Fibro and epilepsy

Hi everyone, I havent been on for a while but appreciate all the support from people on here and need it again now.

I have had Fibro plus other issues for over fourteen years now. I live with my Fibro daily and like alot of people on here I pace myself during the day and make sure I get a good night's sleep as a basis of trying to contain my flares. Last week I started fitting, totally out of the blue and really scary! I have been to the Dr who misdiagnosed me to start with saying I had benign essential tremors as I am aware during the fits but not able to control them. My son who is 26 visited me a few days later and I had two during his visit so he videoed me. We took the video to the Dr who has now referred me to the Neuro saying that she was wrong it is Petit Mals a form of Epilepsy. What a blow at my age!! My main issue is that they have put me on Beta Blockers to try and control the fits but this seems to counteracting the Pregabolin which helps me to sleep so not only am I sore all over from the fits and muscle spasms but my sleep pattern has gone out of the window. I feel so low as I cannot come off the Beta blockers til I have seen the neuro in July (earliest appt) and I cannot go on without a night's sleep for much longer. That is all on top of the fact that I run my own small business glass engraving which is not the best of careers if you have fits!!!

Has this happened to anyone else at all? It is obvious my fits are stress/anxiety driven so is this a progression of my Fibro? Any help would be greatly appreciated

Angie

4 Replies

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  • Angie Hi I have beenr ading the post from Royal specs and I agree go see your GP with any new different parts of your illness chat about it make him/her understand the gravity of the problems you are experiencing.

    When we have new members we remind them that info from other members is essentially useful but the relationship with your medic is the most important.

    Good luck let us know how you go on

    xgins

  • Hi angie64

    I am so sorry to read that you are suffering in this way and I genuinely hope that you can find some resolution and relief to these issues. Quite a few years ago I saw a neurologist relating to severe migraines that caused me to have blackouts. She told me that they would normally prescribe Beta-Blockers for such conditions. However, I have severe asthma and COPD so I am unable to use Beta-Blockers, so she prescribed for me an alternative, an artificial Beta-Blocker with less side effects called Verapamil.

    I have pasted below the NHS Choices links to both drugs, so you can compare the two and their similarities. If you start having issues with Beta-Blockers, then maybe Verapamil is something that you could discuss with your GP or Neurologist?

    nhs.uk/Conditions/Beta-bloc...

    nhs.uk/medicine-guides/page...

    She also told me that when migraines become so ferocious and cause blackouts that they are verging on a type of epilepsy which should be checked on regularly. I have also pasted you the NHS Choices link relating to epilepsy. I have looked online at Petit Mals, and most of the other forums appear to equate Petit Mals with being at a young age?

    nhs.uk/Conditions/Epilepsy/...

    I want to wish you all the bets of luck with this and your treatments.

    All my hopes and dreams for you

    Ken x

  • Hi Angie

    I, like you I started having fits three years ago out of the blue. Mine are tonic clinic (grand mal) seizures, which means after one I don't know who I am for days afterwards, so scary. I have to take carbamazepine for epilepsy and this has caused b12 deficiency.

    I hope the neurologist sorts out your medication hun & I just wanted you to know you're not alone in this. Good luck with everything and big hugs xx

  • Thank you to you all for your words and advice. I also understood petit mals to be in younger people so am not sure what is going on! Looks like I will have to wait to see the neuro in July before I get any answers and try not to get too down in the meantime. Will go back to my doctor I think as sleep is a real necessity to be able to cope with the Fibro. Hugs to you all and thank you for taking the time to write to me x

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