October 31th
2009
1:58 PM
I am a 48 year old female with a-fib. I am not overweight...just started falling apart since now I am menopausal. I've been on Warfarin for 6 weeks. My INR has hardly moved. I'm now on 8 mg and have my INR test on Monday. I started at a 0.9. Now I'm at 1.20 and have been there for three weeks in spite of upping the warfarin. I've not changed my diet except to exclude greens and green tea when I began the therapy. Everything else is consistent.
I just started exercising again a week ago. Something I haven't done in five years since I lost my sister. I bought a Total Gym and enjoy it. It has helped me get some energy back, has helped alleviate some of the mental fog, and has lowered the incidence of anxiety attacks. (I've been getting anxiety lately...since the mental fog and memory lapses...that bothers me since I love to read and write and the mental fog seems to be taking the joy out of it now.) The reason I decided to start strength training again is because of the joint pain I have been experiencing lately. I didn't have it before warfarin. I do now. Only one joint, though. The strength training does help, but every once in awhile, that sharp pain comes back to visit. It's just a little less now.
I plan to tell the doctor that I have begun strength training again. Not just because it's good for me and my heart, but it seems to help with the side effects of menopause and warfarin...without adding another drug like an antidepressant.
Warfarin...I believe is a life saving drug. BUT, I have to do my part too.
BTW, if I didn't have triple thick hair, I would complain about hair loss. Right now, it's a non issue for me. Just saves money at the hair dresser.
-- By karenwest1961 | Reply | (1) replies | Private Message me
October 29th
2009
2:36 PM
32 year old male. Admitted to ER with A-Fib. Treated with lovenox and atenolol. Cardioverted 3 days later. The headaches began as soon as I started the coumadin and have persisted everyday since. Worked with doctor to find cause of headaches, tried switching blockers, no avail. The only other med I'm on is warfarin. What else could it be? I love how a quick search shows "coumadin, no known side effects", but here's a room full of people with the same headaches. Now I see, headaches are just the beginning. What kills me, is instead of finding out why I went into A-Fib, and working to fix the real problem, the doctor's would rather thin my blood, so I don't have a stroke when my A-Fib comes back! I refuse to poison myself to death, just to avoid death by stroke. Come get me, I'm done with this qwuap!
-- By 98turboteg | Reply | (1) replies | Private Message me
October 21th
2009
8:58 AM
I cannot get a good hard erection since I started to take warfarin I had a mitral valve replaced and I have been on warfarin since 2003
-- By tinydog77 | Reply | (1) replies | Private Message me
October 20th
2009
7:03 AM
I'm a 70 year old male, never had health issues but 9/30/09 had blood clots in my lungs that nearly finished me had not I had on hand DMSO which my wife applied liberally to my chest while I writhed on the floor gasping for air. By the time the ambulance got me to the hospital all symptoms gone, never returned. Quit warfarin after a week. Feeling fine. Check out the research of Stanley Jacobs, MD on DMSO and keep it handy. It does dissolve clots without side affects.
-- By webronson | Reply | Private Message me
October 11th
2009
5:47 AM
I have been on Warfarin for three months for a DVT in my femoral vein. I get some headaches, fatigue, feel cold, tired and have gained weight. I am a fit middle aged male, back at the gym now and cycling. I eat a balanced low fat high fiber diet, but still cannot shift the weight. I have been a depressive for most of my life and although manage without drugs have resorted to Valium to help me sleep, as insomnia has also been a significant side effect. I do not sit around, drink excessively or eat like a pig, so where is the weight coming from? My GP's seems ambivalent and it took five weeks to diagnose my DVT after my complaining about Phlebitis and pains in my groin. Not a happy bunny.
-- By rockdad | Reply | (1) replies | Private Message me
September 29th
2009
12:26 AM
Been on warfarin for three months for DVT left calf. I got to this site looking up fatigue associated with the rat poison. I've also experienced increased sensitivity to sunlight both directly on my face and extreme sweating from doing lite work. I also have a constant ringing in my ears and memory seems to be worse. My dad also takes this medication and doesn't have any of the same symptoms. I will deal with it for the time being rather than have my calf swell up like a cantaloupe.
-- By freebird777 | Reply | Private Message me
September 29th
2009
12:04 AM
I have been on Warfarin for 3 months.Fatigue, poor memory and definite increased sensitivity to heat and sunlight. I've always worked outside and this summer has been unbearable.I sweat profusely from average activity. I asked my dad who is also on warfarin if he felt tired or noticed the suns heat on his skin and he replied no. Of course my
Dr. said he had not heard of these symptoms. another side effect is ringing in my ears.
September 18th
2009
3:44 PM
Had a mitral valve replacement with pigs valve in September 2008. Told I needed it and would feel much better. Two weeks later had Atrial Fibrilation and was put on warfarin together with bisoprolol (beta blocker). Was cardioverted in December but am still on Warfarin 7-8mg to keep my INR at between 2-3. I experience such awful side effects, that seeing thig site proved that it was not all in my head.
Symptoms, hair loss, bleeding gums, painful legs, weight gain, fatigue, headaches, blurred vision, tender skin, depression etc. etc.
I feel depressed and wish I hadn't bothered with the operation, as I feel worse that before!
September 2th
2009
10:34 PM
I'm so thankful for this forum as you really do begin to believe you're going crazy when every health professional says that warfarin is not the cause of weight gain since the start of your treatment. Whether it's the actual drug or how it interacts in your body or the cause of taking your warfarin, obviously based on all the testimonials here and on other sites, there ARE side effects that they are not willing to admit to. Or, they simply have not done the research or surveys to clinically support this. Regardless, while I hate this weight gain, I feel a little better knowing that I'm not imagining it. I work out 5-6 days a week and watch what I eat and still the weight creeps on. Siigghhh
-- By toronto1 | Reply | Private Message me
August 26th
2009
2:29 PM
I'm 48 and had a PE 4/2/09. I entered this site looking to see if hair loss was a common side effect to the Warfarin I've been taking and, lo and behold, not only do I now have an explanation for my thinning hair but the acne, the joint pain, WEIGHT GAIN (UGH!) and gas / bloating. The powers that be have decided that the cause of the PE was my Yasmin birth control pills (a huge law suit going on for Bayer now - the producers of Yasmin, Yaz and one other one) and put me on the Warfarin for 6 months to life - we'll see about the 'to life' part on 10/02/09. I think regardless, I'm going with 'Tannabo' and trying the Nattokinase once I'm done with the Warfarin. Thank you for this 'enlightening' website and everyone's input!
-- By sam624443 | Reply | Private Message me
August 23th
2009
9:33 PM
I am a 40 year old female. I found out 3 years ago that I have factor V. I've been hospitalized for 17 PE's. I was being treated with coumadin, plavix, lovenox. My INR will not stabilize. The doctor has now put me on 30mg. of warfarin a day. and my INR still sets at 1.2. My side effects are awful. I feel tired, week, cold, weight gain, but most of all the terrible headaches. The doctor says it has nothing to do with the warfarin. I stay depressed and now losing hair. I've taken my doctors advice and I'm going back to the cancer center where they are more experienced. I feel like I'm dying everyday and its not in my head. I do believe its side effects. And if its not moving my INR than to me it seems useless to take such a high dosage. Its a catch 22.
-- By traby21169 | Reply | (3) replies | Private Message me
August 18th
2009
7:35 AM
I am 57 years old, male, and active, and have been on Warfarin since 1987 post Aortic Valve Replacement. I was quite happy with the dosage up till 2001, when I had an episode of TIA due to a malfunctioning thyroid and when my heart rate went down to 30 bpm. Since then, I have also been on a daily dosage of thyroxine, just enough to get my TSH up to normal levels.
Since then, I have a creeping condition of body aches and back pain, which has now, after 7 years, become chronic. This does not seem to alleviate with change from the Eltroxin from Glaxo, to Thyronorm from Ranbaxy. I have now accepted to live with this sometimes-chronic pain.
I tried some experiments with my dosages of the medications, and so I reduced my Warfarin to 5mg from 8mg. Within a week I was plagued with cramps and aches, and I got scared and went back to my old dosage.
Has my body, my heart, my arteries, adjusted to the thin blood over this time since 1987? Due to this thinning of the blood, will the detection of constriction of arteries and veins be more difficult? And consequently the detection of angina pectoris and atherosclerosis? Or can it be just old age catching up?
If any of you are on a similar combination of these two drugs and with similar symptoms, I would appreciate a line.
-- By victor52 | Reply | Private Message me
August 5th
2009
3:33 PM
Hi I posted this on the Coumadin site when I should have been here,
I am a 66 year old female and up to a year ago I felt 20 years younger now I feel 20 years older.
I fell and broke my hip June '08. Had a hip replacement and developed a blood clot (DVT) in my left leg.
They put me on Coumadin and when that didn’t do the job they added Lovanox (another blood thinner requiring shots in the stomach).
Not only has they not helped but my blood clot is growing.
My symptoms:
daily headaches, debilitating leg pain (the pain is so bad that it is crippling me), fatigue (an overwhelming feeling of tiredness, I set down for a few minutes and wake up hours later.), loss my concentration (trouble doing simple crosswords), can’t study simple directions, numbness in toes and hands. I can go on.
And the doctors? “It’s all in my head. It can’t be the blood thinners.”
I am going to copy your blogs and take them to my doctor and demand something be done.
Thanks again to this site and all of you. I was beginning to think there was something wrong with my mind.
-- By ellaclark | Reply | Private Message me
August 4th
2009
5:47 AM
Hi All, Hope everyone is holding up well. I've been on warfarin for year and a half now and like most of you i find it has changed my life a lot. I'm only 22 and i hate taken warfarin. I have gained weight and feel depressed. The thing that scares me the most is that i was sick at the weekend and i found there was blood in my sick!!! Has this ever happened to anyone before as it scared me a little.
-- By kelly2009 | Reply | (1) replies | Private Message me
July 31th
2009
6:08 PM
I am a 40 year old female and have been on warfarin since september 08 when i developed a blood clot in each lung.Doctor's reckon it was caused by my Crohns disease.I had also given up smoking 9 months before and was feeling good about myself but since starting on the warfarin i feel OLD and FED up with everything,6 weeks after starting warfarin i started getting tired all the time, my head doesn't feel like mine, i feel depressed all the time,i get strange pains in my head,my shins feel weird almost numb,can't concentrate,vision feels weird,excruciating pains in my joints to the point i couldn't walk and WEIGHT GAIN like you wouldn't believe and my whole body generally swollen.I thought i was going mad until i found this website THANK you to everyone xxxxxx
-- By monifleur | Reply | Private Message me
July 28th
2009
12:29 PM
Hi, I wanted to update my experience with Warfarin, I changed to Coumadin and have had much less severe side effects.
-- By goawayclots | Reply | Private Message me
July 21th
2009
6:20 PM
I too am on warfarin for life. I was diagnoised with lupus anti coagulant after they found a clot in my right leg. I was having no symptoms in my leg ,went to the er for hurting in my chest and left arm. was started on lovenox shots 2 times a day and coumadin. I too am experiencing joint and muscle aches and dizziness and feel extremely tired all the time. But I thank God every day they found my clot before it moved. And that they found the clotting disorder. I hope you all get better soon .. God bless you all. P.S. This medicine scares me very much, But so does the alternative!!!!!
-- By abell123 | Reply | Private Message me
July 19th
2009
12:50 PM
After reading these posts I am more confused than before, because my experience is so far very different. I was diagnosed with DVT about two weeks ago and now take Coumadin daily; the Lovenox injections have been discontinued. The reason I'm so confused is I now feel the best I have in 5 (five) years.
Before being placed on the anti-coagulants I had memory and concentration issues that were progressively getting worse and greatly affecting my job, and had daily headaches. I had joint pain that made it difficult to get up after sitting for awhile; they felt constantly inflamed. I felt fatigued all the time and my muscles hurt like I had really pushed them; I just didn't have any strength, and had muscle cramps. I was constantly yawning and found my jaws hurt from clinching my teeth, subconsciously trying not to yawn. I was extremely sensitive to physical touch, even hugs hurt. I also felt extremely depressed and cried almost daily. My lips and left cheek tingled, as well as other parts of my body. Plus I would get the feeling of sudden pressure in my head (different from a headache) like it was going to pop off, and I my eyes didn't seem to track what I looking at and had difficulty in remembering or comprehending what I just read.
About 6 (six) days after starting treatment it completely changed and these symptoms are essentially gone. I have talked with my doctor and pharmacist and they are baffled. I am concerned this change, while welcomed, may indicate an underlying condition that is not yet diagnosed. Has anyone ever heard of such an impact from starting Coumadin treatment?
-- By janiannd | Reply | (4) replies | Private Message me
July 16th
2009
8:38 AM
I have been on Warfarin since October 20th of 07 after being bedridden for 3 weeks in excruciating pain in my hip/butt which kept me from moving & i'd drag my left side of body from my waist down, into our bathroom in excruciating pain unable to turn to flush a toilet or stand for more then a minute. I begged my primary doctor to "give me an mri as my back was in so much pain with the hip/butt". I had been getting epidurals for what doctor assumed was a herniated disk.i was in a wheelchair now & my husband took me several times to E.R. AND THEY SAID "WHY ARE YOU CRYING IT'S ONLY BACK PAIN." I labored more & more just to breath. I couldn't get my breaths. "Frightening" finally Then, I walked myself into the local E.R. and told them "I think I have a clot in my lung because I don't have a cold or a bronchitis & I've been in bed so much I believe it is a clot." It was two clots in my right lung. My lung hurt a little more each day I recall I went about two weeks gradually having more & more difficulty getting my breaths. I was hospitalized and then my primary wanted NOTHING to do with my care when E.R. doctors called him.local hospt. took care of me & the clots resolved. I am still on warfarin for coumadin. I really do have a memory problem I fear now, "short term", especially now after 2 yrs on this med. Also, Last time I went in the sun I was so wiped out exhausted like it beat me up. I am afraid to go back to the beach. I get headachs also and one time when my INR. went up over 3, my ankles got these little red spots and also on my chins of both legs like blood specks showing thru the surface.Still there but not as evident. My avg. INR is 2.4 I feel most comfortable at.I try to maintain. Back in 1998, I got two clots in my left leg after a botched knee surgery to repair a torn cartledge and awoke with an in place fractured knee cap.. two weeks later horrible pain in my left leg revealed two clots one at ankle to groin in my vein=d.v.t. and the other at the side of my knee in artery to groin when the tornaquat was.
-- By barbiemime | Reply | Private Message me
July 15th
2009
4:12 PM
I am 26 years old. I've been on warfarin for almost eight years. I wish I had seen a site like this eight years ago when I started on warfarin (after DVT and P.E) I may have had some insight into the hellish two years that were to follow: hair-loss, depression, weight-gain. But I attributed all this to stress (it was pre-med varsity and I was under a lot of pressure academically).
Anyway, now my life is more settled, I eat right, exercise furiously 5 times a week...but I have digestive problems. Bloating, gas, overall discomfort in my stomach almost every night. I've cut out milk, wheat, coffee...nothing.
But tonight I started thinking...could it be the warfarin?
Does anyone experience or know about possible side-effects of warfarin on the digestive system, and does anyone have some useful advice????
July 14th
2009
9:54 AM
I’ve been following these posts with interest. I was on Warfarin for 7 months. I’ve now been off for 2 months. During that 7 months I gained 15 pounds, going from 136 to 151. I’ve never weighed more than 140 pounds in my life. In the two months I’ve been off Warfarin I’ve lost six of those pounds and hoping to lose the other nine. I also feel better, more “hopeful” I guess I would say. Looking back on those 7 months I can’t say I was depressed... but I did feel blue, and now I don’t. Also I had lost a bit of hair, it seems I was picking up more of my hair from the carpet than my dogs hair! That has also stopped. I find it interesting that those side effects were never mentioned with the drug information and yet so many of us experience them. I guess I just wanted people to know that it’s not “in your head”. This drug has an effect on how your body works. I’m just hopeful that I never have to be on it again, and my thoughts go out to those that have to take it permanently. Keep writing in, it does help others.
-- By anniemem | Reply | Private Message me
July 12th
2009
6:51 PM
I am a 53 yr. old woman who had aortic Valve replacement surgery in April 2007. I had a St. Jude valve put in and have been on Warfarin ever since. I usually go for a couple months with a steady INR and then, for no apparent reason, it goes out of whack and I have to adjust the level (with repeated doctor visits) to smooth things out. I have gained 20 lbs since my surgery, and cannot lose it, no matter what I do! I ride an exercise bike an hour a day, or walk a 3 mile route. NOTHING helps. I have recently said that if I had it to do all over again, I would choose a Bovine valve (even with the knowledge that surgery would probably have to be repeated later in life) just to be able to avoid the side effects of Warfarin. I have also experienced light-headedness, left sided chest pain, fatigue, coarse thinning hair, but by far, the worst is the weight gain!!
-- By palcook | Reply | (1) replies | Private Message me
July 8th
2009
4:43 PM
Hi, I am a 47 year old woman and started Warfarin and Lovenox June 29th as a result of blood clots in my left leg from knee surgery. I was able to go off the Lovenox July 4th (Yay!) because my INR levels were above 2. I thought the Lovenox was the cause of the nausea I experienced, but apparently that is not the case. I keep telling the clinicians at the Anticoagulant Clinic about the nausea and their response is that they haven't heard of it as a side effect. Thank you all for posting to this website, there is some comfort in learning you are not alone with these strange side effects. I also experience dizziness and have difficulty finding words. I think I will switch from Warfarin to Coumadin to see if the side effects are less, though many of you have written about weight gain ~ yikes. For those of you bruising with Lovenox I was told if the needle is dry when it goes in there is much less bruising. And to everyone my thoughts and prayers are with you. Oh yeah, I also have nerve pain in the bottom of my left foot, the compression hose do help website is ******
-- By goawayclots | Reply | Private Message me
July 8th
2009
2:22 AM
I have been on warfarin for 14 weeks. I do not enjoy taking this medicine! I am short tempered! I do not know if it is the medicine. It may be saving my life! I am gaining weight and at the beginning I was very tired. Now I am frustrated and upset frequently. My husband had a rare cancer removed from his stomach. I am not dealing with the situation very well. I do not have the stamina that I used to have to deal with a tough situation. I walk about 4.7 miles three times a week. I gained five pounds in the last five days. I also quit smoking in March. I love to run but I am unable to do it! I need to walk the majority of the walk. I am bloated all the time. I have a constant hunger! I have not been myself for a long time. I also found out that my thyroid is hypo. I have constant pain all over my body. My hip, shoulders, back and legs hurt. I wake up with the pain. I need to get used to the pain at 42 years old. I had a pulmonary embolism on march 27 of 2009 and they do not know why. My smoking is part of it but it does not explain everything!
-- By marymohler | Reply | Private Message me
July 7th
2009
12:36 PM
I am a 46 yr old woman. After developing 3 DVT's in my lower rt calf after major foot surgery, I was prescribed Coumadin/Warfarin. My doses have fluctuated between 1mg to 7.5mg (I have just lowered my dose from 6mg to 5mg as my INR yesterday was 3.9). I have noticed a lot of the symptoms listed above (others comments), but have bumbled along. The symptom that is bothering is my mouth! I can hardly eat or talk - my lower jaw especially aches constantly and even despite using an extra soft toddlers toothbrush, my gums bleed profusely. I only read of one other persons symptom regarding teeth/gums/mouth. I know it sounds melodramatic, but my mouth aches as though I had mouth cancer!!! I can't wait to get off this rat poison! Good luck to all.
-- By flickwee | Reply | Private Message me
July 6th
2009
9:53 PM
My husband was taking coumadin and developed an infection in his leg. He was ordered Bactrim DS bid. By the third day of the Bactrim, his INR was 4.7 and he was having mental status changes and vomiting. A head CT Scan showed he was bleeding in his brain from the interaction of the coumadin and Bactrim. He had to have 2 bilateral crainiotomies to flush out the blood from his brain. He nearly died. He has severe headaches and short term memory loss.
-- By sal6 | Reply | (1) replies | Private Message me
June 19th
2009
3:18 AM
Doctors really kind of hit and miss w/ all these agenda of telling patients that coumadin related symptoms are not at all what it seems..telling patients" it is all it your head"..what it seems and I know that doctors are 'tuned in" to tell patients "what they think they believe or read in textbooks and not listening to the real stories of these patients who are on these meds..they are therapeutic in a way to prevent blood clots in some conditions but in real situations those symptoms created by these meds are purely debilitating to some and having not to live life where discomfort won't hinder one from just living the normal life...free from all these adverse reactions,which are so crippling....I have made a decision to talk to my husband's cardiologist to have him stop taking this so called "rat poison" or surreal "human poison"...he was diagnosed w/ afib and had cardiac ablation..hubby's taking coumadin for about 8 months now-preventively...
but these symptoms had changed him into a very depressed individual..after reading all these tonight..I will take charge and will take control of our lives again and hopefully just live to be healthy again...thanx for all of you that posted these info.......
June 18th
2009
11:26 AM
I started coumadin 2 weeks ago, for a clot in my leg. I'm dizzy and lightheaded. I guess I'll be on it for at least 3 months. I've had abdominal surgery and a wrist fracture repaired surgically in the last 6 months and have had breast cancer (surgery, chemo, radiation) 4 years ago. I'm on Arimidex now. All of this is to explain possible underlying causes which I am investigating.
Dizziness seems to occur within an hour of my taking it - in the morning, but subsides by the afternoon. I'm thinking of switching the time I take it to the night - before I go to bed - maybe I can be dizzy in my sleep then and wake up with some sense of normalcy. Any comments?
-- By marianring | Reply | Private Message me
June 6th
2009
9:35 AM
I was diagnosed with Factor V Leiden after suffering from bilateral PEs in February 2004. I am on Warfarin for the rest of my life (I turn 45 in November). Since starting the Warfarin I have gained about 70 pounds. Nothing I do seem to work. I have tried eating better. I would love to exercise but my knees are shot. Probably from lugging around all this extra weight.
Has anybody else had this problem? From what I have read online, doctor will say the drug doesn't cause weight gain but come on.
Can anything be done short of stopping the medication? I am too afraid to do that. It sucks that there is not an alternative rx that would work.
I suffer from depression too (have for almost 15 years). As my weight has climbed, my meds for depression don't work as well. I am at the end of my rope & slowing losing my grip.
-- By stormie64 | Reply | (1) replies | Private Message me
June 6th
2009
9:11 AM
I was diagnosed with Factor V Leiden after experiencing bilateral PE's in February 2004. Since then, I have gained A LOT of weight. Not that I needed to but dang. I am at my highest ever & nothing I do will make it go down. I am almost 80 pounds heavier than I was in 2004. Something is not right. I suffer from depression (have for more than 15 years). My medication doesn't seem to have the same effect. My joints are killing me so it's hard to exercise.
A side note, shortly after being hospitalized for the PE's for a week, I noticed my hair thinning. Doctor told me it was because of the "shock" to my system due to having the PE's.
I will have to be on Warfarin for the rest of my life. I turn 45 in November. Ugh.
Has anybody had the same problem with weight gain? Is there anything to do about it? I feel I am at the end of my rope & slowing losing my grip.
-- By stormie64 | Reply | (2) replies | Private Message me
May 24th
2009
12:14 PM
diagnosed w atrial fibrillation last jan 2009, prescribed coumadin,2.5 to start per day, now may 2009,leveled off to 10 mg 5days per wk,adn5mg 2days. also since feb prescribed rythmol, coreg & crestor. **but since late March have experienced weigh gain, mostly stomach weight & some upper body. also seemed tired earlier at night, have leg pains which the cardio dr.claims is from the crestor...but this weight gain is crazy.gained at least 5 lbs since mid to late march.
-- By mariep | Reply | Private Message me
May 18th
2009
12:12 AM
I am 72 years old and in 1995 I had an artery blockage and had angioplasty.Upon my release from the hospital I was put on several prescriptions, beta blockers, cholesterol, Aspirin, Vitamins, etc. which I had been taking regularly for 13 years without any problems. In 2008 after having chest pain and going to the hospital my heart doctor advised me I had Atrial Defibrillation and put me on Warfarin and also told me to stop taking all the vitamins I was using along with my daily aspirin dose and one of my prescriptions. Since then I have had constant shoulder and muscle pain in my arm and leg. I have had several treatments by a chiropractor and several physical therapy treatments and the pain has not subsided. My memory has gotten worse also however I thought that was due to my age until I read some of the above side effects of Warfarin. I definitely have a lack of energy and also changed my diet due to the Warfarin. I have informed my heart doctor about the problems and he advised it is not due to the Warfarin. I don't agree with him after reading all the posts, but I am not a doctor. I will continue my prescribed dosage and Pt/Inr tests as schedule for a while, but if my pain etc doesn't get better I will probably do like the lady's posting and stop the warfarin on my own.
-- By xnjcop | Reply | (4) replies | Private Message me
May 14th
2009
3:55 AM
May 14 ,20209
I always feel off balance and cold, can't think straight,confused.
May 4th
2009
4:23 AM
I'm 21 years old and I had a PE December 2008 (a week after my birthday) and spent the Christmas holiday in the hospital. They don't know what caused it. I started out doing lovenox shots (which was horrible) and then switched to Warfarin. I have not been able to stabilize my INR and I've had to go to get it checked at least every other week for 5 months. It's so draining. At first I did everything by the book as far as eating right, not drinking alcohol, not shaving my legs but honestly I'm getting fed up. I'm tired of having to restrict my diet so much and be tired and depressed ALL the time. I started shaving with a razor again a few months ago bc the electric one does nothing. I also go out to the bars with my friends a lot more but it's so hard to be a new 21 year old in a college town. I want to be like all my friends and go out and have fun without having to think about the consequences.
Supposedly, I'm finding out on June 17 whether or not I'll be on warfarin for life. Sometimes I think that if that is what the doctor says, I will tell him no! I just don't think I can do this forever. It doesn't get easier and none of my friends understand. They don't know how bad I wanna cry every time they say "At least you are alive." Give me a break...
May 1th
2009
10:57 AM
Responding to a couple of posts: Low energy and leg cramps are signs of low iron, you might be anemic, ask your doctor to have your iron checked at your next blood test. Also, ask about taking a multi-vitamin, all of the literature about Warfarin mentions not taking vitamins but it’s more about consistency. I’ve been taking a multi-vitamin daily - with my doctor’s permission - and I’ve had very consistent PT’s and INR’s. I’ve been on 7.5 mgs of Warfarin daily for six months and am holding steady. It is very important to take it every day if you do take a vitamin, it’s important to be consistent.
And about the socks, they are called compression stockings and can be prescribed by your doctor, or some are also available at drug stores, ask a pharmacist at the store.
And also about headaches, it helps me if I stay hydrated. When I don’t drink enough water I tend to get headaches.
I’m back to exercising at my pre-pulmonary embolism rate, it took me six months to get there, and I started slow, but my body has gradually responded. I’m 52 and was pretty healthy before I got sick. Just keep at it, you’ll see results (and feel better too!).
-- By bullette | Reply | Private Message me
May 1th
2009
3:06 AM
I'm 52 and I've been on Warfarin for a year and a half after having a mechanical aortic valve replacement performed in China, with an American titanium valve. I went through some serious episodes of blood thinness, then moved from northern China to SE Asia. 10 months after being here, I continue to work long days, but my energy is all over the place. When thunderstorms come in (daily) I have migraines, but this may be due to head injuries years ago. The main problems for me are up and down episodes of energy, and when the energy is low, I go pale. Pain in my knees and feet when I don't walk enough (maybe an hour sitting), or walk too much (maybe an hour walking) and very rarely what I think is something like aphasia -- the right words don't seem to come out on rare occasions -- maybe too many languages crawing in my head :). I used to walk an hour and a half per day -- not any more. Blood is on the thick side -- surprising because the diet her is very low fat. I want to get back into walking, get my strength back. I also have heard of socks that help in blood circulation. If I had a name or a brand, I could probably find the product in Thailand. Any idea, thoughts? I'm very frustrated.
-- By laowai | Reply | Private Message me
April 29th
2009
9:23 PM
I recently delivered a healthy baby girl (Feb 9th) in which 1 week later I developed a blood clot on my brain and was hospitalized for 1 week after experiencing 4 seizures. They told me it was pregnancy related and I would be on warfarin for 6-9 months until the clot dissolved. I too am experiencing: fatigue, extreme dizziness, light headedness, I am seeing spots all of the time, I am getting leg cramps and foot cramps a lot, I feel really weak, and just plain old. I will be 37 years old this July, and I feel way too young to be feeling this way all of the time. I can not handle going to the lab 2-3 times every week for blood work, my veins are collapsing and bruising really bad. I cry every time I leave, my husband must think I'm such a loser. It has been almost 3 months now and I just got my first period since my daughter was born. I thought I was going to bleed to death. My husband had to watch me around the clock to make sure I didn't have to be rushed into emergency. This sucks....I'm trying to remain strong, and doing lots of praying these days....Thanks for letting me share my story.....
-- By maura22 | Reply | (1) replies | Private Message me
April 26th
2009
1:12 PM
As a follow up to last pm message, I have found that taking the coumadin later in the day (i.e. 5 pm range) that the daily severe headache seems to come during the early a.m hours (4-5a.m).. and easier to manage/tolerate than interrupting my all day and evening activities. It does not alleviate them, but the timing is better?
-- By matkari | Reply | Private Message me
April 25th
2009
8:18 PM
The severe headaches EVERY day. that the doctor was sure were not related to the coumadin.. are debilitating. They are usually in the evening or during the night, as I take the medication later in the day. However, I do not know how I will be able to take this med the rest of my life. I am 66 and just spent time losing weight on weight watchers program.. only to see the scales climbing daily. I appreciate the insight on this site to let me know that I am not imagining all this and not alone.
-- By matkari | Reply | (1) replies | Private Message me
April 25th
2009
1:54 PM
I had a several small PEs in my right lung 2 weeks after cosmetic surgery. I just turned 37, run every day and in great shape. I was put on both lovenox shots for 5 days and Coumadin for 6 months. After 6 weeks the side effects with Coumadin were so severe (weight gain 14 pounds in 6 weeks, joint pain, tiredness, hair loss) that I took myself off cold turkey and started on NATTOKINASE. I am doing great! I would recommend searching the natural approach like Nattokinase, vitamin E, cayenne pepper, etc. I have stopped gaining the weight and it's starting to come off. All of my other side effects went away too. I've been off 4 weeks now. All of the doctors were mad and scared me when I went off of Coumadin. I had to do my own research and listen to my body.
-- By tannabo | Reply | (2) replies | Private Message me
April 21th
2009
4:12 PM
Im 23 years old. One of the youngest people that is on coumadin I got sick when I was 22. I developed blood clots on my liver and stomach. Due to blood deficiency. I was told by the doctor it was inherited by one of my parents. My side affects are very fatigue, tired for no reason, skin blotches, slow memory, I get tired after 10 minutes of running like Im ready to collapse. Im always dizzy. =( I feel very fragile. I do get depressed sometimes because I feel like im very young at my age for this to happen. I found out I have to be on coumadin for the rest of my life. But we all move on....
E-mail me ******
Hopefully someone can share there idea's or another source of help.
-- By markdelosreyes | Reply | (2) replies | Private Message me
March 29th
2009
1:56 PM
I am a 43 year old female, I got a couple of clots in my left leg, caused by taking birth control. I was taking the bc to control my menstrual cycle, I took it against my better judgment, even though my dr. said it was not a high risk since I didn't smoke. Well that wasn't true.
The side effects are extreme dizziness, I went to walk down a set of stairs recently and almost fell down them, That would have been tragic, Thank god my friend grabbed my arm. I know for a fact that it is a side effect from the coumadin because prior to this dvt I had no dizziness, as a matter of fact I was very healthy, I exercised 4 times a week, boxing, weight lifting ect. I was "NORMAL" I can't wait until the doctor says ok, stop taking the blood thinner. I want my life back. I just want to get back to the way I was before my dvt.
March 27th
2009
8:43 PM
This site has helped me feel like I'm not alone. Thank you to all of the previous people who have written in about Coumadin. I am not the normal DVT/pulmonary embolism survivor. I just turned 37, am a runner, organic/healthy eating Mom of three kids. I had a PE, two weeks to the day of my plastic surgery (breast augmentation and liposcuplture). I am currently on 7.5 mg of Coumadin daily and my INR levels have been pretty consistent. I just stepped on the scale tonight after feeling "fat" and was shocked to see I've gained 12 pounds in almost 6 weeks since starting Coumadin. Yikes! I am hungry all of the time. I've also had memory problems and my hair is more coarse. I hope I don't have to be on this for too long. They say 6 months for me. Good luck to every one.
-- By tannabo | Reply | Private Message me
March 26th
2009
11:19 AM
Thank you so much for this site... I thought I was alone and loosing my mind. I started on Coumadin in Dec 2008... after 3 months I am falling apart... I can't seem to get anyone to listen... I am tired and cranky, gaining weight faster than I can keep up... I have dizzy spells and headaches, nose bleeds and just an overall feeling of not being me... like said above me... I miss me. The symptoms are so similar to being depressed its hard to pull yourself out... its hard to explain to other people how you are feeling because your doctor continues to tell you it is all in your head... I am a mess.
-- By esqueishness | Reply | Private Message me
March 25th
2009
4:19 PM
I've been on Wafarin since September of 2008 because of a massive DVT stretching from my jugular vein to my right arm. Since the initial injection of Heparin and oral consumption of Wafarin I have experienced daily migraines. They seem almost like 'pressure-headaches' pushing on the sides of my head, temples, forehead and the bridge of my nose. My thrombosis doctors have sent me for Ophthalmology tests, MRIs, and plan to send me for Neurology tests as well to discover the cause of my headaches. They've put me on codeine, Tylenol 3's, Gabapentin, Naproxen, and Co Sumatriptan because of the fact that I'm so immune to painkillers in general (For the blood clot pains themselves, I was on Hydromorphone, Morphine and Codeine). Although the Co Sumatriptan along with the Tylenol 3's give me some relief, I can't help but wonder if the cause of my daily migraines are from the Warfarin itself.
My doctors are reluctant to agree with me, saying that they plan to take me of Warfarin within the next few months, but aren't certain of exactly when.
March 23th
2009
12:19 PM
Wow - I'm so glad I found this site. I am 43 years old and had a PE last August in both lungs - every test imaginable has been done and still no idea why I got the PE. I should be on Warfarin for the rest of my life but I can't stand it much longer. I have headaches every day, cold sweats, dizziness, can't remember things, can't concentrate at work and the WEIGHT GAIN! My doctor just tells me to eat healthier but watch those leafy greens! I get no support at all from her. She also put me on Cipralex for depression and I'm now considering going off both medications and seeing a Naturopath. I'm sick of feeling like I'm 80.
L.
March 22th
2009
3:20 PM
It has been a while since i have posted on here, however here goes. I am a 34 year old male taking warfarin for PE in left lung. I have been taking this stuff for 10 months now and fed up. The symptoms i am having are feeling extremely tired most of the time, feeling cold and very mild headaches. Also, i seem to have anxiety and depressive thoughts. I also have cold/flu symptoms which do not go away. furthermore, my hearing seemed to have diminished. I went to the doctors and they suggested having them flushed out. I went for this procedure, three hours later extreme pain, i received a middle ear infection and hardly any hearing now.
However, i do try to keep going, i play a Tuba in a Brass Band, a Concert Band, and now in a Symphony Orchestra. Got to have something interesting in life.
P.S I am also disabled due to having an operation on my spine five years ago.
March 20th
2009
9:03 PM
I was taking warfarin for about 2 months 8 mg daily due to a blood clot in my left arm, i also have witnessed headaches, dizziness, always tired and fatigue. I also told the doctor about all this and he said it's not the medicine, I don't know what else it could of been because i wasn't taking any other medication. my life remained the same as previous with the exception of the warfarin. Anyway, i discontinued taking the medication because it was killing me to take it. I will now have to take my chances.
-- By kumarie | Reply | (3) replies | Private Message me
March 19th
2009
11:07 AM
How long does it take to go back to working out?I had a DVT in my right calf a month ago.I am a 33yr old male.I am on 17 1/2 grams of warfarin they say my liver is good processing it.I now walk a mile and have shortness of breath and have to elevate my leg because the blood pools to my foot even when I just got the support stockings.I've used to run five mile a week and work out with free weights.I was advised to swim but I was wondering when I could got back to the gym or run outside?Does this last a while......? or for life? I usually bounce back from things I had cancer 5 yrs ago.I have the pressure stockings 30-40 pressure and they help a lot.The symptoms of baldness remind me of the chemotherapy.I am naturally bald any ways.So to all the DVT suffers keep your heads up there are always worse medical conditions that I see a lot....because I work in a medical feild.
-- By pashea | Reply | Private Message me
November 4th
2009
2:13 AM
I'm a 47yo female & sorry for putting this as a reply to another post - new here:
Gosh.. glad I found this place - have been taking Warfarin for AF for about 2 weeks now and have been slowly sliding down hill. Thing is you just never know when to contact a doctor hey.
My symptoms, bloating, weight gain already, light headed, blurred vision, have had numbness & tingling in right arm and leg, and now I'm slowly getting colder and colder, and have a high sensitivity to light. Just started my monthly cycle and it's literally flooding, and I have an awful pain in the left hand side of my neck - it's sharp and unbearable at times. Some days when I'm driving home from work I feel I should pull over, not sure what my body is going to do to me next. I lack concentration, am crabby most of the time (and was picked up on that today at work) - and very emotional.
I don't like this at all - at what point do I mention any of this without seeming like a whinger?
-- By aussiee | Reply | Private Message meI have a physical job, which has been reduced to 'light duties' due to the risks at the moment, which I'm grateful for. Today I bumped my thumb only slightly and it swelled up in a bloody lump - the blood has disappeared but the swelling is still there together with 'loose' skin where the originally larger swelling was. Everything seems just so weird.. I don't feel like ME any more - I want ME back :((