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elizabeth 321 06-22-2011 07:17 AM

Re: Yasmin and my cerebral venous sinus thrombosis
Hi all. I've been searching for info for over a year now especially from peeps who have gone through this. I had extensive cerebral venous sinus thrombosis back end of Feb 2010 and have been left feel yuk about the whole experience every since. From the ambulance drivers who thought I had taken an overdose and or drunk to A and E who thought I just had a migrane even though I kept shouting to them the pain was off the scale and made me wait 6 hrs before giving me any pain killers?
I started with earache and could hardly move for 3 days then day 4 felt so much better,went shopping cooked evening meal no bother I then collapsed with a thunderclap head which I have never experienced pain like it dispite having given birth to 3 children.
I have been given very little info from doctors bar the specialist that treated me in hospital and I was so out of it I can only remember he had a swedish accent:eek:but thanks to him and his knowledge after being transfered to a hospital I am here today to have a good moan:angel:
All I can tell you that the thought from him was it was the depo provera that caused this not and ear infection as although the ear pain was intense there was no obvious signs of an infection. I know it was behind the ear on the right side of the brain that it had stated to recanalise when I was in hospital and 6 months later the grey matter on the scan had decreased 9 months later it had gone.
Ok so warfarin 6 months all tests for blood clotting disorders/health conditions that could cause future clots were either border line or negative. I am left with poor memory and concentration sore ears and popping from them,sudden headaches funny fuzzy feeling and i go into my own world where I am known to stare into space but don't actually know I am doing it.

I am going for another MRI in a couple of days as I feel so yuk they are checking me out to make sure nothing happening again fingers crossed its just a virus effecting my weak points

Take care all

Jewelryfreak 07-13-2011 08:30 AM

Re: Yasmin and my cerebral venous sinus thrombosis
Hi Elizabeth 321,

How are you feeling now? How was your MRI Result?

Take Care.

elizabeth 321 07-14-2011 01:30 AM

Re: Yasmin and my cerebral venous sinus thrombosis
Thanks for asking,Phoned my gp Friday to be told results weren't back yet? there wasn't a radiologist (sorry about the spelling) there when I had my scan this time and can only think that is the reason for the delay. I would have thought by now I would have gone down with a thunderclap if it was a clot again so looking on the bright side I will be ok but still feel yuk,taking pain killers all the time for the head pain which isn't going to do me any good but what else can I do? I have to keep going as kids to look after just hope they get to the bottom of it sooner rather than later and enjoy life as much as I can.
Hugs to all xx

Caree8 07-14-2011 07:22 AM

Re: Yasmin and my cerebral venous sinus thrombosis
Hi Elizabeth 321,

It is sounding like you may have had a clot in the right transverse sinus? That's where I had my clot, most likely caused by the birth control pill I was taking (yasmin). I too have recanalized and no longer have the clot but have residual symptoms that are really has been 2 years now since I had the clot. I'm interested to see if anyone else is experiencing symptoms close to mine - I too have headaches that can be unbearable but I was wondering what you meant by "funny fuzzy feeling"? I have trouble concentrating as well and often feel really out of it, what I like to describe as somewhat of an "altered state of consciousness"...I feel like I am in a dream and have trouble remembering what I just did, what day it is, etc. It's a terrible feeling but thankfully it comes and goes. I also feel sensations of movement that never really go away but vary in intensity...I haven't found anyone else who has been left with something similar. I am unable to drive and continue to work only because I work from husband often has to help me shower and I feel terrible on most days...don't even enjoy being left alone as I can start to feel so out of it and confused. Even though it has been two years, I am hopeful things will get better. Can you relate in any way?

I hope the best for your recovery and that you hear back regarding your MRI soon!

Caree8 07-14-2011 07:40 AM

Re: Yasmin and my cerebral venous sinus thrombosis
Hi Regan,

Thanks so much for sharing that information and sorry for not getting back to you right away!

How are you doing, by the way? I hope your health continues to improve.

To answer your question regarding migraines, I am not sure if I was a migraine sufferer prior to my diagnosis. During and after college, I certainly developed pretty strong headaches, but I never took anything for them or went to see a doctor. I actually never had health problems prior to my diagnosis so I hadn't even established care with a primary physician.

I am so grateful to have found this forum as well; of course none of us would wish this on someone else but it is so nice to be able to share our stories and give each other encouragement.

I can certainly relate to the "spaced out" feeling...I have a difficult time explaining it as well and it is not a grogginess but literally an "altered state of consciousness"...I feel like I am in a dream and I have a difficult time remembering what I just did, what day it is, etc (but I always remember! just takes a while). Thankfully, it doesn't last all day. Prior to my diagnosis/treatment, one of my main symptoms was the foggyheadedness, so I am glad that has gotten better. I have yet to find someone who can relate to the sensations of movement...I don't wish it upon anyone of course, but I'd love to know I am not alone.

I think you brought up an important point regarding the complexities of the brain and how unique the symptoms can be as a result. I think there is so much the medical community has yet to learn about the brain but I do find it unfortunate that some doctor's aren't willing to admit that. It makes perfect sense for a brain which has been through trauma like ours to have some quirks afterwards. I just wish we knew enough to find out more about it and to be able to guess at a possible prognosis. Given that I no longer have the clot, my prognosis is good...but then has been two years now and I am still unable to drive and am still dealing with very debilitating symptoms. I can only hope for the best.

[QUOTE=oregano007;4730037]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,

elizabeth 321 07-15-2011 02:05 AM

Re: Yasmin and my cerebral venous sinus thrombosis
Its amazing how we all have similar symptoms that we have been left to live with yet were told nothing about life after a clot. When I was first discharged from hospital I felt so alone and even now feel no one understands me even my family. I'll try go through a normal day and see if it makes sense to anyone or anyone can relate to
6am get up sit on the side of the bed for a few mins to get my balance and oreantation
Go down the stairs one foot at a time holding onto the banister very carefully as I feel drunk/vertigo.
Sit for a good 1/2hr with a cuppa to try bring myself round(this isn't like the everyday half asleep when you get up it's a fuzzy drunken feeling that my body and my brain aren't joining together)
Shower still being careful not to bend over too quickly as still feel fuzzy
Start on the kids going over and over again in my head who needs pe kits/packups/bus money etc this I find extremely difficult now as with all the noise and bussle of everyone at once my brain just gives in somehow?
Get them off to school/college/work then collapse on the sofa for an hour to think whAT I need to do during the day:dizzy:
This is all different to me before I used to be a mum who was in control knew dates without having to write in my diary,had birthday cards ready a month in advance,knew what we were having for meals a week in advance drove everywhere without a thought,cared for all the animals can't remember even now I'm typing what the heck I'm on about,can't hold a conversation without thinking mid sentence can't remember christmas,my eldest kids 18th birthday and the more tired I get the worse I get. Then during the day I'll suddenly get a sharp pain in my head or my ears will suddenly start popping is this making sense to anyone :confused:
Physically as I say I'm left with sudden headaches,I don't like what were my favourite foods anymore,dizziness vertigo,ears popping,tiredness yet people say to me how well I look.
I don't want sympathy or do I feel sorry for myself but an understanding or someone to say to me thats normal would be good. Everyday seems the same or if I do have some relief and have a good day for the next week it seems to hit me like a train

Caree8 07-15-2011 07:52 AM

Re: Yasmin and my cerebral venous sinus thrombosis
Elizabeth 321,

I am so sorry to hear you're having to go through all of that. If it makes you feel any better what you are describing sounds VERY familiar to me. The only symptom of yours which I do not have is the popping ears (although I did have a period during which I had pretty bad ear pain, which went away). I can relate to what you're going through in so many ways....feeling like even those closest to you can't really understand what you're going through, especially because you "look so well/healthy" on the outside. That's probably the worst part. It is only on the worst days that people can tell I'm not doing well as I have trouble walking and start acting more confused outwardly.

As mentioned previously, I work from home and would not be able to work otherwise. My sensations of movement/vertigo can be so severe that I often have to have my husband help me shower. I can't sit upright most of the time and can't sit at a desk while at work - I sit on a futon and use a laptop. I feel so strange for most of the day, similar to the "fuzzy" feeling that you describe...I just describe it as a foggyheadedness or even an altered state of consciousness. It is unlike anything I have ever felt is extremely scary and among the worst feelings I have ever had in my life. The strange thing is that I am fully capable of having conversations, etc - I just FEEL so messed up and so out of it (have to keep reminding myself what day it is, what I am doing, etc.). I feel like I am going to have trouble talking but I don't...I've only had one or two instances during which my tongue felt a little heavy and I had trouble speaking.

Prior to my diagnosis, I had this feeling all of the time and thankfully, I don't experience it all of the time (about 70/30 now)...but what I do have most all of the time are the sensations of movement/vertigo. I feel like I am slowly turning to the right and the feeling is made worse when I close my eyes or at night when I try to go to sleep. I also generally feel better when I am riding in a car or am in motion but the feeling gets worse after I stop moving. I know what you mean about having trouble walking up or down the stairs....the same thing happens to me on bad days. For a while, I had such a difficult time walking that I couldn't stand upright. I also get the sharp pain at the back of my neck/head. It's horrible to feel this way and not know what the outcome will has been two years for me and even though the foggyheadedness has gotten better, I still deal with it every day...unfortunately, my vertigo hasn't gotten better. As with you, I do have better days but they are always followed with weeks of feeling worse. I hope that at some point, the good days will outweigh the bad ones.

I am sure you wish you had answers....but I guess sometimes we can't get them. I guess modern medicine still fails us when it comes to the brain...I find it so strange that we can no longer have the clot but have all of these residual symptoms. I guess it is just nerve damage or the brain trying to get its system back in check. The brain is amazing and there are so many inspirational stories...I only HOPE that our brains can figure it out and give us back the quality of life we used to have...for now, at least we have a forum like this where we can share our stories and know we are not alone. On that note, do you mind describing to me what your vertigo feels like? Also, where was your clot - I think we may both have had it in the same location....the right transverse sinus?

I wish us all only the best...

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