Hi there- I thought I was going crazy too. I've been on warfarin for over 2 weeks and I feel absolutely horrible. I get these tiny bursts of energy every once in awhile but mostly I am exhausted and weak. I lost 10 lbs and I get horrible night sweats. I don't know if the sweats are from the medication or going off birth control pills but they are horrible. I am cold one minute and then sweating the next. Basically I feel like I can't regulate my body. I just never know how I'm going to feel. One minute I'll be fine than the next I'll get dizzy and have to sit down. Its the weirdest thing. I just wanted to share my experiences and let you know that you are not alone and my Doctors have confirmed that the medication does have these side effects for many people. You don't have to be a rocket scientist to know that it must have some toll on your body. I don't understand Doctors who say it has no side effects. This stuff is thinning your blood and its literally made from the same stuff they put in rat poison so how the heck could it no have side effects!!

I feel that fatigue and crankiness, partly from not being able to do that much now but i wondered if it is the Coumadin or simply the effect of having the emboli still in there? I was diagnosed on Jan. 11th so it hasn't been that long and I really don't know so I guess I'm asking that question.

I haven't had the other effects mentioned of nausea, night sweats or weight changes. My INR is all right but lots of others things were somewhat "off" in my latest blood work and the Dr blames it on the interactions of different drugs now since coumadin, celebrex and xanax have been added to the old "mix" of meds I needed.

Me again. Today is a bad one and, no matter if it is the clots or the Warfarin or what, I wonder if this will just go on forever! I also have a bladder infection so sulfa drugs were added; my thyroid test is down but he doesn't want to change anything more

I'm stressed because of the big move my son will be making in order to live an hour away but I normally just let things like that roll off and enjoy the positives of the situation. I am so danged tired of being tired and no longer having spontaneous moments of feeling happy and contented. That was true after Don died two years ago and then things got better. Now the PE and all of those meds?? is depressing the heck out of me. I've been taking Pristiq too since Don's death but it doesn't do any good I feel. Thanks for letting me vent.

I agree with everyone else's comments about feeling awful on warfarin/coumadin. It seems to have more side effects than most docs are willing to acknowledge, plus the PE itself is really hard on your body...

BUT, to be a devil's advocate for a minute, if you're REALLY feeling bad, it might be worth nagging your doctor to see if there might be something ELSE causing you to feel so awful. I was totally unable to get out of bed after my PE for 6 weeks, I had pain, fatigue, dizziness, mental haziness, depression, chest pain, SOB, my heart was pounding funny - I attributed all of it to the PE/warfarin but it turned out I was severely anemic, and I'm now getting IV iron and I feel like a new person. We also decided to try to keep my INR at the lower end of my "safe" therapeutic range, and it's helping a lot!

I'm with you!!! I feel soo wierd and when I say something about it all the people around me challenge me. I feel wobbly in the morning, my vision is different at times, body is achy, my appetite is a mess, my body feels slow, stomach is constantly turning, and at times I feel confused in conversation....... what were we talking about LOL......just kidding!!
You might find this funny..... When I told my Doctor about the side effects she said... "Let me tell you about PMS" lol....
Try to journal what you are feeling and how it effects you, this way you can measure the frequency of those effects and perhaps you'll find a pattern.

That "Cupcakedecay" activated another side effect but I think that's related to my sweet tooth and not the coumadin. : )

Here are my words of encouragement........ A Bowl of Black Walnut Ice Cream. : )

Have a good day CUPCAKE!!!!

Wow! This is an incredibly eye opening post. Explains a lot. I have been having the splitting headaches, (not too many thank goodness) but dizzy when I turn my head, and the night sweats! Cold one minute, hot the next, I thought it was pre menopause stuff suddenly starting up, I guess not.
But at the same time, I guess I don't really mind that much that the warfarin is causing it. I was so close to being dead, I don't care what I need to do to avoid that again. And as yucky as I feel sometimes with the side effects, I feel 100X better than I did in the hospital.
Still it is nice to know it is drug side effects and not just part of the recovery process. This is all so new. Thanks.
Jo

I felt terrible when I was on coumadin also, I was nauseous a lot and everyone joked that I was pregnant at work. I also had episodes of palpitations, dizziness, lightheadedness and a feeling of impending doom and would have to leave whereever we were so that I could lay down.

I am glad this is not all in my head. The doctors are not telling me what to do. I feel like I am facing this all alone. I have been warafin (and have also taken Lovenox) for about two months now. I am told I have to take it for the rest of my life. I thought I was going crazy because they didn't talk about the side effects. I am exhausted to the point that I don't want to move but I am tired of laying around. I have good days and bad days. I can't breathe very well, I get splitting headaches, my body aches like I have the flu, I have stomach upset and nosebleeds because they are having a hard time stabilizing the medication. I get really dizzy. My memory isn't like it used to be. It is nice to know that others are having the same issues.

I guess I am lucky. I take high amounts of Coumadin and haven't had many side effects at all. I have noticed hair falling out in the shower and when I brush it, and I have gained weight- assuming that's from eating low amts of green veggies. But physically I feel great, not tired and actually seem to be breathing better now that the clots in my lungs are dissolving. The other side effect I have is acne, but I am attributing that to being off bc pills for 4 months now.

Maybe there is a difference for those who take warfarin vs brand (Coumadin)? I take Coumadin.

the doctors all say there is no side effects to the coumadin but the people who take it all report very similar symptoms. Some who have had to go off coumadin for surgery report the symptoms go away until they go back on it.

Wow I had forgotten I commented on this thread, but I did want to add, all the side effects I had on warfarin/coumadin disappeared once I stopped and have not returned in the 9 months since. Some people are more tolerant, some people do better on the name brand coumadin vs warfarin although it's far more expensive. It really depends on your personal body and side effects, but it's not in your head. I wish they talked about more what to expect with warfarin treatment, but the fact is they just don't know a lot about it, especially the effects on younger premenopausal women. best of luck.

I was on warfarin, then switched to coumadin at my request w/o much change in the side effects. My most bothersome side effect was bad acne all over my body, but I also had extreme mood swings, hot & cold flashes, bad headaches mid afternoon, feeling tired and crappy, and lots of hair falling out. After much persuasion, I switched to Lovenox almost 1 month ago. I'm still somewhat fatigued and still have moderate (but not as bad) acne, but the other side effects have gone away. I've noticed that I am able to breathe better too, but that may be due to my being further along in my recovery or it getting cooler outside as well. I can't wait until I can be off anticoagulants all together...1 more month! I used to have frequent crying spells out of nowhere and many of the same feelings you're describing, but I don't feel that way any more since I switched meds. Maybe see if your doctor is open to this. My PCP offered me antidepressants several times. I declined, as I felt that my depression was situational and had a lot to do the the medication. Plus, why would I take something that would make me feel more tired when I was already feeling so tired?!

I am on Warfarin but I am tired and cranky most of the time. I also seem to be loosing my hair and some weight. I believe some of this is the Warfarin, but the anxiety is alot of my problems. I hope you feel better and have a good day! Good days come and go, but you always have us on this site to talk to:) Best of luck!
Carrie

I am so glad to read this post today. I was diagnosed with PE in my lungs last week and just came home from the hospital on Tuesday. Sometimes I feel normal and sometimes I have no energy at all. This morning I woke up and the back of my head felt so much pressure, I was dizzy and my blood pressure was up. I called my doctor and ended up in the emergency room for 5 hours. They did a CT of my head to make sure there was no bleeding and sent me home with not much of an explanation. I was so frustrated and just wanted to know why I was feeling this way. Now after reading this, it may just be a side effect of the coumadin. I am so thankful for this group, you all make me feel like I am not alone in all this...

**skip to third paragraph for coumadin, but kinda just writing out what happened.

Reading through the reviews and a lot of what my mother is experiencing. She went into the ER after like a week of putting up with side pain. Well, finally she couldnt stand it and they thought maybe kidney or something luckily one doctor said PE instead of writing her off as the ER know it all seem to do (sorry disgruntled from a secondary visit couple weeks ago).

Anyways, she get home 3 days later they put her on 8 days of lovanox and coumadin. Well within 2 days she developed massive swelling in her jaw and face. Her physician presribed antibiotics thinking this may be coinicidental after the PE or possibly what caused the PE since when she was admitted they couldnt determine the cause. Following day no sign of it swelling getting better so her physician referred her to go to ER caus more intense antibitics could have side effects with the coumadin (kidney failure). They wrote it off after 7 hours being there as an infection and the dr wrote "didnt know why she came" - asshole even tho it was in her electronic records and I brought copies of her rushed blood work etc with me when her physician told me to come by before taking her into ER.

OK sorry guys, but yea her INR jumps around all over the place she is achey and has trouble walking. Shes already had vicadin prescriptions due to bad arthritis in her knees so this has made walking even harder with her legs swelling (she was given water pills to try and help). Her face finally got better over the weekend after being in pain for a good 2 weeks. Now she nauseaus and called me and said shes feels like shit at work and vomited twice. All this shit happened after the coumadin and the doctors seem to write it off. its possible the infection on her jaw, but the rest of the side effects I mean shes miserable and can hardly walk somedays. SHe gets over one thing and then theres another. Does it get better? I've been reading about riveroxaban. These 3 times a week visits to her physician and the ER trip i have very little faith in the prescription.

Reading from the posts it probably is the coumadin, but its just stressful just more hurdles and shes 64 Does it get better?