Hello - Mum had a major stroke in June (see other posts) and I'm just researching the drugs she is on and wondered what experience you have all had (we are obviously also discussing all this with Mum's GP). Mum has no short term memory at all and so partly interested to know whether any medication impacts on memory / confusion.
Mum was put onto trazondone fairly early on - are any of you on this and is it a normal anti-depressant post stroke? NHS website says that it is isually prescribed when others haven't worked and so interested that she went straight onto this (she hasn't been on anti-depressants before).
We have been paying for a private physio (as NHS taking forever). When she finally got to see the NHS physio a few weeks ago he recommended that she takes gabapentin (interesting that no-one had recommended this earlier....). It does seem to have eased the pain but am aware that it can have horrible side effects. Anyone any experience of this drug? When researching gabapentin I came across an American ad for NerveRenew (Vit B1 etc)- has anone tried this? the Ad didn't mention it in the context of strokes - but does in context of nerve pain / tingles (and aware that tingling is common post stroke damage).
If anyone has anything to share on this that would be fabulous.
thanks again
Sarah
Hi Sarah,
I have been on fairly high doses of Gabapentin for CPSP for approximately six years now. It took a few months for my body to get used to the dosage (I was away with the fairies a bit for the first few weeks) but I function OK now.
I was on antidepressants (not the same ones) for the first couple of years, but found that with exercise (and vitamin D3) I didn’t need to be on them any more.
I don’t know anything about NerveRenew, but take American drug adverts with a huge pinch of salt.
Of course, all stroke survivors are different, so your GP (or, even better, stroke specialist) should be able to assist in this and other matters.
Hi MinnieB,I have just been put on gabapentin 900mg a day but it is not taking any pain away did you start on a low dose and what dosage are you on now. I was on pregabalin but I could only manage 100mg a day anymore and I had such dizzy spells I couldn’t stand up. I had my stroke 2 years ago and never had this pain until 12 months ago.
Hi Patty68,
I have been on Gabapentin for quite a few years now. I started off on a low dose and slowly built up to 900mg a day. I think that is as high a dose as you can get The pain started about 6 months after my stroke. I get very tired in the afternoons and have to take a 15 minute power-nap, but apart from that, don’t suffer any adverse effects.
Hi,
My wife had a stroke nearly three years ago, pain started after a year, she tried gabapentin, with no mention of CPSP, but with side effects. Then pregabalin 200mg a day, again side effects, consultants recommended taking a higher dose, my wife has refused more drugs. She is now discharged from the hospital and we have followed up with GP but they do not seem to want to change anything without consultant input. The right side pain comes on at various times. There seems little information locally.
TM
Hello. I have been on Gabapentin for some while now for nerve pain down my left side. Difficult to know how much good it is doing as the pain comes and goes anyway. I’m on 900gms. My pain started a few months after my stroke nearly 2 years ago. I have recently been put in touch with the consultant neuro physiotherapist for our area. she has suggested hot and cold water treatment for my hand which is painful most of the time. Also suggested Pilates or Yoga for balance issues. I would be interested to know how other people manage the post stroke pain. Mary
Hi Mary-- I have been fortunate in not having had post-stroke pain. However, I did have post-sroke muscles spasms in my left leg. They would keep me awake at night. I found that taking CBD oil drops under the tongue would alleviate this. 20 mg usually worked within 45 minutes. If it didn’t, then I would take another 20 mg. That always did the trick. Maybe it would help with your pain as well. Be sure to use a reputable business. I used Ancient Life Oil. You can research dosing and order on-line. I checked first with GP and my cardiologist. Both were ok with it. In fact, my GP said many of her patients used CBD oil. My best to you–Jeanne
Hi I’m new to using a forum. I had my stroke 6months ago I’ve been on Gabapentin for nerve pain from my toes to fingertips without any results they were increased to 1800 mg daily but I’m still in pain. I don’t know where to go next
Thanks Jean. I think I will stick with the Gabapentin for now as the Dr has increased my dosage and I’m experimenting ting with the best times to take them.
Hi. My wife had a stroke 3 years ago then after several months developed a pulling sensation on the right side she was put on gabapentin but it did not do anything for her and she stopped taking it. Then after 16 months or so the consultant tried pregabalin starting at 200mg. Like all drugs, this has side effects. After taking this for 6 months it does not seem to have helped. The GP has now referred her to the pain clinic and we have an appointment for Feb. I think there are other drugs that they can prescribe but all have side effects, the two mentioned seem to be the first choice options. It would be worth going over the options with your GP. We have found that these ’ after stroke’ pains are known about but there is little discussion with the patient. I have also started looking into alternatives such as acupuncture, that is ongoing. Hope all goes well.
TM