New Medication - Epilim or Pizotifen

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Hi All!

I suffer with migraines frequently and also chronic daily headaches (as you will assume by the name - I suffer with them daily).

I have tried so many different prescriptions I am surprised I haven't started rattling!!!

I have been to the neurologist who has put together a treatment plan however the tablets she has suggested so far haven't worked!

The only one I found to be making a difference was 1800mg per day of Gabapentin & 20mg per day of Nortriptyline however I was still getting migraines although these had decreased to around 1 a week/fortnight meaning now I am currently being weaned off of the Gabapentin and get to choose between trying Epilim or Pizotifen.

I am now down to 900mg per day of Gabapentin and I am coming to my wits end, I have had a constant background headache for over 2 weeks which seem to be rolling into one big migraine!

Have any of you had any experience with either the Epilim or Pizotifen and can you give any advice??

Best wishes to all

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  • Posted

    Hi, I have checked neurontin doseage and 3600 mg daily is the max dose given. I am currently taking 2700 mg and it is unlikely my go will raise this. If your symptoms are severe, ask for a review or ask for an increase in medication. Some gps would be reluctant to increase without further advice from a consultant anyway . Hope this helps.

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    • Posted

      I asked if they could increase but they refused and said I was on the highest dose, I said to them its the best medication that I have taken so far as it has helped so much however they are still adament I am getting too many migraines for my dosage and as such need to take me off of the gabapentin.

      Im due to go back at the end of the month so will ask them again about this! Thank you so much Liz! Best wishes to you!

      Its so nice to be able to speak to someone that actually understands!!!!!

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    • Posted

      I know what you mean, this forum keeps me going. I have had 2 weeks solid where I couldn't do anything as my gp was trying to get me off Gabapentin. . However he has allowed me to remain on it for a year before he will try again. I had a further migraine 3 days ago which was bad for 1 day and today I feel much better. Are you keeping a diary? I kept a diary for 3 months and a list of all the symptoms as I did not realise just how bizarre some of the migraine symptoms could be. Keep in touch and let me know how you get on. Best wishes to you.
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    • Posted

      I'm glad your feeling better! I've had one for 2 weeks straight before and it was the most horrid thing I have ever experienced! I have noticed since coming off of the gabapentin my migraines have pretty much returned in full force and more painful than before!

      I have started keeping a diary and not really noticed much other than strange cravings, moods etc a few hrs or the day prior to the migraine - yesterday I was craving salt (very strange i know!) and a few hrs later was struck with a migraine, woke up this morning with what i refer to as a migraine hangover - thick head and just generally no energy!!

      Best wishes to you too liz xx

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  • Posted

    HI bachelor,

    Have you any other side effects from the gabapentin? Does your skin itch or have you a rash? Gabapentin has several side effects and like any other drug too heavy a disease can actually cause further headaches or migraines.I personally had to come off it through side effects., but there are others .Sometimes the body needs to rest from drugs like you I've had so many I got so I was taking drugs to counter the side effects of other drugs. Seek further advice and read up .Many doctors have little understanding but rely on their mims as a solution but it doesn't solve the whys and real problem.Epilim is used for migraine but it's most common use is for Epilepsy I know it well because my first husband was on it for over twelve years .It does have side effects but can help epilepsy I was put on an epileptic drug once but With real hairy fairy side effects but for some it does work .How long have you been on these drugs ? If after afew weeks the negs outlay the positives then go back to the doctors ask for a consultant ion with a neurologist.It is your life and you have the right to ask for specialist advice after all neurologists are specialists .Its a bit of a roller coaster ride until you find a balance of meds and self help that gets you onto an even keel where life is doable and improving.You aren't alone so don't feel isolated .If I can help at all  text. good Luck Yvonne

    ps The UCL Queens Rd London Neurology and Neurosurgery is a very good clinic

    with specialists your doctor can refer you to.

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    • Posted

      Sorry I meant to heavy a dosage can create problems.Pitzotofen can work unfortunately it only made me feel rubbish and had no effect on my attacks but it does work for others , sadly one med does not suit all .You don't say how old you are or if you have a stressful occupation but can play apart of migraines behaviour changing patterns.Keeping a diary really helps you and the docs identify changes in relation to circumstances and drugs.Even weather can trigger migraine I have to be careful in summer I love the light and heat but it triggers migraine if I don't drink enough water.Keep hydrated not with tea or coffee they have the opposite effect and so unfortunately does alcohol.Alittle does you good a lot invites migraines.Good luck Yvonne.
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    • Posted

      Hi Yvonne!

      Not many other side effects, mainly really tired even after having a decent nights sleep, lack of motivation and was quite spaced out whilst increasing the dose, once i had reached the highest dose my tolerence built up and the spaced out feeling faded.

      I have been put on Topiramate previously which I believe is used for epilepsy and I had horrid side effects from this - I had a constant migraine for 2weeks and I couldnt sleep at night, the dr agreed that i needed to come off of this and gave me a months break before starting me on other meds.

      I have been on the Gabapentin since October and have found it quite helpful however still getting the migraines. It wasnt until after I saw the neurologist I visited another GP who has discovered I suffer with the chronic daily headaches as well as migraines so I need several types of medication to counteract each issue..

      I will look into the London Neurology! Thank you!

      I felt completely alone until recently when I found this website & I decided to join yesterday! Everyone has been so helpful and so supportive!

      Thank you so much for your advice Yvonne!!! xx

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    • Posted

      I am only 23 and have been suffering with migraines since being 17/18, they have got worse over time and only the last 2yrs have my GP's been finally sitting up and listening!

      I have noticed certain triggers, work stress I can cope with, family stress triggers it, if there is a thunderstorm due the air pressure can trigger one etc. I have cut out caffiene and I don't drink alcohol at all.

      I have started keeping a diary and hoping to find patterns but nothing really to date.

      xx

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    • Posted

      There isn't a pattern to ahm- atypical hemiplegic migraine, if this is your diagnosis. Get your gp to be more clear about this as it helps you to understand the illness better and to get the right help. There are many pitfalls but do not lose hope.
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    • Posted

      I dont have ahm - I suffer with regular migraines (although not really predictable) and chronic daily headaches.

      I will be speaking to my gp end of the month to give me more information on it - theres only so much google can inform you before you have suddently diagnosed yourself with a brain tumour! haha

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  • Posted

    Hi, I suffer from Chronic Complex Basilar migraine syncope, I lose consciousness, numbness, tingling, vomiting, ear pressure and these can last for 2 weeks.  I am currently on 1200mg Epilim, this has helped reduce my symptoms to 2 weeks as they were constant before and I ended up in hospital for a week.  They occur every 4 weeks due to hormones, I am hoping that my blackouts will not occur again since increasing to this dose 3 weeks ago.  I suffered relatively little side effects to the Epilim which I am so happy about, I had to increase gradually 100mg per week at first but after my last blackout where I collapsed at work I had to increase 100mg every 3 days, I now take 600mg AM and 600mg PM, I do experience headaches during the migraines but not constant, I am finding the blackouts the most frustrating as they come with no warning.

    I tried Amitriptalyine but suffered unbearable side effects.

    I am being treated by a Neurologist and he has said my dose could have to go up to 2000mg depending on if the blackouts do not stop.

    Good luck.

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    • Posted

      Hi Alex!

      That sounds terrible! I hope that they get you sorted very soon!!!

      I too have tried the Amitriptalyine and hated it! I was a crying mess for the time they had me on that and it didnt help with my migraines in the slightest.

      Do you experience the blackouts whilst the migraine is ongoing or before or after?

      Good to know about the little amount of side effects from the epilim - I am still in 2 minds which one to try first.

      Do you also use a pain relief for when you know that the migraine is on its way?

      Best wishes xx

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  • Posted

    The blackout is usually the beginning of a 2 week abdominal and neurological migraine I get headaches and when I do I just take Panadol and this works for me, the other symptoms are not painful just nausea, stomach cramps, numbness, tingling but the worst is vertigo.  I am just hoping that the Epilim works soon for the blackouts, mine are triggered by hormones so unfortunately I cannot avoid these, I tried a contraceptive coil and it had the opposite effect and made my migraines so bad I collapsed 3 times within an hour and ended up in hospital for a week vomiting, 2 further blackouts plus other symptoms, they removed it immediately.  I am therefore solely reliant on the Epilim working.  I did not even know migraines could cause numbness in my face and blackouts before January this year or abdominal migraines.

    Keep me posted x

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    • Posted

      That sounds awful!!

      Do they have a back up if the Epilim doesnt work?

      To be fair I've started researching more over the past few weeks and I didnt know about the abdominal migraines either!

      If it is hormone related have they tried you on other contraceptives i.e implant? I think this has a different hormone to the pill and the coil?

      I hope they get you sorted!

      Keep me informed xx

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