Pregabalin

[ored13]

So mu husband has been put back onto pregabalin, on of the drugs which landed him with a brain injury in the 1st place. It's to stop the cramps in his weaker left arm. Imt honestly at my wit's end with the facility that he's in. They are absolutely USELESS. We have had very little information from them on anything. I'm not even sure what to expect anymore. Just putting this out there.

[cat3]

This might be an issue beyond the understanding of many here Ored, so maybe a call to the helpline for support in accessing further professional advice and possible second opinion might be your best bet. Medication is such a specific treatment for specific individuals that I fear any guesswork could be misleading.

I do know there are alternatives to Pregabalin (such as tricyclics/SSRIs & others) but only the experts can advise on the appropriate drug for any particular patient.

I do hope you get satisfactory answers m'love.... Thinking of you, Cat x

[ored13 in reply to cat3]

Thanks Cat. I was completely floored to hear that he was on that drug again with no consideration or consultation. The communication has been so poor with this hospital. We're not even sure whether there has been a neurologist involved in his care. It's very confusing.

[cat3 in reply to ored13]

After reading your description of your man's issues with Pregabalin I really think you need to talk with Headway staff ! Not sure if they're available today as it's Easter but definitely tomorrow.

Phone the helpline on 0808 800 2244 and tell them what you've told FirstAvenger. You definitely need a second opinion m'love... Alternatively, phone PALS on 0121 424 0808 for support in getting the message through to your husband's doctors... xx

[ored13 in reply to cat3]

Thanks Cat It's on the list. The list is growing at a scary rate which me and my sister in law are trying to manage but there seems to be something new to tackle every couple of days. It's horrific. I can't wait until he's out of there.

[FirstAvenger]

Not quite sure how pregablin is going to stop the cramping. Seems strange you use that word 'cramp' as that's the word I used to describe my feelings to the doctor and he prescribed quinine.

It turns out after 3yrs of waiting for stroke rehab I was suffering with muscle spasticity; when I told my new Dr that I had this tight feeling in my forearm and calf that felt similar to cramp, almost like someone was pulling on everything from inside, I was given a low dose of muscle relaxant called baclofen. I still take the pregabalin which is for my other widespread chronic pain, but the baclofen has helped a little with the tightness (I'm only on a low dose so I can remain in work)

What I'm trying to say through all my rambling, is different doctors listen to key words and prescribe what they think is best based on the symptoms described. It's worth noting down all the feelings your OH is experiencing and explain these as best as possible to your GP and maybe ask to see a specialist or another GP for a 2nd opinion if things aren't improving.

I'm not a doctor and I'm not suggesting your husband has spasticity, I'm only describing my experience. Only a qualified doctor/specialist can treat him accordingly.

I hope your husband gets the help he needs soon.

All the best.

[ored13 in reply to FirstAvenger]

Thanks for your reply. He is still in rehab. I think he has some spacticity. I'm still trying to understand what that actually means. He often has quite bad nights because he has what I think is pain and discomfort in his left arm. His left side was exceptionally weak and without feeling for a good few weeks post injury.It is still weak but rapidly improving.

As a family we are worried about him being on pregabalin as that is what he was prescribed pre-BI for the nerve pain caused by some displaced discs in his spine. He was given both morphine and pregabalin or similar for around the 4/5 year mark. About a year ago he seemed to be hit with chronic fatigue and all sorts of other issues including periods where he would stop breathing during sleep for up to 30 seconds at a time... Sleep apnoea, that's the word. However I was blocked from giving any information on this sort of thing by our GP because I was "interfering and controling". Their words not ours. From what I understand but nobody is admitting to, pregabalin taken with or without an opioid can cause respiratory distress. He has a hypoxic injury. There are too many links to that medication along with the morphine leading to his collapse in December last year. So I found it quite shocking and disressing that he was back on it despite our family providing the hospital with an in depth medical history (which we have been keeping for years) because they stated that there were GAPS in his records! (Blows my mind every time).

I often get the impression that there is some sort of medicinal Russian Roulette going on. Not necessarily in rehab but just in general. We are going to challenge the hospital on the use of this medication as well as the fact that they didn't say anything to us about it when we have regularly asked about medication.

But thank you so much for your reply. It does help to hear someone else's views and experiences!🙂

[123Bereft]

Yea, last week was another week when no one called me to update me. I feel your pain 🙁

[ored13 in reply to 123Bereft]

I just feel like this is completely unacceptable. I can count on my 1 hand the times they have contacted me of their own accord and not in answer to a prompt.

[123Bereft in reply to ored13]

I have a team link, she said to send an email and she will call back. One week she was on holiday but didn't tell me, I raised it with the ward sister who said that she isn't obliged to tell me when she is on holiday, I have given up now, my partner is moving soon so I hope for better things x

[Pairofboots]

Hi ored, you attribute pregabalin as causing your husband's brain injury, I don't disbelieve you.

Pregabalin has a number of uses, it is used for neuropathic pain, epilepsy, anxiety disorders, sleep disorders, and as a mood stabiliser.

So I can see why it might be prescribed for cramps if neuropathic in origin.

It is now a controlled drug as it has been used as a drug of abuse, although for the life of me I don't know how.

Sorry, teach me to read all responses, now you mention sleep apnea it makes more sense. Pregabalin can reduce respiration rate, as can any opioid such as morphine.

I know it is difficult, but there are three factors to your husband's hypoxic brain injury, any one of which may have been the major contributor. The apnea, the morphine, or the pregabalin. I set them out in that order because that is the likely order of contributers to your husband's injury. Sleep apnea being the bigger contributer followed by the morphine, and pregabalin the least.

Now what caused the sleep apnea, morphine and pregabalin could have contributed.

I hope this makes sense

Best wishes.

[ored13 in reply to Pairofboots]

Hi again. He was never actually diagnosed with sleep apnea.. it's is an assumption just by watching or listening to him sleep for months. Just moments of silence where his body struggled to get any breath. It was awful. To listen to and watch. It is something that I remember seeming similar when I was giving him chest compressions. That fight to get breath in. We have in the past before all of this tried with my husband's help to all that I be in on his appointment with his GP because he could just not remember certain things. I have it in my head that he's been suffering tiny little hypoxic injuries over the past year before his collapse. Moments of unresponsiveness. Slurred speech, spasms, tremors, puffiness and weight gain. Swollen feet, an unexplained ulcer in his leg so many things. Chronic fatigue they said. An easy out. When I phoned up the hospital one day because I couldn't get my husband to stay awake for more than a few seconds for the 3rd/4th day running (chronic fatigue you see) and his speech had significantly started slurring a few weeks before...I phoned our surgery and said: "Hello I'm worried that my husband may have had a stroke or a small stroke" and was told a clinician would phone me. This resulted in a phonecall with me saying my husband was sleeping, on controlled drugs and I've been unable to rouse him and get him to stay properly conscious for a few days now. Also I've been told her has chronic fatigue or M.E. Her reply was "Can I speak to him". I couldn't believe what I was hearing but whatever so she listened to me about hi. Awake. Which took some 6 attempts and a lot of shaking. Then she proceeded to ask him questions mainly answered by slurred agreements or noises.

I couldn't even understand what I was witnessing at that point it seemed so ridiculous.

Long story short he had finally received an appointment with the go a few days later and even though he asked that I be allowed in because he needed my support I was blocked. They would speak to none of the family about anything. I had questions about his medication etc. But no. And here we are. In short he had been diagnosed with an accidental overdose which covers their backs nicely. How can someone who's cognitive abilities were compromised (and they knew fine) be in charge of his dosages. None of the points I wanted to raise were heard. His speech (I think they said "well you are speaking to me now and you seem fine" type of a thing). My argument sounds so thin but there's far too much to put into a comment box.

In short they have jumped straight to pregabalin and he ha spent a lot more time asleep. His speech is awful, so hard to understand. He doesn't want us to try and get them to try something else. I mean there must be something in between that is not a CD?! And worst of all... The running theme... Nobody told us anything. We have had to pull everything bit of information out of them about clots, physio improvement, we don't even think there is a neurologist at the hospital. It beggars belief! I'm absolutely fed up. We have lost over the past few 4 months, so much trust in those who work in the system, and the hospital(s)

Sorry... That turned into a bit of a general rant! Also I have not proof read so apologies for any typos or random sentences.

[Pairofboots in reply to ored13]

No need to apologise ored, it sounds like you have so much bottled up, loads of unanswered questions.

The history you state then to a point if he was self medicating, then an overdose could be possible, but I would guess that you were helping with his medication. Pregabalin damages the kidneys if overdose occurred (pregabalin isn't that easy to overdose on orally as in high dose, it induces vomiting, having said that, it is not impossible if overdose is taken in incremental steps over a period of time).

There sounds like there were a number of red flags, unexplained ulcer, swollen feet, tremors, puffiness, weight gain (possibly due to water retention and poor heart function), would to me suggest that there was possibly a degree of heart failure, stroke, and kidney failure.

The contact you had with the GP where you explained your concerns, and the GP asking to speak to your husband should have acted as a catalyst for an emergency response, not a face to face appointment.

With the history (I'm assuming that covid precautions) I can understand that only the "patient" would be seen, but again I would have expected the GP to have called an ambulance.

The type of pain your husband experiences from his back, there aren't any 'soft' pain relief, if he was already on morphine and pregabalin before, then pregabalin is the softest option (pregabalin has only recently been classed as a controlled drug, due to people using it in an illicit manner, it isn't controlled due to prescribed danger). There are far more dangerous everyday medications available at the supermarket that we don't even think about.

Please feel free to rant at me as often as you need x

[ored13 in reply to Pairofboots]

Thanks Boots. There are so many things. So many. And no I wasn't helping him with his meds because he was originally wrote capable. It was only during the 1st lockdown that I started getting quite concerned about whether he could manage thing himself. It's been a heavy year in general so thanks for offering to be an ear! 😀

[ored13 in reply to Pairofboots]

Hi again Boots!!! Turns out after pestering the ward a bit, that my husband is on Gabapentine and not Pregabalin. Not sure what this means but we can breathe a bit more now.🥴

[Pairofboots in reply to ored13]

Hi orid, Gabapentine, is a stronger pain relief (although I don't like the term stronger, I guess different is better). It like pregabalin has a number of uses, one being to treat neuropathic pain.

I'm glad that this is a comfortable, but as long as your husband is in hospital, on any medication is dispensed by a RN, so it is dispensed under strict please policy's and protocols so errors are minimised.

The main thing is that your husband should be more comfortable and safe, and that you can be more at ease x

[ored13 in reply to Pairofboots]

Hi,

So this is probably not something that we want him to stay on long term?

[Pairofboots in reply to ored13]

Hi, as long as it is used as prescribed, and it helps your husband to be comfortable, then I wouldn't be too worried.

You can ask your GP to have your husband's medication to be dossetted by the pharmacist so it is easier to keep track of. Usually the doses are issued in weekly batches, four weeks issued at a time. Each dose is marked when it should be taken. Takes the chance of getting things fuddled. X

[ored13 in reply to Pairofboots]

Oh I'd never throughout of that actually. Thanks for the suggestion!

[New_beginning]

Oh Ored13, I can feel your frustration and fear and I can only hope someone listens and intervenes with your reasoning with you knowing your husband and understanding of medication effects has had on him and your spot on voicing these concerns; stamp hard as if it wasnt for you and family voicing concerns on treatment right from the start, I shiver of the outcome if it wasnt for your strength challenging medical advice.

Im gutted you are having this issue and now having to deal with this situation especially with everything you have been though. Good luck and I hope you are heard x

[ored13 in reply to New_beginning]

Thanks. Bloody hell I'm so frustrated. Are they not meant to help and make things better. Why do I feel in edge and like I don't trust those I should with his care?!😞

[New_beginning in reply to ored13]

I really hope something is done this week and professionals act swiftly, thinking of you at this ridiculously stressful time, that should have been prevented x

[ored13 in reply to New_beginning]

I was waiting on a phonecall today and SURPRISE not a squeek. So we are going to give them tomorrow to respond and will then contact the clinical coordinator again and then get our MP's office involved again. I thought these days were behind us. I have asked for information on his clots as he is displaying the same cough which led us to insist that he have his chest looked at. I just have no idea what their playing at. But I'm absolutely shattered with the constant battles over the past 4 months!!!

[ored13 in reply to New_beginning]

How are you getting on?

[New_beginning in reply to ored13]

I really hope you get clarification tomorrow; I couldn't imagine being in such position with everything you have been through with such challenges. I couldnt say what I would do in writing would cause eye brows to reach back of head.

Today like every day fighting emotions and physical stress symptoms but looking at my husband thinking you are just amazing, whilst the visions just blasting away of the past 12mths, thinking how have we got here, what the hell is happening,how the hell has this happened.

Somehow we manage to get through;, we have to do things we shouldn't have to do, the uninmanageable things that could never be scripted for anyone to think possible, you just keep your strength and health in tact, it's going to be rough week. X

[ored13 in reply to New_beginning]

This is a thing that I'm quite worried about. I need to manage my expectations. But as you say. That feeling of "I can't believe you're here" but also sheer blind panic at where we are.

[ored13]

UPDATE: Well turns out after much questioning that my husband is actually on Gabapentine. Not brilliant but still not Pregabalin which we as a family were having sleepless nights over!