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Saw the specialist today

Yep got to the hospital in time and they were running the obligitory 45 minutes late finally got to see him and he has put me on Gabapentin but I have to go back for an MOT next week. He has booked me in for a one hour appointment for a thorough going over. If the Gabapentin dont work next stop a Baclofen pump.Don

Hi Don,

Good luck with gabapentin and for your MOT next week.

I have no experience of a baclofen pump so can’t offer any advice on that one.

Pam x

Don,

the MOT sounds good and worthwhile. I had a MS nurse consult a few months ago and I did find it worthwhile.

From what I hear, the pump is good, can’t remember where I saw it, Might have been Polly that mentioned it(?) but very good reviews on a website - might be worth googling since my memory is not giving me any more hints!

Sonia x

Thanks Sonia and thanks Pam. I have just taken the first one maybe when I get to see the specialist next week I will be skipping and dancing and not need the baclofen pump but I have a feeling the gabapentin is the last hand of a bad gambler even he said nothing else available other than the pump available.??

Gabapentin works for me so far, Don, and no side effects to note, ( I’m always drowsy so I wouldn’t know if it made me worse!) I don’t know about skipping and dancing but it should ease the burning and some of the spasms.

Hi Don. I’ve no Baclofen experience but the Gabapentin I’ve been on for about 3 years. It definitely helps with nerve pain and I’m sure it settles the nervous system down, can’t remember much about my pre Gabapentin days other than sheer agony but I’ve got a good quality of life now. The only thing I do know is that it increases your appetite and causes drowsiness with every dose change but I got used to it very quickly and am not doped up even though I take the maximum dosage. I don’t really suffer from many spasms but I have a tremor when my limbs tire so I’m not sure either if that’s meds or me, but I hope you get some relief from it.

Good luck for the MOT, let us know how you get on.

Cath xx

Thanks Kev Thanks Cath. I have only taken one 300mg tablet so far and didnt want to wake up this morning sleepy head? no diference yet but early days.

Hi Don, Hope the gabapentin helps you, I have taken it for years and it certainly helps with nerve pain but I have to be honest and say it hasn’t helped my spasms one bit. I am allowed to take 6 a day but I keep it to the absolute minimum purely because my weight rockets up when I take the maximum dosage. I was warned it would make me sleepy but it didn’t sadly! Fatigue rules my life and yet I struggle to sleep…no rhyme or reason to it! Good luck Don, Nina x

Hi Nina

Just wanted you to know that you’re not on your own with that one, fatigue is dreadful and yet I go to bed and cannot sleep, there is no rhyme nor reason to this one. In fact when I go to bed, it is like switching a light on in my head, and my brain will just not switch off. Hope that makes sense, its difficult to explain.

Take care

Pam x

Oh Pam I understand totally, I have recently given up and started taking a sleeping tablet…I was prescribed them several years ago but as I knew they were addictive I would only take them now and again. After a very bad bout of no sleeping I was finally persuaded to take them nightly. It has helped a lot, I do have nights when they don’t work so well but on the whole its a vast improvement. Maybe worth a word with your GP? One other thing that helps me, if my brain is in hyper gear is deep breathing and mindfulness, I know Pat uses this technique too. Take care of yourself Pam Nina x

Hi Nina

Thanks, I already take lots of tablets, and am scared to take anymore, I must nearly rattle, and for some unknown reason I don’t tolerate meds very well as it is.

I will try the deep breathing technique though, see if that helps, thanks.

Take care

Pam x

Will Amitriptyline not work for you? It’s really good for nerve pain, has anti depressant properties and knocks me out every night. I take it at 7pm, go to bed at around 10pm and I’m asleep as my head hits the pillow. As I take it so early I can get up okay (as okay as most ms suffers that is) in the morning and don’t have the hang over effect that many sleeping tablets have. Just a thought…

Cath xx

Cheers Don, will do

Pam x

Hi guys, just want to put my twopence worth in about Mindfulness breathing. I notice a couple of you mentioned ‘deep breathing’ and that is not really the mindfulness technique… so I will try to explain it briefly. You bring your attention to your breathing. You don’t try to control your breathing or breathe deeply… just concentrate on your natural breathing. Your mind will wander… think of your mind like it is a puppy… it is always curious and will wander off into worry, daydream, remembering, planning… As soon as you have noticed that it has wandered, gently bring your attention back to your breathing. It helps to focus on one area of your breathing… either your nostrils or mouth… or the rise and fall of your belly. I find having my hands on my belly can help. You can use this to try and get to sleep and also during the day. Just sit quietly and do it for a few minutes. It gets easier the more you do it. Let me know if you have any questions… or google mindfulness. There’s loads about it on internet. Pat xx

Oh thanks Pat, you have explained to me something that I was taught yonks ago when I was in hospital with a pneumonia, namely where they said to lie with your hands across your belly, and when you breath your belly will rise to prove you are using your lungs correctly. I did not know that is meant by mindfulness…I got it now.

Apparently they said if your belly does not rise, you are not breathing correctly, hope I got that right, so as not to worry anyone.

Hope you are OK

Pam x

On the rare occasions I’m lying awake and wanting not to be (as opposed to being kept awake by Larry, my left leg, who is far worse at spasms than Reg) my technique for getting off to dreamland involves lying on my back as you describe, and thinking about my breathing, and deliberately keeping my eyes open. Or trying to. In the dark it’s quite hard to do. I lie still breathing properly, and try not to let my eyes close.

It usually works- although to be fair, I’ve never really suffered badly insomnia.

Thank you KeV, I shall show this to my husband, who tells me that the reason I cannot sleep is cos I keep my eyes open.

Yipppee…I have won that debate.

Pam x

Pam your not at all competitive are you asks Don in an incredulous voice

Pam, yes, proper breathing is when your belly rises and falls. If you are only breathing so that only your chest rises and falls, you hyperventilate. That’s what happens when you have a panic attack. There is more to mindfulness but the focusing on your breathing is the basic technique. Try… when doing the breathing… to relax your body on every ‘out’ breath. You can think about every bit of your body, starting at your feet and moving up, or your head and moving down. Relaxing as you go. Hope this helps, Pat xx