Symptoms Changing

[Bridielena]

I’m apprehensive

The last 2 days I have deteriorated somewhat frightenly.

From coping to not coping.

My feet and calves have spasmned and twisted upon getting out of bed. I just want to collapse. Can manage a quick bathroom visit before it hits. Today with grabbing walking frame for support managed a metre or 2 before finding a perch. I felt numb all over. I am on my own as husband is in hospital with Renal failure. Had my phone with me so after a reasonable time, as it was about 5,30 am on a Sunday I phoned a neighbour who had a key, if she couif help. I had taken my first Madopar dose so it was a waiting game. She couldn’t lift me of course but gave me moral support and a cup of tea, I came good and stood up albeit very wobbly. I get stronger the longer I’m walking. I had heard Sifroll makes you dizzy and light headed. I have been that way for years so deliberately didn’t take it the day before. Certainly worked but was that the reason I had trouble this morning with the twisting of both feet and calves. Also all day have needed more Madopar to get through the day. I’m taking Sifrol ER again.

I’m very aprehensive now that my life is over. Quite depressed but trying to talk myself out of it. I have Just turned 71. Having a sick husband has stressed me too and probably that has contributed to my symptoms escalating. His Kidneys have responded to treatment and he’s still in hospital but has another hurdle as X-rays have found a shadow on one Lung which has been diagnosed a a cancer. Was waiting for an appointment with a specialist when this Renal problem hit him. I’m about to turn out the light and go to sleep where I can dream of better things but then wake up to reality and it starts all over again.

[jimcaster]

I am very sorry to read about your situation. I wish I had a magical answer for you, but please know you are not alone and that positive thoughts are with you from all over the world.

[Bridielena in reply to jimcaster]

Jimcaster, coping better now with all the advice coming my way.

Thank you for your positive feedback.

[AmyLindy in reply to jimcaster]

Here, here! Hang in there, Girl💪

[park_bear]

I take it from your post that stopping the Sifrol relieved your lightheadedness. Sifrol is a dopamine agonist. Dopamine agonists commonly cause orthostatic hypotension - in plain English - lightheadedness upon standing up. This can become a disabling condition. This is one of the reasons dopamine agonists should not be prescribed until you are maxed out on levodopa medication. When they are prescribed, a physician really should monitor your blood pressure to make sure you are not suffering from dopamine agonist caused orthostatic hypotension. Failure to do so is negligent in my opinion.

So now you are in a very difficult situation - the dopamine agonist is causing an unacceptable adverse effect, but you cannot suddenly stop taking a dopamine agonist. If you do the results will be as you have just recounted. If you wish to get off of it you must taper your dose slowly. If you undertake this you can expect to have to increase the dose of madopar to compensate.

Your physician and big Pharma propaganda are at fault here, and you are the one suffering the consequences. The propaganda I am referring is the claim that dopamine agonists' adverse effects are no worse than those of levodopa, which is a lie. There have been many lawsuits against pharmaceutical manufacturers over dopamine agonists. I do not know whether you would qualify for compensation.

In any case, you need to get a good blood pressure cuff and track your blood pressure. Measure your blood pressure both lying down and upon standing. Ideally, both measurements should be the same. As you wean yourself off the Sifrol you can track your recovery.

[Bridielena in reply to park_bear]

Park Bear

It’s now 5 am Monday morning after a good sleep but no better in symptoms of twisting painful feet and calves but have managed to drag myself onto walker and propelled it down hallway to sitting room backwards . I literally fell into the chair. My whole body is quivering. My friend will be here soon. I knew I’d suffer differently from dropping the Sifrol but no idea it would be like this. My Neurologist is in another large town 3 hour drive from here. I can get in touch by phone or email. His receptionist would pass on the message and usually he would reply. He’s very approachable..

Meanwhile I am very miserable as I wait till 6 to start Madopar. Thank you for your reply. I’m uneducated when it comes to drugs and their reason for why one takes them even but one expects the specialists to do the right thing. I do get confused with a lot of what is written. Am envious of their knowledge. Wish it would gel with me.

Bridielena

I do have a blood pressure monitor. My BP can be very low.

[park_bear in reply to Bridielena]

I do not see any reason to delay taking your Madopar. As I mentioned, just dropping the Sifrol cold turkey is going to be really rough. I would suggest tapering your dosage instead.

As this incident illustrates, it is incumbent upon you to rise to the occasion and engage your mind with understanding the information about medication. Your confusion is understandable. As I said, there is a lot of propaganda out there. Nonetheless, you must decide what is to be believed and what is nonsense. Let your own current experience with the Sifrol be your guide.

[Bridielena in reply to park_bear]

Park Bear

Thank you. I know a lot more now. Appreciate your response but hard to wait it out. I need to stash meds all over the house so as to be near them wherever I drop but today, did take Madopar earlier than usual.

Have emailed my Neurologist.

[tid1]

Hi - I hope this might help with your leg and foot twisting muscle cramps. I take magnesium citrate at before bed. It almost eliminates night time leg cramps. There are several types of magnesium. I take magnesium citrate because it has one of the best absorption rates and is still affordable. I know it works for me because if I forget to take it before bedtime, I wake up with serious cramps in both legs and feet. I take 2 - 250 mg pills but would suggest you start with one. Magnesium is also a natural laxative so proceed with caution.

I also have 2 different prescriptions I can take for muscle relaxants which I occasionally take if I need something more:

Cyclobenzaprine 10 mg - for nighttime muscle cramps (it will make you sleepy)

Methocarbamol 750 mg - for daytime.

[lempa_nik in reply to tid1]

I second what tid1 said. When I had excruciating spasms of my left calf muscle, I was saved by magnesium. A good one, magnesium citrate, brand name "Natural CALM" which works for me, is available on Amazon.com.

[Bridielena in reply to lempa_nik]

Dumpelkin

Thank you for your input too. So appreciative of a complete stranger wanting to help another citizen of the world cope with this ‘thing’.

I love all the alternative names we have given over and I wonder at times what they all mean.

[Bridielena in reply to tid1]

So happy to receive your advice. Will try it as soon as I can get to a Pharmacy. Thank you for your interest and concern. It’s a miserable condition.

Bridielena

[Jennyjenny2]

I'm so sorry to hear how things are going for you H. The added pressure now with your husband not well would definitely not help. Sending love and hugs.

[Bridielena in reply to Jennyjenny2]

Jennyjenny2

Thank you darl...just returned home from visiting husband in his hospital bed and he is doing very well......loving the hospital food....good country hospital with farmhouse, home style, substantial cooking.

[Springfield78]

Sending healing love to you and your husband.

[Bridielena in reply to Springfield78]

Springfield78

I hear you and have caught the gift.

Thank you

[Jocee]

So sorry you are going thru this. Does your doctor know what is going on? Sending prayers.

[M1tz1]

My heart is with you, Bridielena. Praying that you'll get the right medical advice and be stronger soon. Hang in there. xx