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  • Yasmin and my cerebral venous sinus thrombosis

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    Old 08-16-2010, 08:32 PM   #1
    ChiJenn
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    Yasmin and my cerebral venous sinus thrombosis

    Good evening. I'm so glad I discovered this board!

    I visited my doctor 3 weeks ago with intense pain (9 on a 1-10 pain scale) on the left side of my head and was sent for an MRI and MRV. The MRV showed an 8-inch blood clot in my left venous sinus and I was immediately led down to the ER and admitted to the hospital. I spent a week in the neuro unit, 4 1/2 days of which were in the ICU on that floor. I was treated with blood thinners and will be on Coumadin for sometime.

    The main culprit has been identified ... the birth control pill, Yasmin. Needless to say, I broke up with oral contraceptives the second I went into the hospital.

    While this is considered to be a rare condition, I am already aware of 2 other people who had the same issue with the same cause. PLEASE CONSIDER THE RISKS WHEN GOING ON THE BIRTH CONTROL PILL.

    I'm thankful and blessed to have had the clot identified and to have received the care I needed to recover. I certainly have fears and anxiety over such a shocking event, which I deal with day to day. But, overall, I'm just thankful.

    If anyone has experience with this condition, I would welcome to hear your insights and advice ... And, most of all, I hope you're well!

    Thank you for reading,
    Jenn

     
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    Old 10-07-2010, 09:51 AM   #2
    Caree8
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi Jenn,

    I too suffered CVST (of the right transverse sinus) last August while taking Yasmin - I'm really interested in getting touch with you as I have a couple of questions regarding any lingering symptoms you may have (eg do you still have the clot? are you back to normal health?).


    Thanks!

    Last edited by Administrator; 10-07-2010 at 12:43 PM.

     
    Old 11-03-2010, 12:07 AM   #3
    givemenovacaine
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    Re: Yasmin and my cerebral venous sinus thrombosis

    I used to take yasmin and let me just say that that pill gave me hell!! I had so many bad symptoms on that thing: Severe depression (i was crying every day about nothing multiple times), temper tantrums getting out of control, and a strange craving for alcohol for all types in the morning and evening even though I hated beer I wanted beer even! This pill really messed me up for like a few months earlier this year. Anyone who takes this pill be careful and read up on side effects and really do your homework before you take it!!

     
    Old 11-03-2010, 08:29 PM   #4
    ChiJenn
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi Caree8. I'm sorry for the late reply ... I started at a new job a few weeks ago and life has been crazy!

    The short answer to your question is:
    Yes ~ I still have the clot, although it's improving in both size and blood flow.
    Yes and No ~ I'm somewhat back to normal health. After going back to work, I suffered pretty serious headaches and dizziness, so I had to pull back on some of my activities. Other than that, I'm doing pretty OK!

    How are you doing? How long has it been since your clot was found?

    Wishing you the best,
    J

     
    Old 11-05-2010, 02:05 PM   #5
    Caree8
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi Jenn,

    I am so glad that you responded to the post - I was hoping you would! I have been trying to reach other to others with CVST (especially those who most likely had/have theirs as a result of the yasmin!) to see how their recovery process has been going as I'm unfortunately still dealing with some pretty strong residual symptoms.

    I am sorry to hear you still have the clot, how long ago did this happen to you? My clot appeared on an MRV in September of 2009 although we believe I may have had the clot for a few weeks prior to its discovery. I spent 9 days in the hospital and on my initial MRI/MRV follow up 2 months later it appeared that my vein was starting to re canalize. We had some higher Tesla strength MRV's/MRI's performed at the Mayo clinic in Rochester and my clot has now fully re canalized. Unfortunately, even though my residual symptoms aren't as strong, they are still affecting my life quite tremendously which is why I've wanted to reach out to others and ask them to share their experience with me. I've done so much research on CVST but nothing compares to being able to share your experiences with someone who has gone through the same thing.

    I have so much to say but am trying to keep it to a minimum - I really would love to hear more about your situation, especially about your headaches and dizziness (or any residual symptoms!). I know many people are left with migraines after these events but I'm most interested in what you mean by dizziness - I've been dealing with pretty strong sensations of movement and occasional vertigo that is almost continuous....have you dealt with anything similar?

    So glad I found this post and thanks again for your reply!

     
    Old 01-25-2011, 01:48 PM   #6
    Shandee77
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi Jenn,

    Thanks for sharing your story and I feel your pain. I too was diagnosed with a Cerebral Venous Sinus Thrombosis. I have been looking all over the internet for people with this condition and haven't been able to find much. I am glad I am not alone- because I have felt very alone for a year now! There isn't much information about this available so it is a difficult diagnosis.

    I was admitted to the hospital in January 2010 with a very severe headache, vomiting, etc. I experienced a Cerebral Venous Sinus Thrombosis and Pulmonary Embolism. My Pulmonary Embolism has since disolved. I had a follow up MRI/MRA in July of 2010 which showed about a 50% improvement for the Cerebral Venous Sinus Thrombosis. I just had another MRI/MRA earlier this month, and this MRI did not show any change/improvement since July. They are attributing my CVST and Pulmonary embolism to oral contraceptives as well. I went off of them immediately. I am not a smoker and under 35 so I didn't think I was at risk.

    I would love to keep in touch and check in with everyone who is going through this. Having a support network is key. Family and friends are great- but it helps to talk to people who are dealing with this everyday.

    My advice is be strong, do your research, and take care of yourself and your health!

    Hope to hear from you,

    Shannon

     
    Old 01-25-2011, 01:59 PM   #7
    Caree8
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi Shannon,

    I am so sorry to hear you're having to go through this....

    Which of your sinuses was involved? Do you still have any residual symptoms?

    I was diagnosed with CVST of my right transverse sinus in July 2009 and even though my vein has re-canalized I'm still left with some pretty awful residual symptoms which make it difficult to live life to its fullest. Outside of feeling "foggy" headed and getting headaches, I can't seem to shake the strong sensations of movement and vertigo which I battle with daily....I'm interested in finding out whether anyone else is suffering from similar residual symptoms...

    Hope you're doing well and thanks for sharing your story.

     
    Old 02-02-2011, 12:14 PM   #8
    Natalie Alves
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi

    I work for a research study at the univeristy of miami studying a disease that deal with abnormal clotting (thrombotic storm) Just wanted to let people out there know more about it. Its really rare and in most cases it occurs in unusual places such as cerebral sinus. Did you all respond well to anticoagulation? Just curious.

    Thanks!

     
    Old 02-03-2011, 12:39 PM   #9
    Shandee77
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi Caree8,

    Thank you for your email. I am sorry that I haven't been able to reply to you until now. My clot(s) were very extensive. I had a very dull headache that would come and go, but that Monday when I was admitted to the hospital the pain was unbearable and extremely scary. Fortunately I went to the hospital when I did. My clot involved several of the sinuses/veins on the right side of my brain. I had clotting in the right transverse sinus, sigmoid sinus, confluence of sinuses, and inferior jugular vein. As of July 2010, I had some improvement in many of the sinuses, but on my January 2011 MRI/MRA there is still some haziness that shows. My neroulogist believes at this point it is probably scar tissue. I was really hoping that I would have 100% recanalization, but so far it doesn't look like that will happen. I am hoping it will improve more but I am not sure! It will be a miracle if it does! The doctors also want to take me off Warfarin, since I have been on it a year and they don't think I will have any additional risks. I have not stopped taking the warfarin yet because I am seeking a 2nd opinion on that.

    Most days I feel pretty good, considering the extensiveness and seriousness of the clotting I had. I will get headaches, but they are minor and tylenol helps! Because I have scar tissue/residual damage my head does feel strange sometimes. Sometimes I will feel lightheaded or a little dizzy. I notice this more when I am stressed or tired. I find that staying hydrated helps- I tend to drink more water than I used to and it helps alleviate some of the symptoms. I also try to get at least 7 hours of sleep every night. That tends to help too!

    I hope you continue to improve and do well. Please stay in touch!

    Take care,
    Shannon

     
    Old 04-08-2011, 08:46 PM   #10
    oregano007
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hello Ladies,
    I am also very happy to have found this message board. Although I was not on Yasmin, I was on another estrogen-based BCP and developed extensive cerebral venous thrombosis in July 2010. 30-yr old, non-smoker, marathon runner. Boy was I shocked with the diagnosis!

    I spent 6 days in the hospital and then 7months on Warfarin therapy. I have been told that I've had re-canalization of the veins but still suffer from strange symptoms and haven't really been able to get back to my life 100%. It was comforting to hear that I'm not the only one that has experienced these symptoms following re-canalization.

    Thanks for posting ladies and feel free to contact me.
    Regan

     
    Old 04-12-2011, 12:57 PM   #11
    Caree8
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi Regan,

    I'm so sorry to hear about your diagnosis although I am glad your clot was found and that your veins did re-canalize.

    May I ask where your clot(s) was/were and what symptoms you're still experiencing?

    I was diagnosed with CVST of the right transverse sinus in September of 2009, was in the hospital for 8 days and stopped warfarin in January 2010 after my vein had re-canalized. Since then, I've had strange symptoms as well....sensations of movement and occasional vertigo which come and go but never fully disappear; nausea; confusion/foggyheadedness; extreme fatigue, etc. Are you experiencing anything similar? I know it's normal to be left with headaches for a few years after the event but I'm trying to reach out to others to see if they've gone through and/or are experiencing any strange symptoms, especially post re-canalization.

    Looking forward to hearing back from you and hope you're well.

     
    Old 04-12-2011, 01:13 PM   #12
    Caree8
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi Natalie Alves,

    I had never heard of thrombotic storm before. In my case, I only had one blood clot in the right transverse sinus which re-canalized after 3 months of anti-coagulation therapy. I was highly resistant to Warfarin so I had to take a pretty high dose but outside of that, nothing abnormal to report. All of my labs regarding acquired or hereditary clotting disorders came back negative. I did have pretty strong chest pains shortly after I had gotten out of the hospital and there was a chance I may have had a pulmonary embolism but it was never looked at further given that I was already on anticoagulants.

     
    Old 04-12-2011, 01:28 PM   #13
    Caree8
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi Shannon,

    I just now saw your response - thank you so much for your reply!

    I am glad to hear you're progressing and that the doctors are considering taking you off of the anti-coagulants. Have you had tests done to rule out any possible acquired or hereditary clotting disorders? I had those done prior to getting taken off of warfarin and shortly after just to make sure I wasn't at risk. I'm sorry to hear you haven't completely re-canalized...do you happen to know what Tesla strength your MRI's/MRV's were taken at? I had my first follow up scans done with a 1.5 Tesla strength machine and it appeared that I had only partial recanalization but when I when to the Mayo clinic in Rochester, they performed a scan with a 3 Tesla strength MR machine and the difference in image quality was amazing. If you're able to have a 3 Tesla scan done so you have a clearer idea of what's going, I'm sure it would help ease your mind about going off of the anticoagulants.

    Thanks as well for sharing your experience regarding your residual symptoms. I too drink a lot more water than I used to and feel it makes me feel a little better. Are you able to tell me in more detail what you mean by your head feeling strange sometimes? I feel I say that a lot as well but can't quite describe it. Do you ever have extreme fatigue/foggyheadedness or feel any type of sensations of movement? I often feel like I've been on a boat and when I close my eyes I feel a slow rotation (a bit like the drunk spins)....it's awful. I'm just wondering if anyone else has/has had similar symptoms...prior to getting this clot, I was a healthy 24 year old (5'8", 130 lbs) with no medical issues and now I'm 26 still dealing with these strange and often debilitating residual symptoms even though I have recanalized.

    I hope you're doing well and getting better each day!

    Last edited by Caree8; 04-12-2011 at 01:32 PM.

     
    Old 04-13-2011, 08:14 PM   #14
    oregano007
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi Caree8,

    My diagnosis was almost complete blockage of the superior sagittal sinus (main vein through the middle of the brain) as well as extensive clotting in the right transverse sinus region. I was admitted to hospital on my 5th visit to the emergency room after 12 days of excruciating pain. In the last few days I also started to develop stroke-like symptoms (loss of feeling in limbs and face and periodic loss of vision). I have had migraines since I was 12, so my pain kept getting diagnosed as a migraine. Just curious, were you a migraine sufferer before your CVST diagnosis?

    I was diagnosed in July 2010. I had increased pressure in my brain which caused papilledema (which caused me to have double vision - however, that went away once the pressure in my head decreased). A followup MRI/MRV in Sept 2010 showed improvement and then another MRI/MRV in Jan 2011 showed enough recanalization that I was taken off Warfarin in Feb 2011.

    I was doing pretty good in January and now I've felt worse since I came off the Warfarin and I have been very frustrated with how I've felt since February. My main symptom that I have is a sharp pain on one side of my head and lightheadedness and visual disturbances (black spots) if I stand up too soon (or stand up at all after sitting for a period of time!). I also still have headaches that range from 1-5 and are quite frequent. I can go a few weeks with relatively no headache and then have a headache for a few weeks straight. I do find that lots of water and sleep can help me to feel better too. Oddly, I've also found that exercise helps.

    I have not had any vertigo or sensations of movement. However, I can certainly relate to foggyness or confusion. I definitely have noticed that my memory has decreased (I forget things ALL the time) and I have difficulty concentrating or focussing on things. Plus, sometimes I just have a "spaced-out" feel that I can't explain to anyone. Perhaps you know what I mean? Oh, and fatigue - lots of that!

    I think we are all in a very unique situation and doctors cannot predict our post-recanalization symptoms because the brain is such an unimaginably complex system. Our veins are all unique and thus, our clots would also have been unique. Therefore, it is impossible for any doctor to predict what symptoms each of us will experience. I have been trying to do research on the internet, but am surprised at how little information is out there. It's SO NICE to hear from other women going through what I'm going through. Well, not that you had clots (I don't wish that on anyone) but it's nice to have someone to talk to about it.

    Keep smiling! As crappy as the experience has been (and continues to be), just remember that death could have been one outcome. But we're all still here so it can't be all that bad. :-)
    All the best and I hope your symptoms go away for good,
    Regan

     
    Old 06-05-2011, 07:27 AM   #15
    subhash22
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    Re: Yasmin and my cerebral venous sinus thrombosis

    Hi All,

    I am subhash 24 yrs old, i was admitted in hospital on may 4, 2011 to may 27 2011, for CVST @ a finest Hospital of my city.
    i was having chronic headache since 1 month but i thought i got a specs cuz i had a double vision problem from quite few months !! but on 2 of may my headace ( on left side) got worse, with mild fever,vomiting and loosing consciousness. my father took me to hospital and then i admitted i told doctor about the problem, then Dr investigated and wrote for sum test which included MRI, till this time i lost my consciousness totally and i was admitted in ICCU only on 5th day i got some scenes, and i asked my father what happen to me he said in simple term that i am suffering from a blood clot in brain n mine medication has been started,Drs have performed Lumber puncture twice on me and removed 30ml of clotting then on 6th day i was took to ophthalmology for eye test, reports showed congestion in eye nerve.

    blood thinner injections were given to me thrice a day @ hospital and everyday blood was taken for checkup to check INR which shud me maintained upto 2.5 to 3

    At the time of discharge doctors have adviced me to drink @least 3ltrs of water everyday, protect myself from sun by wearing a cap and dark glasses, a good sound sleep of @least 7/8 hrs and homely diet no outside food.

    After discharge of 1 week i was having headache again and again i was admitted in the hospital for 3 days and the Dr found that INR has dropped to 1.0 blood thinner injections started for me again for 2 days only, but even though i was having headace Drs discharged me saying that countinue this TAB : warfrin 5mg empty stomach, diamox , and lets me on 7 of july.

    Its almost a month now and my headache still continues not huge on scale but 2/5, and also double vision not solved

    I REQUEST ALL THE MEMBERS IN THIS POST DAT PLS SHARE YOUR THOUGHTS AFTER ALL THE MEDICATION HOW DU FEEL AND WHAT ALL YOU DID TO SOLVE THIS PROBLEM.

    Thanking you all..................................... ...............

     
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