My APS husband has had two strokes (first 10 years ago, second last August) and this week a probable TIA. The neurologist given to us by

[grammy4him]

the hospital put him on 81mg aspirin along with the warfarin he takes because his INR was 2.5 when we got here and has been in the mid 2s to low 3s for months. Just wondered if any more of you are on both aspirin and warfarin and how you are getting along with that. He also is suffering from severe anxiety since the stroke in August and is on Trazodone to help with sleep and Lorazepam when needed for the anxiety. He feels terrible every day in the mornings and says he feels better by late afternoon usually and then dreads bedtime because he has to start all over again. They now lowered the dose of the Trazodone as both the int med dr and then neurologist said they do not like to use Trazodone for the side effects and that he was taking too much blood pressure meds (heart rate too low) and cut that in half. Praying this all helps him to feel better. They want him to see a psychologist to help him get his anxiety under control and hopefully not with the use of more meds.

[Salty]

I take heparin and plavix, no problems

[Lure2]

Hi,

If I understand your husband is on warfarin with a bit too low INR. If that is correct i would like to say that for most of us with APS it is vital that we have a stable INR and not too low from time to time. Many take Aspirin also if our symptoms get temporally worse and if your APS-doctor that knows you thinks it is useful .We are all unique.

Hope you have an APS-doctor and the possibility to go to a lab and take veintests often. Good to cheque the bloodpressure as some of us have very high blood pressure and it is important to get it controlled when you are on warfarin.

Best wishes to you and your husband from Kerstin in Stockholm

[MaryF Administrator]

Hi, I hope the team continue to provide the detailed care, and it is good that he has been referred to a psychologist as they will probably come up with a strategy to help him manage anxiety and stress which will help him in the long term and may have a knock on effect in a positive way with the condition, the less stress the better. I hope things really improve for you both. MaryF

[grammy4him]

We do have home coag check and test at least weekly. Goal is 3-3.5. Thanks for your replies. The anxiety l depression are what plagues him most now.

[grammy4him]

I would say it is probably both depression and anxiety. The anxiety comes over him in a wave...like standing at the edge of an ocean and the wave just comes over and you can't stop it. Heart races, etc. You would never know he had a stroke. Both last stroke and TIA only sign was speech aphasia and that returned both times. Probably some minor short term memory loss, but we are again, too...he is 62. =) I did get a breathing and relaxation cd and we do that together. He also is getting meds adjusted, so hopeing that might give him some relief. He feels so 'crappy' in the mornings...which he was somewhat used to the morning 'brain fog' but this is much worse than that...more like a huge hangover. Thanks for all your comments everyone. He was just nervous about adding aspirin as was always told to avoid anything with aspirin...

[MaryF Administrator in reply to grammy4him]

One thing I would suggest is asking the Psychologist if there is any access to him doing a Mindfulness course in your area.... it teaches you very well how to manage stress and anxiety and gives you the tools for warding off depressive episodes in the long term. MaryF

[grammy4him in reply to MaryF]

Actually we just received the seminar "Taking Time to Quiet Your Noisy Soul" and have been going through the anxiety sessions together and doing the relaxation CD together. He loves it and did the breathing techniques during the night when he woke during the night. Praying this helps, too...

[MaryF Administrator in reply to grammy4him]

That sounds great, for sleep and restlessness plus pain at times I use various relaxation sound files on MP3 with Binaural Beats on them, been doing them for years! Would not be without them plus laughter as much as possible during the day! MaryF

[panda60]

There is a supportive group known as different strokes set up specifically for younger people. I believe it was started by a barrister who had a stroke whilst quite young and found most info/ support was for the elderly (and 62 certainly isn't old!) I had my stroke in 1998 and found them of great help. They are easily found on Google (sorry don't know how to post links)

[Lure2]

Have they chequed the lung/heart, pulmonary hypertension etc? It goes with Huges and can make you feel anxiesty.

Heartsymptoms are sometimes hiding with APS. I have made several Echocardiography with doppler. You say he has drugs for hypertension.

Kerstin

[grammy4him in reply to Lure2]

He just had all heart lungs and cartroid arteries checked this week when in the hospital after TIA. All checked ok

[grammy4him]

Thanks so much for all your input! It is so appreciated. : )

[grovet29]

I've had 2 strokes while on warfarin. The Dr's also have me on 81mg aspirin and 10 -15 mg of warfarin daily. I as well suffer from anxiety disorder. The Dr put me on valium. I feel yucky most days. Good luck

[Lure2]

Hi, Sorry to hear that you have had 2 strokes while on warfarin!! That is terrible as warfarin is meant to prevent from strokes in order to make you feel safe with your APS.

The amount of warfarin is different from person to person but the most important thing is to BE IN RANGE.

Do you know if you were in range when you had your strokes? I selftest and then I have noticed that my INR changes a lot.

What did your APS-doctor do to help you to prevent further strokes?. More cheques-ups at the anticoagulationclinic I guess? Which is your therapeutic range?

Most of us need an INR of 3.0 - 3.5 to get rid of symptoms. I feel best at around 3.5 Some doctors set the range at 2.0 - 3-0.

I take Warfarin and always try to be in range to prevent further damages to my body. I feel so sorry for you.

Please let us hear how you are managing your situation?

Best wishes from Kerstin in Stockholm

[grammy4him]

He is now off all Trazodone and replace with Amitryptaline for the anxiety. He adds Lorazapam when needed. If he can get good sleep he has pretty good days. He was not on Warfarin when he had the first stroke...that is when it was discovered that he had APS. The second stroke, a gp who was not familiar with APS freaked when his inr was too high (low 5s) and told him not to take any Warfarin for three days to lower inr. We were concerned and after two days he took it again, but it was too late...it had dropped to 1.9 and he had a stroke. Now if he runs high we know to just give 5mg that night and maybe 8 the next and it will be back in the targeted 3s again. His inr drops rapidly just taking lower and we will never go 1 day without unless he has to have surgery and has injection standby. He is doing better...not great, but better ...and we are thankful for that. Might just be the new him again. We got used to the 'new him' 10 years ago and this might be the new, new him. We know it could be worse. He has always been a hard working farmer, and is trying to adjust to the idea of retiring, if that is the Lord's will now. Thanks to all for your replies...we appreciate it... =)

[tim47]

Might I suggest they think about eliminating a hole in the heart (patent foramen ovale aka PFO) Over the years I had a stroke and multiple TIAs and countless investigations. Then I had TIAs and finished up in a Stroke Unit and the specialist put me through a load more tests including a TOE ( trans eosophageal echo) and they found the hole. The hole leads to increased chances of clots and these occurred even with an INR of 3.3. It is suggested that possibly up to 20% of the population have PFOs but most are of no consequence to individuals. Prof Hughes, who I saw to discuss how I should deal with getting it closed, felt that there might be quite a few of us with undiagnosed PFOs. I haven't had a TIA since mine was closed in 1990. It has certainly reduced the stress.

[Lure2 in reply to tim47]

Hi, Do you have pulmonary hypertension? They think I may have CTEPH (Chronic Thromboembolic pulmonary hypertension).I was not aware of some PE, but I have had hundreds of microclots. I have always had high titres of all the antibodiesI

Interesting with the hole in your heart and what prof Hughes says about it.. We learn so much from eachother.

This illness hides so many things. I have had Ecochardiography with doppler many times.

Kerstin