Gabopentin - New on it!: Hi I have been... - Fibromyalgia Acti...

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Gabopentin - New on it!

Sophie1304 profile image
22 Replies

Hi

I have been prescribed Gabopentin 3 x 100mg a day, I have been taking it for 10 days now and I just feel rubbish! I am soooo drowsy! I have constant headache, pains in my jaw, throat, mouth, gums and ears too!

I saw a doctor on Monday and he said to keep on them a bit longer, so I am trying to push through, but it feels so hopeless. I am due to see my usual and nice doctor on the 13th march, so I'm hoping to have a plan of what to ask and say to him.

Does anyone have any advice or experience on Gabopentin?

Also does anyone recommend asking for a different medication to treat Fibro, I suffer the most with fatigue, low mood and nerve pain.

Thank you in Advance!

Sophie x

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Sophie1304 profile image
Sophie1304
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22 Replies
BlueMermaid3 profile image
BlueMermaid3

Hi Sophie

I have taken the liberty of locking your post for you. Hopefully that way you will receive more replies.

I would say try not to be put off the Gabapentin by other people's experiences, as medication for Fibro is very much trial and error for each person.

I have been taking the max dose of Gabapentin for years.

They can make you feel quite drowsy at first. The feeling will wear off.

You don't say if they are helping with your pain?

There are other medications that you can try for Fibro but pretty much all of them will make you feel quite drowsy to start with as they are all strong medications.

I would say persist if you can. They do take the edge off my pain (but bear in mind that I suffer with extremely severe pain).

Lu xx

PS Apologies, I meant to say that unfortunately there is no medication that will help with fatigue. I have Fibro & ME and the fatigue is unbearable. I was diagnosed in 1980.

Em08 profile image
Em08

Hi sorry not been on it so can't say. Try and stay on them if you can if it does help with pain. Xx

carol789 profile image
carol789

Hi Sophie, |I am sorry you are feeling so poorly. I am not sure whether your symptoms are from the Gabapentin but I can tell you what my symptoms are andt that I am also on Gabapentin for last 4 months now. I did try not to take them and managed for a few years, but all got too much.

Your symptoms sound like mine, I and my doctor put them down to my fibromyalgia, but I am also on Gabapentin started on 3 x 100 now up to 700 and working way up slowly to 900 and have the same symptoms as you. ( some people on here are on way more than this). I felt awful in first few weeks I would say about 5 weeks to be honest, but now glad I stuck with it.

My doctor advised that this time I also have chronic fatigue which is making me feel so lethargic and tired, so you could check to see if you also have this.

I have been to the dentist a few times since starting Gabapentin with pain in my gums and jaw as not had those symptoms before. I did ask 2 different doctors if my medication was the cause as not been this bad before but both said no, even tho some of the medications side effects are similar.

Dentist advised my Jaw is out of line and pain is from grinding my teeth due to anxiety and stress, which will also not be helping headaches. He prescribed eating softer food for 2 weeks which did not help, then a mouthguard, which was expensive but does help. he is now referring me onto a specialist.

I asked my doctor and he advised that it is symptom of fibromyalgia, which it may be but I would like to make sure as evrything seems to be down to Fibro.

My nose and ears have sores in them and they are painful, especially when hoover is on for some reason I get vibrating in my ear. I have come out in weird boils on my face which have hung around for months now and have scared my face - not sure if that's a symptom but new for me. I have also had blisters on my lips which do go away quickly. I feel dizzy especially on bending and get a pain shooting up my neck to my head and go woosey. I am also bruising easily - again not sure if that's a symptom. I have numbness and tingling sensations in my Big toes and hands which also at times feel boiling hot, huge and as if they are about to split. I have stiffness, low mood and painful trigger points: neck,hips, knees,arms, and just above shoulders and the foggy brain and crap memory, so many post it notes being used!

My eyes hurt and I have been to opticians a few times lately, he advised I should tell my doctor my eyes are very dry. I did this and doctor advised its down to fibro. The light has started hurting my eyes, which also get gritty and very sore feels like they are being squeezed top and bottom, but nothing new wrong with them so optician prescribed reactive lenses which are really good.

I am glad I am taking the Gabapentin as it does help, but have to remember to keep taking the correct dose or pain gets really severe quickly. I have also already put on 17lb's which I am not happy about.

This condition is turning me into a hypercondriac ! .

I have found out lots of useful advice and information from everyone on here, its a really good forum and everyone is so welcoming. I find it a really good resource and pick me up when I have queries or feeling low.

I now take magnesium and have a magnesium oil spray for my muscles. I have magnesium and epsom salt baths (BM Bargains sell this) and try and pace myself throughout the day. I am sure someone else will come along and provide you with useful info shortly.

Wishing you well and a restful peaceful night.

Carol x

BlueMermaid3 profile image
BlueMermaid3 in reply to carol789

Hi Carol

I have had Fibro & ME for 36 years and have a list as long as your arm of symptoms.

Pretty much everything you have mentioned above are recognised Fibro symptoms.

I am sorry as I know this is not what you will want to hear.

There is something called TMJ with regard to jaw pain, which many Fibro sufferers get. I also wear a mouthguard at night.

The blisters on your lips could be Burning Mouth Syndrome. This is yet another thing I get regularly and have been told by my dentist that I am deficient in Vit B12. Do you get a burning feeling in your mouth with the blisters and ulcers too?

On most days I can count anything up to 15 bruises and that is just on my legs. However, you should mention this to your GP in case he wants to take some bloods.

The only thing I don't recognise as a symptom is the boils on your face which I very much hope that you have seen your GP about.

I am sorry to give you this news, but perhaps it may put your mind at rest? I hope so.

Wishing you much peace

Lu xx

angiesmith50 profile image
angiesmith50 in reply to BlueMermaid3

Hi Lu just reading your message and you mention something I have started to get.

Sore mouth and my tongue burns. It gets worse as the day goes on.

I'v started to get stuffed up in the night and really dry mouth.

I take amitriptyline so I am used to having a dry mouth but never suffered during the night like this. I alway have a bottle of water by me.

I have turned the heating off to see if that would help but didn't.n.

Is this a fibro symptom do you know? I keep going to ring docs but I'm not going out alot at the minute. Feel safer just staying in.

I know your no doctor but would be interested in your experience.

Thanx Lu xxx

BlueMermaid3 profile image
BlueMermaid3 in reply to angiesmith50

Hi Angie

As you know, I only ever speak from my own experiences of things.

Burning Mouth Syndrome is when your mouth feels like it's on fire - hence the name. It is usually accompanied by lots of ulcers in the mouth and under the tongue and cuts in the corners of both sides of the mouth.

It may well be worth asking your GP for a blood test to see if your Vit B12 is low.

It only has to be on the low side of normal to have an effect on you.

I hope this helps?

Lu xx

angiesmith50 profile image
angiesmith50 in reply to BlueMermaid3

Thanx Lu xxx

BlueMermaid3 profile image
BlueMermaid3 in reply to angiesmith50

You're very welcome my friend :) xx

MavG profile image
MavG in reply to angiesmith50

Be aware dry mouth and constant thirst can be down to diabetes. This is what caused my diagnoses of diabetes. Need to see your practise nurse for very simple blood test. Take care.

angiesmith50 profile image
angiesmith50 in reply to MavG

Thank you MavG I will get it checked xx

Suzmurr56 profile image
Suzmurr56 in reply to angiesmith50

Fibromyalgia can also have the same symptoms as sjorgenns syndrome dry eye dry mouth dry skin, raynauds is also related to fibromyalgia, I have TMPJ Which is painful jawbone your dentist can help out as with grinding of teeth at night a guard over your teeth can help but it can also give you a dry mouth, rhinitis is also part of fibromyalgia that's constant runny nose and at night it goes down the back of your throats and can make you feel like you have a constant cold.. it's the same with ears ringing noise sensitive to noise and sometimes I find it difficult to concentrate on one conversation in a crowd..

I was on amitriptyline for a while when I was first diagnosed but I felt like a zombie and life out of control so I was taken off them, I think that over the years of my fibromyalgia journey it's getting the right meds and dose that gets you through your day ..

Good luck on your fibro journey

carol789 profile image
carol789 in reply to BlueMermaid3

Thanks Lu :) yes I've mentioned all symptoms to doctor. My mouth does burn slightly when I have the ulcers and gets dry easily even tho I drink loads. It's a horrid illness isn't it.

Hope you have a peaceful night

Carol x

angiesmith50 profile image
angiesmith50

Hi Sophie1304 Gabapentin made my fatique a lot worse. I couldn't function on it. I now take pregablin which suits me alot better.

Good luck & take care.

Angie xx

bluebell99 profile image
bluebell99

Hi Sophie1304

It may be worth persevering until you see your doctor and then tell him of your concerns if the side effects are too much for you.

We are all different and I am afraid it is a bit of trial and error as what works for one person may not necessarily work for another.

I tried Gabapentin and its sister drug Pregabelin and neither agreed with me, but I am on amitriptyline at night which does work well.

Hope you manage to find something which suits you.

Kay

I was given it for sciatica when all else failed, and had to stop taking it after a week as I felt SO depressed. It ruined my birthday that particular year. I'm not someone who generally feels like that ever, so it could only be the meds and possibly the combination that I was on because nothing touched the initial pain, but I dropped everything at once so I could feel normal again.

TheAuthor profile image
TheAuthor

Hi Sophie1304

I am so genuinely sorry to read this my friend, and I sincerely hope that you can find the answers that you are looking for. I do not use Gabapentin as I take a similar drug called Pregabalin. I have not had any side effects myself from this drug. It may be worth talking to your GP about this instead to see if it is suitable for you? I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

Loret profile image
Loret

Hi i am on the same bare with this and I promise you it will take time but they will do you some good I had all those symptoms too and probably more but feeling after six months I must say a lot better and noticeably

tweedledum18 profile image
tweedledum18

Hi I've been on it about 6 months now was prescribed 300mg 3 times a day but I take 2 at night along with a 50mg of amitriptyline and I get to sleep brilliant if I don't take it I am up all night and can't cope with the pain at all it does take a while to help with the pain it takes the edge off but as it's great for a sleep you can cope better hope you get some relief soon take care 😅

Fightingwithdad profile image
Fightingwithdad

Pain clinic put me on gabapentin, stayed on it for a year, was told to titrate up til I felt it helped, this was 1200mg. Sadly I was so spaced out I decided to come off it, not a pleasant experience! As for fatigue, I do find that paroxetine helps a lot, 20mg every morning.

Multijo profile image
Multijo

I have been taking it and I like it. It was a pain getting thru the side effects but mine did not lasts. I know these things can be so different for each person.

If you can give it another couple of days and see if there is any lessening? Maybe that would help.

Suzmurr56 profile image
Suzmurr56

Hi Sophie , I have been on gabapentin for many years 500mg a day I find it does take time to get used to them it's when you stop taking them you realise how beneficial they are.. persevere with them in the long run as they will work for you .

Good luck

Squirrelfeeder profile image
Squirrelfeeder

Hi all. Can I just say, I have fibromyalgia and multiple other illnesses. I take deluxotine and gabapentine. Still get incredible pain especially when stressed. However recently I heard about weighted blankets. So I thought I had nothing to lose so I got one. Best thing I ever did. Still have severe pain, but at least I can sleep a lot better, more restful at night. I didn’t see how it could possibly help, but for me it’s a God send. Take care guys

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