Clopidogrel

There have been past comments about the cause of our fatigue and Clopidogrel has been "in the frame". It is so hard to tell if a medication is the cause of part of our problems. So I have conducted a ten week test on myself.

I stopped taking Clopidogrel and took daily Aspirin instead. For five weeks. Then I stopped the aspirin and went back to Clopidogrel. For another five weeks. There was no difference at all. So I can conclude that Clopidogrel does not adversly affect me. 

Of course i wont try this with my other medications unless my GP supervises. But blood thinners seem to be OK to stop and start (when dental treatment or other procedures require for instance).

Thought I would share this with you all.

I still have no idea if it is possible to cure the dreaded post stroke tiredness.

Mine still rages and although I have eased it a lot, it still incapacitates me. 

Generally it gets slightly better each month. So slowly I dont notice. But this Monday it came back with a vegeance. I had forgotten how awful it is when pretty much full blown. I call it SF as I dont agree that its tiredness. Exhaustion, crushing fatigue maybe but not tiredness. As was shown to me, sleepy sleep does not reduce SF. You wake up with the level that you went to sleep.

Lack of sleepy sleep allows greater SF to get a grip. 

Best wishes

Colin

 

Colin, I agree. I do not take Clopidogrel and my fatigue is ongoing. I wish research would find out more about it. I wake up after a good night’s sleep, but,within hours, I am fatigued again. Last week, we had a festive lunch with friends, but next day, boy was I tired. I had a two hour sleep in the afternoon and eight hours’ sleep the same night.

I wonder if the brain gets overloaded and overworked? The conversation was flowing and we all enjoyed ourselves. In my early days post stroke, I found following conversations very hard and did not participate much. Now I can, but perhaps increased fatigue is the end product of excessive activity?

I think you are right, after all, the main difference pre and post stroke is a damaged brain, so overloading has to be the reason. Why it overloads may be more complex. The stroke that got me was much less severe than many, including yours, yet the SF is huge for me. 35 months and it still dominates my life. Physical or mental activity for 30 minutes and the pressure comes down. I feel as though I have fog around my brain. Twice that fog lifted and it was  a different world. But that lifting hasnt happened at all this year.

I am just trying to live with it. Not a good situation.

With lots of ME sufferers coming on the scene I think research might find an answer. It seems ME is just the same as our SF or as the medics call it "post stroke tiredness".

Rachel suggested to me that whatever level of SF you go to sleep on, then its the same when you awaken. She is right.

I have some success by having a rest/meditation about an hour after rising. Its a coping mechanism and doesnt prevent or even reduce SF. It just stops it getting worse.

I am sure lack of sleepy sleep will encourage SF to take a hold. But plenty of sleepy sleep doesnt prevent SF.

I had got my sleep pattern well organized , but recently the pattern has slipped and I get less sleep. This Monday the SF was six times worse.It hasnt been like this for two years. I do also have gout and maybe the pain of the gout, or the nasty tablets or the fever might be interacting. So I hope the SF will at least die down again sometime soon.

At the moment, life is not worth living. The dizziness, discomfort and inability to do anything are very upsetting. I will sit the storm out and hope to be positive again.

My GP told me they didnt acknowledge post stroke tiredness when he was training. He has now retired.

I have not heard anyone come on the forum and say that SF has stopped. A few, a very few, dont  get the SF.

I wonder if dementia is also mixed in there somehow. 

I have had two stabs at quantifying my level of SF, both by severity and by length of time. The very slow improvement is welcome, but it does stop me from firming up my quatifying system.

Best wishes

Colin

 

 

Colin, so sorry that you're having such a bad time just now, I know that feeling is echoed by many others on this site.  Are you still writing your diary?  Your pragmatic approach is well-known, but it's the minute by minute, hour by hour struggle that is so difficult to deal with, and seemingly no signs of improvement.  There's also quite a grim weather forecast for the us East Anglians so no chance to escape into the garden for a change of scenery.  I've already spoken to my gemstone angel to ask her to be strong for Kay, I'll put your name on her list and hopefully you'll see some improvement really soon.  We're all willing you well, thinking of you, and look forward to hearing that some of the gloom has lifted very soon.  Take care, give Oscar a snuggle xx

Yes my diary carries on. I have a diary that I have kept for 20+ years and then I have a diary to track the stroke symptoms. It does highlight progress. In thheory I hoped to spt some connection between actions and faitigue, but not a lot of success so far.

I prefer winter in several respects so I am quite happy with the long dark cold days. However, I must say November has been bad for SF, three times running now.

Thanks Nic, nice thoughts

Colin, So sorry to hear you are feeling low, but you will ride out the storm. That said, I still get little slips in mood, but then get out of them quite quickly.

I don’t think dementia has any link to fatigue, but I have no medical knowledge. I do think that any additional health feature might well impact on fatigue as well As mood. This week I have got an aching hip and my shoulder muscle feels tighter than usual. However, I made myself go to my exercise class today and did tolerably well.

You and I are of an age and it is a bit of a battle to improve more when youth is not on one’s side. That said, I intend to go on fighting. Every day is a new day and requires us to live. The old Biblical words, ‘Sufficent to the day is the need thereof’ means something to me nowadays, whereas it never did before.

Chin up and carry on Colin!

Fatigue is common and feels up on you, one day I’m ok the next I’m not so just take it easy. I’ve been told by the doctors this is common. One other thing to ask your doctor, my consultant stressed no blood thinners. That may only be relevant to my type of stroke as I have had loads of micro bleeds pre the main stroke.

 

Thank you John. Kind and sensible words..

I am low at the moment and am looking forward to coming up and out of it any day now.

You are very wise to keep up the exercise classes. 

No doubt you are right that dementia doesnt come within the orbit of fatigue. Maybe the boffins will get a break through in the workings of the brain and that might open roads to fatigue, aphasia, the variety of demetoas and other brain stuff. I dont think it will affect you and me ! Maybe those who are currently children.

Change sheets day tomorrow, and I always think of you ! Much milder down here today. a veritable haetwave of 12c.

Best wishes

Colin

Now there is an interesting thought. I have wondered about the relevance of my thinners. I am assured that the stroke that got me was an unlucky and unlikely event, so my blood isnt full of sludge etc. I also wonder if the high level of BP tablets might have some adverse effects. Pre stroke I took amlopidine and  that caused me a lot of problems. I caught it just in time and was moved to other BP tablets.

Well what can I say I’m on bendroflumethiazide 2.5mg. Ramipril 5mg and amlodopine 10mg all one a day. Consultants say they are the right things to be on. So I am  Trusting them as I am feeling better. I challenged my gp on why she didn’t medicate in the summer when she identified I had high blood pressure. 

Anyway I am carrying on the battle.

 

Good on you Sandy. Thats a very high level of BP medication. My GP took ages to review before going for Ramipril and Indapamide. Ramipril is particularly suitable for my age group, as it does have some long term problems. The GP had charts and crib sheets and she called in another GP to check/agree what she was prescribing.

We need a specialist GP or something. Its unfair on GPs and its unfair on us. The follow up is hopeless and convalescence is non existent. I earn a lot from this site.

ttfn

 

Colin

Hi Colin

it was the consultant at the hospital who put me on these drugs, my gp Is concerned and wants to reduce dose and I am monitoring 3times a day. She is also sending me for blood tests regularly to check and see it there are any unwelcome side effects . So far so good.

ive never been ill, not had a day sick since 1973. Hadn’t even met my gp.

ive been diagnosed with amyloid angiopathy. I’ve seen my mri image, it was interesting to have it all explained and understand the damage 

Chat soon, enjoying your input, thank you’ll much

sandy

 

Wow. Thats a fantastic run of good health. I guess it just confirms that a stroke can get us at any time, quite unexpected.

I prefer not to take any medication. But I do listen to my GP. If your BP is about right then it would be logical to reduce those high levels of BP tablets. I would say ditch the amlopidine but thats my bias. Many get on with it just fine. I am lead to believe its the most popular BP drug because its the least expensive. With the SF that followsstroke, I dont know how I would know if a given drug is detrimental. When I took that drug I wasnt on any other medication so it was a good bet that it was the cause of my problems.

I guess that amyloid angiopathy caused your multiple bleeds (I hope i have the right person, my brain doesnt work properly!). Have you been avised to change your diet ? I was advised to adjust my diet, but no one seems to know how I do that. I have adjusted my diet so slight weight loss has nicely and slowly edged me down to 154 lbs. This seems OK for me and a side effect is that I now fit my trousers and shirts better than I did before. I now have some spare clothes that are one size bigger than I am. 

I am coming to the end of a terrible week health wise. It has been grim. But now getting back to the routine of rationing my energy to keep the SF down. I went out this morning, just to the village and back, which demonstartes I am on the mend. Isnt all this medical stuff boring ?

 

Colin

 

Hello Colin, it’s good to hear you were able to get out to the Village this morning. You’ve had a rough week and we’ve all been rooting for you, looking out for the help and advice you give. I always look out for certain people whose posts might interest John and you are one of them. He’s done a lot more smiling (4 times a day) so he does take heed. X

Thank you. Yes its been as bad a week as I have had in two years. Having gout in the blood stream doesnt assist.

I have sometims wanted to read what a contributor has posted, but I cant find them on this site.

The smiling does help doesnt it.

Colin

It’s a most difficult site to navigate and so unnecessary! I tried to find posts just by you, just by Nic, just by,,,, what a waste of time. The search button does what? Ah well, let’s see what management come up with. Keep on improving. Veronica 

Hi Colin, just really hoping that you're about to emerge from this bout of horribleness.  You're the first to offer support and to cheer others up, so, know that we are all thinking of you and willing you on.  

??

I couldn't agree more. It seems like ages since the site was "improved " I started moaning almost straight away.  I have found the information and support you get from  everyone via this site is invaluable. Please please can the web designers take notice.  I find the search function only works if you know what you're looking for. Not much use otherwise.  

 

 

??? ⚒?? c’mon, let’s crack this! 

Yep I'm ready 

?? I have got my tool kit.  Hammer = ?

Screwdriver = ?

xx