A warning about self medication

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1

I think it was nearly two years ago that I bragged to a friend that I did not take any medication at all. He was impressed as I was already in my late 60’s. Two years on & I now take 16 pills a day.

It really annoys me that every health issue I get is treated by medication. If that medication has a side effect then I am given more medication to counteract that & then more medication to treat further side effects.

I could take more pills than the 16 I take, there is the Omeprazole that treats the indigestion / heart burn I have sometimes, that one of the other pills gives me & the pain killers for issues that have not been treated & Melatonin a sleeping aid that has never worked.

There are of course numerous medication side effects that cannot be treated like the sleep problems I get. I was put on Quetiapine that makes me incredibly tired all day.
The GP I spoke to wanted to increase the dose I now take. I would hate that as I feel its side effects are worse than what it is attempting to treat.

So I spoke to my GP a couple of days ago explaining that I had decided to stop taking the Bisolorol [a beta blocker] that treats the A-Fibrillation attack I had about
9 months ago.

I spent 18 hours in hospital & did not get to see a Cardio Consultant. I did see a doctor who gave me the Bisolorol [beta blocker] & my rapid & erratic heart beat had returned to normal & I was discharged. The cause of the A Fib was not investigated & the side effects of these drugs ignored. I was also put on a blood thinner.

I saw the head neurological pharmacist a week ago at the local Conquest hospital who said the cause of my extreme sleep problems was in all likelihood Bisoprolol.

So I stopped taking it 4 days ago & told this GP that I had done it. I was told that stopping the Bisoprolol was dangerous & she advised against it.

But I was adamant I wanted to stop taking this medication as I am convinced that lack of sleep & fatigue make my Parkinson’s symptoms so much worse & life is not worth living. These drugs are all forever drugs & will never get changed unless
I make a stand.

So last night I thought I heard a banging on my front door but it wasn’t it was another Atrial Fibrillation attack. The banging was my heart pounding away in my chest. So I took a Bisoprolol pill & my heart beat calmed down & I was soon back to sleep.

Strangely the sleep I had last night pre - Bisoprolol pill was amazing & I have felt refreshed all day. My walking was better & my fatigue less.

I did phone my GP & said I was back on the bloody Bisoprolol pills. She was right of course although I do feel correct in trying to take control of the medication I take.

AFib itself usually isn’t life-threatening . But it’s a serious medical condition that needs proper treatment to prevent stroke. Treatment for atrial fibrillation may include medicines, therapy to shock the heart back to a regular rhythm and procedures to block faulty heart signals

I think I need a Plan B. Does anyone have any ideas?

Best wishes
Steve2

2

We would strongly urge you to reach out to the helpline if you have not, Steve. They are on 0808 800 0303.

3

I really sympathise with how your struggling with your medication steve, many of us are the same,never on any meds until we hit our 60s, then wham bam, a condtion like PD suddenly rears its ugly head, and its a game changer. Im not familiar with your heart medication, but my instinct would be to advise you not to interfere with that drug as its obviously controlling your AF, Quetiapine on the other hand does make you drowsy, even the low doses prescribed to PD patients. My husband with PD has similar night time dreams and disturbances that you describe , he has avoided meds for this as he worries he would have problems getting up for toilet visits( another issue). I do have every sympathy for your feeling that the medical profession just throw out more pills for everything, then pills for side effects, they have little time to spend listening to individual problems. I hope the PD helpline nurses can advise you more, i just wanted to comment that we read your posts a lot and are inspired by how well you manage your life, so take care!

4

Hi Steve, it sounds like you’re navigating a challenging situation with your medications. It might be beneficial to explore alternative therapies, lifestyle changes, or a second opinion from a specialist who can help create a more tailored treatment plan that considers both your AFib and Parkinson’s symptoms.

5

Good morning Jandc … Thank you for your kind reply, I’m glad you enjoy reading my posts. I live alone & I do find it helps me to put my thoughts on my health struggles down in writing rather than keeping them in my head where they might fester.

I do hope my writing helps others who I’m sure have the same problems as I have.
Indeed many people have it worse than me & suffer in silence.

I actually feel my Parkinson’s is under control with the Co-careldopa [Sinemet]
I take [6 pills a day].

I woke this morning with my bed clothes all over the place having had a couple of amazing dreams. One quite bad & one not so bad. It is amazing where these dreams come from. I basically only watch sport on TV & play indoor bowls & yet I dream of a high-tech World in the future. I even dream where I am playing a full 90 minute football match, yet I haven’t played football for 50 years & have no desire to do so.
The more mundane dreams see me back at the job I retired from, the job I did not enjoy & was pleased to retire from & here it is in my dreams to torment me.

Ho hum. Life goes on.

Best wishes
Steve2

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Good morning Khalid … Thank you for some more good advice. BUT …

“Lefestyle choices” … I don’t drink, I am teetotal & have not drunk for around 35 years. I gave up smoking aged 12. I tried it & didn’t like it. I do eat quite healthily, no red meat. I eat fruit & veg & take a vitamin pill. I play indoor bowls for 2 hours every day, which is about as much exercise as I can manage. I did do a 6 x 1 hour neurological physiotherapy course exercising in a gym. BUT a number of these exercises bring on my gait freezing & I am just too tired to do anything more.

“Getting a second opinion from a specialist” … Now that is a really excellent piece of advice BUT … I do not think this is possible in the NHS World we live in.

The problem I have is spread across normal Gp controlled problems & my Parkinson’s problems & medication. My Gp wont / can’t interfere or comment on my Parkinson’s problems & my Parkinson’s nurse can’t / won’t interfere with my other medical issues.

My Gp has just referred me for a Cardio appointment for my further A-Fib flare up. If I hadn’t refused to take my Beta Blockers this would not have happened [although
I am now taking them again].

Thanks again.
Best wishes
Steve2

1 Like
7

Good morning Jason … Clearly I need to come off Bisoprolol & go onto another drug BUT my GP will not change my medication on her own & wants me to see a Cardio consultant first. I have found if I stop taking this drug my A-Fib attacks return,.
So I’m now on a long waiting list to see someone. I did have a heart ultrasound & I do have leaky heart valves but only “mild to moderate” “no action required” as they put it.

The Bisoprolol is ruining my quality of sleep & that is worsening my Parkinson’s symptoms. There is clearly no solution.

I’m sure a Parkinson’s nurse would agree with me.

Best wishes
Steve2

8

Steve you may find this post upsetting but please understand that it is not intended as a criticism.

You were very lucky that your AFib attack took place at home, if you had been driving things could have been different. A minor road traffic collision that would be charged as driving without due care is normally charged as dangerous driving when failure to follow medical guidance has caused a contributary factor,
For dangerous driving courts MUST impose a minimum 12 month driving ban and order that an extended test is passed before a new licence can be issued. This in addition to a fine or unpaid work or a custodial sentence. Getting insurance with a dangerous driving conviction can be very expensive.

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Thanks for your advice.

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Just to let you know I had a letter today offering me a telephone appointment with a Cardio consultant [or one of his minions] on Wednesday 23rd October. So 12 days time. I can’t grumble at that can I ? This particular lady doctor is really good, she has helped me before & tends to get things done when she can. Most of the other GP’s tend to see medication as the solution to everything with a bit of sympathy thrown in.

Best wishes
Steve2

11

Hi Steve,

there are other options for drugs that rate control AF. B-blockers can cause fatigue but so can Parkinson’s, so you may not get the desired effect but it’s definitely worth trying. I’m sure your cardiologist will be able to suggest some options. Just don’t stop the anticoagulation as that hugely decreases stroke risk from AF. Hope you feel bettersoon.

Podd

12

Hello Podd … Thanks for your reply. Not sure if I said but I stopped taking Bisoprolol
4 days before I had my latest A Fib attack in the early morning. Before the A Fib attack I had had a dream free / nightmare free sleep & woke up feeling refreshed & I feel I had had my best night’s sleep for some time. The following day I stood upright rather than my usual stooping. But I am back taking my Bisoprolol & the dreams have returned.

As you intimate I am on the blood thinner Apixaban & I have not stopped taking it.

What surprised me was that as soon as the Beta blocker was out of my system [google says it takes 3-4 days] I had a fairly bad A Fib attack. Clearly there is something up with my heart. I know I have leaky heart valves proved by the heart ultrasound I had. I think they said something like minor to moderate, no action required.

Best wishes
Steve2

13

Hi Steve. No leaky heart valves are good and a beta locker may not be the best solution for you but dealing with polypharmacy on your own is a dangerous pastime. I would never go down that path without good research or professional help. I have a good relationship with our GP practice Clinical Pharmacist and my partner is a retired specialist dentist!!

Have you tried clonazepam for your REM sleep problem. It worked wonders for me.

As to your wanting to get a second opinion from a Neurologist, you have the right to receive secondary care in any hospital of your choosing. Why not get your GP to refer you to the National Hospital for Neurology and Neutosurgery. It may involve a travel but you can be sure of a good neurologist in a hospital that is the centre of excellence for our condition. My Neurologist is Dr Simon Farmer and I can highly recommend him. Am I remembering right that you do not currently actually have a neurologist? If that is so, given your serious comorbidity, you really do need on and not just a PNS.
Trying to help a guy who tries to help us.

Take care

Doug.

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Good afternoon Douglas … I have just been in hospital with Covid. I spent 4-5 hours
lying on the cold floor in my sitting room, unable to move an inch, after phoning for an ambulance. I had to phone 3 times. Not good is it? Covid & Parkinson’s are not good bedfellows are they?

The ambulance medics told me I was classed as a C2 patient from an urgency point of view. After my 3rd phone call I got upgraded to C1, lucky me.

You are correct I do not really have a neurologist. I am on someones list but I have never seen him. So I am asking for a first opinion rather than a second opinion. My original neurologist returned to Armenia.

Thank you for your Dr Farmer suggestion but my issues are mobility & I can’t walk more than 50 yards & long car journeys also affect my walking.

I have not tried clonazepam for my REM sleep problem. I do feel that it is the Bisoprolol that is causing my sleep issues. I will consider it, thank you, but really I want to take less pills rather than even more pills. I am due to have a telephone conversation with a Cardio Consultant next week. I expect he will change my Bisoprolol to something else.

My experience is that any GP at my practice will not discuss my Parkinson’s medication & my Parkinson’s nurse [who is acting as my neurologist] will not advise on my other medication.

I am hoping I get to see a neurologist at the Benenden hospital soon.

Thanks.
Best wishes
Steve2