scared

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hi, so this is my story and thank you to anyone who takes there time to read this. so March 2016 I started with pain in my head left hand side, had a mri scan done everything came back normal, September 2016 this pain went away.....March 2017 it's back again this time with severe dizzy fuzzy head 24/7 with no relief....I got pregnant September 2017 all my symptoms went away in pregnancy....had the baby may 2018....all symptoms returned June 2018. I'm still dizzy now. constantly dizzy constantly have this one sided head pain. tried lots of tablets....vertigo tablets...beta blockers....anti depressants...pain killers....nothing takes this dizzy feeling away in my head...my eyes go heavy. I have stroke like feeling down the same side of my face that the head pain is on. I feel sick everyday and feel constantly exhauseted. had full blood count done before pregnancy everything was ok. my doctor keeps telling me it's anxiety but I know it can't be because it went away in pregnancy all symptoms did. I cry everyday I feel like I cannot go on like this. so my question is would anyone be kind enough to tell me there symptoms of a brain tumour please? or is anyone else having the same as me? I'm waiting to see an ENT now. x

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  • Posted

    Your description of your complaints matches migraine 1:1, possibly the hemiplegic variant. Especially the fact that your complaints went away during your pregnancy since hormones play a big role in migraine in women.

    Take a look at the site of the Migraine Trust, there is lots of info there. And find yourself a proper headache specialist. The average neurologist has no clue about migraine and other headaches. I experienced this myself, I went the same route as you, including the ENT. I'm still glad I didn't take the antibiotics he prescribed, it wouldn't have helped and only would have destroyed my gut microbiome.

    I take Boswellia Serrata tablets, Magnesium, vit. B2 and fresh Ginger tea everyday and have it under control now. I also avoid any radiation from cell phones, DECT phones, Wifi etc. During my periods it still pops up sometimes, but during those days it isn't half as bad as before. It used to drive me nuts and I lost the will to live, but now I can handle it and know what it is and what to do when it pops up. I wish the same for you.

    Good luck with finding a headache specialist, and let us know how it goes.

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    • Posted

      I know that feeling, it is like all systems are shutting down, which makes it hard to take care of oneself. But I sincerely hope you manage to get an appointment with a headache specialist. Maybe I'm wrong in my suspicion that you suffer from migraine (though I'm quite sure about it) but at least it would be sensible to rule it out.

      Hang in there, you are not the first person who suffers from this, there will be a solution for it. First make sure you get the right diagnosis by the right kind of doctor. The more rare kinds of migraine (like hemiplegic of vestibular migraine) often take a long time to get diagnosed because neurologist don't see them often in their practice.

      May you can ask a friend to support you in finding the right doctor? I know it is hard to even think straight when you are suffering from this, let alone taking the initiative to try taking things in another direction.

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  • Posted

    hey keira. so sorry to hear about what you have been through, it sounds terrible. the GREAT news is, your symptoms have been going on long enough for that a malignant brain tumor is pretty much out of the question guaranteed. the worst kinds grow very quickly, symptoms don’t ever get better they keep getting worse over a period of just 1-3 months, usually shorter. They are also fatal within ~3 months if not treated and you’re still around so whatever you are dealing with is not worst case scenario, i can assure you that!  your MRI at the beginning of your symptoms was clear so that’s always a good sign. I know a lot about brain tumors, not much about anything else but i have heard hormonal issues like thyroid can cause similar symptoms. could also explain how you saw relief in pregnancy. again, brain tumor symptoms don’t usually come and go or improve. there are rare expections and that’s when the tumor is extremely slow growing and benign, meaning no cancer. it gets removed and doesn’t come back and you go about your life but again this also sounds like it wouldn’t apply for you since you had such a long period of relief and a clear MRI. i wish i could tell you a definitive answer but i do know that  your worst fears will not come true and this is likely something else. MS, thyroid, auto immune, hormonal imbalance, who knows...keep seeing your doctors and request for treatments or scans that will make you feel better, but i am confident this is not what you are fearing! 

    source: my best friend passed away from GBM Stage 4, the most aggressive brain tumor which is almost always terminal outside of a miracle. we researched and learned so much in order to support her. 

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    • Posted

      I'm so so sorry to hear of your friend that is heartbreaking. thank you so much for your reply to me and taking the time to read my post. my doctor keeps putting it all down to anxiety which I know it isn't because it went away in pregnancy also I've had a stillborn baby in 2012 so I think if it was anxiety I would of definetley suffered through my pregnancy. I feel awful everyday and it's so hard to get even household chores done. I literally feel like I'm going to collapse all of the time. I've also seen a cardiologist and all tests came back normal. my doctor told me if the ENT doesn't find anything then she will refer me back to the nuerologist. xx

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    • Posted

      thank you xo and again i’m sorry to hear about how stressful this situation is for you...you’re a mother and have lots of responsibility i’m sure. as another user posted with their experience, it could be a lot of things causing your symptoms but I would confidently bet that brain tumor is not one of them based on the pattern and length of your ordeal. keep visiting your doctors and keep us posted, stay strong, don’t push yourself too hard as a new mother in pain.... i fully believe you will overcome this when you get the right diagnosis and treatment!!! 
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  • Posted

    Linda I can't see what you've wrote it says it has to be moderated?

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  • Posted

    Do you get neck/shoulder pain at all? I ask because I've been having head pain , dizziness, nausea and a whole host of other things going on. I was told migraine, then tension headaches and even anxiety. Had bp done and it was very high so was put on medication but still no change in the way I felt. Another doctor ordered an xray of my neck and it showed severe osteoarthritis in the neck and also slippage in the neck. She said all this will cause Cervogenic headaches and all the other symptoms I'm getting. I've now been referred to a Neurologist.

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    • Posted

      hi Jane, I don't get neck or shoulder pain but I do get alot of spine pain and back pain from waking up. but not sure whether that is down to having a epidural needle in child birth. I am only a 30 year old woman but I actually feel above 60 the way my body is. it's letting me down at the minute. my doctor won't refer me back to the nuerologist until I've seen the ENT. she still thinks it's anxiety even though I've been on anxiety medication with no relief. x

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