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Migraine and Topiramate. Pituitary tumour .

Posted , 4 users are following.

carolyn21261
carolyn21261

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 .

0 likes, 28 replies

28 Replies

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  • DSV
    DSV carolyn21261

    Posted

    You also need to go to an endocrinologist who specializes in the pituitary to see what hormone your tumor is secreting.  That way you can get it treated appropriately whether it be surgery or medication or possibly both.  
    • carolyn21261
      carolyn21261 DSV

      Posted

      Thank you so much for your reply .

      Yes, I have been to an endocrinologist. It is a non functioning tumour .

      I am now waiting to be see by a neuro surgeon .

  • DSV
    DSV carolyn21261

    Posted

    Many, many years ago I was told mine was a non-producing tumor also.  When they biopsied the tumor after surgery it was found to be a growth hormone producing tumor.  I think the endo that I had seen just didn't understand . . . I had surgery to have it removed - my headaches were gone for about a year and they returned. Long story short - I am now on a medication that helps reduce the growth hormone in my system.  It can reduce the tumor size but won't eliminate it altogether.  Being on the medication has been life-changing.  After suffering for many years with daily (bad) headaches I am now headache free - just WOW and PTL!!  I would look in to a teaching hospital and get some real specialists.  Can't tell you how many doctors have sent me down the wrong path.  Don't give up especially since you know you have the tumor.  
    • cheer48
      cheer48 DSV

      Posted

      DSV, what a nice encouraging message.
    • carolyn21261
      carolyn21261 DSV

      Posted

      Yes . I am going to a top teaching hospital .

      I like you have suffered almost daily with excruciating headaches . To be headaches free like you are now would be the best thing ever !!!!!

      I am sure that I will need some sort of hormone treatment as well , as a lot of my symptoms fit with a functioning tumour.

    • DSV
      DSV carolyn21261

      Posted

      Yes - it is pretty amazing and life changing!!!  I hope that you will soon be able to figure out things and get proper treatment. 
  • DSV
    DSV carolyn21261

    Posted

    Hey Girls,  Your journies sound very familiar.  My headaches have also been one-sided, NO pain meds help and migraine meds made me sooo much worse.  Like I said earlier, what I have is a growth hormone producing pituitary tumor.  It usually causes Acromegaly but I am a rare one and for some reason, I do not have the excessive growth for which I am grateful. I know it could be so much worse.  I am being treated as an acromegaly patient though. I so hope that you both get the answers and help that you need. 
  • mae56550
    mae56550 carolyn21261

    Posted

    Hi, just curious... why did the Dr. take you off of Topiramate for your migraines?  What do you take now for your migraines?  The reason why I ask is because I am on Topiramate and they found a cyst in my pituitary gland, they didn't take me off of Topiramate, it helps but very little.  I did end up having surgery to remove the cyst because we believed the migraines are coming from the cyst. If there is a potential risk with pituitary patients I would defantily like to know. Thank you.

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