never get better.

We had hoists installed in the living room and the bedroom to better manage transfers between bed, commode, wheelchair and riser chair. She had a specially designed wheel chair to support her failing muscle control.

The final phase started with problems eating and drinking. Swallowing became first of all difficult and finally virtually impossible. At this point Rita was admitted to hospital where she was fed intravenously. She lost completely the power of speech although was able to understand what was said to her. She responded by squeezing my hand once for yes and twice for no, same with the doctors and nurses. Five weeks later Rita died, peacefully and I believe pain free.

You should not assume your husbands journey will be the same. Make use of advice from the MSA support group for your area, the MSA Nurse for your area, the nearest local hospice. You will need and deserve all the support you can get, but especially professional caring support for your husband and the best available emotional support for yourself.

I hope this helps. By all means ask me whatever you like if you think it will help.

Chris C.

[Redjune1 in reply to Chris215]

Thank you Chris for telling me about your wife. MSA is certainly a horrible disease and the way it progresses so quickly is frightening. We’ve noticed how quickly my husband has deteriorated since first visiting our gp in April.

[Fgsm]

my husband's problems are dizziness primarily and balance issues . I have tried to find a solution but it seems that there is none . He also has gaited axia .

[Redjune1 in reply to Fgsm]

Hi what is baited axia please?

[Fgsm in reply to Redjune1]

forgive me . typing error . Gait Axia . difficulty walking . specially in straight line .

[Redjune1 in reply to Fgsm]

I think it was a typing error on my part! Thanks, that sounds like my husband, he has difficulty walking and often walks into things

[Jellybenz]

I believe the dizziness is to do with blood pressure issues when moving eg laying to sit up position and also sitting to standing. Tony when attending the atypical parkinisom clinic had to do these everytime we attended and his blood pressure was noted each time. We never had any medication for fixing the issue though. Possibly something to mention to the consultant when you see Him? And I'm sure they can explain to you better than myself. But just to reassure you it's a common complaint for this condition. Best wishes with your journey x x

[Redjune1 in reply to Jellybenz]

Thanks for your reply. Phil hasn’t had his blood pressure checked at all by the hospital. I think his gp checked it in April though. We will definitely be mentioning it to the consultant next week though.

[MF31]

Hi my husband is on sinemet but is used for stiffness and pain in his legs mainly I like to think it has helped to a degree with this he is also taking a tablet for his drop in blood pressure in fortunately he still has some problems with dizziness and of late only eats toddler size meals it is a terrible illness and only though going through it watch it take them little by little. Stay strong

[Redjune1]

Thank you for all your replies and information. I’m so glad that this forum exists.

[KatieClaire]

Unfortunately sinemet doesn’t help with MSA and might make any dizziness worse. It is worth having a trial of it though. Dizziness itself in MSA is often caused by postural hypotension- blood pressure plummets on standing - and it is one of the contributors to falls also. This can be treated with fludricortisone but as with everything in this condition, it can be variable in its effectiveness. It’s worth exploring if your loved one is still in the early stages and can still mobilise quite well. It’s also worth looking at what other medications are being taken that might make the postural hypotension worse- particularly and meds for high blood pressure as these should /could be discontinued. Measure Blood pressure either lying or sitting then standing and ideally straight away and then after 2 minutes. My mum has the most impressive postural hypotension I’ve ever seen (I’m a GP)!

Best wishes

KClaire x

[Redjune1 in reply to KatieClaire]

Thank you Katie. Phil is only in the early stages, although it seems to progress very quickly. His consultant is referring him to cardiology so hopefully they will prescribe some medication for the low blood pressure. Our gp doesn’t seem to want much to do with it at all.