Migraine and Topiramate. Pituitary tumour .

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I have Been on this fantastic site before regarding my debilitating migraines and Topiramate.

I was put on Topiramate 18 months ago by my neurologist to help with my migraines that I was getting about 4 times a week , the feeling of exhaustion was really hard to deal with day to day and being a single parent to 3 children .

Topiramate, I found extremely difficult to adapt to, and just couldn't handle a dose of more than 25 NHS per day , over that I would feel like death literally!

I have had cat scans , but in the summer I started to have pains in my neck and 2 frozen shoulders . I insisted that I had an MRI and this picked up that I have got a tumour on the Pituitary Gland .

I was immediately taken off the Topiramate.

It's so far been 2 weeks since I have taken it , each day gets better and better .

Naturally I am very concerned about my out come with having to most probably have surgery

But , the relief of feeling so much better without taking this dreadful drug will enable me to deal with anything!

If you are having persistent really bad headaches insist you have an MRI to rule out any other reason for them .

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  • Posted

    So glad to hear you feel much better coming off the drug Carolyn. They also found the cause! I too have neck and shoulder pain- they xrayed, used ultrasound and said I had bony spurs, straight neck as the discs were fusing. The answer, they sent me to see a physio! In the end it was a CT scan looking at my sinus that picked up a large pituitary tumour. I really hope they provide you with a detailed plan for treatment. Have they advised you of the next steps? Carolyn is right, do not take no for an answer, nobody knows what is normal for you, only you.
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    • Posted

      Dear Cheer 48

      I am so glad to hear from someone who had the same problems as me .

      I have known for quite sometime that I was just not feeling right, and 2 have two frozen shoulders at the same time is far from normal !

      I think the Topiramate, on top of feeling exhausted, I feel that I lost 18 months in a slate of sheer exhaustion

      Waiting to see surgeon next week .

      What was the out come with your tumour ? Mine is non functioning.

      So at this stage will not respond to hormone treatment .

      It was me who constantly said I had abnormal symptoms to loads of Doctors , I can't tell you the amount of diagnosises I was given !!!!!!

      If I hadn't been insistent with having an MRI , I have no idea what would have happened. My sight is most definitely affected by it now .

      Please let me know what your treat And thank you so much for your reply .

      Please let me know

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    • Posted

      Hi Carolyn, Im glad I am also not the only late nighter! I am seeing the neurosurgeon in the morning. From what I gather an Endocrinologist will also be part of my care but tomorrow is the first step. The mri report states its a Pituitary Macro adenoma, I just dont know the fine detail. Its 4cm high by 2cm wide and invades one of my sinus areas, destroyed the fossa floor and butting up against by arteries and optic chiasm. Yep, I've taken a deep breath. It is good to communicate with someone that knows what you are talking about.
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    • Posted

      I wish you all the luck in the world tomorrow.

      My appointment is next Monday ! Exactly a week after yours.

      Yes ! I am a very late nighter now , huge problems getting to sleep and almost certain it is coming off the Topiramate 2 1/2 weeks ago . As I am feeling so much better in myself now and knowing the problem I already feel fantastic !

      Please let me know your outcome tomorrow?

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    • Posted

      Thanks Carolyn. I will let you know the outcome.

      Best of luck for you too next Monday.

      It's really good to hear someone in the same position feeling better.

      πŸ™‚

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    • Posted

      Cheer - that is a huge tumor - there is no way you can feel 100% with that. The MOST important thing that you can do for yourself is make sure that whoever does the surgery is VERY experienced - like he/she does the surgery weekly. Β Stay strong and hopefully you will be feeling much better soon!!
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    • Posted

      It is DSV. I too am under one of the best teaching hospitals and the neurosurgeon soecialises in pituitary tumours. These are some of the questions I have in terms of experience. I haven't felt 'ok' for years, I developed a new type of headache a year ago that doesn't respond to painkillers, clumsiness, general aches & pains. I will let you know the outcome. Its daunting but Im quietly confident they can master it. Thanks again.
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    • Posted

      Yes ! I have been exactly like you .

      Migraines ( ? ) completely changed pattern . Became more severe on left side of my head , had always been on the right side . So paralysed with pain , that twice my family had to call an ambulance. Each time I was told that I was to sick to move .

      I have really suffered with aches and pains like you . Each time I was fobbed of with lack of vitamin D .

      My vision has also been affected , but this has been very gradual.

      I have also just for years not felt 100% and every day tasks have just been really hard to achieve . Many problems that I have had to deal with , I just couldn't face , all because I felt so dreadful .

      I am up set that the neurologist, seen privately and on the NHS , just wrote my symptoms off as acute migraine sufferer . Being put on Topiramate clearly was totally the incorrect medication and made my symptoms much worse.

      I also was sent to a private no hoper Doctor for 4 years . Not once was I given a proper diagnosis !!!

      Causes of severe headaches should be investigated with an MRI immediately. Not be palmed off with useless medication !

      GP 's are also a complete waste of time as they don't listen or refer you .

      All my referrals I have had to demand .

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    • Posted

      Carolyn hearing your journey is like the identical pattern to mine. I am a migraine sufferer but these new headaches are debilitating. I also was told my vit D levels was very low and treated. I felt much better but not 100%. In the morning I feel 'drowsy' not tired or fatigued but as if I am drunk. It takes a good 10-15 minutes to shake myself out of it. Along the way Ive developed hypertension and hypothyroidism but perhaps this is where everything was starting to go wrong. You would think there would be a checklist for issues in relation to issues with adrenal glands. If your patient ticks nearly every box, its time to think differently. To be fair some GPs and consultants have been more responsive to push for answers than others. I think the biggest alarm bell was the sudden loss of hair on my head a while ago no warning, nothing. Even this had to be pushed as an issue for me to see a specialist.
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    • Posted

      Well mine like your has taken a great amount of time and suffering to get to the bottom of it all .

      At least we both know that it not are imagination, something was really going on in our heads !

      Mine has been a quick referral . 3 weeks from diagnosis .for an appointment.

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    • Posted

      Snap! Ive got to the referral stage in just under 4 weeks.

      Take care, I'll update tomorrow.

      πŸ™‚

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    • Posted

      Hi Carolyn, the appointment was very informative, full health history taken. I am due to be referred to the Endo and Eye specialists so they can establish the behaviour of the tumour and it's effects. Surgery is in the new year. It was very daunting but left me feeling more reassured. How are you doing?
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    • Posted

      Dear Cheer 48

      I'm really to hear your news , but am very certain that mine will be the same outcome as yours .

      I know for a fact that the tumour has affected my eye sight . Only a few weeks ago , I was complaining to my optician that I don't see clearly with contact lens . New prescription and still don't see . I aware of seeing in an oblong box now , can't see my feet when walking !!!!

      I live in london and going to St Georges hospital. They have a team of 3 surgeons who deal with our type is surgery. Did think of seeing the surgeon for a private opinion . I was advised strongly against doing this as it would delay things .

      I am just feeling very relieved that I now know that all these odd symptoms I have had , have been for a reason . Like you as Monday nears I am sure I will feel very apprehensive . My children ( older ) are coming with me . That alone will be a huge ordeal as my husband died 4 years ago in the same bit as I have been referred to .

      Please keep in touch.

      We will be ok !!!

      Carolyn

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    • Posted

      Hi cheers 48

      It's best you message me on this site.

      I'm really sorry , but I have scammed quite a lot !!!!!

      I just don't part with my details easily now . Please don't take offence.

      I am just a genuine 100% person trying to deal with this ghastly problem that has been thrown at me .

      Carolyn

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    • Posted

      So sorry to hear about your husband. Its also really nice to have suppotive children. All the best for Monday. πŸ™‚
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