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Kez

Feeling a bit let down

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Hi all.

 

My name is Kerry, my friend told me about this group and has been telling me to introduce myself, so here I am.

I began with dizzy spells last year, docs thought it may have been my blood pressure and were keeping an eye on it. This went on for many months and eventually asked me to have a blood pressure machine on my arm for 24hrs.

 

The second day I had it on at work and I had the most horrendous dizzy spell I've ever had and had to go into the office an be sat down..I was sweating, shaking, couldn't lift my head, couldn't talk, felt so sick and had to go home.

Since then I've been in and out of the doctors for months until they finally sent me to Nottingham QMC as one doctor thought I had meningitis..I was terrified.

 

The outcome was I have migraines!

 

As these weeks/months have gone on the dizziness had increased and time off my jobs has. Never knew how bad migraines could be..

 

As it turns out I don't have migraines I have severe migraines that don't show any of the so called normal signs.. No lights, orbs, light doesn't effect me, I don't spend hours in a dark room. Nothing.

 

Then in the month of Feb - an ordinary day, I'd done my 2 jobs, got the kids from school, gone to the gym, come home and was cooking tea when all of a sudden the biggest pop/bang went off in my head and by the time I'd shouted " what the hell" I was on the floor, paralysed ..my kids were crying my partner was in shock I think he just kept telling me not to move. 20mins later I lifted my head and crawled up to my bed and feel asleep.

 

The following day I felt very fragile but walked to my first job but I began slurring my words and got confused to the point that the cook took me to the hospital. 11hours later and they said I'd had a thunderclap migraine and were keeping me in..until that is a specialist came to see me and said "no, it's just a migraine. Up your amitriptyline and go home" that was that!

 

I've been banging my head on a wall since then trying to get someone to listen to me, because no one wrote down I'd had a thunderclap migraine. All I keep getting is its just a migraine, up your pills and go home. How the hell are you meant to function when I'm popping pills like skittles???

 

Work are more involved and made me go to occupational health where that doctor told me in no uncertain terms that if I have one of those thunderclap migraine again I could die.. His words not mine!

He was amazed that i had not had another scan, that no one was talking me seriously!

 

Then Sunday, I had a text on my phone saying here's your reminder for your hospital appointment for today!!

So, I go thinking I'm going to be listened to this time. Someone is actually going to take in what I say...mmmm.

 

The good news is that I'm getting my MRI scan, the bad news is he's not at all worried and he thinks it's all from me turning 47 and "this age you know, things can go wrong"  his words not mine. He thinks I'm going through my change or my blood pressure is a cause or you know it's life and that's it!!☹️

 

I'm pleased I saw someone but left feeling like..it's just a migraine!!!  feel really let down.

 

Thanks to anyone who took the time to read about me xx

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Hi Kerry,

 

Welcome to BTG.  A thunderclap headache is very serious and it should be taken as such. It is dangerous.  How do you know you have had one?  Well, it's like no other headache you have ever had. It's sudden, it's very severe, sweating and problems with the light affecting your vision are just some of the symptoms I experienced.

 

You demand answers when you get to the hospital, don't just ask for them. Describe your symptoms and hopefully your scan will show what it is.  You should have gone to hospital by ambulance, not just up to bed.

 

I am appalled that they were so dismissive of you when what you describe are all classic signs of what we on this site all have survived. You have been very lucky so far but you cannot trust to luck, you need proper assessment and treatment as far as I can see. Make sure you get it.

 

Let us know how you get on.

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Hi Kerry,

 

Welcome...I began my hemorrhage with a thunderclap headache.  I was taken to the emergency room and a treated for migraine symptoms...they did do a cat scan which showed bleeding and I was transferred to a major hospital.  I am happy for you that you will get the MRI and the doctor not being worried is great but it certainly doesn't change the fact that you are.  

I hope everything goes well for you, please let us know how you are.

 

I wish you the very best.

Jean

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Hi Kerry,

 

So they scanned your brain.  So that must make you feel better

 

My Daughter lost her speech and it scared her so much she went and saw Doc, who sent her for a scan,   all clear.  She was so happy after that.

(She has had Migraines since puberty) 

Let's hope they can sort you out properly.  Also ask can they re assure you about scan !!  Put mind at ease.

 

Good luck Kerry xxxx 

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Hi everyone.. Well I have had a scan but last November, not since I had my thunderclap migraine though. I'm now waiting for my MRI scan. I'm hoping there's nothing but kind of want there to be something so I don't feel so helpless and can put a name to what's been wrong with me!

 

I'm not going to be ill but after nearly a year of being put to one side and given pills it would be good to say this is what the matter is and this is why I've felt so and this is the reason for the pain and dizziness and sickness.. Finally if have answers..

 

Thank you for your replies and Win I hope your daughter keeps well too.xx

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Hi Kerry,

 

Welcome to BTG, so sorry to hear of the problems you are experiencing.

 

I have to agree with all that Macca has said, this needs to be assessed properly, please don't let them fob you off, it's to easy for them to assume it's Migraine, they did that with me and were going to discharge me with Migraine meds, had it not been for a young doctor deciding to do a brain scan after my symptoms worsened things would have turned out very differently for me, that young doctor's actions most definitely saved my life.

 

As Macca said, you have been lucky so far, don't rely on that luck, you need answers, hopefully your scan will show up what the problem is and you will get the treatment you need.

 

Let us know how you get on. Good luck 

Love

Michelle xx 

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On 02/05/2019 at 18:50, Winb143 said:

Hi Kerry,

 

So they scanned your brain.  So that must make you feel better

 

My Daughter lost her speech and it scared her so much she went and saw Doc, who sent her for a scan,   all clear.  She was so happy after that.

(She has had Migraines since puberty) 

Let's hope they can sort you out properly.  Also ask can they re assure you about scan !!  Put mind at ease.

 

Good luck Kerry xxxx 

 

Hi.. Well I have had a scan but last November, not since I had my thunderclap migraine though. I'm now waiting for my MRI scan. I'm hoping there's nothing but kind of want there to be something so I don't feel so helpless and can put a name to what's been wrong with me!

 

I'm not going to be ill but after nearly a year of being put to one side and given pills it would be good to say this is what the matter is and this is why I've felt so and this is the reason for the pain and dizziness and sickness.. Finally if have answers.. Thank you for your reply and I hope your daughter keeps well too.xx

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Hi. So out of the blue last week I got an appointment reminder from Queens telling not to forget my meeting with a specialist last Wednesday..

 

Totally gobsmacked I was but I went and I spoke to this doctor and he's agreed to give me an MRI and an MRA scan.. anyone had one of those? I've never heard of one (MRA) so on the 29th may at 7.30pm I'll hopefully be getting some answers. The doctor still isn't worried he tells me things change when you get older and if he sees nothing then that's it, he says that's life! I've just got to deal with it.

 

Sunday, I had another.. Didn't hear a pop but it paralysed my head just like before. I couldn't move for nearly 20mins and when I did I crawled up stairs to bed. I really need to know what these things are and what's happening inside my head. Xx

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Hi there

 

Warm welcome to the site, I got told when I was trying to get the GP to listen your in your late 30's 'Its your age' 

Sadly you just have to keep on saying its not and your the best judge..

 

Yes I've had the scans they're nothing to worry about, YOU have to tell them what happened on Sunday don't dismiss it...

 

take care...

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I've had an MRI and CT also had an MRA but was out of it so cannot say what it entails, think one is a contrasting one  = MRA but could be wrong.

 

You need to know what's going on with head so good luck and let us know how you got on xxx

 

 Good luck 

 

Win xxxxxxxx

 

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Hi Kerry,

 

I hope that when you get your scans at the end of the month you do get some answers, although I'm hoping that a bleed of some description hasn't been missed. 

 

I had 4 of the thunderclap headaches, and a CT scan & lumbar puncture both came back clear after my admission to hospital after the 2nd one. I was discharged after one night and then ended up back in A&E just 10 hours later with headache 3. It was at this point the neurologist on call booked me in for an MRI but I had one more headache before this happened. I feel very lucky in the care I have had, although a migraine sufferer for 20+ years, and being on the cusp of 'that age' I always felt listened to.

 

I think it does come down to areas & individuals as my father's recent brushes with the NHS haven't been so great.

 

Again, I don't know whether to hope nothing is found so you have reassurance that you haven't been misdiagnosed for so long or whether finding a cause would be better. Do you have a different GP at your surgery you could see, or is there a headache clinic at your hospital that you could ask to be seen at?

 

hoping you feel better today from Sunday's pain,

Sarah

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Kerry, darling, I told you that if this happens again, then you get yourself to A&E you don't crawl to bed.  I'll be having words with you at work tomorrow young lady!!

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22 hours ago, Skippy said:

Kerry, darling, I told you that if this happens again, then you get yourself to A&E you don't crawl to bed.  I'll be having words with you at work tomorrow young lady!!

 

And I shall be hiding...I didn't get the pop this time but it still took me down for 20 mins.. I'm so worried about about my jobs babe you know that and I know, in fact I can hear you shouting, it's my health that comes first! I know, I know and ok I'll deserve my wrist slap! I'm sorry! X

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22 hours ago, SarahLS said:

Hi Kerry,

 

I hope that when you get your scans at the end of the month you do get some answers, although I'm hoping that a bleed of some description hasn't been missed. 

 

I had 4 of the thunderclap headaches, and a CT scan & lumbar puncture both came back clear after my admission to hospital after the 2nd one. I was discharged after one night and then ended up back in A&E just 10 hours later with headache 3. It was at this point the neurologist on call booked me in for an MRI but I had one more headache before this happened. I feel very lucky in the care I have had, although a migraine sufferer for 20+ years, and being on the cusp of 'that age' I always felt listened to.

 

I think it does come down to areas & individuals as my father's recent brushes with the NHS haven't been so great.

 

Again, I don't know whether to hope nothing is found so you have reassurance that you haven't been misdiagnosed for so long or whether finding a cause would be better. Do you have a different GP at your surgery you could see, or is there a headache clinic at your hospital that you could ask to be seen at?

 

hoping you feel better today from Sunday's pain,

Sarah

 

Hey Sarah, thanks for that..I think and I hope this doesn't sound bad but I want there to be something just so I can say to the three doctor's that have seen me, see I told you I wasn't lying or exaggerating which I feel they are thinking as they tell me to have faith in the pills or I've not had these long enough yet to try anything different.. So frustrating I can even begin..🤦 

Anyway I'm hoping I can last till 29th without another episode.. Fingers crossed xx

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21 hours ago, Kez said:

Hey Sarah, thanks for that..I think and I hope this doesn't sound bad but I want there to be something just so I can say to the three doctor's that have seen me, see I told you I wasn't lying or exaggerating which I feel they are thinking as they tell me to have faith in the pills or I've not had these long enough yet to try anything different.. So frustrating I can even begin..🤦 

Anyway I'm hoping I can last till 29th without another episode.. Fingers crossed xx

 

It doesn't make you sound bad at all, and to be honest I was relieved when my most recent scan did still show a large damaged patch in my brain, after a year and with no outward signs of what was going on I could feel people starting to question why I wasn't able to work at my old job, why I was still complaining of pain etc. Something physical does give you validation even though you shouldn't need it.

 

Regardless of job worries etc I do echo the above advice of taking yourself off to a&e , it all gets added to your file and someone different might have a new idea or diagnosis...

 

take care

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Wow.  What a story.  I wish you health most of all.  I hope they can find whatever it is that is causing this and that it is nothing serious.  Whatever it is, stay strong and stay in touch with us.  As you said, finding something is sometimes better than not knowing, so you can effectively treat whatever it is.

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Hey Chris. 

 

Thank you for that. I do hope there is something, I feel I'm not myself but I can't make anyone understand how I'm feeling. It's so difficult to find the words to describe the feeling in my head, of I say dizzy they go to vertigo or migraine and I don't believe it is. I just don't feel me! I do want to say HUGE THANKS to everyone who has replied to me. This is the first group that I feel actually hears me.. Loving all of you right now x

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Told you this group was amazing Kerry - how do you think I got through it all xx

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