mini-stoke

[Harpoon]

Hello all you happy campers!

I know, I haven't been around much, spending a LOT of time working and running around and everything else under the sun.

That until a week ago Friday when I had a stroke in the afternoon at work.



So I had just made a cellphone sale (I'm at Radioshack now, not the newspaper) and I went into the back room for a little breather and a drink. I walked around the corner to where my boss was seated and I was about to say I made a sale but nothing came out.

I said it again and he made a little joke about how speechless I was and that's when I found out I couldn't talk. I walked over to him as he got out of his chair and I got into it. I pulled out a sheet of paper and a pen and wrote, "Help! 911" and sat back for him to read it.

He thought I was having a diabetic issue but he called 911 anyways and told the operator what he thought was going on.

A few minutes later the fire department (I know them well, a neighboring district, and the ambulance service (I know them too, I work them them on occassion) arrived and set about their work. Within ten minutes of onset I was in the ER getting evaluated. An hour later, I was at a regional stroke care center.

I never lost consciousness. No pain, no dizziness, no fatigue. There was a little right-sided weakness in my face but I couldn't tell unless I saw a mirror.

What brought all of this on, so the doctors are saying, is a big drop in my PT/INR. I'm now on 9 mg of warfarin as well as a 81mg enteric aspirin, daily.

Part of the doctor's release order is to get tested for PT/INR 3-5 times a week now. Maybe that's a little much, but I'm not sure yet.

I'm also still trying to find a better lab for my protimes and I have yet to speak to my cardiologist. I was in the hospital for a week and got home today.

I'm still off work and I'm not going to fire/EMS calls for a little while until some of this stuff rights itself but I wanted to ask for informed opinions on frequency of monitoring, and home testing (again, because I'm thinking of going after my "former" docs and insurance to get it this time) stuff.

I'm about 99% of what I was before the stroke. I didn't get the tPA protocols, even though it was an option for a while. I think when the ER doc gave me enteric aspirin and I responded right away he decided to wait on the stronger stuff. Most of the physical therapy is actually due to the lingering effects of my valve replacement (2003) and stuff I was born with but they wouldn't listen.


That's all for now folks!

 

[Cooker]

Harpoon.....sorry to hear this happened. Wishing you a full recovery. I also hope you get your coumadin management worked out.

 

[Nancy]

What a scary episode, I am so sorry to hear this. But I am also glad to hear that the damage is very minimal.

 

[Guest]

I'm glad you are ok and that you recognized what was happening. Strokes scare me.

I hope you are able to home test too, that way you can monitor your INR weekly and control your dosing rather than rely on managers. The one good thing mine told me is to make sure if you are taking warfarin rather than brand name coumiden, that the same manufacturer is used by your pharmacy. Different manufacturers modify the content. She said it's even better if you can get name brand, then you know what you're getting. All you have to do is make sure your doctor writes "dispense as written".

I wish you a speedy and safe recovery.

 

[Phyllis]

So sorry to read this, Harpoon, but thankful as you are that the damage is minimal. Please keep in touch and let us know how you are. Prayers and best wishes coming your way.

 

[ALCapshaw2]

To answer your question about Frequency of Testing INR,
I'd say NO More Than 2 Times per week (and that is even a bit much since it takes 3 to 4 days for Coumadin to fully metabolize).
DO NOT Change your Dose based on tests less than 4 days apart.

ONCE every 4 to 7 days is more common when it is changing, then every 2 weeks, and after you have been stable for a few months, once a month is the usual protocol (although some go 6 weeks...NOT ME).

Many of our Home Testers go 2 weeks between tests which is a safe conservative protocol when stable.

Out of curiosity, how often were you testing?
Were you using a dedicated Coumadin Clinic?
(i.e. who was monitoring your INR?)

'AL Capshaw'

 

[ALCapshaw2]

I'm glad you are ok and that you recognized what was happening. Strokes scare me.

I hope you are able to home test too, that way you can monitor your INR weekly and control your dosing rather than rely on managers. The one good thing mine told me is to make sure if you are taking warfarin rather than brand name coumiden, that the same manufacturer is used by your pharmacy. Different manufacturers modify the content. She said it's even better if you can get name brand, then you know what you're getting. All you have to do is make sure your doctor writes "dispense as written".

I wish you a speedy and safe recovery.

Louise,

I think your Coumadin Manager is dispensing some misinformation about Generic Warfarin, espectially the statement that "Different manufacturers modify the content". My understanding is that the FDA requires that Generic Brands must have identical active ingredients or some such wording.

There has been a LOT of discussion about Generic Warfarin vs. Coumadin. ALL but a very few report NO difference going from Coumadin to Generic (or back).

There is a Significant COST Difference between Name Brand Coumadin and Generic Warfarin and many insurance companies will no longer pay the difference.

The Major Generic Manufacturers (TARO from Israel and BARR from the USA) produce QUALITY products with tight controls. I've had NO problems with either.

There have been reports on TV News programs about Counterfeit Drugs coming in from the Far East, especially CHINA. This has been more a problem with Expensive Drugs, especially Cancer Drugs.

'AL Capshaw'

 

[Isis]

Definately start asking your doctors about getting a home testing machine. It is so much more convienate than going to a lab once or twice a week. Your doctors may want to wait awhile before prescribing you one because of the stroke, but maybe not.
You will do much better keeping your INR in range monitoring it yourself.

Sorry to hear about your stroke.

 

[Susan BAV]

I'm sorry to read this but I'm glad you're doing much better. Take care.

 

[geebee]

Harpoon,

I am so sorry to hear this. I have had (and still do now and then) TIAs so I know how scary this type of thing can be.

I have always found that immediately chewing an aspirin helps my TIA symptons so it sounds like you were probably treated properly. I believe the tPA stuff is kept for full blown strokes.

I hope things get back to normal for you and you are able to home test now.

BTW - I test every 1-2 weeks depending on where my INR is.

 

[Mary]

Harpoon,
I suffered a mini-stroke before replacement that affected my ability to speak. I was given the tPA which immediatley resolved my right-side weakness, but I was left with a disconcerting (especially for me ) reluctance to talk. That lasted for more than a month, but I've since read that is a pretty common.

Anyway, I'm glad yours resolved with quick treatment, and I hope you get your home monitor!
Best wishes

 

[ALCapshaw2]

I second Gina's suggestion of chewing a full (325 mg) regular Aspirin whenever you get any symptoms of Stroke such as TIA's or abnormal Visual images. It would be best to get your Doctor's concurrence on this.

The Doc who suggested testing INR 3 to 5 times a week needs to go back to Anti-Coagulation School.

Testing and changing doses this often GUARANTEES that you will NEVER stabilize because it takes 3 to 4 days for each dose to become fully metabolized. If you are not yet stabilized and you change your dose, then you will either overshoot or undershoot depending on which direction your INR is heading.

Doctor's / Coumadin managers(?) like the one you described are what gives Coumadin such a Bad Name for Bad Outcomes.

This raises the question of how often you were testing and who was managing your Coumadin / INR. With proper management, your ministroke might have been prevented.

'AL Capshaw'

 

[Gnusgal]

Oh, wow! I'm so sorry to hear about your stroke. I'm glad you were able to get help quickly, though. Sounds like it could have been much worse. Good luck in your recovery!

As for home testing, I sure hope you're able to get it. It makes it much easier to test more often (though I agree that 3-4 times a week is way excessive). Personally, with my INR having been pretty stable, I test once a month. If I get out of whack, then I test more often. And I don't have to wait for doctor's orders to do so.

Please keep us updated!

 

[Troy]

Hello Harpoon, Sounds like a wake up call. As Valvers we need to take a much more proactive role in our health.

My health insurance would not pay for a home INR monitor. I was able to set aside pre tax money in a medical spending account at work to purchase my machine. Even if you have to borrow the money from a bank it is a good investment.

I live in a very rural area in SE Oklahoma. The clinic drew blood and would call me a day or two later with the INR results. Which is insane. My surgeon intervened twice with my family doctor because he trying to get my PT in line rather than the INR!!

I now call my INR to my cardilogist Coagulation clinic in OKC. Life is good.

Question every move a doctor or nurse makes. Our lives depend on it. They are humans and do make mistakes.

Be Well.

 

[tobagotwo]

Sorry to hear about this, Harpoon. It has to have been a shaking experience.

What I have seen in terms of information about Coumadin vs warfarin agrees mostly with Al Capshaw. However, not all generics are tested for efficacy. They are required to release the same amount of active ingredient, which is not the same thing. This is why some generics don't work as well over the course of a day as others or as the original, having a short half-life of too much in the blood, followed by too little. However, in anticoagulation, this isn't really so much of an issue, as warfarin affects a bodily cycle, and thus the effects are delayed and ongoing.

The statement the clinic gave about generics manufacturers is basically true, but it would seem naive to think that it would affect this type of a drug. Their testing would have shown if it was not working, and adjustments they would have made to your dosage over time would have compensated for any differences in product effectiveness. If it were me, I would get equipment to self-test, and until then, use a different clinic if possible.

To all, to reinforce what Gina said: if the use of aspirin is warranted, remember that most aspirin today is enterically coated for comfort - made not to dissolve in your stomach. If you don't know which kind it is, to get immediate results from aspirin, chew the tablet. Otherwise, it won't release until it gets to your colon. That would be a very long time to wait with a stroke or heart attack.

Best wishes,

 

[Blanche]

Harpoon:
It's nice to see you here again, although not under the best circumstances. It is so good that you are doing well after your stroke.

You might want to know that TPA is not supposed to be given to people on anticoagulants like Coumadin and Warfarin.

http://www.merck.com/mmpe/sec16/ch211/ch211b.html

If you scroll down in this article, check "Table 4, Exclusion Criteria for Use of Tissue Plasminogen Activator in Stroke." On of the exclusions is, "Current use of oral anticoagulants INR greater than 1.7.

When Albert had his third stroke, and it was a small one, I specifically asked about TPA and was told that it was counterindicated for people on anticoagulants.

Again, it is good to see you here. Hope you can visit more frequently.

Kind regards,
Blanche
Lived in Buffalo 1942-1973

 

[hensylee]

Harpoon, what a shock! I am so glad you knew enough to get help for yourself. Thank goodness for your training. Hoping you continue to recover from this and get completely back to what you were before. I expect you will.

 

[catwoman]

Harpoon:

Sorry to hear you've hit a bump in the road, but glad you're doing OK now. Keep us posted!

 

[Harpoon]

Al >> That's what I thought but I didn't want to rustle up the doctor too much because she was releasing me from the hospital.

I got tested Friday morning at a blood draw clinic (there's only one anticoagulation clinic in the area and it's through a private practice that I was thrown out of a year ago because I had a hectic life at the time (I was knee deep as a reporter/photographer in the state-wide manhunt for a fugitive who killed a state trooper) and called a few times to reschedule appointments.) and I have yet to see the results.

I'm going to AGAIN take my case to my insurance to get home monitoring and I can use all the best information I can get. I know my cardiologist is on board with it.

I think a lot of this can easily been avoided if either I wasn't drummed out of my previous doctor's service by an office manager (not even someone with any amount of medical training) and/or my current PCP didn't say she wanted anything to do with my warfarin therapy.

For the most part here, I'm doing VERY well. I still miss a few words here or there (but I did that some before the stroke) and my typing isn't as accurate as it used to be but other than that, I'm good to go.

Thanks for all the well-wishing... =)

 

[ALCapshaw2]

It sounds like you have NO ONE actually following your INR, is that correct?

How often were you getting tested?
Who was giving you dose information?

Do you have a Dosing Guide?

If not, I highly recommend AL Lodwick's Dosing Guide for $5 which you can order through his website www.warfarinfo.com A link to the guidelines from a Family Practice periodical has been posted from time to time but I don't remember it's proper name or link.

If worst comes to worst, you can Buy your own INR tester (through QAS or other outlet). Sometimes they will give you a discount if they know you do not have insurance coverage to buy the machine.

Good Luck and get tested by hook or crook at least once a month!

'AL Capshaw'