Drastic medication side effects

[Yakester]

It is such a crazy dance we do with our RLS drugs. I’ve had it for many many years...before doctors were able to diagnose it. Mirapex was the first rx I used. It worked for quite a while but the side effects caught up with me. I had sudden onset of extreme sleepiness while driving. Crossed the road into a ditch and couldn’t be seen from the road. In the hospital they abruptly took me off mirapax and started me on a gaba... after being on that for a few months I got so depressed and anxious that I couldn’t even go grocery shopping. So was prescribed antidepressant and anti anxiety. Those drugs messed me up so much that I ended up leaving a 36 year marriage. There were, of course, underlying problems but I lost the ability to cope. In the last few years I have worked out a system where I take prami in the middle to late afternoon and if I have breakthrough symptoms I take hydrocodone. I have managed to make this work until recently when I have more breakthrough symptoms and wake up in the wee hours of the morning with pain. I guess what I’m trying to say is that it takes some experimenting. Side effects can be life changing.

[involuntarydancer]

Fair dues to you. You really stuck at it. Would you consider taking Kratom? I find it great for break through symptoms.

It is possible you need to take a break from pramipexole to sort of reset your receptors. You could maybe increase the hydro codone for a spell and eliminate pramipexole temporarily - possibly supplemented by Kratom?

Also how are your iron levels? A drop in iron can set symptoms off, particularly if you are on a dopamine agonist.

I had that experience while driving. Luckily I didn’t crash - woke up in time but it was not a nice experience.

[Yakester in reply to involuntarydancer]

Ive tried both kratom and marijuana. I was so hoping the kratom would work, but no such luck. Marijuana just doesn’t do much for me in any way; either cbd or thc. My doc gives me a prescription for hydrocodone 30 tablets, 5/325 mg a month. I don’t know if the doc would write a prescription for more I think I would do ok with just hydrocodone and no prami for a while. I think I’ll ask about doing that. I will NOT increase the prami due to the side effects

My iron levels have been fine.

[involuntarydancer in reply to Yakester]

Ok, that’s not much hydrocodone. I would have thought you’d need a lot more. The difficulty is persuading your doctor ...

it is unusual for Kratom to be ineffective - lots of people don’t get on with it due to nausea and other side effects (also its illegality) but not often because it just doesn’t work. I too find cannabis doesn’t have much benefit for my rls (thc or cbd) but it is a fantastic sleep aid.

[Yakester in reply to involuntarydancer]

Do you know what is a common amount of hydrocodone used? I am very lucky that I don’t have an addictive chemistry. I had to take some strong pain meds when I had migraines and never had any problems.

[involuntarydancer in reply to Yakester]

Sorry I don’t. Maybe someone with more knowledge about it will be along to answer.

[Yakester in reply to involuntarydancer]

There seems to be different kinds of kratom. Is there a specific kind that works better than others. We have a store in town where I can get it. I have no idea about dosage. I’ve been getting it in capsules.

[involuntarydancer in reply to Yakester]

By ‘fine’ do you mean they (iron levels) are over 100? I wish I could get mine up.

[Yakester in reply to involuntarydancer]

Yes, over 100. Will double check my last blood tests.

[ookla in reply to Yakester]

In my experience, 5 mg is too low. It took me 5 mg of oxycodone (which is stronger than hydrocodone) to feel any symptom relief. I was happily taking 15 mg of oxycontin twice a day (which basically equals 7.5 mgs of oxycodone every 6 hours) until my insurance company refused to cover it. I hope you have better luck.

In my opinion, your "break through" symptoms are augmentation from the prami. I think you'd find if you got rid of the prami, the hydrocodone would work a lot better.

[Yakester in reply to ookla]

You are probably right. And it’s so hard to remember to take the prami in the late afternoon but I usually do remember. I take 3 0.25 mg tablets and I won’t increase it because of side effects.

[involuntarydancer in reply to Yakester]

That's quite a high dose of pramipexole. You are right not to increase it. I would second Ookla - you are probably augmented on it. Am so envious of your iron levels

[Bganim1947 in reply to Yakester]

Been there. You may want to consider Lyrica combined with Tramadol. It has relieved me almost completely of RLS symptoms. On the rare nights when i’m Overtired or used my legs too much, I may get a mild discomfort for a short while. So mild, I can’t really call it RLS. When I do get that discomfort, Magnifile Relaxing Leg cream— an over the counter team or online—applied liberally like applying hand cream to my leg causes it to disappear—the discomfort not the leg—in a few minutes or almost instantly. 🤨

[Parminter]

I have been given methadone for breakthroughs, and it works brilliantly. It is in liquid form, and I take one teaspoon, which is 10mg methadone. It works in 20 to 30 minutes. I take the med, lie down with my legs on a hot pad, and wait for the misery to end, which it does. The only side-effect is constipation. There is no hangover effect, it seems very 'clean'.

[TEAH35]

I know that I couldn't; wouldn't; (won't), live without it. That's the whole problem with it ... even tho it has such hideous side effects, there is absolutely SFA on the market that gives you the 100% relief from all symptoms like it does. I'm honestly not kidding .... no Sifrol, (Oz version), no me.

It's scary stuff hey.

My girlfriend was recently pregnant and she a had a wee taste of RLS in her last trimester. She has had the baby now and of course the restless legs has disappeared. She rings me up and goes, 'how are you still alive'?

I go but now that you've had a wee taste of what RLS is like, can you imagine the amount of suffering one has to endure having it as severely and chronic as I did for 24/7 for 48 years, not having any idea what it was, not knowing that I was actually NOT the only person in the whole world being tortured so inhumanely and of course, the doctors didn't give a shit, (and quite frankly many still don't). My dream is to have a GP that actually has it. I did once, (for one whole day) thought I'd died and gone to heaven.

Can you please tell me how to get in touch with these lawyers that are taking on the class action suit.

[Steve2777]

Sleep issues and Reprinorol ruined my 20 yr marriage. Managing for now with antidepressant and trazadon

[Eryl]

Following being put on beta blockers for hypertensio, and suffering from the side effects, I investigated dietary solutions, and found one that got me off beta blockers completely. Knowing the power of dietary changes, I analysed my diet and, with the aid of a food diary,eventually found that what causes my rls is high blood sugar, so I avoid all sugar, sweetened foods, and limit high carbohydrate meals. I have now almost eliminated my rls without medication.

[funnyfennel]

Its scary....I am still on x2 prami and 1 oxy(shortec) but nights are never easy...may fall asleep at first but only for an hour or so, then its on/off all night Luckily, as said before, being retired, I can rest for a while in bed in the mornings and sometimes in the day. thing is...life is not normal and I have to hide it from people as they just cannot understand the shortage of energy due to lack of sleep. Too much exercise...worse RLS...Too much stimulation from socialising...worse RLS....irregular hours worse RLS...and diet of course.....I fear travel and losing my drugs. I feel like an addict and see no way of ever stopping these damn things....

Sorry, just had an outburst....but sharing helps...